So today I was digging around FB looking for a picture to show a friend. I never found it, but that's not what this is about. I came across photos on both of my sister's FB pages of Jax during some of his most difficult times. Right after he was born. When he was sedated and paralyzed after his mechanical valve was placed. Photos from when he had pins in his head for skull distraction. All things that bring tears to my eyes!
Remembering those moments is a hard, harsh reminder of everything that Jaxson has been through, and everything that he has yet to endure. But it is also a moment of wonder; look how far he has come! How many times has he defied the odds? Proven doctors wrong? Made us look for answers until we found them? I can't even count!
Jaxson has been through 12 surgeries and countless sedated procedures. He's been more stable over the last two years since his mechanical valve was placed, and his growth and maturation have blossomed into something beautiful. He's so smart, even if he can't always communicate it, and he is hysterically funny and loves to make jokes. He wants everyone to get along all the time and hates yelling (even at the dogs!). He is running, jumping, riding his tricycle and attempting to beat up his big brother when they play. He's a "normal" 5 year old in almost every aspect!
Does he have hurdles still in front of him? Of course. He has a compromised immune system that will likely land him in the hospital at least once a year in the winter. He has more heart surgeries to come as he grows and his valve needs replaced. He has weekly therapies outside of school, plus what he gets at school, to help combat his Global Delay and get him ready for kindergarten. He may need additional surgeries in the future, something we won't know until we get there.
But for now, Jaxson is healthy. He's stable. He has a ton of appointments, but all of them are follow-ups and not for a new problem. He brings joy to every person he encounters, just by flashing his adorably perfect smile. His new PT marveled to me the other day, it was their first appointment together, that he had made her whole morning. She was smiling and laughing as she brought him back because that spunky personality just makes you laugh!
I have tears, I hoped I wouldn't when writing this, but I do. I just can't get over how far Jaxson has come. Everything he has been through, every battle we've had to fight with him and make sure that he got what he needed, every tear we've shed and every sleepless night we have, it's all worth it. When I see him get off the bus and run to his brother or me or his dad (depends on who gets him off) with a huge smile on his face and a massive hug, I can't imagine anything better.
Jaxson, one day you will read these blogs. I've tried to keep up as best I can, and I know I'm not perfect at it, but I really hope that one day you will see the love you bring to people, and the love that people have for you. I hope you see that while mom was stressed and upset, I still made you and Jeffrey a priority. You are the light of my life, my little monkey. I know God has big things planned for you, and I can't wait to see what else you do to prove people wrong and be the most amazing you there is! <3
"Life is not the way it's supposed to be, it is the way it is. It's the way you cope with it that makes the difference."
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