Facebook post from Jenn on November 17th, 2021
November 17- I've always celebrated this day as a special day. World Prematurity day. I begged God to save both of my little babies many years ago, and he did. Now, I am saying a different plea. I beg God not to be done with Julian. Today has been a hard day in the many ups and downs of this journey we have been on. He has come so far, but still has so far to go. I find myself wondering many days why God has tested me so much with each of my children. I have always wanted to be a mom, and with the help of God (and science), I was blessed with my 3 children that I love more than anything. The twins pregnancy was touch and go very early, but was able to get them to 32 weeks, and then they continued to fight to be who they have become today. Julian's fight is different, but heartbreaking to watch.
The pictures are of Julian when Lindsey set Julian up with an assistive device (like doing a pull up with a band to help pull yourself up) so that he could feed himself some gummy bears (it's what I had on me and available . The simplest thing made him smile so big. I want that smile to continue and would trade anything if I could for it to continue. We are preparing to go home, and making sure all the plans and care is ready for him. So much is being done down to the wire. Shepherd has done so much with his therapy. We have tried to do the best we can so that he can continue to the best of our ability. They make it so that he can be independent. What it looks like here is with the help of a power wheelchair with a "sip and puff" that allows him to drive and control the chair with the use of a device in his mouth. This is a very unique wheelchair and like everything else is also still in the works of being approved by insurance and still needs to be made for him so that at home he can continue to be able to do things by himself so that smile will remain on his face. Unfortunately, we get a loner chair from the vendor and they don't have one available. I need big prayers that somehow we will find a way to minimize the time Julian won't have what he needs. It's so sad that care is determined by what insurance will cover and navigating the red tape. Each time we are placed against a wall and obstacle to climb, it makes me think of everyone that might not be so fortuate to have the resources we have or the knowledge to know what to fight for. I never thought that I would be faced to advocate for my child to be able to have a wheelchair that meets his needs. Life keeps throwing this sweet kid punches and I hope he keeps punching back. Against all odds is what his life is about. Give us a hill and we will keep trying to climb, even if we feel alone. I am hopeful he will get home and find happiness in seeing his family and friends that he hasn't seen in so long, and if we don't have everything we need right away that we will find a way to navigate this as well.
Kristen Britt O'Brien and I are both on this similar path with the up and downs. We both had pretty rotten days, but somehow managed to take our boys to eat (walking down the Peachtree St beside them), and ending it laughing together when we just want to cry. I do believe with all my heart that God put them in our life to walk beside us and be there for each other. We are living the unimaginable and only those experiencing it can truly comprehend what this is like. I don't know what I'm going to do when she isn't 8 dorm rooms away. They will always be a special part of our family.
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