Every minute counts

Every minute counts: Thinking gets me in trouble.....

2011-05-19T08:14:00.000-06:00

Every minute counts: Thinking gets me in trouble.....

Thinking gets me in trouble.....

2011-05-19T07:59:00.002-06:00

I have been reeling from another loss in our tight nit WS community. It is so hard to see another parent loose their child. I go through all those emotions from Abi's ordeal that I thought I had repressed well enough....apparently not. There is a growing list of families that are my heroes because they have been through the hardest thing in life, burying your child. Another dear friend was pregnant with triplets and one of her babies has already passed away, leaving two...one of whom they are told will not live past birth...my heart breaks daily for what she is about to face. I know what that loss looks like from the outside...I have many friends who have angel children.I also had a glimpse myself of what it felt like,for the briefest of times, to be told that your child will not live... only for some reason, I got Abi back. That just brings out all the feelings of not being worthy and trying to find someway to make myself feel like I have changed and I am worthy enough to still have my child. I will never understand why I still have Abi when so many have lost their babies around me. I know at the time of Abi's troubles there were some very close friends who needed to believe in miracles again...so maybe that is why. She is here so that people still believe that it can happen...miracles do happen everyday....I just don't understand the reasons for all the loses around me. Some days I think it is just a preparation for what will be in our family's life. I know that I will be the one someday who needs the support too. I have been told time and again that I will out live my child.

just muddling through it...

2011-04-07T07:13:00.002-06:00

Personally things are not well in my head. I am trying to find new ways to handle it all but I just don't know where to start anymore. With all the stuff surrounding my family and my parents and siblings....I just honestly find myself checking out. I hold everything at arms length anymore and find it hard when I can't do that...I can't cope with it...I am falling apart from trying to hold it all together. There is just so much going on and I find it interesting that I can handle the medical stuff so much better than all the emotional stuff that is being thrown at me from all sides. I'm just tried of trying to be the rock for all of my family members and function at home without exploding due to all the stress.....

Abi's TV debut!!!

2010-11-24T08:22:00.001-06:00

I'm still waiting on the news version of it but this is what I got an it is pretty good :)

My dad

2010-10-11T07:02:00.002-06:00

So to make matters more complex around here...my dad had a heart attack two weeks ago. He is doing a bit better but he is still not himself. He can not walk very far without having to stop and rest for a long time. I always knew he would have one( his family history includes nothing but heart issues)but I still didn't expect it.It still hit me hard. I think alot about what life would be like without him around. Even though we have not always had the best relationship, I love him dearly. My kids love him dearly. It is scary. So this is where I am again...trying to make sense and enjoy life again...knowing that it is far to short not to enjoy.

good things

2010-09-22T06:36:00.003-06:00

Abi has been working on potty training again and we have made it almost two weeks now with no accidents. She has finally done it!!! I am so happy. After the whole tethered cord surgery and 20% chance of ever getting to this point...I should know that my daughter will always fall in that little percentage( whether good or bad) this time it was good :) According to the tests run every few months her bladder was getting better so we were hoping that it would just click. We were given medicine that was to help but in the end opted to quit the med because it wasn't really helping anyway and I figured she doesn't need any more medication in her system...now I'm thinking that the med may have slowed the whole process down. After talking to a friend who had taken the same med, she said that it did not help her bladder spasms it made them worse...well Abi is not really good at telling us there is a difference so I went with what my friend's experience was and made the choice. I figured it wasn't really going to change much if it was working, she was still in diapers, and if it didn't work she was still in diapers. Then I got the surprise of her starting to tell us she had to go after she had stopped the med for a few days. Amazingly happy around here right now!!!

trying to find the good

2010-09-16T13:52:00.002-06:00

emotionally things are tough right now and really they have nothing to do with WS. There is just so much going on in our lives. So much change. I should be excited about some of it but most of it is just dread of the unknown. Chris is not liking the job he is on right now. They are not paying him enough to deal with what he is dealing with but he is afraid to talk to them about it for fear it will make him made and he will be wanting a different job. Buying 5 acres and trying to sell our lake lots...deceiding whether it would be better to move to that 5 acres or stay where we are school wise...health issues with my brother/father/extended family.... the fact that my kids are growing up WAY too fast. It all just makes my head spin. I just need to focus on one thing at a time and right now that is not a possibility.
Maybe I can work it to get out and see a friend this weekend. I think I just need to be able to talk to someone in person and get this stuff out of my head. Sometimes that is the best thing...just get it out so that it can be dealt with :) So there may be more posts that just are me rambling about not much of anything important...just have to talk to someone!

matters of the heart

2010-08-11T07:16:00.002-06:00

When my uncle had a heart attack Saturday morning it set in motion all the memories of Abi's ordeal. I hate that it is like a flashback in someways...all the heartache, not knowing and just rug-pulled-out-from-under-you feelings. My uncle is doing better but he is not thinking he will make it much longer which makes you think he won't because if he doesn't fight hard, he won't be here. I am so glad that Abi knows nothing but to fight for survival, she will never give up. I see the pain in my cousin's face when her dad says stuff about plaining his own funeral...and my heart hurts for her. I would be mad at him for giving up too...he was given a second chance and I hope he finds the strength to use it. So this is a look into of where I am emotionally right now...roller coaster of emotions and not much organization to them. I am also thinking very much about some of my WS friends who are going through so much right now..sigh....

I hate school.

2010-08-04T16:04:00.002-06:00

There are so many reasons that this sentence is true. My older kids leave most of the day and I miss them. AND I get reminded how much Abi is not "normal" by other parents, Abi's so called "friends", drs....I just hate this time of year and the consant questions as to why Abi is not at school and then the looks of "pity" because people feel bad...the school district sucks and that is the main reason my kids can't go to school...I DON'T trust them with her. At least the older kids can call me if something is not going right. SIGH~

17 years ago...

2010-07-29T07:47:00.002-06:00

I met the love of my life. We met by chance, with the help of my friend with a big mouth who yelled at him as we drove by :). He looked all over the town for my car the next night to find me( yes, it was a small town but still). Then we just knew within days that we were meant to be together. It didn't matter one bit that we were both very young...when you know, you just know. There is no other way to explain it. My grandparents were married after knowing each other for two weeks, my parents knew each other for 6 months....they are both still married...so not much either one could say to me about not knowing each other very long.:) Four months after we met we were married. 11 months after we were married our first son was born. We still love each other and hate being apart. He gets me...doesn't always agree with me...but understands (usually) why I am the way I am :)

Busy...at least until school starts in two weeks...

2010-07-27T07:44:00.002-06:00

In two short weeks my older kids go back to school and then it is just Abi and I. Right now things are so up in the air. We have no ABA therapist coming out( hoping in the next week to get switched to the new one) so basically we have mass choas around here. there is no structure left and I can't find the energy right now to get any. Abi does not do well when there is no structure so....life is interesting. These next several weeks will be hard for all of us, when the kids go back to school Abi melts because she misses them so BUT we get a schedule back so that part helps out.
So I am trying to enjoy my kids and get what I can get done with the older kids' help. I have to have someone watch Abi or nothing gets done and they help me out there. I really hope that this year Abi does better when they go back to school...it is hard to get her back in a routine again once we are out of one.

Revial

2010-07-21T12:46:00.002-06:00

after much thought...I am going to revive blogger....or at least try to. Facebook has too many "friends" that I don't feel get it like the close one's from blogger did. Who's on board with me???

2010-07-12T11:22:00.002-06:00

A few pictures form the national convention in St Louis. I promise I will try to do a better job of blogging too....honest I will try. I am busy checking Facebook now all the time and don't get to blog near enough.

this is how it is...

2010-04-28T06:29:00.002-06:00

Chris yesterday came home and was talking about his friend Charlie whose, son died 4 weeks ago. Charlie's son took his own life at the age of 23. Charlie was having an off day and called Chris to talk. He asked Chris " How do you deal with all of the stuff with Abi" Chris said that he explained to Charlie that in no way is it the same as with his son...we know Abi is sick...he had no warning at all. Chris said " I know that I will bury my child someday and that is hard. I also know that the other three will keep me going" When Chris told me this, I started crying. It never fails that when Chris talks about stuff I end up a mess. He never talks about any of it. He just moves forward. I am always the one who thinks too much :) So when he starts thinking it really effects me. I know that what Chris said is true. It will happen that way. We will more than likely outlive Abi. That scares me. She keeps us all bonded in a way that no on else could. Charlie lost his only son. The only good thing that Charlie has to hold onto is a grandson that he is trying to get visitation rights to.I just think about all of those who have lost their children and pray for them. It hurts me greatly to know that 7 years ago it would have only bee a passing thought and now it is much more real to me.
Also, my older brother Shawn is not doing so well. He has had three more skin cancers cut off yesterday. That is the third time already this year that he has had them cut off. The disease that he has is progressive and cancer is one of the "side-effects" of it. It is just getting alot more frequent now. He can no longer walk without falling. His motor skills are horrible. He falls now and can't even attempt to catch himself. It is hard to watch my brother failing before my eyes. Even harder to watch my parents pain and reflecting on exactly how that feels to watch your child slipping away, even when your child is 37. Life seems to be so complex and some days it is hard to find the joy, but I will still try.

and life continues to be uneventful :)

2010-03-31T18:31:00.002-06:00

I love that I have nothing to write about!!! I know, I know I could blog about the good stuff too but I just feel the NEED much more when I am having a hard time. Yesterday at therapy, the OT surprised me by telling me I was doing a great job with Abi. She said that most of the families who home school she tries to steer back into the school system but she thinks that Abi is the exception to that rule. She said that Abi has made amazing gains in the last 6 months and she knows it is all due to us and not to the hour every other week she sees her. It is so nice to hear that I am not messing up too bad. I still think Abi could be further developmentally if she went to school because honestly I am not the strictest person when it comes to working with her in the " sit down and do paperwork kind of way". The OT was writing words for Abi to copy and Abi wanted to do her pets names so the OT wrote Wren for Ren and Abi says to her " there is no W in Ren" I was floored that she remembered it!!! Lindsey and I have been working hard with flashcards of different sight words and names and she is getting it!!!! We play a game where we have household objects( couch,pillow,bed, etc) on cards and we read them and then Abi goes and puts it on the object. Usually while wearing skates because she loves them so much :) It is working though!!!!
In school Lathan has the most reading points in the high school with 420 and Hannah has the most in her school with 650. ( yes, she has more points than anyone in the high school :) Hunter is just waiting for school to be over and nice weather to be here so he can be OUTSIDE!! He is also loving baseball. That is really about it...oh and working on the house :)

Things are going pretty good...at least with the kids

2010-03-04T07:56:00.002-06:00

The kids are all doing well. Lathan will be going to the state DECA compititon in two weeks. He will be gone for 3 days, which I hate because I will miss him. I am so proud of him though he works so hard at everything he does. Hunter will start baseball soon.Hannah has nothing going on except hanging out following after the rest of them. We need to get her involved in something but don't know what yet. Abi is just Abi...and we will start our Special Olympics young athlete's program next week. That should be fun for all.
The kitchen project...UGH!!! I hate remodeling. We have the walls torn out in one room but due to the fact that we are taking two rooms and turning them into one....it's just a mess. Plus we have electrically work to do and my dad stresses me out about it. He is an electrician and there are things he wants to do that don't NEED to be done but talking him out of it is another story...even though it is my house!!! Frustrating!! I just can't wait for it to be done already!!!!!!!!!!

Everyone is growing so quickly...

2010-02-17T08:27:00.002-06:00

It amazes me daily how fast my children are growing up. It seems like everyday they are getting bigger and needing me less. Which is the point...but makes me a bit sad too. The boys are both getting their schedules set for the next school year...I will have two high schoolers and one middle schooler....and Abi. Sometimes I think I can't even think about sending Abi to school because I wouldn't know what to do with myself. I would probably just worry all day long. This way she keeps me focused on her and I don't worry as much :)...gosh, could you imagine how bad I would be if this is not worrying too much? LOL
I am getting our plans set for St louis this summer. I can't wait to see everyone. there are not going to be near enough days in that week!!!!

It's been too long...

2010-02-09T12:56:00.003-06:00

It's been too long since I have written on this blog. I can not believe I have not had more to say :). There really has been a whole lot of nothing going on. Just getting through the winter at this point and trying to stay warm. The kids are all doing good and staying healthy thus far so no complaints there. Abi medically is on a plateau again and we are just enjoying it. She does seem to be losing weight again so we are focasing on that AGAIN!
It's been too long since Chris and I have gotten away together without the kids. In fact it was 6 years ago on our 10th wedding anniversary and we left for two nights but came back early the third day because we missed the kids too much. I can say that going to Las Vegas with Chris on his business trip may not have been my place of choice but it was nice all the same. You see I do not drink, do not dance, am just all around boring...maybe because I have been "mom" for so long maybe because I have always been kind of a loner who hates crowds of strangers. Yeah I know Vegas is not really the place to avoid crowds :) It really was okay though. I got to meet Mercedes( another WS mom) and hang out one day,I went to the movie by myself (which I have never in my life done) and yes...I read books and watched the TV shows I wanted to watch while Chris was gone during the day. It was relaxing though. Chris and I went out a couple of nights and walked around a bit. Really nothing at all exciting. Nice and peaceful.
Getting to meet up with Mercedes was so very cool. I know that she and I were both a little nervous about meeting in person for the first time but I don't even know why we were because it was like we have been friends forever. It is always so nice to just be able to be yourself and know that you are accepted. That when you talk about the weird stuff your child does..they have stories that match. I always feel like I have to explain Abi and I didn't have to do that..we could just skip to the "friends who understand" part of it all.so a great big...HUGE...thank you to Mercedes for taking the time to go hang out with me :)

wishing she was here....

2010-01-05T15:28:00.002-06:00

This is my favorite picture of my dad's parents. I have been told that I look quite a bit like my grandma( which is fine by me). I am missing her horribly lately and have had many dreams about her. She passed away on 4th of July 9 years ago this year. She was one of the few people who I looked to for advice when I was having a tough time and I miss her wisdom. She had 8 children, two of whom passed away as adults..her oldest at the age of 33 and the youngest at the age of 22. She also outlived two husbands. My grandma was so very strong and she was my hero. The day she died I went and saw her for the last time and she said to me " I am proud of you. You are a wonderful mother. You make me so very proud, don't ever forget that"

I just miss her. I wish she could have met Abi, she would have loved her so very much. I know that she is looking out for me still she always did when she was here. :)

outside my window this week....

2009-12-14T06:23:00.002-06:00

Outside my window …The sun is slowly creaping up.It is going to be a cold day again.(sigh)
I am thinking …That I wish my life were a little more like a romance novel and a little less dramatic in theme.
I am thankful for … the fact that my sanity is holding on. I am really having a tough time as I do every year at this time of the year..just letting myself be happy. Abi's 7th birthday was yesterday and I was a grump all day. I am sorry for that. At least i wasn't grumpy toward her just Chris.
I am reading … the same book series...no time left over with Christmas coming there are few minutes to myself.
On my mind …So many things. To start with, marriage. Chris is again going to Vegas in Feb even after he agreed not to go again. Surprize! he told me this weekend that his tickets are bought and everything is ready for him to go. Then when I get upset he says that I am going to ruin the next two months for him...maybe talking it over BEFORE you commit to things might help that out,especially when you promise one thing and then do the opposite. Abi's birthday is always an emotional time. There are so many times that I don't think about her disability but her birthday is not one of those. That day just reminds me how much our lives changed. Not for the worse..just much more complex.Then add her cardio appointment on the same week and I just am emotionally spent before the day starts. I also found out this week that my older brother will now have to have a colostimy bag. My brother is failing quickly. He is falling all the time. He can't cross a room with out stumbling. It is tough to watch. He mentally knows what is happening to him and that makes things much harder too. His hearing is all but gone and he can not speak and be understood, his muscles are failing him quickly and I can't help but think...what if I end up watching the same thing with my daughter...It rocks me to the core.My brother and I have a strained relationship anyway because of our childhood but it hurts to see him failing right before my eyes..I can only imagine the pain my parents are going through.
We’re learning …few things go according to plans.

Noticing that … I need something to pick up my spirits and it better come soon :)
From the kitchen …I should be making cookies and candy for Christmas only I am just not in the mood to do it. Maybe next week....
Around the house …We have beautiful paperchains and pictures of trees but the thing that makes me feel the best...the wonderful faces that I love so dearly on all the Christmas cards that we are getting..you guys are the best!! Every card I get makes me realize that I am not alone..thank you.

One of my favorite things … My children. They keep me going.

outside my window...

2009-12-04T06:40:00.002-06:00

Outside my window … It is still dark and VERY very COLD!! ( have I mentioned I hate the cold?)
I am thinking … About the last 16 years. Today is our wedding anniversary so there is lots of remembering( good and bad). Chris and I have been through so much together. we started out so young and have really grown together and for us it has worked out.
I am thankful for … My kids. If it weren't for them some days I don't know how I would do it. They all help me in different ways and make me a better person for all that they teach me through their eyes. It is amazing that all four of them are so much alike but in the same breath so very different!
I am reading …Still trying to finish the "outlander" series...haven't had time to pick it up for more than a few pages at a time and it frustrates me!
I am hoping … for good news from Abi's doctors appointments later this month. Next week is nephrology and the following week is the dreaded cardiology( dreaded because I always fear the worst...but I love her dr)
On my mind …what's not on my mind?!?! Mostly the fact that our anniversary, then Abi's birthday, then Hunter's birthday, and then Christmas are filling up everything I do anymore!
We’re learning …how to breath. Take a deep breath and just try not to think too much about the heavy stuff :)

Noticing that …The times seems to really fly when you age. You know they always tell you times goes faster with age and boy are they right! There never seems to be enough time anymore. You turn around and the year is done.
Pondering these words …"where are you Christmas?" I just don't ever seem to get in the christmas spirit anymore and I really wish I could find something that inspires me again.
From the kitchen …Hannah and Abi are always helping me cook. Hannah has started printing out reciepes from food network so I am in trouble...the girl has some weird ideas of what would taste good together...oh well at least I don't have to cook it...she does all the work!
Around the house …Trying to get in the mood to decorate for the holidays.

One of my favorite things … Just being able to spend time with my kids and husband. We have lots of fun together, when we get the chance to all be in the same place at the same time!

35 years...

2009-11-19T08:25:00.002-06:00

Today is my 35th birthday. I am thankful for so much in my life. I think the last few months and the things that have happened in friends lives have made me focus more on the things I am thankful for. There is so much good in my life. My children and husband and the best group of friends EVER! Thanks guys!

Now on to the rest of my post. Thanks to Tree for the idea and then to Michelle for doing this too. I think this is a wonderful idea!!!!!

Outside my window … Today it is very "spooky" as Abi would say. The fog is so thick that we couldn't see the neighbor who said "hi" to us as we went to get in the car. It is cool about 40 degrees and wet. It has been raining for the last few days. I love being warm inside my house but hate that my hubby has to work outside in this. He comes home wet,cold and very tired.

I am thinking … about all of the things I should be doing today. Cleaning,laundry,baking pies to take to Chris' dad's house this weekend...what I want to do though is read my book and watch " my sister's keeper" :)

I am thankful for … My family. I love my husband and kids so much and I am so thankful to have them. I am also thankful for the surprise that Chris' mom came by my house last night and brought a b-day cake and present for me. Something she has never done in the 16 yrs we have been married...she did something just for me and I really appreciate it. I am thankful for Abi's therapist Lindsay who is going to come babysit Abi so that I can take Hannah to watch "New Moon" during the day tomorrow. Of course, I am forever thankful for all of my friends that I have met because of WS, without you to center me and understand me I do not know how I would manage. I am also thankful that my brother is coming home from training for the next few weeks so I get to spend some time with him.

I am reading … I am reading the "outlander" series, thanks to Laura's suggestion and loving it. I am sad that I only have two 800+ page books left in the series. It is a wonderful love story with alot of history mixed in it. Thanks Laura.

I am hoping …that I can be happier this season and not be as down as the holidays usually make me.

On my mind … Trying to re-organize my life and make things simpler than they are.

We’re learning … to not sweat the small stuff.

Noticing that … My kids are growing up so fast. I can not believe how much they have changed in the last year. The older three are become adults quickly and I am so glad to still have a "baby" at home :)

Pondering these words … " Trying to clean while the children are at home is like trying to shovel the sidewalk in a snow storm" SO TRUE!!! :)

From the kitchen … Baking a turkey because that's what I want for my birthday. Baking pies for Chris' dad's house this Sunday.

Around the house … Lots of stuff. The kids keep bringing home more stuff and I keep trying to clear it out. All of their b-days bring stuff into the house and with Christmas coming I must get some of the old out before the new comes!

One of my favorite things … The time I get to spend with each of my kids one-on-one. I love that time with them. Each of them is so different and they are changing so much. Before I know it they will be moved out and starting a new chapter in their lives so I want as much time as I can get with them now.

So much and so little...

2009-11-16T08:10:00.002-06:00

So I haven't updated this blog in awhile. I guess Facebook really does take over some of the need to connect feelings :). There has been so much going on in our lives and at the same time, nothing really major. Lathan's birthday was last month and he turned 15, Hannah's birthday was last week and she turned 11. My birthday is Thursday and I will be 35. (Doesn't seem possible to be that old!) Our 16th wedding anniversary is the 4th of Dec, then Abi's 7th b-day on the 13th and Hunter's 14th b-day on the 18th. That is what makes up the crazy last months of the year for us! Everything is changing, the kids are growing up. There is some sadness to that but there is also alot of joy in seeing them grow and understand so much more. Abi has learned a few of the harder leasons this past week. While watching Daddy play dodgeball, she was hanging out with a girl that she talks to ever once in awhile. This little girl is 4. Abi came back to me in tears and asked me to hold her. This little girl told Abi to " get away from me! You're weird!!" several times very loudly. ( note: this girls parents were no where to be found) but it broke Abi's heart and in turn broke mine. I hate that this is the way my child is viewed. Not by the masses( there are too many people who love her) but by the ones she should call her peers. It stings. I know that my older kids have been given the tools to deal with this type of behavior but they never had to deal with it at such a young age and so in-your-face. I wish that there was some way around this lesson in life. There is no easy way to handle problems like these. They do leave scars...on all of us.
Abi has been not acting up to par here lately too. I worry, (as most of you know) about what will be in the next year. Abi has her nephrolgy appointment the first part of Dec and Cardiology the middle of the month. I am so afraid of the news the cardio will give us. I just do not know where I will find the strength if it comes to a proceedure. I know that is where we are heading and it scares me to the core. I do not know how to hold my family together if it does come to another surgery. We all hang on by a thread and can't breathe with the thought of anything happening to her. When she acts the least bit off...we all panic. She is looking weak and sleeping more. There is just something when you look into her eyes that is not right. You can just tell...I just haven't been able to figure it out. We have done a couple of other tests here and there to rule out the easy stuff but have ruled it all out...now what? Maybe it is just her, maybe it is nothing but I can't take the chance that it might be somthing. I have to search and look...just in case.So lots of naps and checking temps and drinking fluids and taking blood pressure in the hopes that it is nothing but there is always that fear that it is something mom can't fix on her own. There is always something. I know that. I accept that, but I will not stand by and do nothing. If there is anything at all that I can do if it is her heart then we will know in a month for sure until then....I rule everything else out. Don't get me wrong, she is playing and laughing and being herself but there is just something in her face that tells me to keep watch.

Faith...

2009-11-04T08:38:00.004-06:00

"Faith is taking the first step even when you don't see the whole staircase" Martin Luther King,Jr.

Yesterday at our speech eval at the hospital, more questions were brought up in my mind and then I get out of the hospital to a phone call from Hunter's school. First off the speech eval. I knew how it would go. I am not blind. I was asked what I thought Abi would test at and low and behold that is where she tested. That didn't mean I wasn't hoping for better news. Abi tested in the severally behind area of the tests. Testing at 3-4 years old. Which I knew going in was where she would be but it is still a sucker punch. Of course this woman who has never met my child thinks that I am making the wrong choice by homeschooling her-i.e. the testing results...BUT she is not the one who has to live with the knowledge of the school district not watching out for my child. Could Abi being testing better developmentally if she went to school...probably...is that really what we are worried about in the grand scheme of things...not really.Yes, I want my child to fit in and be as "normal" as possible but I also am selfish enough to want my child.See the thing is Abi is happy with things the way they are. We skipped the hospital for illness for the last two winters,she hasn't had the flu in years,she does get sick but not to the point of hospitalization.We don't have to give her attention meds because if she can't sit still and do the work then that's fine we stand up and do the work,or lay on the floor, or hang upside down...as long as she is doing it,how, is not important. Her blood pressure is under control( as much as it can be) her anxiety levels are lower than when she has attended school in the past. Is it a huge commitment for me, yes. Are there days when I would LOVE to send her to school and just be able to not think about Abi and her needs for a few hours...hell yeah! BUT I know that this is what she needs and this is what I must do. I also know that my older kids would worry as much as I do if Abi did go to school. I know that the thought of the cardiologist appointment this Dec. gives them the same flashbacks it gives me. I know this because Hunter is having them now and his cousin Chloe is the reason. Chloe is still struggling to put weigh back on and to get better. Hunter knows this and he spends more time in the counselors office than in the classroom anymore. He is so afraid that Abi and Chloe both will not be here for much longer and the horrible thing is I can't tell him that they both will be here for 10 more years, or even one more year...anything can happen, there are no guarantees to comfort him and there is nothing to do to prevent it from happening. AND IT SUCKS! I am at a loss as to what to do to help Hunter. Most days I can't help myself out of the hole I am in and now I must find the strength to hold him up too. It is so hard to comfort your child who is so much bigger than you are. It doesn't make since to hold him and tell him it will be okay the way I used to when he was little. He knows enough to know that "mom can't fix it" and that sucks too.There just is so much that I have to think through and hope that I am getting it right and not making it worse.I am making Hunter stick it out at school even though I know he is worried, hoping that he will be able to focus on something other than what could be...How do I teach him not to let the worry consume him when it consumes me? Faith, is the only thing I can come up with so if anyone else has any words of advice,please share!!!

Celebration of Life...

2009-10-24T08:30:00.003-06:00

Sophie became an angel on the 18th after complications from open heart surgery. Sophie had Williams Syndrome just like Abi and faced some very similar medical battles. Sophie was not able to recover as Abi did and I think all the time about the fact that Abi was so very lucky to have made it at all. My heart breaks for this family but they have shown so much courage and strength that it amazes me.

Sophie Elise Henkel 3/24/07 - 10/18/09
Sophie's Celebration of Life Saturday 2 pm. This is going to be a huge celebration of Sophie's life. The location is our church not a funeral home. no casket. There will be balloons, flowers, very colorful. Sophie loved roses, balloons..., cake, and music. Sophie loved parties. Children are welcome. Sophie loved colors, come colorfully dressed to celebrate her life.

what you've been missing...

2009-10-13T08:19:00.003-06:00

I haven't updated in awhile and I totally did not update on my oldest son's b-day ( bad mommy) Lathan turned 15 on Saturday and worked most of the day, then had friends over. We were busy getting kids to and from on Sunday and then Monday Hunter ended up sick. It is Tuesday now and Hannah is sick too. I am really hoping that it stops with two but I am preparing myself for the rest of us to get it. Hunter has the flu that has turned into pneumonia...Hannah, not totally sure but flu is a yes, pneumonia not yet... I am really just trying to survive it without getting sick myself!

" I'm not crazy, I'm just a little unwell..."

2009-10-07T08:38:00.002-06:00

I have forgotten how much I love Rob Thomas' music. With matchbox 20 and after. The title is from one of his songs. I especially love to listen to the acoustic versions on youtube. In fact I listen to them while I cook and clean.
I think that things are starting to look up, but I always seem to be just waiting for the next shoe to fall. That is not the best way to go through life but it seems to be what I do. I think through all the bad that can happen to prepare myself( at least that is what a pscyologist once told me) in case it does. If I think through it then it seems like I can handle when it happens better than being shocked into handling it. I do not do well with change anymore. Somedays I think spending so much time wiht Abi has made me more like her. My fear of EVERYTHING anymore makes me more like Abi than like I used to be. Maybe there is truth to that...or Abi just picks it up from me. :)
I filled out some psych paperwork for the school yesterday...you know the ones where you rate how well they deal with different things and what they can do...I have filled them out enough that I know what the scoring of it will be because I have done the same forms for Louisville and they actually explained it all to me. What they are looking for, etc. Abi is still highly anxious, doesn't like change....but I could anser some of those questions the same way for me...mostly because I want to avoid her reactions. Some days I do feel like I am losing my mind and every little piece I have left of the former me. Maybe that is not a bad thing though...I had many issues before too.I do not know how to replace all the fear with accepting that this is just the way it is. I have never been one who likes surprizes. My kids prove to me everyday that surprizes, good and bad, are just part of it all.

Pictures from our Fall picnic...

2009-10-06T07:36:00.002-06:00

We had alot of fun this past Sunday hanging out with our WS friends. There never seems to be too many of us at one gathering but there is always a couple of new friends to add to the mix. Now we are trying to come up with a Xmas party of some sort. I didn't get many pictures because Chirs had the camera and I am usually the one who takes all the pics!

Make photo slide shows at www.OneTrueMedia.com

complex thoughts...

2009-10-05T11:23:00.002-06:00

You know, I am starting to think that I should make this blog private. There is much that I feel like venting and I am afraid that I do not know who will read it or pass it on. Those of you who have made yours private...do you like that you did? This weekend there were so many emotions for me to go through. From a visit with my parents and older brother who health wise is going downhill very quickly to a WS picnic on Sunday night. None of my weekend was without time for reflection and it makes me wonder what I need to do now. I am thinking that I need to get these emotions out but I know that no one really wants to hear the very-depressing-at-times-healing process. It is a process and right now I have much to work through. Maybe a journal is the way to go but typing seems to be therapeutic to me in may ways. I hate writing long hand anymore. So much to think on.... I know there are so many people who read this blog who help me in all the important ways by believing in me and the fact that I will be able to process all of this and come out a better person for it. So you may be getting an email saying this blog is private or...I may just move on to something else for me and keep this only about the kids....like I said so much thinking and deciding....

PT/OT evaluations

2009-09-29T12:34:00.002-06:00

I have to say that my protective bubble might have a slow leak but for now...it remains in tact. We went up to the hospital and saw PT first. She said that Abi really is doing great, we need to focas on endurance/strength and wearing the DAFO's that we have that have been collecting dust because I can't seem to force myself to put them on her in the Summer. So I will be good and start putting them back on her again. So PT thought that the best way to strengthen/build endurance is to swim...yeah! That is so Abi's favorite thing to do right now so why not run with it. Balance is another issue but the PT thought as long as we keep working on yoga that it may be enough to get us by for now. On to OT...funny thing was that when the PT handed her off to OT she says " Kelly, I found you a great sensory kid!" and that was totally true! We sat and did some table work part of the LAP(?) test...but that didn't last long before Abi was begging for the swing and the ball pit :) So we then moved to those things and talked. The OT feels that yes Abi is behind( but we all know that) BUT she is learning on the curve. Meaning that there are not gaps in what she knows, that we are not missing things...she just is slower to get it than others. Yes, she tests about 3 years old, but that's okay because she does EVERYTHING she should for that age. She has some skills that scatter further up the scale which just gives us direction. Both of the therapist were very nice and both think that I do know what I am doing ( or maybe just appear to know what I am doing, does anyone ever really know? ). They were more than a little concerned about the "homeschool" thing but once they started talking to me and asking me what I did with her...they are impressed with what I have come up with. Of course, I just have learned from watching all the really great therapists that she has had over the years :) with a little bit of on-the-job-training with the older three...
I am totally comfortable handing my child over to these therapists. I do not question their motives or their ability to handle whatever Abi throws their direction...and rest assured she will throw some kind of curve at them :) LOL Maybe just maybe, I am ready to walk away from the school totally and believe that I can do this, or there is help out there if I can't do it on my own.

My oldest son....

2009-09-28T06:13:00.002-06:00

I have to say that Lathan is one of the best kids you will ever meet. He is kind,smart, caring and very responsible. He got his feelings hurt over the weekend by his grandmother( Chris' mom), and it makes me so angry. He got a phone call earlier this week and she talked to him about taking him out for his birthday. She told him that she would come on Sunday and pick him up to deciede on a place to eat lunch and where he wanted to go shopping. So he was getting excited about it. He talked about it on Saturday on his way to work. He talked about it Sunday morning. Then about noon, he started watching for her. She never showed. He kept watching, still no. He actually went outside and sat to wait at 4 pm thinking that maybe she ment dinner, not lunch...again no grandma. He went upstairs at 6pm and didn't come back down until it was time to tell us good night. It kills me that he was treated so wrongly. Of course, Chris says " he just probably misunderstood her" my response...he is 15 yrs old I trust that he understood the conversation just fine. Even this morning, he stated the fact that " it really sucked".

A Night Out at Yankee Stadium - ABC News

2009-09-27T17:08:00.002-06:00

This is a news story about a camp that my older brother goes to. It explains a little bit about the disease that he has.

A Night Out at Yankee Stadium - ABC News

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Friends

2009-09-25T08:07:00.003-06:00

It seems that I spend so much time on my own lately. Okay, not on my own but away from other adults...that it makes me feel like there is no one who understands. Then I thank all those computer nerds out there... I have Facebook and blogger. Without those lifelines I don't know how messed up I would be right now. Just being able to keep in touch through the computer is really nice but I really, really need to just talk to someone. Thankfully that should happen next week and then again the first weekend in October. I can not wait to meet up with Tara next week. I have no idea what we will talk about but honestly we won't have to talk at all...just to be in the same area as someone else who understands is like winning the lottery! It just seems to lift some of the weight that never seems to get lighter, it just gets added to. Everything is complicated anymore. It is very hard to see the light at the end of the tunnel. I just think about all that has to be done before the end of this year when we go back to our big doctor appointments and I just really want to hide from all of it and pretend like it's not true...any of it. I want to think that I will just walk in and they will say "abi's fine, no worries." When I really think about it or have to take her BP and then I am reminded that it will never be alright. I will get times when there are fewer worries but they are always followed up by really scary ones. Dealing with the school again has made me have to look through doctors reports and talk about it all again and again...I just would rather not even talk about any of it. I want to just live in my "safe" world where I can convince myself things aren't what they are. I really need help dealing with all of this stuff that runs through my head but whenever I try to get help,it seems to make it worse. I have to face the past and try to cope with the future that way.When in reality, some days the best I can do is deal with today, and try not to even think about anything in the past.I don't see that talking to a psychologist helps me, it seems to compound it. It seems to make my depression that much stronger and it hurts my family when I just cry at the drop of a hat. I hate taking medicine for it too though. My thought was if I went the counseling route I wouldn't have to do the medicine, but maybe I should just stick with the meds and skip the trips down memory lane because I think those memories make it worse. Chris has accused me lately of resenting Abi and resenting him. In many ways I do BUT I love them both and would not change that. Maybe I am being selfish by feeling this way but at some point shouldn't I get to be a little bit selfish? Then my family( Chris included) want to tell me what I need to get through this instead of listening to what I tell them I need to get through this. Everyone gets an opinion about what I need, but me:) At least online I get suppport and validation of these feelings. Being a special needs sibling is hard enough, then to be a special needs/medically complex parent...that is just more than I can take.

it breaks my heart...

2009-09-22T07:03:00.003-06:00

I know that this time of the year is tough on me. With Abi's anniversary of her heart surgery and all the emotional stuff that comes with that. I try not to focas on it but when she is having issues with narrowing in her SVAS again and talk of doing something about it is looming, it is hard not to get sucked down into the depression of it all. Now, we all know that I do not take loss of anyone well and I am scared to death of it. I worry constantly about it but I was hit yesterday morning with something that I hoped would never happen. I have passed my fears onto my child. I went to wake Hunter up yesterday to go to school and foudn my 13 year old laying in his bed, sobbing. He yelled at me to go away, but I told him that he had to talk to me and tell me what was going on. He waited about an hour and then came to talk to me. He had a dream that was a little too real for him. He dreamt that he came home from school and found out that Abi had died while he was at school.By the looks of him, he had been crying for most of the night, his face was so swollen and his eyes were so puffy. He stayed home from school. How could I send him? And he cried several times during the day too. He played with his sister alot and I think that helped him out. We talked and I told him that we are doing everything we can to keep her safe but that I can not promise him that it will never happen. I can promise him that he will not come home from school and be by himself and recieve news like that. I just hoped that my kids would never feel like I do. Hunter has always been a bit more like me but I hate this. I don't want him to have the anxiety that I do. I want him to be able to cope and not worry so much.It breaks my heart that my kids have been introduced to a world where the loss of their sister at a young age is a very real possibility. It breaks my heart.

And so it continues...

2009-09-17T16:12:00.002-06:00

Today Abi went to the school for some more testing. I got ambushed by the director of Special Ed who sat me down to talk to me about my concerns. Then it turns into..."well, normally we don't have to explain ourselves and who we choose to do the testing we just take the child out of class and do it" To which I remind her that in the 3 years she has known us, have we ever not asked questions and wanted to know the specifics. She knows that we want to know. So now she springs on me that they do not own the DAS-II test that is recommended by two WS experts and if they purchase the test then they have to have some one trained to give the test...so would it be okay if they went back to the test they want to give...Standford-Benet and then...can we do the condensed version of the test too? So when Chris gets home we talk and deciede that maybe our best bet is to let them do their testing if we can fit it in our schedules but in the mean time talk to Children's Mercy Hospital about them doing an evaluation on their own. ( this is how much we don't trust the school to be honest) and then we they have their little meeting to tell us what they think we should do...we will then be able to see if they really do try or just do what they want. I just REALLY don't like them but if we can prove that they are not doing what is Appropriate for Abi then we have not shot ourselves in the foot for later, we have just proved that they are incompitent and we can walk away and still come back at a later date ( even with a different school district if we were to move) and we have the proof we need that they were in the wrong. I will talk to a lawyer again though before everything is done...but we have gone the lawyer route with this school before so the better stocked the case...even if we choose not to continue we still can later if we have to. Does that make sense? It honestly is so complex. It is a HUGE mess but we have to have a paper trail that proves that we tried and they failed. So we contiune with this back and forth....for now.

" Hi, I am an over-protective, non-trusting mom, nice to meet you"

2009-09-15T12:56:00.002-06:00

So I have cooled down from our testing experience last week with the school district. I now turn to those with more wisdom than I have to ask for help...
This woman( susan) who is doing the testing knows nothing about WS, doesn't actually work for the school district or any school district right now(she contracts to do testing), the only contact info I have for her is a cell phone number, the school never told me there would be an independent person doing the testing...we go for the testing (round 1) with 2 days notice. We walk in and Abi and I had talked through the whole don't-hug-strangers angle...of course this woman bends down and holds her arms out...that is now out the window. We do this reading comp test( which is funny because some of it was which picture best matches what this sentence says...she can't even get her letters named correctly most of the time) and then 10 minutes into testing she is done with that test. It is way to advanced for her. So susan says to Abi " Let's go out to my car and you can help me get the next test" What the hell did you just say?!?! Yes, she asked my 6 yr old special needs child who she met 10 minutes ago to go with her to a car and what do you think my child does...grabs her hand and goes. No, mention of ask your mom if it is okay, nothing like that. So I follow her even though susan says " you can just stay here" ,yeah right! Then she gets back with the next test, a math one. Abi lasts another 10 minutes before she is ignoring the woman and is done. Then the woman pulls other calendar and says " I have an opening at this week at 9am" and I say " well, I'll have to look at my calendar at home" and she says " but you stay home right?" ...I could really deck this woman right now. really?!?! yes, I do stay home but that doesn't mean I have no other plans and have nothing else to do. So I talk to the Special ED director again and explain to her that I do not think it is teaching my child anything good by having a stranger ask her to go to her car with her( okay I was nice but that was the just of what I said) when that child has no fear of strangers. It was just wrong. I get that the woman was trying to make friends but there are other ways that don't jeopardise her safety. I am sorry but I would have been just as upset if the same thing happened to my 10 year old but she at least would know better than to go!( I hope) I just am so pissed off at the school that I am sure they feel I am gunning for them....maybe I am but come on it doesn't take a rocket scientist to know that asking a child that you don't know to go to your car with you is wrong...
When I was 10 I was molested,off and on for 2 years, by my bus driver who was the grandfather of a friend of mine. It can happen and it does happen and it will not happen to my children if I can stop it! so yeah maybe you can label me as over-protective, non-trusting...but I think I totally earned that right.

Happy re-birthday Abi.

2009-09-14T11:36:00.003-06:00

As Anna refers to Ava's surgery date, it was Abi's re-birthday yesterday. Three years since that experience that changed all of our lives. Three years ago Abi was barely clinging to life and we were just praying to get another chance. We have that chance and I remember everyday what it was like to fear that she would never come home. I remember what walking into our house felt like without her and thinking, what if she never comes back here to run through this door again, slide down the stairs,pick at the paint on the tv stand, pull off the wallpaper...what if... Thank God, we have gotten that second chance. I will never take it for granted. I will cherish what I have because I know what I have to loose.
Thank all of you for being my support through all of this journey. I could never do it without all of you!

Wiggles part 2

2009-09-03T13:30:00.001-06:00

Did you know that Sam was a back up dancer before he took over for Greg? I now do because Abi is absolutely FIXATED on the fact that she saw him. Now I get to hear " there is Sam! He's not supposed to be there, Greg is there! I hate Sam!!" UGH! How does she notice stuff like that and retain it. I will NEVER hear the end of it now!!!! Curse you Wiggles for changing things!!!

Abi loves Greg..

2009-09-02T17:06:00.002-06:00

You see Abi LOVES to watch the Wiggles BUT here is the catch it has to be the shows with Grag as the yellow Wiggle and not Sam. If it comes on and she sees Sam she will not watch it. She yells " I hate Sam". Funny but it just shows how much she hates change and someone messed with her Wiggles!

put into perspective

2009-08-28T08:38:00.002-06:00

Since my last post I have been thinking about everything. You know it always feels really good to get it out..even on the occasion that it doesn't get published in this blog...sometimes I still write it and then save it for later... Anyway, I just get so bitter and angry about all that comes with Abi and her medical issues and then there is always something that brings me back around and puts it into perspective for me. Today,it was learning that a family that I know is sitting in the same hospital I was in with Abi (almost 3 years ago now) and waiting...Their son has a different heart defect and doesn't have a syndrome, but that doesn't even matter, they are hoping and praying that their son gets to come home. My heart breaks for them. I understand how they feel...the helplessness...not being able to help your child.I just feel it on different levels daily( with the developmental struggles, the social struggles, the medical struggles), but I also know that very painful level of being faced with that fear of losing your child forever. The bottom line is they only want their son and I only want my daughter, no matter what comes with that.
When things get tough maybe I should think back and remember...how lucky I am the I still have all of this to deal with...she is here and that is what truly matters. Nothing else.

Is there ever an end to the rough patches?

2009-08-27T08:43:00.003-06:00

Lately it seems that there is so much that I can't handle. There is so much that just sends me over the edge. I am so angry, so depressed, and I feel so alone. I know I am not. I know some of it is my own choosing, but it hurts. It hurts when it feels as if no one understands. I try to talk to those around me but there is just no way for them to understand. There is so much that runs through my head, past, present future and honestly I know I tend to focus on what is wrong or what could be wrong and not what is right and good with things. I know this is my fatal flaw, but I have always been like this. There just seems to be so much more to worry about now. So many more things that I always thought would never happen to me...well, they either happen to me or those around me and that gets me thinking about the " what if" factor way too much for my own good. That "it just doesn't happen" gets put on hold because really...it does happen. It happens all the time...bad things happen to good people and there is nothing you or anyone else can do to change it. You have to deal with it, they have to deal with it...and I tend to reflect on how I would handle the same types of things. I think this is the point that throws me into a tailspin that I have to drag myself out of. I have to find a way to to not let the fears take over and I just am not good at that. I think that I need to just have someone to be able to talk to. I can't talk to Chris, he just deals with things differently and doesn't understand why I worry so much. When I think he starts to get it( a few days ago we were talking about how the school would have such a hard time with Abi trying to figure her out and he admits that he can't even do it, a few hours with her on his own and he has hit his limit) then he reverts back to the fact that he doesn't see why I get so worked up by the end of the day. I think the latest rough patch started with a friend who was talking about her 2 yr old being potty trained, and my almost 7 yr old is not. Then sending kids off to school, but not sending Abi. Seeing kids her age or younger that are just so far ahead of her developmentally. Dealing with the ongoing medical decisions. I just second guess myself all the time. I just don't know if I am making the right choices and I am so scared of failing. I have always taken the "safe" route because I hate failing and Abi proves to me that I fail all the time, I just can't hide it as well when it comes to her. My self confidence is gone and I don't know how to get it back. There wasn't too much to lose in the first place but it is so hard to feel like I just can't do this. I know that I will find a way, I always do. I am the only one has been in charge of all of Abi's stuff and the older kids stuff. I know that Chris would help more but honestly he has less ability to handle all this than I do and then I just feel guilty all the way around when he does help more and no one is happy. At least if I take it one myself, the older kids and Chris are happy. Maybe someday I will be able to see the bright side of life and not always the hard stuff.

the day to day of life

2009-08-14T08:15:00.002-06:00

There is not much to update but at thesame time there is alot of little things. Lath went and took a class to learn how to be a soccer referee and should start working this next weekend. Scary that he is old enough to work. Even more scary, he is enrolled in high school and owns a car! Hunter is hating the fact that school will be starting in a week. Hannah is looking forward to school but hates the teacher that she got. Abi would look forward to school but I'm not sending her and she is not at all happy with me that everyone else is going and she is staying with me. I have to find a way to get her involved with other kids her age but she is so limited with her medical stuff. The heart dr says no organized sports( that includes dance) the only thing they would let her do is Special Olympics but I can't seem to find any programs that aren't an hour drive one way! I'm not sure what to do with that. I feel like I am taking all of these experiences away from her before she even gets a chance to try them. I know they are for her own good...but it doesn't make it any easier to do. The school district just sucks and I don't trust them and neither do the people who work for them. People who work for the district tell me not to send her...that to me is scary. The school and I are still fighting out the paperwork and I have thought about just letting them test her since it has been two years since she was tested by anyone...but I just don't know if that will really show what she can do. I am sure that my daughter will dig her heels in and bomb the test because she can be that stubborn with people who don't know how to work with her. Her will is much stronger than most adults think. She will not give in unless she wants to. Thanks to a social worker here in town I now know the ins and outs of homeschool law and what I need to do...so here we go! I just hope I can do it! At least I have Behavorial Therapy for the next year 9 hours a week, that's helpful. I get that much of a break and some more insight into what to do with her when we get stuck.
My sister in law, Alicia,had a baby girl on Monday. Audrey is her name and she is doing great. They think she has a heart murmur but will just wait and see if it goes away on it's own. Her older daughter is 5, Chloe, has Hypoplastic Left Heart Syndrome and just had the third surgery in May. Chloe still has fluid around her heart and her liver is enlarged( which are signs of heart failure. The fluid has increased in the last week so they are watching her weekly and added meds to try to get rid of the fluid and hopefully heal her heart on it's own.
So that is my update for now. Just hanging out finishing what time I have left with my kids before school starts. I will miss the older one's greatly( Abi will miss them more) but maybe we can get back into a schedule and Abi's anxiety and mood swings will be better....I can dream anyway!!!

our new pet

2009-08-10T08:13:00.002-06:00

Well, we did it. We got a kitten. We were coming home from the pool and there was a young woman sitting outside with a sign in her yard "free kitten". We have been thinking about it for awhile...hoping it would give Ren some relief and Abi would leave his grouchy self alone. So far he is a pretty good kitten. Mellow, likes to be held, plays with the boys, he has only tried to beat up Ren a couple of times( funny because the kitten is bigger than the dog). We still don't have an offical name though....

Back in the saddle again....

2009-07-29T11:16:00.003-06:00

So we finally made it home on Monday night from our long road trip. It really was alot of fun and we only had one day when we couldn't stand each other.:) The kids all had a good time. Abi toughed it out but since we have gotten home...all hell has broke loose.She is making up for how good she was while gone that is for sure! Biting,hiting, scratching, screaming, tantrums, no sleep.....that's the short list.
Today we went to the dr to have him look at this wart on the bottom of her foot. It hurts her to walk on it. They took her BP in the office 116/77 in the left 105/61 in her right. Usually her right is higher. I just don't understand it all. So talking to the dr about all of it, he is stumped too. He said that all of the drs just think that it is the combo of renal and heart that just screws it all up and gives us no rhyme or reason for the BP. We talked about school and what should be done. I am having second thoughts about homeschooling just because I don't want her to miss out on stuff. I don't want her to resent me for not sending her BUT the dr thinks that keeping her home is the best thing for her. With her medical history and illness that runs through schools...the fact that I don't trust the school to watch her closely enough..the anxiety and stress and what it does to her BP( it just makes it even more irrugular than it alreayd is) he just feels it is not worth sending her, there are just too many drawbacks. I just have to resolve that it will be fine. I will be able to do this. I think my biggest issue is the thought of failing Abi. My lack of confidence in myself is making this a whole lot harder than it is. I do know that I have to have another IEP meeting to offically state that I am homeschooling her. I know that they will do their best to make me feel like I can't do it. I will have to try to think positive thoughts before I go in so that they don't break me down. I'm sure there will be tears though, I just don't know that I am strong enough not to let it get to me anymore. I know that homeschooling her is the right choice now I just have to make myself believe that I can do it.

Vacation?

2009-07-16T18:32:00.002-06:00

So we are heading out tomorrow for Las Vegas and lots of heat...which I am not looking forward to. I don't drink, don't gamble, and we are taking 4 kids...not sure what we will do for the week but hope it is fun! I know we will have fun on the way there, Painted Desert, Grand Canyon...that's more my speed....super slow! Then through Denver on the way back home. So I will be gone from here but hopefully not totally out of the loop. I can get posts from Facebook but they seem to be running hours behind the actual posting time. I can't see pictures though because my phone does not have internet( that stinks) but at least I won't feel totally without all of you :)

Blessed.

2009-07-11T11:11:00.002-06:00

Today I will remember my neighbor and friend, Shahid, he was murdered while visiting his family in Pakistan on Sunday night. His wife and my friend, Robin, is handling it as best she can. I am going over this afternoon to look through pictures and tell stories about him and what he ment to us. He really was a wonderful person and he will be missed by my whole family. My parents, my brothers, Chris' brother...we all knew him and loved him. There was an extra special place in his heart for Abi.She is the same age that their son who passed away at 8 months would have been. Robin and I were pregnant at the same time...I got to bring home my baby, she did not. I have been with them since Shahid came over to America for the first time, watched with them as they buried their son and then a few short years later buried their daughter, they were with us when Abi was in the hosptial, we were there when Shahid joined the Union and became a Carpenter,we were there whne he bacame an offical US citizan just 8 months ago...and I am with Robin right now as she says good-bye to her husband and boards a plane for Pakistan to meet a family she has never met until now....I remember all the times he offered help when we needed it. I remember all the fun we would have at our cookouts in the front yard. Grilling, talking, and drinking beer until the wee hours of the morning while the kids played until it was dark. All the times that we couldn't get in the car until Abi got her hug and said "hi" to Shahid before we left, didn't matter if it was raining or snowing...we HAD to do it. All the pop Shahid would give to Abi and all the times I would tell him not to and he would just smile and give it to her anyway. All the flowers she picked out of his yard that would have caused him to be upset with anyone but her...she could do whatever she wanted to, he always just smiled and said " that's okay". He was the first to run over and pitch in if you were working on something outside, never asking if you needed help, just helping. He will be missed greatly by those who knew him.

Cardio today.

2009-07-02T14:59:00.002-06:00

Well it didn't go totally unexpected. The narrowing in her aorta is worse, kind of betted on that one. The gradients are now ranging in the 30's with some in the 45 range. Still mild-moderate BUT with her BP issues the cardio is thinking that he should still present her to the other doctors and get their input. He did say if they were to try to reopen the patch it would be by stent not another open heart procedure. The thought is maybe if that area has relief again her BP may go down again and that would hold the medicine increases for a longer period of time. Again I was told...it is a matter of time before something has to be done to her heart, when it is done it will be a great risk to her considering her history. Any procedure would have to be done with the greatest benefit and the least amount of risk. Her BP will never be under control for long....just part of what all she has going on...the co-arc in her heart helps to regulate BP with it not being " correct" but not narrowed enough to "fix" her bp will always be on an up and down pattern. The parts of her heart that regulate BP don't function right, nothing can be done about that, throw in the kidney stuff and it is going to always be an issue.There really is nothing that they can "fix" in her kidneys because the narrowings are just too many to fix them all.Again I was told....it is just a temperary fix. That is always a hard pill to swallow. I guess I will always hold out hope that I will walk in and he'll say " everythings fine...no worries" but I do understand that the hope of it happening gets less and less with each new "problem" that seems to be added.The good news is that there are no signs of her heart failing and her EKG's are fine( but again we are told to take that with a grain of salt...everything looked pretty good before heart surgery last time too and she's NEVER had a bad EKG). So I guess we just keep on keeping on.....

catching up.

2009-07-01T07:28:00.002-06:00

Not much going on around here. Trying to get things together to go to Las Vegas with Chris and the kids in a few weeks. He decieded it is better not to leave me alone anymore. The sad things is, the kids totally agree with him. They don't want me here without him either. So we are thinking we are going to drive through Denver and down but have thought about taking the Southern route through Oklahoma/Texas too. Maybe we will take one there and the other back. I just can't get excited about it at all but know that it is just in my nature to worry. The kids are starting to get into it, at first they didn't want to go but the chance to see the Grand Canyon and mountains...that was enough to convince them. They are like me and really could care less about the Las Vegas part...maybe we will be surprized. I just think about the cost and it drives me crazy!! I hate spending money, I am just too cheap sometimes and should enjoy that we can go instead of worrying about the money all the time. I guess it is because in theroy...it's not my money so I worry. Chris always says it is mine too but I haven't worked for so long that I always feel guilty when I spend any money because I know how hard Chris works for it.
Abi has a cardio appointment that I forgot about. It is in the morning and I am starting to worry but the last few times has been okay, nothing horrible. Then I just start thinking...if I let my guard down...that will be the time I should have worried.I am prepared for the narrowing in her aorta to be a little worse...it has been everytime...I just hope it is still gradual and hasn't progressed faster this time. She shows no new signs but then again, she never does! I guess we will know tomorrow!
Lastly...pray for our friend Michaela...she is having an MRI of her brain today. I hope and pray that they recieve some good news, instead of the news they have been getting. Just something positive would be nice.

Long time, no blog.

2009-06-26T07:55:00.002-06:00

It has been so long since I have touched the computer for any length of time. There are always someone else's fingers on the keyboard lately. This past weekend we went to the Lake and stayed at our favorite campground. The only problem was that there was a big thunderstorm with a tornade on the ground a few miles from where we were. So we went to the cave they have there and hung out until the tornado was safely past. Abi is totally fine with caves. In fact the last time we went to KY to see Dr. Mervis we went through 5 different caves and even took a 2 hour cave tour with Abi with us. She does end up being carried but thankfully she doesn't weigh too much.
Other than that we have been spending a lot of time inside, because it is SOOOOO hot here! Heat index greater than 105 for the past week!! When it is nice outside we walk to the library and try to get Abi interested in books. It is not working all that well but we figure if enough of us read around her maybe it will rub off. She is doing pretty good and will even walk the three blocks to the library without having to be carried. She has trouble making it back though but has been doing better about it. She just gets so tired so we are working on that.

Ruby.

2009-06-18T07:20:00.001-06:00

The following is a newsreport that I read about a little girl with WS who passed away on Monday. I did not know this girl but my heart goes out to her family.

6/17/2009 3:00:00 PM Email this article • Print this article
3-year-old girl died from natural causes, authorities rule
The sudden death of a 3-year-old Carrollton girl has been ruled as natural causes.

Carrollton Police Chief Michael Willhoite said Tuesday that Ruby Evelyn-Mae Rex, 3, of 303 Carroll Drive, was found dead in her mother's apartment early Monday morning. Her mother, Amanda Calvert, called 911 to report the possible death of her daughter at 8:53 a.m.

When emergency personnel arrived, Rex was screened by medical personnel and her death was investigated by Carroll County Coroner David Wilhoite. Later, the death investigation concluded and natural causes were determined to be the cause of death, Willhoite said.

Willhoite said Rex suffered from Williams syndrome, a rare genetic condition that causes medical and developmental problems. Children diagnosed with the disorder have a distinctive facial appearance, often suffer from cardiovascular problems and have unusual language skills. Williams syndrome does not have a cure.

Assistant Police Chief Steve Abbott, officer Jamie Kinman and the Carroll County EMS were also at the scene.

Summer in full swing...

2009-06-17T08:14:00.002-06:00

The Summer is here. In fact today it should feel like it is well over 100 degrees. YUCK! I have kids going in and out of my house and I am having a hard time keeping track of everyone!! Teenagers are exhausting! They try to stay up all night and that means I get no sleep!!!! I am worn out! We had a horrible storm a couple of nights ago and Abi was up all night long and then all the extra kids staying over...I want to sleep for a week. Abi of course runs on no sleep so I have to try to keep up with her while every other kid in the house trys to sleep late. I'm mean though and I let Abi wake them up. :) If they keep me awake then I get to wake them when I get woken up!
We have been spending alot of time at the library. Hannah, Lathan and I have been reading alot...Abi loves that you can get movies at the library. So that is my short update for now. Off to chase my escape artist! I can't seem to keep her inside for more than a few minutes before she is sneaking out the door again!

Abstract thinking...

2009-06-11T09:09:00.002-06:00

Another example at how Abi's mind makes me shake my head with laughter( not too graphic don't worry) :

We were talking about babies, where they come from, what breast feeding is...my sister in law is due in a few months and Abi had questions about everything. So she then of course asks if I have a baby in my tummy, nope. Then she says " does Hunter have a baby?" I say no he's a boy. She says " yes he does. His baby is Ren" (his dog) then she moves on to who has milk in their boobies. Then she says something that takes me totally off guard and makes me laugh out loud..." I think Hunter has pink lemonade in his boobies!"

Update on stuff...

2009-06-09T07:37:00.003-06:00

Well first off Chloe got out of the hosptial on Friday afternoon. She is home with drain tubes still in for another couple of weeks but she is moving around and doing well really.
I took Abi to the nephrologist yesterday. Her BP is high but he can't seem to figure out why. He wants to go with the therory that because of her heart issues it is higher in her right than her left but there is a huge diference in those numbers so he thinks that her heart is having more problems.( I personally don't care for this therory) So we are to take her BP in both arms and keep track and get back to him. He doesn't like putting any more medication into her. He doesn't like the meds that the urologist put her on, especailly Flomax. Mostly because it drops BP and is intended for 60 yr old men and my 6 yr old 30 lb girl is taking it. So I may be talking to the urologist about switching it. Plus it is a capsule that I have to open and put in food...which she never takes all of and ends up spiting most of it out( texture).
Now on to my parents....as of a few weeks ago my mom decieded that she wanted to take the kids this summer each on their own. Here's my issue with that....I hate when people pick favorites( another issue with the MIL) and that is what I feel is being done because my mom said " I don't want to take Abi at the same time because she is too much work and I can't enjoy whomever is with her because I have to watch her the whole time"...my thoughts are you take one you take them all, package deal. It really is not that hard to motify things for Abi to participate and my parents of all people should understand that( with my older brother with the disability). So mom has been calling non-stop about taking Hannah. She came to get her yesterday and talked to me and knew I was not happy. So she asked what was wrong so I told her that what is wrong is that the one child who really wants to go( Abi) I have to lie to and tell her that her sister is going somewhere else, my mom has to sneak and get Hannah so that Abi won't know, Hannah is the one who sleeps with Abi most nights therfore I will be getting no sleep until Hannah returns and life is back to "normal", Abi hates change and she just figured out that they are all going to be home because school is out and then you go and take one away and screw up that whole schedule. Mom doesn't understand...well let's just face it few people understand what change does to Abi. My mom doesn't get why I would be so stressed out over all of it...because she doesn't live it. She doesn't fear these changes that set off a chain reaction that takes forever to get back under control. I am begining to pick up my child's anxiety about change, not me being afraid of change but afraid of her reaction to it. Plus honestly with her BP getting high and the dr throwing the " heart" stuff back in there I get a little nervous about throwing her into a tailspin.She really does well with change as long as she knows we are all going to be there. She relys on each of us for different reasons and there is confort in the group of us helping her through it. Honestly most stuff she tolerates well but you start taking someone in our family out of it....she starts to get worried. She 's okay as long as she knows they will not be gone for more than a day, she can handle that...any more than a day and she starts to freak. So this is now an issue with my mom and I. She ended up not taking Hannah yesterday( which hurt Hannah's feelings a little bit but Hannah really didn't want to go that badly anyway...the older 3 are to the age where friends come way before grandparents and even parents most days) but now my mom is back to not speaking to me again.

Urology update

2009-06-01T15:17:00.002-06:00

Well today was the follow up to the urodynamics tests and the dr says that he does see some improvement...so maybe their is hope. That being said he put her back on Flomax and adding Miralax back in to her daily schedule. I am really hopeful at this point because he didn't even mention the " catherization" stuff. Maybe just maybe.....

My niece Chloe is doing better and even got moved up to the floor today and out of PICU.Yeah!!!

2009-05-31T16:48:00.002-06:00

Chloe is doing okay today. Her lung is still holding fluid, still gagging but has nothing in her stomach to throw-up, and she is not responding with more than one word answers. They are hoping that the medication is making her out of sorts and it wasn't a stroke but they don't know for sure. Chloe is up and walking some with lots of support which will help with the fluid that is still there. Her O2 stats are hanging around 93 on room air that is so much better than the 80's she was stating before the surgery. She is not nearly as blue in color as she used to be.So hopefully she has made it through the worst and is on the mend. She still has a long recovery but she is improving a little bit at a time. It has to be really hard on you when your whole system is re-routed and your body has to adjust to it all. Thanks for checking on us :)
I am heading to a urology appoinment with Abi in the morning and then we will go upstairs and hope that we get to see Chloe! Abi is very mad that she can't see her yet. When she gets to the floor we promised she could go up and play with Chloe.

2009-05-30T06:25:00.002-06:00

Chris and I went up to the hospital to see Chloe last night. She is doing better and even might be moved from the PICU to the floor sometime today. I really did okay with the whole thing. So much better than I would have on Thursday. I really am glad I decieded to wait until Chris could be with me. The only issue last night, that got me crying, was that about 8pm they brought in a little boy who was 12 who had been swimming in the neighbors pool that had hit his head and was unresponsive. When I saw the pain his family and friends were going through, I could not help but to start crying. It is a different kind of grief when you know your child has been sick verses when something out of the blue happens to a perfectly healthy child. I just kept thinking it could have been any one of my kids. The dad kept saying over and over " I told him not to go. I had a bad feeling". They called in socail work and the chaplain before we left and I knewn then that things were not looking good for this little boy. I have not heard if he has survived the night or not but he was in very grave condition when we left. I am praying hard for this little boy that I don't even know. Really hoping that his parents get some more time with him. I guess it has helped to put things back into perspective for me. I will hold all of my kids just a little tighter for awhile.

Doing as well as to be expected

2009-05-28T16:47:00.002-06:00

Chloe is doing pretty good. She is having issues with keeping her BP up so they are actually thinking of waking her up and taking the breathing tube out tonight. Pretty much to piss her off and bring up her BP. The surgery took less time than expected so that has to be a good sign.
I feel bad because the nurse came in and moved the family to the PICU before the doctor had a chance to talk to Cale and Alicia and I walked in those doors again....I had to get out of there. I just couldn't do it. I could not be there and see my niece and not picture Abi. Maybe I can do it tomorrow but not today. So instead of causing more harm to myself I choose to run. I have gone in those doors since Abi's surgery but never for someone that I was close to. It has been to deliver food or a blanket from the support group but never for someone I knew since Abi was in there. I know that Alicia and Cale understand if no one else that was there gets it. There is just a point that sometimes you know you are not able to cross. I guess it is good not to push myself too much. I just wanted to see her so bad but...that just wasn't happening today. She needs her parents right now more than anyone else anyway and they right now need each other. I will update again when I get an update!

Memories...

2009-05-28T05:49:00.002-06:00

This is a picture of Chloe( my niece who is 4), Abi and Hannah at the zoo on Mother's Day weekend.

Chloe was born with Hypoplastic Left Heart Syndrome. When she was born thye did heart surgery at 7 days old and then again at 6 months old. HLHS takes 3 surgeries to "repair" the heart. Chloe has two chambers in her heart that have to be rerouted so that it functions similar to a four chamber heart. 20 years ago she would not have survived at all. It really is a miracle that she is here. Chloe is stubborn and hardheaded...almost as bad as Abi is...in some ways more so! Today she goes in for the final stage of the 3 part surgeries. There will always be a wait for a transplant in her future. Two chambers can never totally function right. This surgery though is suposed to get her to late teens, maybe even adult hood but with everything medical....who really knows for sure. This surgery is tough and there are many complications so I am more than a little worried. Plus my sister-in-law is 7 months pregnant so I worry about her and this new baby too. It is so incredably hard to watch those you love go through something that you know all to well. There is an unspoken look that we share.One of total grief for watching the other have to go through this all. I know when Abi had her surgery how tough it was on Alicia...now it is my turn. I will be at the hospital most of the day today. I will visit as much as I can because it doesn't have to be explained to me....those fears, those joys...I get it. I know how much it helped me to have Alicia there....to just be able to look at her face and know that we were on the same wave length. This is going to be emotionally tough but maybe it is what I need. Maybe it will help to work through it all....maybe it will make it worse. Who knows...but I will be there for them.

Everyone's growing up.

2009-05-26T07:35:00.003-06:00

This weekend we went to the lake. Lathan took his friend Quinton, but we call him Q. Hannah took her cousin Chasity. There were 8 of us hanging out at the pool, playing at the beach at the lake, fishing and tubing behind the boat. It was alot of fun but also alot of work. I watched the older boys and started thinking about the fact that they will be Freshman in High school next school year. I just can't even wrap my head around it. Lathan asks to go places and I have to stop and remind myself how old his is and that he has to do things on his own now. My brother came to visit too for a little bit, home from Florida for the weekend. He is in the Marines and we don't get to see him much. My parents came the next day along with my aunt who was up from Texas. Then Chris' mom and her husband came up for dinner that same night. Of course Chirs' mom stays for an hour and then is gone. She tells others that she wants to get to know me better but when she has the chance she doesn't stick around long enough to follow through. My parents keep wanting my kids to come stay with them but my mom gets her feelings hurt because the boys and even Hannah anymore don't want to. Well, who can blame them? There is nothing to do at my parents house and they are home bodies. Boring for teenagers especially when all their friends are here not 3 hours away. Anymore they don't want to take Abi too because she is too much work and they don't get to spend time with the other kids. Understandable but Abi is the only one who really wants to go. Oh well, such is life. Everyone grows up. I just can't believe how fast my children seem to be doing it!!!
Here are some pictures from the lake. I didn't get too many because I didn't want to ruin my camera, everything we did involved water!

Photo and video editing at www.OneTrueMedia.com

The doctors today

2009-05-19T13:58:00.002-06:00

Today started out rough but has turned out okay so far now. This morning was Abi's KUB and urinary voiding study. I've explained it before so I won't go into detail again but they check the filling and emptying of her bladder. She found out last night we were going to the hospital but I left out the " ouchie" part of the explanation. Well this morning she kept asking so I tried to explain it to her. Yes, there were ouchies but no blood and no needles. So she of course cried and cried. In fact she cried about 20 miles into our trip until she cried herself to sleep. When we got to the hospital her little body was shaking she was so scared. I gave her all of her morning doses of BP meds at once because I knew she would need them to hit before we got to the hospital. She really needed them. When she saw the room...gurney, poles with machines attached, computer monitors, gloves and tubing....she freaked out. I don't know what her BP was and I really don't think I want to know what it was...her whole body was red( she looked like she had a horrible sun burn) and the whites of her eyes weren't even white because of all the little blood vessels that were showing. We got both of the catheters in and she started to calm down. Then it was just running in the fluid and pulling it back out and she was okay with that for the most part. All that I know of the results are that her bladder holds more than it did two years ago, she still has spasms when her bladder is reaching full, and she doesn't empty it all on her own. We go back to see the urologist June 1st so I guess we should know more then.
On a side note, we were walking down the hall and ran into a nurse who looked at Abi and thought she recognized her. Then the nurse remembered that Abi was the one she took care of on ECMO and in the PICU. She totally remembered my kid from 2 and a half years ago! She even asked if Abi still loved Spaghetti O's because we got her to eat them to get her out of the PICU and on to the floor. I just am amazed at the number of people who remember my child and remember such little things about her. It really does remind me what a blessing she is....

2009-05-17T18:30:00.005-06:00

This weekend started out rather rough for me but ended on a better note. Friday was tough because Chris and I had an argument that turned into much more( as it always does) and by Saturday we were not speaking. Then Saturday afternoon we sat down and talked it out.He keeps trying to tell me that I need to spend more time without him. I keep telling him that is not what I want. He talks to guys at work and they think I am too dependant on him and they tell him if I was more independent that I would be happier. That's fine for others but not for me. I am not happy with Chris around. As I told him, he is my counterweight. I would be sunk all the time without his up beat-optimistic attitude to balance my melancholy one. So after talking for awhile and him realize that I have not changed, I have always been this way...just maybe a little bit worse in times of stress( Abi has her urodynamics study on Tues for example). So he has agreed to not push me to change. He is starting to see that what makes me happy is being around my family( him and the kids) and if you want me happy...spend time with us! It really is not that hard( Of course I don't think it is hard :)..
So them we went to a friends house and the girls hung out with their girls and Hunter hung out with his friends, Lathan stayed home by himself( because he is a teenager and has to be difficult). The following is to illistrate how redneck my son,Hunter, can be. He always makes me smile with his sweet disposition and fun-loving nature. He is friends with a good group of boys. Lathan is similar in many ways, but would hate me for saying that. He doesn't like to hear that he is like his brother, but he is like him, in the best ways. Lathan is thoughtful and caring and likes to make you smile when you are down. I really am blessed by all of my kids. I am equally blessed by having a husband like Chris, who is willing to see past my faults and know that I am doing the best that I can and sometimes even the best of us fall and need help back up.
Here are pictures of Hunter and his friends playing in the mud.

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Here are those pictures!!

2009-05-11T18:57:00.002-06:00

Photo and video editing at www.OneTrueMedia.com

And Abi did really much better than I thought she would at the dentist. She cried but we were able to get x-rays, brush her teeth with a tooth brush and get floride on them! Amazing, concidering last time she wouldn't let him in the door without just freaking out to the point that he was afraid she would reach stroke status.

It's been awhile.

2009-05-11T06:37:00.002-06:00

There has not been too much going on so there has not been much to update. This weekend though we went camping and to the Zoo in Omaha ,Nebraska. Omaha has a wonderful zoo that is the best I have seen. They have a little bit of everything and it is mostly all in buildings so you don't have to worry too much about the weather, just getting from one building to the other. We took lots of pictures so I will be posting them as soon as I get a minute to upload them. Cale, Alicia and Chloe went too ( Chris' brother and his family). Which worked out great because Chloe only has two more weeks until she is scheduled for heart surgery so this was the only weekend they could get out. For the next couple of weeks they will be staying at home trying to keep her healthy. Alicia is 5 months pregnant and Abi hasn't seen her in awhile so she walks up to her and says " WOW! Your tummy is big!" . Abi kept us in stitches most of the weekend. I swear the stuff that comes out of that kid's mouth is amazing!!! She just says whatever she feels at the moment.
Today I get to take her to the dreaded dentist. We haven't been in for almost a year because she reacts so badly. We have to go because I have questions for him about her loose teeth. The four with caps are loose and I want to make sure that they will come out okay on their own. Now that she is getting "big" teeth I will have to force her in the dentist chair more often....I cringe at the thought!

My drs appointment

2009-05-01T07:04:00.003-06:00

The doctor seems to think that I might be under alot of stress. Really?!?! She was super nice and very through. Even asked all of my family history. Told me that she thinks it is a little bit allergy, a lot caffeine( causing the heart palpitations and reflux that is causing the throat pain and feeling of tightness) and the stress just makes it all not go away and causes it to turn into an infection. Of course she understands that the stress will not be going anywhere so she wants to see me next month and go from there. So she gave me some scripts told me to cut out the caffeine and see what the next month brings. I really hope it helps because the cutting out the caffeine part is going to be very hard to do. It is the one thing I let myself have that is not good for me. I don't drink because of my dad and the thought of all that goes with his drinking. So caffeine has always been my crutch, so to speak. So at least I am just un-motivated and stressed out :)

Nothing much new

2009-04-30T08:44:00.003-06:00

Abi has had a cough now for a week. The doctor thinks it is allergy/asthma related and I have to agree with him. It gets worse when she spends anytime outside. She also has impetigo on her face but the antibiotic is clearing that up too.
Tomorrow I go to the Ear, Nose and Throat doctor to see if they can give me any insight into why I keep getting these weird infections that don't seem to ever really go away. I also am thinking that I need to be checked out by a cardiologist. Don't panic...it really is nothing! I have been having alot of heart palpitations lately. My heart will race and then almost sputter it is uncomfortable but it does go away. It is not all the time. There is a long family history of heart issues so I think it is worth having checked out further but I did have an EKG back in July and that came back fine so I am not too worried. At first I thought it was "panic" related but it continues even when I am not stressed out.( okay I'll be honest, it is all varying degrees of stress daily) I do have to say it is worse when I am really stressed though. I am going to wait until after the ENT appointment before I get a cardio eval though because I have had issues with my thyroid in the past and that can cause palpitations too. Caffeine can be another cause. Plus I have this fear of doctors now thanks in part to my daughter and her adventures but I know I need to be well because honestly...who would take care of all of them? I know Chris would try but he could never do it on his own, he doesn't have the patience for it. So I guess I just suck it up and admit that I need to take the time and make sure I am okay too. I spend so much time taking care of everyone else and their needs that I can easily put myself on the back burner. Lately ,I have felt tired and worn out enough that I decieded it is worth checking out and finding out I am just unmotivated and nothing more :)

Am I just trying to drive myself crazy?

2009-04-24T06:54:00.002-06:00

I got a phone call a few days ago about doing a radio interview for a local station that is raising money for Children's Miracle Network. Well I said yes I would do it and drove down yesterday to do the interview. Why is it after 3 years I can still put myself back in that dark place? I do fine talking about the medical stuff but then the questions always come about how it feels.... Once the word " feel" comes out I loose it. I mean come on 'How would anyone feel?' in those shoes. Then I get the "but she's better now..." yeah for now. I do not know what the future holds. The future I thought 3 years ago is totally different from my future now. I can see the " it won't happen to us" could very well happen. I was even watching "Greys" last night and they were talking about post-tramatic stress...maybe that is it. There are so many things that remind me of all of the "scary" stuff. Mostly smells really....types of soap, cleaners, Pampers diapers( they have a smell and the hospital uses them). I really do find myself holding my breath going down the diaper eisle at the store and I don't even think about the fact that I do it.( let's not even go into the fact that I have to buy diapers...size 4...for my 6 year old) There are triggers to my madness, and I try like crazy to run away from them but it seems like they never really go away, then I do things like the radio stuff and expose myself to it all over again. Maybe I should be more like Chris and pretend nothing is wrong....maybe I am trying too hard to not think about the big picture....
Abi's BP is still high. I am going to take it again this weekend every couple of hours and if there is no improvement, I will call the dr back for a third increase in meds. I just get to thinking...what can all these meds be doing to my child's system? I know it is supposed to be helping but what damage is it doing in the process? The weather has been beautiful here 70 plus and sunny...but Abi can only be outside for 30 minutes before her face is flush and she is too hot. She really isn't running or anything either...the heat is just too much for her system to try to regulate against. Two of the meds she is on say to limit sun exposure....guess I can see why. Boy ,it is going to be a long summer if that is the case...Abi loves being outside.

Just what I needed....

2009-04-20T06:58:00.002-06:00

Saturday came and we headed off to Lathan's state compatition for science. It was really quite a good day and Abi hung in there and did great. For the most part I am not brave enough to tackle these compatitions with her in toe but she surprized me.
We also stopped in to see Payton and her family on our way home. I really wished we lived closer together because I tend to relax and just enjoy myself and not worry so much about what Abi is doing. Usually I only get that kind of relief at home :). It is priceless to be able to be around friends who just understand. The girls even played together a little bit. Usually it is just them playing in the same room but not with each other this time they played together. Of course it ment they were emptying out Tara's pantry...they were grocery shopping. It was too cute! And Koen, what can I say, that little boy can melt your heart. He gave me a few hugs while I was there and I can say I miss little boy hugs :( my little boys aren't so little any more....
Thanks Tara and Bob for putting up with us!

My lovely husband...

2009-04-13T15:33:00.002-06:00

...went and injured his ankle this weekend. He was playing tackle football in the street with his siblings at his Mom's house. He jumped into the air and then came down on his ankle and messed it up big time. They did an xray and saw a fracture but think it is an old fracture. They also said he has a stage 2 sprain that tore some of the ligaments. His foot is swollen up so bad that it is round on the top and bottom. The underside of his toes have fat rools from the swelling. He is in alot of pain...but I am just mad. I can't believe some of the stup[id stuff he does this is just one of them!!

Blood pressure....

2009-04-07T06:10:00.003-06:00

Just when I think that there is a plan and it will be under control, that idea is gone. Abi's BP is back up to 130/70 this morning and it hangs out close to there all day. We talked to the nurse last night( I still don't like this nurse she gets on my nerves very quickly) and she is asking the dr which med he wants to increase yet again. We just increased a couple of weeks ago. She hasn't gained any weight or height which are the usual reasons for it to go up. Sometimes I think it is being home and the lack of structure. Other times I just pull my hair out because there really is no known reason for it.Her fear of the hi-way is back full force. She won't sit through therapy now without crying and trying to lay down because her head hurts. She is on edge and even more jittery. She has zero self control and their is no reasoning with her. All of this comes back when her BP is out of control. I don't understand it all but I don't have to take her BP everyday to know it is high, I just have to look at the way she handles things. I started wishing we lived closer to CHOP last night but then as Chris reminded me....they said they would do nothing differently. I just feel like all of the drs are guessing here. That none of them know what to do.... I don't like this " plan as we go" atmosphere. I understand it is complicated but I hate seeing her like this. I hate the constant worry. I would give anything to make her feel better again. We were lucky that her BP held out for a year during all of the back surgery stuff....I guess now it is time to get back to trying to figure this whole mess out again.

My Achilles heal....

2009-04-06T10:32:00.003-06:00

Well, I took Lathan to the dr today and all we can figure out is that he has some kind of super awful virus. FUN! The dr tested for mono though, I was kinda hoping that was it because that is not as likely to hit the rest of us... Abi seems to be trying to fight off the virus Lath has but I don't think she is doing a very good job of it. She woke up this morning with a cough and her eyes are all goopy. Hannah is about where Abi is in fighting it off. I think she is failing at it too. I guess we will know for sure if they get a fever like Lath did.
This weekend we did a whole lot of nothing. We did go out Saturday night to watch some cage fights but really it just made me feel old. All of those 20 somethings acting all wild and crazy...not my scene really. The fights were all between really young men( 18-20 yr olds) and I guess I am too much of a mom to like that. I do watch UFC with Chris and that doesn't bother me, not really sure why this was different.
Sunday, Chris decided to tell me that the Union wants him to sign up next month to be a delegate again. Which really was okay with me until he tells me the part where he will have to add another trip to Las Vegas, so that now makes 3 trips in one year. To be honest I had a panic attack. I mean I seriously had a panic attack. I don't know if it was the whole out-of-the-blue thing that did me in or not but I just was not prepared. I didn't have time to get my wall up quick enough. So I had to leave. I went and sat in my car and just cried. I know that this is nothing to even worry about, but the reaction I had, you might as well have told me Abi was having surgery again...that is the panic I felt. Totally irrational panic. Once I got my bearings again Chris and I talked and he asked me to explain. I did as best I could but really there is no good explanation for it. I can handle so much and I can keep it all together. I have handled so much and kept it all together. This is the one thing I can not handle. The thought of him leaving for any length of time is just too much. I can't process it. I am sure I could if it had to do with one of the kids. The panic would not be there. When it is him leaving all of us...I just can't do it. I told him as much too. Now it is up to him to figure out what to do. He knows what it will do to me. I know what it will do to me. No matter how good I think I can handle him being gone, when it comes down to it...I am lost. It makes me shut down and it seems like each time it is harder and harder for me to recover. I know that he will decide to go, he can't say no to anyone but me.:( He knows I will try to make it through. He knows I am tough...I just don't know how tough anymore. I feel like it is harder and harder to let my guard down and that is no way to live either. I can not continue to go through the ups and downs. It is harder and harder to pull myself back up. I just think that if he makes his choice to go to these things more and more there will be less and less of me for him. I know that he understands the pain it causes me but he will still choose to let me handle it.I will not stop him, these are his choices and he knows how I feel. I can not make him do what I want him to do but he has to understand that I can not let him in to close if I am in the one who keeps getting hurt either. I have a hard time letting people too close anyway. I guess we will just have to see how it all works out. I was totally honest with him in my feelings but I also told him it is up to him what he does. It really is not a question of if he loves me, I know that he does. It is totally just something I can not even think about processing with all of the other stuff I hold together. I guess it is my Achilles Heal so to speak. Throw anything else at me I can take it. Is it rational? No. Is it something that I have done before and been okay with? yeah. Why is it that I can not handle it now? I have no idea...I really wish I knew. Maybe I could fix it. I don't ask much of Chris, this is the one thing I do ask...don't leave me alone with myself, it never turns out good.

sickness all around....

2009-04-03T06:55:00.003-06:00

Lathan is on day 3 of a fever and just feeling yucky. Hannah and Hunter have sore throats too but at least no fever. Abi is very congested and sounds even more nasally than her norm. She says her throat hurts too. I was told that what I had was not something that could be passed. Maybe it was, maybe not. I never ran a fever. Maybe this is just something new to have to fight off!
I hate it when the kids are sick. I just can't believe it is all at once. I don't know if a few at a time is worse or all at once. If they are all sick, they are all grumpy and fighting with one another over silly stuff. The glamour of my life!!!

Chloe...

2009-04-02T12:36:00.003-06:00

My niece Chloe will have heart surgery on May 28th. It is the Fontan surgery to repair HLHS. Chloe will be 5 in August and Alicia is pregnant and due in August.
I can just remember all those feelings and know how Alicia is feeling about the whole prospect. Wanting to be done worrying about this sugery that has been hanging over their heads but at the same time, scared to death of that date getting near. Last year they were going to do the surgery but it ended up getting cancelled in the hopes that Chloe would grow and get bigger so that this surgery would last longer and hopefully there would not be the need for another. As we all know, that always could change. There is always a chance that there will be more surgeries.
I know that Alicia is strong but this is always something I wish no one had to go through. After being in similar shoes, I would not wish the pain and fear on even my worst enemies...let alone my sister-in-law whom I truly love and respect. The only good thing about the whole situation is that Chris can understand with his brother Cale and I can relate with Alicia.
I just don't know what to say, other than I wish there was another way. I wish that this kind of hurt didn't have to happen to all of those friends whose children have been in similar situations and those who prepare to go into the same situations again, I am thinking about all of you, my family, for that is who all of you are to me...family.

Having a better day...

2009-04-01T05:34:00.003-06:00

I woke up this morning feeling a little better...might have been the sleeping pills.... Lathan has a fever and feels awful, Abi woke up coughing and gagging...BUT my hubby's not mad at me( says he should be a little more supportive of me, his words not mine) he went to work today ( HUGE relief! His meeting lasted until 9:30 last night trying to come to an agreement on the Union contract but they did it, Thankfully!) moved all the cars so his sister wouldn't even have a chance to mess with anything, plus even though my hubby could care less it is his birthday his children want to decorate and have cake...so off to buy balloons, cake and streamers. You're never too old for streamers right!!?!?! I get great joy in watching the kids faces, it makes them very happy to surprise their old dad. Every B-day at our house, you wake up to signs, balloons and streamers...no matter your age. Honestly, when I was younger my mom did that for me and even when I was a teen...I complained, rolled my eyes..but I would have been devastated if she hadn't done it! Amazing what a little sleep does to help your mood!

April Fool's Day....

2009-03-31T11:22:00.002-06:00

...and I am going to go crazy!

First off it is D-Day so to speak for Chirs at work. The carpenter's have still not come to an agreement and he is going to a meeting tonight that will surly tell us if he has a job to go to or will be on strike Wed. morning. Scary!

Secondly, I am still sick. Actually beyond sick. I took hydrocodine to get rid of the headache that is so bad I can barely lift my head without getting sick to my stomach. Throw in a couple of weeks worth of sleepless nights and tons of stress...

Thridly, and honestly the most stupid....Wed is Chris' brithday that he shares with a twin sister( who has never liked me, probably never will...I'm not good enough for her brother...even though I am the one who makes him happy and puts up with all his crap) in the past they have done this really childish game of "getting" one another on their birthdays. Well his sister called Chris' boss and has tried to work something out involving doing something to his truck. In fact the plan is it will happen tonight. Like I don't have enough going on. Chris of course got wind of it and wants to get her first...he is so busy he wants me to help him. Sorry, not going to happen. I am so past the childishness of it all. I am sick. I am stressed to the max with worry about our one and only income. I am stressed about our daughter's BP that was through the roof high yesterday.I fought with Chris about this and mostly about being pushed to the bottom of his list again when I need his help. Pissed that everyone of his family members will call him and wish him Happy Birthday and he could honestly care less...while our children would have loved for years now just to get one of those phone calls. Chris' younger brother and his wife are the only one's who call them from his side of the family, sad really. I am just in an awful mood and with this impending " surprize" from my sister-in-law I have fallen over the edge. I guess it is a good thing Chris will be at a meeting until bedtime and is gone all night tomorrow and Thursday night too....maybe I can compose myself before I do more damage than I have already done to my husband. I have really hurt his feelings with our fight this morning. I am sorry for that. I am sorry for the way I said it but not at all for what I said. I guess tomorrow really is a day for fool's, me being one of them. I hope that I can get myself together and try to fix what I have messed up yet again. I do love my husband too much sometimes. I get so mad when I feel like my feelings are so one sided, I feel like I am not worth his time and attention, even when I am sick and need it the most, and it really does a number on my already fracture self-esteem. Instead of feeling sorry for myself, I get mad, the sorry for myself comes after I cool down. Mad at him for not being able to see it. After almost 16 years you would think he would know what I needed without me writing it down step by step for him.

Giving up....

2009-03-30T07:47:00.003-06:00

Okay there are more than a couple reasons for this title. I am still sick. In fact Saturday I felt worse than I have yet, Sunday I felt a l ittle better, today back to just feeling like crap! I have cranial secral therapy today at 5 we will see if either that or the antibiotics kick in and help or it is back to the doctor for me. Abi is just off. Her meds got off schedule yesterday because she slept late and then all day she was a total grump on top of just looking like a zombie. She just was in a daze all day. I truly hope today is better because she always makes mw worry when she is off like this. Lastly, I had a WS get together again on Sunday and only 2 other families came. Only one time have I had 12 families come and that was to a petting zoo so I guess we will have to try that again. I just get frustrated with trying when there is so little response. I know the families who came and I know the ones that will always come if at all possible so sometimes I feel like I should just stick with what interests us and if anyone else joins then great if not, oh well!

So the scoop is this...

2009-03-25T08:11:00.002-06:00

We have tried the potty watch for a week now. Does it encourage her to go to the bathroom and try ? Yes. Does it make her have any more control over her bladder? No. She only ends up going potty in the toliet about twice a day, no more than before when I didn't take her every 90 minutes. The only difference is she willingly goes in to the bathroom but she just can't make herself go. I guess it saddens me that I know that the doctors are right and she just can't control it. I was really kind of hoping for her just being stubborn. So I will continue in the hopes that I will just be able to "catch" the times that she has to go. The frequent trips are supposed to encourage her to learn the feeling of having to go but in all honesty...those nerves don't work and the tests have shown that all along. I do think the potty watch would help if she did not have the medical issues regarding her bladder.
On another front, I am sick again with another infection in my lymph nodes. Honestly it took an entire month of antibiotics last month to get over it. Chris and I both think that maybe the CT scan is not a bad plan. I have had 4 infections in my lymph nodes in the past 9 months now but no blood test points to any specific reason for it. I right now have two big lumps on the back of my neck in my lymph nodes and my throat hurts so bad because of the other lymph nodes that are swollen.I am just tired of being sick and honestly a little scared that it might be something bigger than just an infection going on in my body. My older brother had cancer in his lymph nodes removed a year ago but he has a genetic disorder that makes cancer a common thing for him but makes me wonder since I came from the same gene pool....

She cut her hair!!!!

2009-03-24T10:56:00.004-06:00

Abi was in her room last night watching the "wiggles" and decieded to cut her own hair. I spent half the day today decieding if I could fix it or if I should just take her somewhere. I ended up taking her somewhere and she cried and screamed but I expected that. She has never really had it cut other than me trimming it now and again. Oh Well...I guess it will grow!!

She can sure find a way around anything.

2009-03-20T07:27:00.002-06:00

Last night Abi was at it again with the non-stop " I want to hold Ren". It didn't help that yesterday for a school project for Hannah we visited 4 animal shelters. That had her in a pet mood anyway. So finally I got sick and tired of answering the same question and told her " we are done talking about it. No more asking for Ren. If you ask again I will spank your bottom" So she says " Fine!" folds her arms and stomps out of the room. Go forward 5 minutes and she is back in the room playing with a Barbie doll. She comes up to me and dances the doll around and then in her best Barbie-is-talking-voice says " Abi wants to hold Ren. Can she please??!!"
I just look at her and my first reaction is wanting to laugh but the next one is " She's DRIVING me nuts!!!". I did end up laughing but she did not get Ren. A++++ for effort and being able to find the loop hole in what I said though!

Things that come out of her mouth make you smile.

2009-03-17T19:18:00.003-06:00

We got the "potty watch" in the mail today ( thanks Hailey's mom for telling us about it) and Abi loved it right away. Of course the first time it went off she was in the truck with Dad, who didn't find a potty right away so that moment was lost. I was with her when the next time came around. I didn't want to miss it so headed to the bathroom with 30 seconds left. Abi sat on the potty and just as the potty watch was starting to play music she went!! Yeah! And then the best part( and so worth the ten bucks it cost) she holds the watch, looks at it and says " Thank you for telling me I had to go potty!" and then smile and kisses the watch.

You have to love her....

2009-03-17T10:08:00.002-06:00

Abi has been my source for endless frustration lately. I do love her and in the end I smile at what she does but man, she can wear me thin...
EXAMPLES:
1. She waits until Chris and I have put her to bed and we are getting ready for bed and once she hears the shower come on, that is her cue to sneak out of bed.She then sneaks down the stairs to the basement steps, opens the door, corners the cat( poor Fluffy is 10 now and doesn't stand a chance) carries her up the stairs and to her room where she shuts the door and tries to hold the cat down, so Fluffy will "sleep" with her. That is when Mom hears this sound...a cat crying for someone to rescue her.Abi really isn't hurting the cat, the cat just doesn't want to be there.
2. I answered my phone to talk to my hubby, was on it for literally 2 minutes and came into the room to find that she had colored her whole hand black with a marker...not a washable on either!
3.She has fed the dog all of her breakfast and lunch and trys to feed him her dinner too.
4.Poor Ren, is the other object of her affection. She takes food( again with the lunch/dinner) and holds it up so he can't get it, walks him toward the cage( it is big enough for D.O.G.) and throws the food in. What happens next? She then climbs in the cage after Ren, shuts the door behind her( so he can't escape) and then tries to get him to let her hold him. Again Ren is older,9, and he will bite if he gets too tired of it. Here's the thing though, that doesn't stop Abi. It seems to make her try harder to win him over. She takes the bite and goes back for more! Frustrating. We do stop her when he gets mad enough to bite but...why does she not stop on her own?!!?
5. She also will go out the backdoor just because she wants to go somewhere. Last night it was dark and she decieded to take off into the yard. We caught her before she got off the back porch but she didn't see why we were mad at her.
6. Spring break starts tomorrow and the older 3 will be home. They all want friends over which means Abi will not leave them alone for a second. Thankfully, we have tried to just encourage the friends who are okay with Abi being in the middle of it all. There are a couple who just don't come around anymore because Abi is too much to handle. Saddens me really.

those are the short list of just the stuff that is bothering me today. As you all know too well...the list will be totally different tomorrow!

Weekend of fun!

2009-03-16T08:51:00.003-06:00

We went fishing on Saturday. It was really too cold but we still went. Lathan competed in a Science Olypiad compition in Columbia, MO all day.
Sunday we went to our lake lot to clean out some brush. Cut down some trees. Start a huge fire to burn some of the branches. Then we all went to the driving range to play some golf. This is something that we decieded to take up a few months ago. We have only been to a driving range twice now. I have only done it once. Let's just say...we suck!! but we have fun and it is something we all can do together.
Then end clip of the video is of Hunter. He decieded to build a swing from a vine and piece of wood. Okay, we all know what happened when he tried it out but it is still funny!!!

Make an on-line slide show at www.OneTrueMedia.com

" ...but, is she happy?"

2009-03-12T06:58:00.002-06:00

Last night I went to Brody's visitation and it was hard. Emotionally it is so hard to know they are feeling that kind of pain. To know that friends of your are going through so much right now. Melissa and Gary are such strong people. When I saw them both and hugged them the words don't even have to be said, we each just know. We know that pain and fear have been a part of our children's whole lives. What amazed me the most about the whole night is their compassion for others while they were in such much pain. Melissa and Gary both asked right off " How's Abi?" Gary and I talked for a couple of minutes about Brody and what they had decided about Brody's life...he was happy and loved, that was what mattered.We talked about the fact that people felt sorry for him but in reality it was all just a part of his life. I told him that even with Abi and all the stuff you could list off about her, she doesn't know that she is sick. It is so much a part of who she is, just like the color of her hair is blond. He said it was the same with Brody, it was part of who he was and what made him so incredible. As I walked away from Gary the last thing he asked me was " I know Abi has alot going on but, is she happy?" I looked him in the eyes smiled and said " Yes. Yes, she is very happy." then he said " that is what really matters"
In that room last night there was a group of parents who have heart kids. Some of them have angel children, some have angels here on Earth but we all have a common unspoken bond. I overheard a lady leaving saying somthing about " they just act too okay with it all. " that of course got the group of us parents talking. It's not that we are okay with it all, it's that we know we can't change it. The reality is we each understand the depths of each others pain because even if we haven't been in those shoes, we can sure put ourselves there in our minds. We have spent all of the time parenting these children learning how to not let it get to us. You learn how to keep yourself together just when you are losing it the most.You learn to do it for everyone else, the doctors,the nurses,the family members, the friends, your other children, your spouse, and then it just becomes what you have to do to get through it. There were several of us who weren't crying but really we were. We were crying harder than any other person there, it was just on the inside. The pain was there we are all just masters of not letting others see it. We've just had lots of practice.
There was a group of us and we were talking how it came to be that we all knew each other. This is what is amazing to me and we all agree, God had to have put us together, there is no other explaination. No one else could plan it like it happened. Years ago my neighbor, Robin, had a son who would have been the same age as Abi. We were pregnant at the same time. Aidan was born too early and only lived 9 months. I went with Robin to a memorial service at the Children's hospital and met her friend, Valerie, who lost her son Noah to a heart defect. Valerie had just started a support group for parents of heart kids, we had just found out Abi had WS and all the heart stuff that came with it. Jump to years later, Chris' brother Cale marries Alicia and they have Chloe, born with a heart defect HLHS. I met Cindy whose son Xavier had HLHS. Xavier got a heart transplant but passed away soon after. My friend Martha( from middle school and married to Chris' cousin) works as an OB nurse with Melissa. They are both pregnant at the same time and have boys named Brody and Brady 3 days apart. Brody's heart starts to fail and Martha calls me. I call Melissa and talk to her and then call Valerie asking her to call Cindy because I know nothing about heart transplants. Cindy and Melissa become very close. We all stay in touch and try to support each other as best we can. Melissa mentions she needs a speech therapist. I give her a name of Abi's speech therapist from when she was in EI, Heather. Heather had been reading my blog so already knew of Brody and his family. She became his speech therapist. To me it is a miracle that we all found each other in our times of need. The same with this blogger group. How it all has worked out that we have run into each other's lives is nothing short of a miracle really. I guess somebody knew how much we would need each other.

" The Brave Little Soul"

2009-03-11T06:39:00.004-06:00

My thoughts lately keep going to something that Laura wrote, if it weren't for Williams Syndrome I would not have met all of the wonderful families I now call friends. The families that I have come to know are the most inspiring families each of them in their own ways. Each family is truly very different but in some ways so much the same. We all take those extra few seconds everyday to thank God for what we do have. We do realize what is important and I think that puts all of us in a different place in our lives than most people are. If it weren't for Williams Syndrome I would not be the person that I am today. It has not been easy but so very worth it all. I would not trade it. Change it a little to make it easier some days but I know that the hard times have a purpose too.

Tonight is going to be very difficult for me, but not nearly as hard as it will be for Brody's family. Brody's visitation is tonight and the following is a poem that his mom, Melissa, shared. She went on to write about Brody saying to please remember that he was so much more than a sick kid. He was happy,strong willed, forgiving, and a very loved little boy who touched many people's hearts. He will be missed but never forgotten. I have pictures in my mind of all of the kids that I know who are no longer here with their parents and siblings. I will never forget any of them. They help to remind me of the joy that this life holds if you take the time to step back and slow down. Life really is too short to worry about the things that don't matter in the end.
( an article about Brody and his family http://www.dailystarjournal.com/main.asp?Search=1&ArticleID=3427&SectionID=1&SubSectionID=1&S=1.)

The Brave Little Soul
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts." The little soul was confused. "What do you mean," he asked." God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request.
But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Some of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you........"
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be brought back to heaven."

Latest BP update....

2009-03-10T07:29:00.002-06:00

I talked to the nephrologist again yesterday. I get so frustrated with his nurse! She is new so in all fairness she just doesn't know the history that the last nurse did( whom I loved). I call to tell her that Abi's BP is still high and I am worried. It is not through the roof high but it is increasing every week. It is now 120/60 for a minimum. Of course she asks " are you sure she is not just sick? Does she have a cold or something going on? Do you really think it is blood pressure?" Well let's see here...it is increasing weekly and I am taking her BP every four hours and it has not been under 120 for a week now. Last week it was not under 118, the week before that it was not under 115....yeah I think it is BP. You see, that is why I write it down when I take it to see if there is a pattern of it increasing or decreasing. Finally she talks to the dr who increases her Amlodipine to 4 mls. She said to wait two weeks and see what that does. I hate that he picks the med that takes the longest to get in your system and bring down your BP she is on two that are fast acting, why not one of them? I am told because it is a calcium channel blocker( A drug that blocks the entry of calcium into the muscle cells of the heart and the arteries. It is the entry of calcium into these cells that causes the heart to contract and arteries to narrow. By blocking the entry of calcium, calcium channel blocker (CCBs) decrease the contraction of the heart and dilate (widen) the arteries. By dilating the arteries, CCBs reduce the pressure in the arteries. This makes it easier for the heart to pump blood, and, as a result, the heart needs less oxygen. By reducing the heart's need for oxygen, CCBs prevent or relieve angina. CCBs also are used for treating high blood pressure because of their blood pressure-lowering effects. CCBs also slow the rate at which the heart beats and are therefore used for treating certain abnormal heart rhythms such as atrial fibrillation). The nurse says that maybe we should do another 24 hour monitor. Which I am all for EXCEPT machines are always lower than what manually her BP is...isn't that a machine? Then the nurse tells me " yes, but it is different" as my teeneagers would say "WHATEVER! I give up". Why can this nurse not just trust me like the other one did. The other nurse trusted that when I said it was high, it was high. Her BP is the highest at 7am. It is not anxiety, it is not just being worn out,it is not diet( she hasn't eaten anything)...that tells you it is just BP. I also have been doing the "potty" schedule that the urologist wanted. I give her meds 3 times a day( which now means every hour and a half throughout the day because I can't give it the same time I give the diuretic or the med to keep her from having loose stools) and have a scheduled time every two hours to take her to the potty whether she has to or not. What a pain in the ass!
I think i am just so frustrated in general. I stopped taking Abi to the private pre-school last month. Money was the main issue that and the medical stuff that keeps popping up. I missed so much school for her because it was two days and week and with drs appoinments we would have only gone twice in a month and you have to pay even if you don't go so it seemed like a waste of money. Abi was crying everytime we got in the car and got on the highway because she didn't feel good and she just wanted to go home and rest.Hannah has to get braces in the next couple of months and they told me how much that was going to cost, ouch! Chris is a carpenter in the union and their contract is up April 1st and it is looking like they are going to strike...which means no money coming in at all. I really hope they can reach an agreement before that. The higher-ups in the union want more than the workers are willing to take but the company owners aren't willing to do any of it. I know that work is slow, very slow. I also know if it came down to it we would move for Chris to keep his job in the union. I guess we will see in the next month.
Then there is the Tucker family. I just worry about them so much since loosing Brody. I worry about them but it also brings to light the fact that I could be in their place and it scares me. I know that with Brody their came a point when his little body had just been through so much. What point will it be for Abi? How much of this medication is hurting as much as it is helping? That was some of Brody's problem..the meds were making worse his condition but they had to do the meds to keep him going at all.It is just scarey to think about and I try not to think about it but how can you not think about it. Sorry for the ramble....
I really am happier than I have been in the last few months. I really am trying to only think of the great things that I have to be thankful for. I know that we are lucky. I know that no matter what our little family will stick together. I just wish that there were breaks in the choas more often.

brody

2009-03-07T08:23:00.002-06:00

Brody became an angel at 3:09 am this morning.

Please pray for my friend and her family...

2009-03-06T07:44:00.003-06:00

I know that I have mentioned this family before in several post but this was the latest update that was posted for Brody.
"I'm not sure how to address the issues we are facing with Brody right now. Brody has been fighting acidosis since the begininning of Febraury, that we know of. His liver function has dramatically declined. He is having a very hard time right now. Brody is tired and restless.
Gary and I had a conference with his transplant doc, genetics, cardio and the ICU attending doc. They have contacted Pittsburgh to see where they stood on his liver/intestine transplantation decision. Dr. Canter told us Pittsburgh has decided not to list Brody. They feel that he has a systemic involvement with his mitochondrial disease, as so do the doctors here. The doctors here believe his mitochondrial disease is progressing. They do not believe that all this acidosis is caused by just his liver dysfunction. They think it's in his blood, kidneys and bone marrow on top of the already known affected organs of liver, muscle and heart.
There is not much the doctors can do here. So we now have a short-term and long-term plan. The short-term plan is to hopefully get his acidosis under control temporarily for some relief. However, it hasn't gotten back under control and if it does it will eventually creep back up again. So our long-term plan is treating the symptoms.
What I'm basically saying is hospice care. If he gets stable enough, Gary and I are taking our baby boy back home so he can be with his family. So that he can be a "wireless" boy and be cuddled and loved. We've already made the nurses put him in a big bed here so we can lay with our baby boy. I love it. As for treating his symptoms we will continue his TPN and whatever acid-buffer solution they want to use. We will also begin giving him morphine for his pain. The nurses have already started the morphine last night. He tolerates it well and gets great relief from it. We all know how this type of hospice plan ends.
We are hoping to be able to go home by Monday, it all depends if he is stable enough to leave. Our primary concerns right now is to continue to treat his acidosis, relieve his pain and just love him. If people want to visit, he is in CICU room 11. But we are trying to have him rest as much as possible. I am having my parents come back up with Bailey today b/c she left yesterday. We have no idea what to tell her, but we will find a way. This is the hardest and scariest thing we have ever had to face. But our new fight now is to keep him comfortable. I will try to update later with any changes."
This family has been through so much. Brody does not have WS, he had a heart transplant last year and soon after they discovered the mitochondrial disease. Brody will be 2 the end of April. Their daughter Bailey is 7. They have traveled between KC and St Louis for the past 2 years trying to get the needed care for Brody and flew to PA last week to get another opinion only to have Brody flown back to KC by the hospital jet because he was so sick. I have grown very attached to their family and my heart breaks for them. Melissa, Gary, Bailey and Brody( who is the strongest little boy ever) ...the Tucker family.

Homeschool PE

2009-03-04T06:51:00.002-06:00

It really went okay. There were only two other kids though, a little boy who is 9 and a girl who is 7. I got to see yet again how different my child is from other kids. Abi is so tiny. The girl who is 7 towers over Abi. They were walking the track and holding hands and Abi didn't even come to this girl's armpit. Abi will do well, the teacher is male so she loves that. The only downfall is that the teacher told her at the end of the month he will give her candy, her concept of the end of the month is just not there...so she cried all the way to the car because she didn't get her candy and she wasn't leaving until she got it. I guess I will just bring a sucker with me and show her that I will leave it in the car for when she is done. Maybe that will stop the crying. The mom of the little girl I know. She used to be an aide at the elementary school here in town so she knew Abi right away. We got to talking about the school district again and she let me know the reasons she pulled her daughter( out of Kindergarten) and started homeschooling. Her family runs a daycare here in town and she is trying to get more homeschoolers together. She said Abi and I can come play with her daughter anytime they are always at the daycare. Maybe if I get out of my safe little box and do it great things will come from it. I guess we will have to see if I can reach that far out of my comfort zone and make new friends. :)

Latest Doctors visit...

2009-03-03T11:09:00.004-06:00

Saturday we got 4 plus inches of snow. They only forcasted 1-2. We went sledding both mornings Saturday and Sunday and had a ton of fun.

Yesterday Abi and I went to the urologist. This appointment I have been putting off. In fact I have put it off for almost 8 months. I knew what he would say and I knew what he would want to do. He wants to do another urodynamics study to see if any of her bladder issues of gotten better ( or worse) since the surgery on her spinal cord last summer. Again I know the results of that testing but we still should do it.I know that she is not getting any better in the potty training department. I know that the spinal cord surgery wa for nothing and we did it twice! I have to say though it is one of the most painful, horrible tests that I have seen done on my child. There is no way I want to sit by and hold her down for another one...but I will because I have no choice. No one else will do it for me. I have to. There is no anesthesia. There is nothing like holding your child down who is terrified of a hospital gurney gloves and needles,while they thread a catheter in her( which looks like a needle to me) and then fill and empty her bladder through that cath while taking pictures with an ultrasound machine. They fill and empty her bladder at least 3 times. The test takes a few hours really but they never tell you it takes that long. All the while Abi screams and crys and begs for me to help her and I have to just hold her down and tell her it will be okay. When honestly it isn't okay. Nothing about it is okay. It just sucks. This is what I get to do sometime in the next 2 months. They haven't scheduled it yet I should get a phone call soon. For now she is on another medication 3 times a day to help control the bladder spasms that cause her to feel like she has a bladder infection. The muscles in her bladder just don't know what to do and honestly there really is nothing that can fix them. The last great hope is medicine.

I also got to spend the last 24 hours with my mom. Honestly I love my mom, she is my only relief when I need a break from the kids but.....she can make me feel like I am 14 again. The constant nagging at what is wrong with me, what is wrong with my house, what is wrong with my husband, what I could do differently, that I look so unhappy and I just need to cheer up( like I haven't even tried), she tells me my pants are too tight, my shirt shows too much( like I have cleavage to show!),my eyes are so tired and I just plain look worn out.....thanks for the pep talk, I'm sure that all the negatives help my mood, Mom! I know that she means to help but it just never comes out that way. I don't need someone to micromanage me, I can screw it up all on my own, thank you very much! I just need someone to help me. No questions. No judgement, just help.If you don't think my house is clean enough..clean it for me then, because that is pretty low on my list of stuff I have to take care of.

I also found out that my Grandma has colon cancer. The doctors say it is an" extremly large mass" in her colon/large intestine and they will have to do surgery in the next week or so to remove it and then they will deciede what to do from there. My brother has not really learned anything about his siezures except they are still running tests. My older brother has now tripled his blood pressure medicine in the last two months and his BP is still VERY high. I was doing better emotionally...now not so much. I just think I need to get away and regroup. Maybe if it is nice this weekend it might help.

Today is the first day for the Homeschool PE class I signed Abi up for at the Community Center. The age group is 5-12 yr olds( all typical kids) I guess we will ride it out for the month and hope for the best! Tues and Thurs afternoon we are going. Mom gets to stay and watch because when I signed her up they kind of got freaked by the medical stuff. Normally they don't want the mom's there, I get to break the rules though! I told them she would be fine just don't push her too hard, she won't quit unless she needs too. If she stops and want to lie down it is because she needed to a long time before but she will push herself until she can no longer handle it. I am more than a little nervous about a new group that doesn't know WS and the thought of explaining it all just makes my stomach turn!

Well, I guess that is my update for now!

The days wear on...

2009-02-27T13:10:00.002-06:00

Today was supposed to be an uneventful,relaxing day. Never seems to work out like that though. As I am catching up on blogs, I get a phone call from Hannah's school. The school nurse calls to tell me Hannah has a fever ( okay is 99 really a fever? ) and that she looked in both ears and they were very red and angry. So I go pick Hannah up and call the dr to see if she can squeeze us in. The dr says she can but we will just have to sit and wait for a spot. Not the most relaxing way to spend a couple of hours. Then she looks in Hannah's ears and they are totally fine. Her throat, totally fine. She just has a cold and is conjested. Not quite sure if the school nurse is color blind or not at this point....I guess it just makes me feel even more like keeping Abi out of the public school is probably the best decision.
The highlight of my day...I got the report from Dr Kaplan at CHOP. I know, you may be asking "how in the world is a doctor report the highlight of your day?" It was the little things that were written in the report...
" Abigale came to clinic with her parents, Noel and Chris Clayton. Her siblings Hunter, Hannah and Lathan waited patiently. History was obtained from her parents, and approximately 300 pages of medical records kindly supplied by them were reviewed. " the comment about the older kids made me smile.
" After having reviewed the medical reports before Abigale’s visit, were expecting a very sick child with multiple problems. We were delighted to meet Abigale and her parents, and pleased to see how well she is doing despite the many complications that have occurred as part of Williams syndrome. " That just makes me look at Abi in complete amazement.
" A large group of children diagnosed with SVAS and PPS in the first year of life at CHOP was studied for many years. It shows that the SVAS and PPS, commonly required surgery and or angioplasty - usually before 5 years of age. Most of these children do not require surgery after that age, and overall mortality is low, probably because of early cardiovascular intervention." That just makes me happy to see that things heart wise should be looking up. It gives me hope that things might really be okay someday.
" Abigale’s parents and physicians are giving her excellent care. We are impressed with the way that Mr. and Mrs. Clayton have dealt with all the many complicated aspects of Abigale’s condition. It was a pleasure and privilege to meet them."
I'm sure you know why this has to be my favorite though. To get the recognition that I am doing everything I can do that I am doing it right, that there are professionals that think I am doing a execellent job. We can do this...it is possible. I just want all of you to know that we are all doing the best we can in the situations we were given. After reading this report I have to say that I feel better about myself. I may not be perfect but I am trying my best to figure it all out.

Newton's 1st law of motion and teenage boys....

2009-02-25T18:09:00.003-06:00

Newton's first law is also called the law of inertia. In a simplified form, it states that if the vector sum of all forces (also known as the net force) acting on an object is zero, then the state of motion of the object does not change. In particular: Newton's first law: An object at rest remains at rest and an object in motion will remain in motion unless acted on by an unbalanced force.
An object that is not moving will not move until a net force acts upon it.
An object that is moving will not change its velocity (accelerate) until a net force acts upon it.
The first point needs no comment, but the second seems to violate everyday experience. A hockey puck sliding along a table doesn't move forever; rather it slows and eventually comes to a stop. According to Newton's laws, though, the hockey puck does not stop on its own accord but because of a force applied opposite to its direction of motion. That force is easily identified as a frictional force between the table and the puck. In the absence of such a force, as approximated by an air hockey table or ice rink, the puck's motion would not slow.

Now on to the explanation of the picture.....Yesterday was a beautiful day and we went to the park. Well at the park Abi, as always, is drawn to the merry-go-round. She was riding and Daddy was spinning. The boys were on it too. Hunter suddenly has a brilliant idea " Hey, if I grab on to it while it is spinning I think my feet will fly up in the air like I am flying! " Chris then says(kind of joking) " well, let's try it!" So Abi gets off...that way Chris can spin it faster...Lathan gets on for counter-balance so that the force is maintained while Hunter tries to jump on grip with his hands. Well, he did it successfully for about 5 seconds and then his hands slipped and his body skipped across the pebbles on the ground until he came to a stop. He landed on his arm. He said it hurt but really he was not that bad off. It wasn't like Hannah and you looked at his arm and went "ouch". Then Lathan( yes, my super smart kid) says " I think I can last longer" And Chris ( after gaining his composure from laughing so hard he was rolling on the ground and drooling...not kidding I thought he might pee himself) says " okay. Maybe I can spin it faster this time!" HELLLLLOOOOO!!!! And don't you know it they do it and Lath does hold on for about 7 seconds and then falls but he is a little more graceful in his fall and rolls when he hits the ground. To be fair Hunter had on shorts and a t-shirt and Lath had on a long sleeve shirt and jeans.

Anyway so off to the ER today to get an X-ray. Two months after Hannah breaks her arm. Hunter's arm does not seem to be broken, just lots of soft tissue damage. After the swelling goes down he will get another x-ray in a couple of days to know for sure. For now he gets a hard splint for a week and sees the dr again and goes from there. I call Chris to tell him and his question is " what about baseball? He is our pitcher and we start in a month." My answer " don't you think that should of crossed your mind as you were telling him to grasp on to a moving merry-go-round?" MEN!

Heart ball pics and such...

2009-02-24T14:31:00.002-06:00

All in all the Heart ball was alot of fun. It was hard, one of my friends who lost her son made a short video of his story that was played, and we all cried. Especially Abi, she was so sad because Valerie was sad. Then as soon as the video was done being played the kids were all introduced. Abi of course says her name and age and then says " Thank you, thank you very much" as she bows to her adoring audience. I swear you could hear half of the crowd say " awe" at the same time. Abi was totally in her comfort zone, pretty dress, check, adults that are constantly telling you how cute you are, check, salad, check, all the pop you could drink, check... I however was so very far from mine. I hate crowds. All of my self-doubt tends to rise to the top. We took several pictures, one of the three of us from a photographer...and all I could think was gosh I look old and fat! So, since the Heart ball I am back to beating myself up. Not that dressing up caused it, it just made it easy for me to find another reason to do it to myself...

I really am trying to get out of this funk that I am in. I just keep finding reasons to jump back in.

Taylor Swift- "Tied together with a smile"

"Seems the only one who doesn't see your beauty,

Is the face in the mirror looking back at you

You walk around here thinking you're not pretty,

But, that's not true 'cause I know you

Hold on, baby, you're losing it

The water's high and you're jumping into it

And letting go

And no one knows,

That you cry,

But, you don't tell anyone

That you might not be the golden one

And you're tied together with a smile

But, you're coming undone ...."

Abi's humor....

2009-02-19T13:40:00.002-06:00

I have to tell a little story from the other day at Wal-Mart. Abi has really been noticing the other little kids that are missing teeth. She will comment about their teeth being gone too. We had just been talking to a little boy that was missing two front teeth and that is when we got in line to leave. I am busy getting stuff out of the cart and Abi is talking away to the cashier. Abi is telling her all about the fact that we bought High School Musical and we have the other 2 at home. How much she loves to watch the movies and sing along with them. Everything is going well and then out of my beautifully sweet daughter's mouth ...." Hey, you have teeth missing just like me!!" of course Abi was grinning from ear to ear and just as happy as could be that she had something in common with this woman, the woman on the other had to be mortified! Thankfully the woamn played it off and just told her that " Yes, You are right." and finished scanning our items so that I could make my escape.

Abi of course did nothing wrong but she can make me want to sink into the ground or disappear quite often with what she says. You have to love her! And if you didn't laugh at it...you really must be having a bad day!

Did I win or lose?

2009-02-18T14:24:00.002-06:00

I am not at all sure if I won or lost this round with the doctors believing me. We went in with our BP cuff and I took her BP in the waiting room 118/60. We walked in and I talked with the nurse for a minute because I had to explain what I needed her to do. She walked out of the room and found a different cuff and took her BP herself. What did she get 118/60 just as I did. So my cuff is not wrong and I am right. Then just to prove my point " take it with the machine and the same size cuff" 106/54. HA! I have told them and told them that if you take Abi's BP with a machine it is always lower than if you take it manually. I am right.....but part of me hoped that I was wrong. Me being right means that her BP is going up again.

We also took a peek at her eyes today. She does not need glasses yet. Abi is a little bit farsighted(every other kid in the family is nearsighted) but not enough for glasses yet. The main point of the visit was to look at the blood vessels in her eyes. There is one that is starting to be of concern but still watch and wait. It is "wavy" to look at. I know this doesn't mean much but we are looking for the same type of narrowing in her eyes that are throughout the rest of her body. So back in 6 months to re-check.

Back to the dr for Abi

2009-02-18T07:50:00.002-06:00

Today we are going back to the hospital just to have her eyes checked. It has been a couple of years and they keep telling me at some point her eyes are going to start getting bad due to all the blood pressure issues we have BUT so far there hasn't been a problem.
Also when we are there we are going back up to nephrology to stage a sit in. Okay not really but we are not leaving until they check her bp with several different cuffs and by several different people because it is high, even though they say that the 24 hour monitor came back okay. Yes, it came back okay that was the day she laid around and did nothing but nap and watch movies because she was sick. I told them this but they seem to be okay with the readings anyway. I do not agree so I guess I have to go into " tigeress" mode and make them take a better look. I still do not have the reports or films from CHOP but I am working on getting them. They recommend a scan of her kidneys every 3 months and here they only see her every 6 months and haven't scanned her kidneys in 2 years!
OH WHAT FUN!!!!

Toothfairy time!

2009-02-16T15:38:00.002-06:00

Saturday we noticed that Abi's tooth was really loose on the bottom. A few short hours later and it fell out on its own.She was so excited that the toothfairy was coming. It was funny when she got up and we reminded her to look under her pillow. She ran upstairs and you could hear her scream and yell all because she got a dollar! It just makes me smile!

Update on me: after doing lots of blood work and testing the only thing we could come up with was stress induced anxiety that is almost a panic attack. Because of all of the stress and then the lack of eating,anxiety, up and down blood sugar,lack of sleep...it has caused my immune system to take a hit. The doctor suggested Paxil but I really am feeling better and doing better so I told her I would stick with Xanax on a need basis...I just had to promise to start taking it before I was totally stressed out and unable to deal with any of it. I have to say the week I have been taking it has made me feel like I can handle it and that it will all be okay. Plus it is not something you have to take all of the time.At least this time I was honest with the doctor and told her the whole story so she said the next time I get sick with something she is going to just point blank ask me if I am doing okay...if I automatically start to cry then she will know that I am not handling it well and that is what she will treat too. It is tough to go to a doctor and ask for that kind of help but I really think I needed it. I needed someone to notice and to help me.

Stress is fun( not)

2009-02-13T07:43:00.003-06:00

Yesterday while I was sitting in the line to pick up Hannah from school I get a phone call on my cell phone. I didn't know the number so it went to voicemail and I listened to the message. The message said " this is Samatha, can you call me back I need to talk to you" Of course it was the sheltered workshop where my older brother spends his days so I kind of freak a little, I have never talked to them. Then I start thinking...well why would they call me I live 2 plus hours away! So I call back and she asks if I have a way to get in touch with my parents. What? Then she says well your brother was here earlier in the day but before it was time to go home, no one could find him. They called my parents house, went by the house, looked around town a bit for my mom's car but can't find either of them. Okay. So now I am freaking. I call my dad's cell and he is working in a town a few hours away. He has no idea of any plans to pick up Shawn early but says my grandma is in the hospital maybe she took a turn for the worse and mom picked him up to head over there. WHAT!!! No one told me my grandma has been in the hospital for the last 3 days! My mom has a cell but never has it on. I called my grandpa and he said he hadn't heard from them. I call the workshop back they checked with the doctors in town, no luck. They sent someone back to the house to check. I told them if mom is gone and Shawn is there by himself, he is deaf he can't hear the phone or the doorbell so he wouldn't answer anyway...I told them to see if the door was unlocked. Then finally I get a call from my mom. After I throughly yell at her for worrying everyone( they went shopping for clothes) she says that she came early to pick up Shawn and was sitting in the parking lot reading but Shawn walked out and got in the car. She thought he had told someone that he was leaving. Guess, what, he hadn't. I guess the good thing is they were on top of it. They notice he was gone within minutes of them leaving and tracked them down within the hour, without the help of the police. BUT there went my stress level for sure!
While I was on the phone trying to find my brother and mom...Abi decieded to "play" in the bathroom. She brushed her teeth with half the tube of toothpaste on my toothbrush. Plus, I learned something else....Did you know that a large bottle of Listerine is not 6 year-old-Special needs -child proof? She used an entire new bottle! She swears that she spit it all out, which I believe because she uses it everyday( under my supervision) and she has never swallowed it....but still!!!

UUUUGGGGHHHHH !

Pictures(finally) and a short explaination....

2009-02-11T09:04:00.002-06:00

Make an on-line slide show at www.OneTrueMedia.com

First off the fun stuff! Tara and Payton came and played with us this past Saturday. It was a perfect day, a bit windy but sunny and 70 in Missouri at the begining of February! We went to the park and had lots of fun. I did not get many pictures I was too busy talking to remember to take them...so above are a few! Then we went back to our house and played in the leaves and looked for rolly-pollies and "gary" snails.
It is always so great to get together with Tara and talk. It is nice on the computer to know that others understand but to get that one on one is just priceless. I have been struggling with alot recently but spending time with Tara helped pull me out of my funk.
Chris went to Vegas this past week and came home Saturday night. I thought, hoped really that I would be so excited to see him again and that things would be back to "normal"....didn't happen. We have fought more than ever. I am an emotional wreck for the most part, but it is only in the evenings and at night. So I went to the doctor Monday morning begging for some kind of magic. They are running some tests but I think I figured out on my own what it is. You see, I am anorexia at heart. All of the insecurities come out when I am left on my own or I feel like I am being rejected or failing at something. Recently I have been hit with both. Rejection from Chris( not being able to go with him) and failure with Abi and seeing her stand still developmentally again. That is something I don't handle well. So in turn if I feel like I am not in control I revert back to my anorexia. I can control what I eat.In a way it is a form of punishment to myself. I can beat myself up better than anyone else ever could. I am very hard on myself. It took my friend Martha calling to make me realize it. She called and the first things she asked me " eat much lately?" it was like a sucker punch. I had been found out. I hadn't honestly eaten more than a few cheezits since Tuesday and it was Friday. I can say that by Sunday I still hadn't eaten much. I eat when people are around and will notice...if no one is there to notice...I get away with it. Well this time it has messed up my blood sugar big time. I will actually start shaking because it is so low. I am now correcting that problem( I'm sure for the time being) it always seems to come back to haunt me. I can never totally escape from my self doubt and "punishing" myself for failing. I have tried counciling but honestly I am just too good at telling them what they want to hear. I still will eventually go back to old behaviors. So, I just need to ask for help when I feel myself falling. I can never ask for help though. I always stick it out until I just end up so down I don't know how to pick myself back up. That is when I start pushing everyone away. If I push them away...they can't leave me. I am my own worst enemy. I know that there is so much to be thankful for. My friends( which include all of you) who always seem to be there no matter how much I push them away, my husband who seems to love me even though I can be way too hard on myself and in turn he feels like it is his fault,my children who find me out and then rat me out because they worry about me( thanks Lathan for telling Daddy that I wasn't eating...he is my protector through and through and I would not know what to do without him),but most of all I thank God that I can somehow, someway find my way back to myself and He always seems to be the key to that. So ,for now I spend my days trying to pick back up the pieces that I have shattered in my own life.

My deepest fear....

2009-02-07T19:49:00.000-06:00

Our Deepest Fear
by Marianne Williamson
from A Return To Love: Reflections on the Principles of A Course in Miracles

“Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.”

sickness all around....

2009-01-26T17:13:00.002-06:00

Over the weekend Chris and I spent alot of time together. My parents took the kids Friday night and we didn't see them again until Sunday afternoon. It was nice we did get to spend alot of time talking through much of the stuff we needed to BUT Abi was sick when we dropped her off and even worse when we picked her up. Talk about guilt for me. The one time I make an effort to take time away and my kid is pretty darn sick. Makes me feel horrible. I know I shouldn't be so hard on myself but I can't help it. Mommy guilt will get you every time. We had a nephrology appointment today so we went to that first. Abi's BP is high again but only when taken manually not high on the machine. So we are doing a 24 hour monitor and we will see what it says and go from there. He thinks it is time to look a little further into the root of the problem. So he is talking MRI, maybe angioplasty depending on how the 24 hour monitor goes. He will raise her medication doses for sure though.
Then on to the regular doctor to find out that Abi has two ear infections and an upper-respitory infection going on that is also effecting her lyph nodes. So antibiotics it is. I of course still am sick myself. On my second round of a stronger antibiotic to see if we can knock it out!

" The five languages of Love"

2009-01-23T08:05:00.002-06:00

As I have said before, right now I am having a hard time. It really is a bunch of little things that add up and create this huge issue. Chris going to Vegas next month, Abi's BP going up, I am sick myself again with a sinus infection that has gone into my lyph nodes again, the kids fighting with each other....and the thought of handling it on my at all is just driving me to be bitter and sad. I have been reading the "love Dare" and I do like that book a lot. It really has helped me to do things differently and just react differently to things that bother me BUT I am still searching for why those things re-occur and the book "the five languages of love" may have just hit the nail on the head. In the book it explains that every feels loved in different ways, there are many sub groups but most fit into five major ones. ( they are listed at the end along with a short explaination). In the book it goes into stories from people who have sought out counciling and one of the first stories they go into is the fight that Chris and I always have. It is almost scary how close to the same conversation it is. Well, I had Chris read that part of the book and he had the same reaction I did. We both are just not giving love the way the other needs it to be given to get the most out of it. He falls into the "words of Affirmation" and I am " quality time" the probelm is that we tend to give our love the way we want to recieve it or we use the model that our parents taught us and what they needed. Yes, we do love each other very much but both of us feels like the other isn't 100% there with us.
The book at the end gives a short quiz so that if it doesn't just stand out to you which language you fit best you can try to figure it out. It also states that if you use this same language with your child you will be amazed. They too have their own languages of love. Honestly, with the four kids I can pinpoint three different types, Lathan and Hannah are the same as Chris but Hannah does go toward picking a different one once in awhile. It is not to say that they way you are giving them love is not getting your point across, this just might be a more effective way to do it.
I guess I will let you know how it goes but for now I have a renewed feeling of being able to get out of this funk that I always seem to fall into.I know that it is not the cure-all but if it helps to get my point across to Chris, and it already has, then it is worth it. I could not explain it to him in a way he would understand but this book was able to get my point across to him in a way that he understood and is now responding to. And like both of those books say, true love is not something you fall into it is something that you choose and you work at keeping. You give of yourself for the otehr person and don't expect anything in return but reap the benifits when your spouse feels that you love them the way it means the most to them.

The Five Love Languages

-Words of Affirmation
Mark Twain once said “I can live for two months on a good compliment.” Verbal appreciation speaks powerfully to persons whose primary Love Language is “Words of Affirmation.” Simple statements, such as, “You look great in that suit,” or “You must be the best baker in the world! I love your oatmeal cookies,” are sometimes all a person needs to hear to feel loved.

The Five Love Languages:
How to Express Heartfelt Commitment to Your Mate

Aside from verbal compliments, another way to communicate through “Words of Affirmation” is to offer encouragement. Here are some examples: reinforcing a difficult decision; calling attention to progress made on a current project; acknowledging a person’s unique perspective on an important topic. If a loved one listens for “Words of Affirmation,” offering encouragement will help him or her to overcome insecurities and develop greater confidence.
-Quality Time
Quality time is more than mere proximity. It’s about focusing all your energy on your mate. A husband watching sports while talking to his wife is NOT quality time. Unless all of your attention is focused on your mate, even an intimate dinner for two can come and go without a minute of quality time being shared.
Quality conversation is very important in a healthy relationship. It involves sharing experiences, thoughts, feelings and desires in a friendly, uninterrupted context. A good mate will not only listen, but offer advice and respond to assure their mate they are truly listening. Many mates don’t expect you to solve their problems. They need a sympathetic listener.An important aspect of quality conversation is self-revelation. In order for you to communicate with your mate, you must also be in tune with your inner emotions. It is only when you understand your emotions and inner feelings will you then be able to share quality conversation, and quality time with your mate.Quality activities are a very important part of quality time. Many mates feel most loved when they spend physical time together, doing activities that they love to do. Spending time together will bring a couple closer, and, in the years to come, will fill up a memory bank that you can reminisce about in the future.Whether it’s sitting on the couch and having a brief conversation or playing together in a tennis league, quality time is a love language that is shared by many. Setting aside focused time with your mate will ensure a happy marriage.
-Receiving Gifts
Some mates respond well to visual symbols of love. If you speak this love language, you are more likely to treasure any gift as an expression of love and devotion. People who speak this love language often feel that a lack of gifts represents a lack of love from their mate. Luckily, this love language is one of the easiest to learn. If you want to become an effective gift giver, many mates will have to learn to change their attitude about money. If you are naturally a spender, you will have no trouble buying gifts for your mate. However, a person who is used to investing and saving their money may have a tough time adjusting to the concept of spending money as an expression of love. These people must understand that you are investing the money not in gifts, but in deepening your relationship with your mate.The gift of self is an important symbol of love. Sometimes all your mate desires is for someone to be there for them, going through the same trials and experiencing the same things. Your body can become a very powerful physical symbol of love.These gifts need not to come every day, or even every week. They don’t even need to cost a lot of money. Free, frequent, expensive, or rare, if your mate relates to the language of receiving gifts, any visible sign of your love will leave them feeling happy and secure in your relationship.
-Acts of Service
Sometimes simple chores around the house can be an undeniable expression of love. Even simple things like laundry and taking out the trash require some form of planning, time, effort, and energy. Just as Jesus demonstrated when he washed the feet of his disciples, doing humble chores can be a very powerful expression of love and devotion to your mate.Very often, both pairs in a couple will speak to the Acts of Service Language. However, it is very important to understand what acts of service your mate most appreciates. Even though couples are helping each other around the house, couples will still fight because the are unknowingly communicating with each other in two different dialects. For example, a wife may spend her day washing the cars and walking the dog, but if her husband feels that laundry and dishes are a superior necessity, he may feel unloved, despite the fact that his wife did many other chores throughout the day. It is important to learn your mate’s dialect and work hard to understand what acts of service will show your love.It is important to do these acts of service out of love and not obligation. A mate who does chores and helps out around the house out of guilt or fear will inevitably not be speaking a language of love, but a language of resentment. It’s important to perform these acts out of the kindness of your heart.Demonstrating the acts of service can mean stepping out of the stereotypes. Acts of service require both mates to humble themselves into doing some chores and services that aren’t usually expected from their gender. However, these little sacrifices will mean the world to your mate, and will ensure a happy relationship.
-Physical Touch
Many mates feel the most loved when they receive physical contact from their partner. For a mate who speaks this love language loudly, physical touch can make or break the relationship. Sexual intercourse makes many mates feel secure and loved in a marriage. However, it is only one dialect of physical touch. Many parts of the body are extremely sensitive to stimulation. It is important to discover how your partner not only physically responds but also psychologically responds to these touches.It is important to learn how your mate speaks the physical touch language. Some touches are irritating and uncomfortable for your mate. Take the time to learn the touches your mate likes. They can be big acts, such as back massages or lovemaking, or little acts such as touches on the cheek or a hand on the shoulder. It’s important to learn how your mate responds to touch. That is how you will make the most of this love language.All marriages will experience crisis. In these cases, physical touch is very important. In a crisis situation, a hug can communicate an immense amount of love for that person. A person whose primary love language is physical touch would much rather have you hold them and be silent than offer any advice.It is important to remember that this love language is different for everyone. What type of touch makes you feel secure is not necessarily what will make your partner happy. It is important to learn each other’s dialects. That way you can make the most of your hugging, kissing, and other physical contacts.