Thursday, April 5, 2012

Day +215 post transplant

To look back at the last 215 days the first thing that comes to my mind is.....ROLLERCOASTER! And it truly has been one for all of us. We have watched our son go from a perfectly active 5 year old to a now 6 year old who is different in so many ways. Peyton has been requiring a lot of help lately with eating and drinking. Basically I have been feeding him and holding his sippy cup for him. Now I know what it's like for moms with twins since I also have a 9 month old to physically feed too! I think at times Jason and I get greedy because we want him to keep getting better but faster. I think any parent would. When P first came home he was making progress so fast, it made us so excited because we didn't expect that. But we have just stayed here now. A few more baby steps I guess but we have noticed no change from his waist down and neither have his therapists. His Neurologists had warned us from the beginning that she believed he would lose function of walking because he was progressing so quickly, which juvenile MLD usually progresses slower but Peyton from the time he was diagnosed( may) until we went to U of I for transplant( aug) was night and day. He was barely walking unassistedly. You think you prepare yourself, but NOTHING can actually prepare you for it. I think all of this time I have been in " warrior" mode as a great friend has lately pointed out to me. With it rapidly approaching the one year anniversary of when Peyton was diagnosed and we have been home for awhile, I look back and truly reflect on all that has happened to myself and my family over this past 11 months. She pointed out that it is almost like a post traumatic stress disorder. when I stopped and thought about it, she made perfect sense. So I thought about this for much my mind and my body had been through in the last 11 months. Peyton's diagnosis( devastating) ,the gift of a new life ( 29 days later) ,going to treatment (rollercoaster), but when I really thought about how I had been was NOTHING compared to what my sweet boy and his body has been through. How do you understand at 5/6 that you have a terminal illness? How do you understand that you are all the sudden so different and don't really know why? How do you get up everyday with a smile like it is the most beautiful day in the world? HOW? Peyton has been the bravest boy through all of this. Never complained. He has been going through so many emotions that he doesn't even understand and he has done it fearlessly! He is my HERO! I wish I could be half as brave as he is. My goal is to live day to day like Peyton. Brave and with a smile. I cant let MLD run my life! This is just the way it is..being upset, mad, frustrated...none of these things can change it. Of course there will be bad days, anyone would have them. It is not a sign of weakness but more a sign of having a heart and soul. I will no longer look to the future and get upset because there are no answers. In life there is never a guarantee. One day at a time, one hour at a time and even minute at a time. That's all we can do! But at the end of the day, I thank God first and foremost for keeping him here with us. The fact that he is HERE is the best gift of all isn't it?! No matter how he "is", he is here! With hope and love Jess

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