In April Faith had an NG tube placed in her nose for tube feeds. Because her digestive system doesn’t work, and hasn’t worked ever in her five years she doesn’t eat nearly what a child her age should be eating. The solution to this tube feeds. She has an IV pole at home and she wears a backpack when she goes out of the house. The issue of course was the tube that was always taped to her face. When ever anyone would try to take her picture she would cover her tube up with her hand. The tube really bothered her.
The surgeons soon decided it was a long-term problem and admitted Faith for an insertion of an G-tube, a more permanent tube that goes directly into her belly. She was ecstatic! She said, “now I will look like a normal kid.” She told everyone, “I’m getting my tube out of my nose, everyone with think I am a normal kid now.” The response of just about everyone…”Faith you are a normal kid already.” I am sure it seems wise to respond in this fashion as an adult. I am sure it seems that’s what she would want to hear. I am also very sure as adults we see things very differently.
At five, she is the wise one. She is not normal. This is not normal, it is our normal, but it is by no means what a healthy five-year old kid is doing. She gets her nutrition thru a tube that is inserted into her belly. That nutrition is a formula that comes in a can and is carried around with her all the time. Part of her colon is in a bag on the outside of her body. She takes medicines around the clock, we do colon washes twice a day, her ostomy bag has to be changed, her stoma has to be cleaned, her g-tube has to be flushed, her incisions have to be cleaned.
We’ve converted part of my bedroom into a treatment room. I have to time her colon washes around when I have another adult, who is on Faith’s pre-approved allowed to see my colon list, available to hold her hand. She needs that person, because even though we do that procedure 2x everyday, sticking a rubber tube into your colon and washing it out is a very scary thing. She has to pee on a schedule, because her bladder is so enlarged from this disease she can carry around massive amounts of waste in her bladder with no clue at all its there. We have to keep track of everything she eats, every calorie, so we know how fast we need to run her feeds so she gets the amount of calories she needs.
The worst part is the pain, and the pain control. She wakes up every night crying that her tummy hurts and I have to turn off her feeds. I give her pain medicine and I hold her up in bed until she falls back to sleep, sometimes it takes a couple of hours. She often wakes up an hour later crying in pain again. On a rare occasion she sleeps thru the night. Those nights are the scariest for me, I wake-up in an absolute panic thinking something horrible must have happened while I was asleep. I run to her room to feel her stomach and make sure she is still breathing.
None of this is normal. This isn’t what normal five-year olds are dealing with. Recently, we went out on my friends boat. He drives really fast, and the wind blows, and the water splashes up on to the boat it’s too loud to talk, or to even think. When we got back into the car Faith said to me, “Mom, I loved when we were going really fast on Gary’s boat. I felt totally normal kid and forgot I was sick.” Funny thing about that was, I had too.
So in the midst of all this chaos I have to look for things that help us to forget what our reality is right now. Because sometimes its nice just to feel like a normal kid.