It’s been a really long time since I properly updated this little blog. Years. For so long, I had nothing to say. No inspiration. No progress. No updates. Simply… nothing. I couldn’t find my words.
Then something extraordinary happened last spring. It was a Friday afternoon after school. I was in the kitchen making dinner when Brady walked in and said, “Mom, I want to get my feeding tube out.” I remember thinking, YES! Yes, Brady!! That is exactly the perfect next step. My next thought -- how in the world are we going to get there?
It dawned on me that I had gotten so caught up in living in the middle. This mundane, middle part of our story, that I actually forgot that life with a feeding tube could actually come to an end.
Brady’s revelation got me thinking. Over the years, I have read posts and updates of other EoE families with children that were able to get their feeding tubes taken out. And I always wondered, how did they get from point A to point B? How? Point A being a place of living with a feeding tube to sustain nutrition and growth to Point B where you seemingly get to live a life without the constant stress and strain and planning and feeding tube supply packing and worry and fear of something going wrong with the feeding tube. Point B feels like a magical, far off place. And I need directions.
The thing is. There are no directions. Every child with EoE is different. Every story is different. There really is no right or wrong way to get to Point B. But I still can’t help but wonder – how did these families do it? How did they get there? What routes should we avoid? What detours can we take?
The families that reach the summit of Point B oftentimes have a celebration of sorts. Many have what they call a “Tubie Graduation.” They even make t-shirts for it, courtesy of the Feeding Tube Awareness Foundation. I have never wanted to click “Add to Cart” so bad in my life. But I won’t. Not yet. We have a long road ahead of us.
We do have an end point in sight. Brady’s next annual endoscopy with biopsies is in May 2023. We spoke with his GI back in May 2022 about what we needed to do in order to get the feeding tube out the next time we see him. We walked out of the hospital last May with hope again. With inspiration. With goals. And my word, that felt so good.
I have finally found my words again. And because of that, I’m planning to document the next several months on our journey to May 2023. I’ll reveal the good, the bad, and the ugly on our way there. I realized over this past summer that I had so much to say in the beginning of our journey. The road to diagnosis. The painful decisions that led up to Brady having a feeding tube inserted. The frustrating and sometimes isolating moments of our life raising a child with special needs. It didn’t feel right not to document this next phase of our life in Craz-EoE-town.
I won’t lie. I’m scared of what comes next. The unknown. The pressure. The undoubtedly mistakes we’ll make. Yet, I won’t let any of that hold me (us) back from moving forward. To providing that safe space for Brady to take risks. To trying new foods. To cheering him on at times and being hard on him at other times. And in those moments, I know I will have to remember to take deep breaths to keep my patience in check. To just breathe. To remember what all of this is for.
And so it begins… our road to Brady’s Tubie Graduation.
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Brady, summer 2022 |
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The t-shirt I can’t wait to click “Add to Cart”. |
