Jayne Earhardt here.  I thought I would write to update you on the goings-on in our lives.  Here goes nothing:

Robert and I continue to try to find ways to make life a bit more bearable for our second-youngest child (and youngest boy), Micheal Patrick, who was born with a brain malfomation known as lissencephaly, that left him severely handicapped, and to let our other two children, Flower and Hughie, know that they matter as well. 

It isn't easy, but I pray we are doing a good enough job.

I know Flower and Hughie get frustrated with their brother because he can't play with them or get them into trouble like other little boys.  He has to be dressed, fed, medicated, diapered, and stimulated, as a baby would, even though he is six-going-on-seven.  He either spends his days lying in his (hospital) bed or, when up, sitting in his wheelchair.  He doesn't have what you would call a very exciting life.

Flower and Hughie, meanwhile, can run around, laugh, play, visit friends, play on the computer (with parental supervision, of course), and go out for pizza once a month if they've been really good.  Poor Micheal can't.  Oh, he goes with us, but he doesn't eat pizza.  He has a liquid suppliment poured into his G-tube, and that takes about an hour, tops.  Or, if we don't do it ourselves, we hook the bag of "food" to an IV pole anchored on his wheelchair, and let the stuff go into his stomach by way of gravitational force.  That takes about an hour as well.

People always manage to stare at Micheal.  It comes with the territory; however, it makes us very uncomfortable.  I know it must make Micheal uncomfortable, too.  Or they say hurtful things, and this is when parenting such a child is hardest of all.

This is when I wish we could get a break:  have someone come over to watch over (or care  for) Micheal while the rest of us go out and do "normal family" things.

We could call my mom, Clara, but she lives in Arizona, and she isn't in the best of health either, so we're, more or less, stuck (me more so than Robert because Robert works; he has to, so we can pay the bills, particularly the mountain medical bills).

I look at my second child, and I cry because I wish he could tell me how much he loves me or tell me about school or the birds singing outside.  I wish he could run around, hit a baseball, or roll around in the grass with reckless abandon.  He has been robbed of all of this because his brain was born malformed, and I somehow feel that it is my fault, that I am responsible for him ending up like he did.

So far, Micheal has managed to stay (relatively) well and out of the hospital, which has been nothing short of a miracle; on the othe hand, however, things can change just like that, in which they often do.  One minute he can be fine, laughing up a storm; the next, he might be gasping for breath and fighting for his very life.

Well, I have to run.  Flower is calling me, and Micheal is cooing again.  Guess they need something.  I don't know where Hughie is; he must still be in bed.  He loves to sleep in on weekends; at times he doesn't rise until well past noontime.  LOL  I will write in here again with another family update; until then, this is Jayne Earhardt saying so long and God bless!  Pray Micheal continues to stay well!   I would greatly appreciate it, and so would he!  Thanks in advance!

~As always, your friend in Florida, Jayne Earhardt.  :)

*To be continued.*