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 mix....it 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
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