Monday, May 28, 2012

One Year Since Diagnosis

 Peyton had a check up in Iowa City last Friday May 25th, it marked one year from his diagnosis. To think that he has been fighting this horrific disease for an entire year just astonishes me. He is so brave and strong. Our clinic visit was amazing and all of Peyton's numbers have recovered fully from transplant. I could not have asked for a better team to take care of our son. The Pediatric Hematology/ Oncology in Iowa City is amazing and I cannot thank them enough.  They are always so glad to see Peyton and how he is improving. Sometimes I think they are as happy as we are...I know they are! To think of everything that the body goes through to have a bone marrow transplant or a stem cell transplant is unbelievable....but Peyton really just sailed through it all with a smile on his face. There were days that felt like years, but somehow we made it through all of it and that was because we had amazing support from friends and family, prayer and most of all God.
When bad things happen, your first instinct is to be angry and say how it is not fair and why you. But when you find peace within your soul that is when things get better.  I always say.. "In life you are dealt a hand what you choose to do with that hand is up to you."
Meaning that it is always easy to "fold" your cards and say, " I don't want that hand", but the true warriors are the parents that choose to "play" the hand and fight through it all.
Peyton has been doing amazing over the last couple of weeks. he seems more alert and wanting to do things. I finally think for the first time that when I look at him, I don't see a sick boy....I just see Peyton. The sweet, bright blue eyed boy with a smile on his face. I don't see the wheel chair, or the equipment or the pull up pants....I just see my sweet boy. It is almost like i feel that we have been doing this all his life even though it has been a very short time.
A dear fellow LD mother said something that has stuck with me...Her son has the same disease as Peyton and she says how frustrating it is to have people stare, which IT IS!
She posted. " Thank you for noticing that I am a miracle so smile at me instead of staring".....How powerful! These children are miracles!
Don't stare at people with disabilities. It is OK to notice them....but to constantly stare and what your saying is kind or not..IS A TERRIBLE FEELING. We are just families trying to move on with our lives in the best way that we can....and do ordinary things. Think about that next time you are out in about!

So to wrap things up our One year has been filled with tons of emotions but most of all.......hope and love!
Counting down the days until we leave for Peyton's Make A Wish.......we leave in 4 days!!! so the next post will be about our amazing time and pictures:)

with hope and love

Thursday, May 17, 2012

Life's Choices

Next Friday on May 25th , it will be exactly One year since Peyton was diagnosed with Leukodystrophy. There are days that I cannot believe that it has been one year and there are other days that I feel like it has been a lifetime since then. It absolutely asstonishes me when I think of all my family has been through in a year......So as we approach this day, it is bitter sweet for me actually. This days will forever mark a turniong point in my life, my families life.

Peyton has had a lot of weird things going on lately...nothing major, but just overwhelming. Its hard to get the attitude that nothing surprises you anymore. I feel like we are getting to that point. It feels like when things are calm, that is when it doesnt feel right....not the other way around. I do not live in denile about Peytons disease. Accept the things you cannot change. We have accepted this....that doesnt make it easier. It doesnt make the pain go away. So with all of that said, we have made the decision to have shift nursing here to help me when it comes to Peyton. This was the hardest thing to decide. As a  mom, you want to be everything to everyone. And most of the time I can be. But at the same time.......i am wearing down. I am exhausted 99% of the time. I am constantly telling one of my kids to hold on a minute.....well most of the time that minute turns into a hour and next thing I know, my 4 year old is crying for that drink he wanted which leads me to cry in the bathroom because I forgot to get it when I was finished doing something with Peyton, or Parker. I felt like if I took the help that I wasnt going to be a good mom. Because I should be able to do it all.
The truth is , I am a good mom, and by accepting help for Peytons safety and health makes me a even better mom i think. Being a mom of three kids is hard enough, but when you add a handicapped or special needs child to that is a totally different ball game. He requires constant care. He needs help with all aspects of daily living. I am not complaining because I love him no matter how he is. But my other LD moms know and understand what this is like. So I have decided that we will have a nurse come into our home 3-4 days a week for a few hours and help out with Peyton. Do some of the medical things that takes so much of me away from my other two kiddos. People dont realize that I cant just take my kids outside to play by myself,  or take them for a walk. I cant just load them up and go to the store. I have a child in a wheel chair, one in a stroller and a toddler that is typical and wild. It is impossible,  and my husband is the sole provider for our family and works A LOT of hours and swing shifts. It will be hard to let someone else help but at the same time be great. The amazing thing too is that this way he will also have a nurse go to school with him.....which makes me feel 100 times better about him going :)
We had our big AEA meeting today and it was a relief to know that we are all on the same page for Peyton and school. He will attend Hoover Elementary in the fall for 1st grade. ( tears) I cant believe he will be in 1st grade!! Peyton will be in a regualr class setting. Not a learning program. Also today, he pushed off of his legs and stood without any support except for holding on to someones hands!!! Yes, I CRIED! It was absolutely amazing, I am so proud of him. He inspires me everyday!

With hope and Love ~ Jess

Tuesday, May 1, 2012

Preparing for 1st grade : /

Peyton has not even started school yet and we are already climbing a up hill battle. All of these evaluations in my opioion are ridiculous! How many people from the Area Education Agency have to come and give their opinions before we can just get the darn IEP written to be prepared for fall?!?! For those for you who don't know a IEP stands for Individual Education Plan. This is where everyone comes together to fit all of a child's needs into their schooling. Sounds easy right? Has not been so far. We have a final meeting on may 9th and depending on what they have to say, Jason and I will determine weather or not it is best to just homeschool Peyton or not. I would like him to go to school and make friends and have that experience, but I refuse to let them put my son in a category he is not in. I will not stand for that! Basically long story short is they have done no cognitive testing on Peyton( he is having that done in June in Ia City), so without even knowing where he is cognitively ( which is a normal 6 year old) the AEA tried telling me that due to his extreme physical needs he must have educational issues as well. Since when does a physicslly handicapped child have mental issues as well? In some cases yes, but not all! I was not only upset but just beside myself. Now if Peyton had a learning problem then I would be 100% on board for anything to help him adapt. But for anyone who really knows Peyton....knows this is just not the case. This is a child who by the time he was two could recognize every single one of his letters and numbers. He has been spelling since he was 3 1/2. He never had a single issue in preschool with learning. And i know that the cause for concern does not stem from his disease and the cognitive changes that can appear because none of them even know what it is nor have they bothered to look it up I'm sure. One of them thought he had Musculardystrophy. Not even close to the same thing. ( not that it isnt terrible too) This is all just so frustrating and the more I think about it, the more I get upset! If any of you parents out there have had similar situations and can offer any advice, I would greatly appreciate it! No matter what Jason and I will do what it absolutely best for Peyton. With hope and love Jess