Yesterday, for the last time, I deflated the balloon of Everett’s g-tube and gently pulled it from his stoma. Instead of placing a new g-tube button I simply taped gauze over the little hole in his tummy that has been there for 16 months of his life. With a few movements, and in less than a minute, he graduated from tubie life.
Sometimes living the life of a mother to children who are different can feel lonely. We hold other babies who’s stomachs are smooth and do not have a little plastic tube button creating a little bump under their clothes, and we feel separated. We hear other little children talking so much more than our own child, and we ache just a little bit. The differences often make us feel separate from those families that don’t have differences. Yet, every mother, every parent, celebrates the milestones of their children. The first smile, the first attempt at walking, the first time they ride a bike without training wheels; when our children gain these skills we all celebrate. Sometimes, those skills are different. The first time they drink a whole bottle without choking, the first time they try a new food, the first time they return your hug. I can tell you, though, that the burst of delight that runs through me when my children reach a new milestone is the same whether it’s a different kind of milestone, or a typical one.
I squeal.
I clap.
My heart jumps inside my chest.
And I also feel that little twinge of sadness that this means my little one is even more grown up than yesterday.
I don’t need to add more differences to what we already have. I am a mom, just like you, who feels the same things you do about all the little milestones, some the same and some different, that you are also celebrating with that little tear rolling down your cheek.
A close friend recently celebrated independently initiated dressing with her son my Oliver’s age. What a huge milestone for them! My sister in law’s baby is standing with assistance, and sheer joy spreads across her chubby little face when she can convince some steady hands to let her wrap her little fingers around them and help her balance. All around us mothers are celebrating these milestones, whether typical or atypical, all the time.
I placed my son’s last g-tube button on the counter. I couldn’t bring myself to throw it away. I’ll probably place it inside a little plastic baggy and save it. It felt a little bit like removing a part of him, but also like moving forward to a time of less worrying. No more being careful as we pull down his shirt that it doesn’t catch on the little tube. No more worrying it will get yanked out if he slides off the couch a certain way. No more being mindful of where to blow on his tummy because getting a mouthful of g-tube is hilariously awkward.
I wonder, now, how long it will take me before I forget what it’s like, seeing that tube in his tummy? How long before it feels normal to me to hold a baby with no mind to exactly how my hand is placed? How long before what was normal to me before is forgotten, and muscle memory changes?
I’m so overwhelmingly happy that we’ve met this milestone! So ecstatic for all the things it means. So thankful to know that the very thing he so desperately needed at 2 months old and failure to thrive, is now going to be just a memory and a scar on his tummy. But I am also shedding a few small tears as I watch my baby grow up before my eyes and become this sturdy little toddler who is climbing onto tables, throwing food, and choosing not to eat the food on his plate just because he can.
And I know that so much of what I’m feeling, as I write this, is what so many other mothers are feeling as they watch their own children meet milestones and gain new skills. Some of it might be different, but much of it is also the same.
Thicket and Thorn 