In July the team and I reviewed his health since January. We had a lengthy discussion around his six illnesses in six months, each lasting two weeks or longer. Jude had worked hard for years to gain weight, but the doctor saw the up and down of weight gain and loss on the growth chart. I explained that during illnesses when we tried to feed him or get him to drink, he would shove, push and yell. He simply did not feel well and couldn’t understand why we were forcing him. Knowing that Jude will never be able to understand that he needs to eat and drink, the doctor suggested getting a g-tube placed...again. Those words were deafening. I couldn’t quite process it. Jude and I worked so hard to get him to eat. He went through so much-surgeries, therapies, pain. How can we be here again? My mind starting racing, I started thinking thoughts I am not proud to admit... “Did I fail him?” “Did I not fight or try hard enough?” “People will judge my decision as a mother.” I cried. I was really upset with myself. I consulted with 15q24 mamas and Jude’s doctors. Everyone agreed he needed it. Even though I knew he needed it their reassurance did not make me feel any better.
With a lot of thought, reflection and guidance from my therapist and husband I realized I was defining success as not having a g-tube. When in fact his g-tube journey was and is a success. It has created a lot of growth in so many ways. He learned how to eat on his own when he was not expected to. Then he went four entire years without a tube. Now he will have a tube that will save him from the stress while sick, the hospital visits and will let him show us how he can really eat and gain!
Though it hurts to think about him going through this surgery on Tuesday and permanently having a g-tube; I am so incredibly blessed to have a son that has taught me to push out the noise and focus on what matters. Jude, you are such a bright light in this crazy world. I am SO proud of how far you have come and I can’t wait to see what you will conquer next!
