Abby joins Club-Tubie
January 26th 2021
Sometimes...mama-hood looks like this 😔
Raw and real... Tired and frustrated...scared and defeated.
For the past two years, ever since we learned that Abby shared the same devastating genetic mutation as her big sister, we have been battling. We learned so much in those first couple years from our experience with Emma, and we have used those learnings to proactively fight to stay a step ahead of the disease for Abby. And in so many ways, we have won.
Through all this time, what I have considered our biggest achievement, and my go-to bragging line when I talk about Abby ... “She still eats exclusively by mouth!” This is how I have measured success. This is the “thing” that meant we were still okay. That she was okay.
But I have to be honest...and through this honestly I cry. Abby needs help. She has struggled with eating and weight gain her whole life. The stress on our shoulders as parents fighting to keep her healthy has been immense, breakdowns behind closed doors on bathroom floors included. And now, our girl is telling us that it’s time.
So here we are, back at children’s hospital. I lay cuddled up next to Abby rubbing her
smooth, unadulterated belly where a g-tube will soon be placed and (through tears) try to put aside my own pre-conceived notion that this step means I have failed her.
In the special needs world, gtubes are minor. I mean, Emma has been completely G/J-tube fed for years, this isn’t new territory for us. And after the multiple intubations, the ambulance rides, the seizures, the whole stopping-breathing thing...well I guess I’m just surprised this is what is breaking me.
So tonight I’ll try to give myself grace as I learn to accept a world where both of my children are dependent on medical interventions to survive, a place I never dreamed I would be. I know in my head this is the right decision, and that this is what Abby needs right now. Now to just convince my heart.
Abby heads into surgery tomorrow to have her gtube placed. Send some healing vibes her way and some strong-mama vibes mine. They are oh so appreciated right now 💜💜💜
January 27th 2021
Well today was a good day. My mama heart has agonized over facing it, but now that it’s over, I feel so much peace and relief.
Surgery went great, Abby has been recovering beautifully, and as you can see, she is now resting comfortably for the night and showing off her new super power - eating and sleeping at the same time 😊
This week was definitely not what we expected. We hadn’t planned for this surgery to happen, at least not quite yet. But Abby told us what she needed and thanks to the incredible care team at Children’s hospital Colorado, they got it done in record speed.
And though I may sometimes question why I feel the urge to share our story so publicly, and bring others along through our difficult moments....yesterday washed any doubts away. As I sat alone with my thoughts and fears, “my people” (whether we’ve met in person or not) showed up for me, and the love and support was felt so deeply. I can’t thank you all enough for holding up a broken mama in a moment of need. I felt my heart and strength growing with every message, and was reminded that at our core as humans, we love and care for one another and are all just trying to make it through this life thing together. My deepest gratitude to you all.
Word on the street is that if all goes well tonight. we are heading home tomorrow! Seeing as we have spent a good chunk of January in the hospital, I’m ready to re-celebrate New Years on February 1st...apparently we need a do-over.
Good night, friends. From our new little tubie and her Mom ☺️