Jayne Earhardt here. I'm the mother to three beautiful children (ten year old Hugh Bonham, four year old Flower Grace, and six year old Micheal Partick), one of which is severely handicapped (Micheal). I'm a housewife; meanwhile, Robert (he's my husband) works as a janitor. We live in Coral Gables, Florida, where it's warm, even in the middle of winter.
My son Micheal was seemingly normal at birth; however, it soon became apparent that something was wrong, something terrible. He wasn't reaching his developmental milestones, and he seemed limp, "floppy", and he didn't appear to be tracking us with his eyes. Whereupon, he underwent a whole battery of tests, to see if doctors could pinpoint the problem.
It was a terrible time for all of us, but nothing prepared us for what the doctors would tell us.
It turned out that our son had a little-known brain disorder known as lissencephaly. His brain hasn't developed past the three-to-six-month mark; even at the age of six, he is more like a three-to-six-month-old baby. He cannot do anything for himself except blink his eyes, move his limbs with herky-jerky movements, make noises (his noises are clear indicators to his moods; they are happy or sad; we can tell which is which), and smile/laugh. He is totally dependant on others caring for his needs; he will never get any better.
Doctors aren't sure as to how long he will live, but for now, we plan on enjoying our son as long as we possibly can. Every day with him is a gift, and we treasure each moment we spend with him.
Obviously, our son can't walk or talk. When up he's in his wheelchair or special chair that allows him to sit up with support, and he enjoys being around people. Somehow the sight of his happy smile or hearing his cheerful squeaks, sounds bring out the best in people. They simply love him!
In addition, he has seizures, which are controlled by medications that we squirt through his belly tube. That's another thing. He can't eat like you or I can. We pour his liquid nutritional meals through the tube or put it in an IV bag, and let gravity pull the meal directly to where it needs to go: to his stomach. We do this five times a day, and in addition, he gets his meds every four hours, just about the time it is time for him to "eat".
Because Micheal can't chew or swallow, he is prone to getting sick when one least expects it. One minute he can be fine, laughing, cutting up with us, as only he can, and the next, he may be turning blue, gasping for air. He has been in and out of the hospital; he's what hospital personnel refer to as a "frequent flyer".
Whenever Micheal is in the hospital, one of us stays with him, while the other manages things at home. Too often, that certain someone is me, as Robert works for a living, and he can't always be at the hospital when he wants to.
To further help out, my mom who lives in Orlando comes to stay with us at least one or two weekends a month. She's retired, and in excellent health, and nothing delights her more than speending time with her grandchildren, so she's more than happy to help out whenever we need it the most.
Well, I have to go. Flower, my four-year-old, is crying; have to see what happened. I will write in here again soon; until later, this is Jayne Earhardt signing off! God bless and talk to you again!
~Jayne Earhardt. :)
~To be continued.~
