Judy Reichart here. Sorry for not writing; things have been crazy at best. If it's not my son's health issues, it's taking care of my husband and other children, and trying to keep our heads afloat in today's shaky economy.
Ethan, amazingly enough, has been doing better since my last entry. He hasn't had to go to the hospital since fall of last year; he's been enjoying a long stretch of good health, which has been nothing short of a miracle for us.
As you know, Ethan has Pelzaeous-Merzbacher syndrome, which is in the leukodystrophy family. It's left him unable to walk, talk, or do much of anything for himself; caring for him is a never-ending, twenty-four hour job. It's been hard, but it's also taught us about courage, stamina, and above all, patience, especially when he falls ill unexpectedly.
Thank God our other children (Missi Nichole and Erick) have remained healthy; they've been able to help me out with caring for their brother, and enjoy being children. I worry about them sometimes because their little brother requires much attention; sometimes they get angry, jealous, envious of other children who don't have brothers or sisters who can't walk or talk.
It's only natural. Sometimes, my heart breaks for them because they know that their little brother won't live as long as they will, that he will never get any better.
If there's anything I wish, want out of life, it's for Ethan to get up from his wheelchair, put his arms around my neck, and say, "I love you, Mommie". Of course, I know that's being unrealistic, but I am his mother; and I can dream, can't I?? :)
Next month, we are going to enroll our son in a program for severely disabled kids, as part of a study, to see if there is anything that can be done to help him, to keep him from getting worse. I know it's a long shot in the dark, but if his life can be made better in any way, it will be worth it!
I'll let you know how it goes.
Well, I am doing laundry, so I will go; the dryer just buzzed. Time to take this load out, fold it, then put the load that's in the washer in its place! *Sighhh* I hate laundry day; it's a pain!! Take care, and I will write in here again soon! Just pray that Ethan remains strong and healthy; I can get used to this!! :)
~Hugs, your friend, Judy Reichart. :)
