My little Matthew Craig is my pride and joy. I would do anything for him. I love him so much ...
If I could wish anything for Christmas, it would be for Matthew to be able to walk or stop suffering so much. He is only two years old; he doesn't deserve all of this heartache ...
Matthew was seemingly healthy at birth, but a few months later, there were subtle signs that something was wrong. He wasn't "on target" with some of his developmental signs, was smaller than average, had coarse hair on his head, weak muscle tone, and had seizures. Doctors were concerned, so they sent him to a specialist to see what was gong on. The diagnosis: Menke's disease, meaning that he had problems distributing copper to the boy. Because of this, he would have problems, the most noticable being siezures, mental retardation, and early death.
The news was, as you can imagine, devastating.
Imagine bringing a child into the world, only to be told by doctors that he would not live to become a teenager or even an adult. (Our son had the infantile form, which was the worst kind. If it developed in childhood, it was often less severe and children wouldn't be as severely affected.)
Our son is two, as I said, but the developmental delays are obvious. Mentally, he is at the level of a three-to-six month old baby. He cannot walk or talk and has frequent seizures or spells of pneumonia. His lungs are weak and is often on oxygen. He's been in and out of the hospital for one thing or another and doctors aren't really giving him much hope.
I am his caretaker. I give him his medications (via tube; he has a button in his stomach, where I can hang his meds or liquid food/nutrition suppliments on an IV pole that is attached to his wheelchair) and I do therapy with him, stretching his limbs, exercising with him, and interacting with him, anything to help him developmentally.
Matthew CAN hear and see perfectly, but his obvious physical and mental disabilities seem to overshadow that. He smiles at people and laughs at them whenever they interact with him. He loves his doctors and nurses, but he loves his family best.
Besides Matthew, we have a daughter, Winnie, who is six. She is very good with her little brother. She loves helping us take care of him and has proven to be quite accepting of his condition. Winnie has a tender, nurturing spirit and it warms our heart to see the special relationship she has with Matthew.
Sometimes, though, Winnie gets sad because Matthew can't do what she can, but she still loves him, irregardless. On the days where Winnie is sad, either Joe (my husband) or I spend several days a week doing "Winnie-related" things while friends who are nurses stay home with Matthew, to give us a time of respite that is much needed.
We take Winnie out to eat, to the park, or to the movies with friends. She has the time of her life. It feels good to know that we can spend time with our daughter and hear her laugh or sing with joy!
Unfortunately these moments have been short-lived lately because Matthew is sick again or needs to go to the hospital. His last hospitalization was a month ago; he spent two weeks there, one of those weeks in PICU. He had pneumonia for the umpteenth time. It was very scary because Matthew tried to quit breathing on us, but quick action saved him. He is doing much better, but we are always on alert because you never know what will happen or when.
It's hard living like this. I woldn't wish any of this on any other family! It's the pits and it's a wonder I have any hair (or sanity) left!!
Just keep Matthew in your prayers. Better yet, keep US in your prayers. We could really use them! Thanks in advance!
~Dora Hennissey, Oshkosh, Wisconsin.
