Two years ago today, Ali had her feeding tube removed and while we hadn’t used it for about 6 months, it was still a huge day! I always had a love-hate relationship with her G-tube.
For me, her feeding tube started out as a symbol of failure, not hers but mine. What kind of mom can’t feed their baby? What kind of mom can’t keep their child from throwing up 7 or 8 times a day? In the early part of Ali’s life, I felt like I admitted defeat over and over again. When we put her “permanent” feeding tube in, it felt like we had truly lost the war. I was tired, I couldn’t do it anymore. I needed that fight to avoid a permanent tube to end. What followed was years of a new battle that I fought with myself. How hard to push, where to get advice from and who to listen to when there were experts telling me that my child may never eat. Did we need to take things slow or push her to eat? What kind of diet would stop the constant vomiting? How could we get her to the point that we didn’t need to feed her 24 hours a day? It was really, really hard. Deep down inside, I knew that she’d never, ever eat uand it hurt. But I was wrong in so many ways.
She did eat eventually and suddenly I had a whole new perspective on her feeding tube. In reality, by making that decision for Ali, Jason and I had made the only choice we could. We didn’t give up, we took a really brave step forward and accepted that Ali needed time. We accepted that she needed nutrition and that we had bigger things to worry about then how we were going to feed her. We gave her the opportunity to grow and thrive. Ali’s feeding tube saved her life many, many times and it allowed us to concentrate on other aspects of her development rather than spending 24 hours a day trying to feed her. It was a gift and I say that because there are countries in the world where children like Ali do not get feeding tubes. Ali would have died without her tube, if not from starvation then from one of the many viruses that she got because she wouldn’t have had the nutrition to struggle through or a way to take the many medications that used to get her through the day.
I’m so thankful for that journey. I will always remember the first time Ali swallowed and the way it felt and I carry that with me because when it seems like the odds are stacked against us and I wonder how we will get through, it’s a reminder that sometimes, even when it seems like there’s no hope, there is.
Now, two years after having her feeding tube removed, Ali is still in feeding therapy. She has jaw issues and we are continuing our feeding journey as we try to teach her to chew. It can be frustrating and we are aware that the odds are stacked against her. I look back at that baby who couldn’t suck on her bottle and who threw up every ounce of food that she got through a tube running up her nose and into her stomach and I know how far we’ve come. Just a little bit further to go. I look forward to the day when I can stop buying a new slap chop every month but in the meantime I’m thankful for a journey that showed me that there are more victories in this life than defeats.