As we approach another round of holidays, I look at my feeding tube dependent daughter and steel myself to deal with what is coming. Madison is not even two years old yet, and we already dread certain aspects of exposing her to large group settings, especially when food is the center of the gathering. Madison carries many labels and diagnoses, from a simple Congenital Heart Defect to a Seizure Disorder, we deal with Hypotonia and SPD and many other things. We don’t have a genetic diagnosis yet, we are still classified as a SWAN (Syndrome Without A Name) but everyone agrees that something genetically is driving her “issues”. Trying to help friends and family understand why Madison can’t safely eat certain foods is always difficult, explaining why she won’t eat most foods is almost impossible. How do I explain to Grandma that mashed potatoes are offensive because they are smooth and creamy, but have a sandy feel to them? How do I explain that my kid will suck down twizzlers like they are manna from heaven, but a spaghetti noodle will cause a meal ending meltdown? How do I explain to Grandpa that grabbing her cheeks and forcing the bite in her mouth is torturing her? How do I not feel crazy when I spend 45 minutes preparing folks for the meal time antics of my orally averted toddler, and then at the meal she tries a bite of everything, and by the time her plate is cleaned off, everyone is giving me “the look” that says that I must be the problem?
Having a child of any age that is feeding tube dependent carries added stress. Dumb sentence, huh? Not really, I have had mothers joke around about how easy medicine must be to give and how the hands off approach of feeding must be so much less messy. Not to many people understand why I tear up watching kids younger than Madison scarf down baby food while they enjoy the experience. It is very stressful to sit at the table trying to have a normal meal for our other 4 kids, while chasing a little mouth that is clamped shut and she is overwhelmed and melting down, but the doctors want me to offer and try 2 full jars of baby food, so I keep at it. I think that the hardest part of dealing with oral issues is when Madison wants so badly to try something and yet she can’t bring herself to do it. Ice Cream is so yummy! When I am offering it to Madison she smacks her lips and opens wide, but as the spoon draws closer and she can feel the cold rolling off the spoon, she clamps her mouth shut and turns her head to stop the bite of cold yumminess from getting in. As I withdraw the spoon to take the cold from her, she will cry and grunt to say she wants the bite, as I bring the spoon back, she turns her head again. We can go on and on like this as she gets more and more upset. It has become easier for the other 6 members of the family to sneak ice cream, while hunched over the sink in the kitchen, so she doesn’t know it was eaten.
I still find myself daydreaming of Holidays in the future, with all 5 of my precious children sitting around my table, elbowing and jockeying for mashed potatoes and turkey, ham and homemade noodles covered in gravy. I don’t know if these daydreams will ever be fulfilled. Not knowing what drives Madison to not eat, we don’t know if we will ever find the magic key that helps her overcome and eat all her calories with her mouth. Until that day arrives we will continue to decorate her IV pole and host holiday dinners, because she eats better in her highchair, at her place at our table, in our home, off of her special spoons. We will continue to avoid large eating centered celebrations where the thought of carrying in her highchair, spoon, plate, blender, IV pole and all the other “things” we need to try and eat are to much for this battle weary momma to carry. I will continue to blend foods to a nice smooth consistency so no surprise lumps or clumps take a little mouth by surprise. I will continue to encourage every bite that is willingly accepted, even if it is a sweet tart off the kitchen floor. I will continue to try and educate Grandmas and Grandpas that babies can starve themselves and that feeding tubes are something to be thankful for.
I will continue to do whatever it takes to help a precious brown haired blue eyed little girl like to eat.