
Jayne Earhardt here. Sorry for not writing; you know how it is when you have kids: no rest for the weary.
In my case, compound that by five times. I have a ten-year-old, a six-year-old, and a four-year-old. The ten-year-old and the four-year-old aren't too bad: it's the six-year-old who keeps me on my toes most of the time.
Hughie (my ten-year-old) is busy with sports and school; Flower, meanwhile (she's the baby, our four-year-old princess), is busy being a typical preschooler. Very delightful in nature; a fun kid to be around.
Our six-year-old (Micheal Patrick), meanwhile, continues to exist, for lack of a better word. You see, he will never get any better; he will never get past the point where he is at now. At the age of six, he cannot walk, is nonverbal, and can't even feed himself, let alone, go to the bathroom on his own.
He needs total care. It was because he was born with a brain malformation called lissencephaly; it's appfected his physical and cognitive development. He will never get past the point of infancy; even when he gets to be a grown man (that is, if he lives that long), he will always be like a baby.
More than once, my husband and I have discussed institutionalizing him, but more often than not, he would probably end up getting ignored, abused, or worse, so we opted to keep him home with us. It isn't easy, but we do manage.
I know Flower and Hughie resent us having to spend so much time with their brother, but we can't help it. We didn't ask to birth a child with such significant special needs; it just...happened, and now we have to make the best out of a terrible situation, particularly whenever Micheal gets sick and/or ends up in the hospital yet again.
He was in the hospital just last week. Another one of his seizures. The poor doctor has been working overtime, trying to find the right combination of meds that might nip this thing in the bud, but for now, nothing much has really helped. It's hard to see him suffering like this; this is when we wish that God could just take him home, so he wouldn't have to suffer yet again.
So far, since his last hospital stay, Micheal hasn't had a seizure (miracle of miracles!); however, he's left lethargic; he spends all of his time sleeping. Even when I change his diapers or hook him up to his feeding equipment, he doesn't even budge: it's as if he's comatose. Very disturbing to see; yet his color and breahing are good, so we don't worry (too much).
We just wonder when the next seizure (or crisis) will strike; it's akin to walking on eggshells.
Such is the life of raising a child with severe special needs. That's our lot in life, and at times, we feel like we are the only ones going through this. I know we're not, but I really don't know of very many people going through what we are at the current time.
Well, I have to run: have to get Flower and Hughie ready for school, and also get Micheal ready, so the bus can pick him up at eight thirty sharp. I want the kids to be out the door before I leave for work at nine. (I work as an insurance adjuster part time; today is one of my working days.) Hubby is already at work: he left at the crack of dawn. I will write in here again soon; sooner if anything major happens (which it's bound to; with Micheal around, you never can tell!).
Until then, this is Jayne Earhardt saying so long! God bless and continue to keep us in your prayers and thoughts; we really could use them, especially when Micheal's health is acting up!
Thanks in advance!
~Sincerely,
Your friend, Jayne Earhardt. :)