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How It Has to Be

This week!
It seems, every time we have some huge event representing Bo, he isn’t feeling great! He hasn’t felt great for a few weeks, he has lost a little weight which stresses me out. Getting more feeds then normal and just not 100%. We’re sitting at KU getting IVIG and fluids at the moment and he is super restless, my heart hurts for him when he is like this. The IV team comes in and places his line since he is still with out a port, and Tony, who,is wonderful after he and I had to hold Bo down. He rubbed Bo’s head until he feel asleep… that makes my heart Burst knowing how amazing he gets treated here! Tony asked me, how do you do it? How do you stay so positive, is it your faith, your family, what, you just amaze me is what he said! I smiled at him and thanked him and I told him we have amazing support, I can’t say you get used to your 4 year old getting poked and prodded on, that is something you never get used too. But you have to be strong, make sure he doesn’t see fear in your eyes, he needs me, he needs me to be strong, for him and everyone else. Believe me I have moments were I need to cry, where I’m frustrated and scared to death! I guess when you choose the responsibility of being a parent, you have to give up yourself in a way and be a that person who fixes everything weather it be a toy or wrap his arm in orange coban so he doesn’t have to look at the Iv, or the meds going through it. I like to think every single parent out there would do the same, I KNOW parents that are doing the same! All I know is we are trying, trying our best to keep smiling keeping our heads up! Waiting to hear from NIH was rough the first few weeks, then I had to tell myself, that this amazing boy is a large puzzle and putting the pieces together will take time. I can wait, we will wait and we will take it one day at a time, hour by hour if we have too! That’s just how it has to be.


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