08 Jul I Know You’re There

My life is not exactly like yours. But it is a life I love. My name is Joey. My body is 19-years old but sometimes my mind is much younger. I am considered to be medically complex. Maybe I am complex, but who isn’t?

I love to be around people. I am very active; a wheelchair does not slow me down. Spending time outside is one of my favorite places to be. Spending time with my mommy, daddy and older brother, camping, canoeing, hiking, going for walks and 4-wheeling are all happy places for me. My mommy and daddy take me to some very neat places like Florida, Alaska and other places with lots of different names that I can’t remember. It’s super fun! I listen to music with my daddy. From Bocelli to Disturbed, we listen to it all! I may not be able to express in words how happy I am, but I tell everyone that through my gestures, sounds, eyes and laughter.

My family knows me. They say I’m upbeat and I guess I am. When I am happy, I laugh, and I laugh a lot.

For the past two months, I have been in the hospital far from home. It is very scary. I don’t like being here at all. I never get sick, so this is new to me. l want to go outside. I want to go home. I miss my dogs, my friends, my classmates and my church group. I look out the window and I cry. I have been here forever (about 2 months). I don’t belong here.

My mommy stays by my side. We hold hands. Her touch and kisses make it better. I can’t communicate with the nurses. My mommy is my voice. She makes sure my food is pureed perfectly. She tells them the foods I like (cream of mushroom soup, strawberry ice cream and spaghetti my daddy makes) and the foods I hate (spaghetti my daddy doesn’t make). My mommy makes sure my special light with the colors that spin around my room is turned on every night so I can sleep through the night.

We live far away (Falconer, NY). Daddy stays home to take care of my dogs (they’re really old) but comes to see me every other day. I want to go for rides with him in his racecar (Dodge Challenger SRT Hellcat), but I can’t because I have to stay in bed. This makes me sad.

Having my mommy and daddy with me makes everything better. My mommy says not to worry because she will be here to take care of me; the nice people at Ronald McDonald House Charities (RMHC) are taking care of her. During the day when I am having procedures or tests, mommy and daddy go to the comfy room (Ronald McDonald Family Room) here at the hospital for coffee, a snack, and a visit with the volunteers. She says they are really nice. At night, my daddy goes home and mommy goes to the pretty House (Ronald McDonald House) for dinner and a good night’s sleep. She is sleepy by the end of the day so the staff from the House even come here to pick her up. She says she is very grateful for all the support from RMHC. I feel better knowing she is ok.

I am loved and I love. I am working on being able to say mom and dad. My body may be impaired, but my heart is full.