My son, Micheal Patrick, is a miracle in all sense of the word. Doctors didn't think he'd survive as long as he has. Any day he wakes up breathing (or not sick) is just another blessing from God above, and we are grateful for each day we have.
Micheal Patrick seemed to be okay at birth; however, it was soon appararent that something was inheriantly wrong with our son. He wasn't crying normally (his cry sounded weak, more like a newborn kitten than a human baby's), and it appeared that his eyes weren't moving normally. He seemed floppy, weak in nature, and it had them very concerned.
They started their tests on him, to see if they could pinpoint the problem. Meanwhile, Rob and I were left behind, scared, wondering what on earth what we could have done to cause our son's condition, whether we could have done something different, to prevent this from happening. It was a horrible, awful, uncertain time, full of fear and heartbreak.
It was after an MRI scan that the problem was pinned down. Our son had been born with a little-known brain disorder known as lissencephaly. I had never heard of it, and had no clue how it would manifest itself in our child. In this condition, the child's brain ceases to develop any further, and the brains' surface is smooth, markedly abnormal in appearance.
All children with lissencephaly have significant problems with their nervous system, but the extent of these "differences" vary from child to child. All have profound mental retaradtion, many have problems with feeding or seizures, and a lot of them (not all, but a good majority) die within the first few years of life.
The news was, as you can imagine, devastating. Here we went from a happy birth to one of heartbreak. Our once-perfect child had been given a death sentence; we were at a loss for words, or what to do for our son.
There is, unfortunately, no treatment for this disorder. All we can do is provide 24-hour care for Micheal, make sure that he's comfortable, clean, and pray that a cure is found while our son is still alive.
Now at the age of six, Micheal is virtually a prisoner of his own body. He cannot sit up without help, and walking, talking, even going to the potty or eating is out of reach for him. He will never progress beyond the level of a two-to-three month-old infant, even when he gets to be an adult (that is, if he lives that long, which, at this time, is highly unlikely). He has been in and out of the hospital for one thing or another, and he is tube fed every five hours (his meds are given through his stomach tube as well).
He can make sounds or smile, cry, or laugh, but that's about all.
I worry about our other children, four-year-old Flower Grace and ten-year-old Hughie Bonham. I know they must be disappointed in having a brother that really can't go anywhere or do anything for himself but lie there as we tend to his needs. I am sure they resent having to help out if needed (the older one more than the youngest), and I am sure that they are embarrassed whenever he has one of his seizures or makes his noises when everyone else is quiet.
I know they wish that Micheal could laugh, run around, play ball with them, just like any other little six-year-old boy; I often hear them talking, crying at night, and it rips my heart out, each and every time.
I feel like it is my fault that Micheal was born with lissencephaly. I wish I could do something different, take his suffering, pain away. No child deserves to live like this; our son deserves far better in life!!
Well, his oxygen pump is sounding off again, so I must go. Hopefully it is nothing more than a loose connection or a kink in the oxygen tubing; that sometimes happens. I will write in here again another time; just keep us in your prayers! Living with a child with such significant special needs is something that's not for the weak-of-heart!
Take care and God bless!
~Sincerely, Jayne Earhardt, Micheal's mom. :(
