Judy Reichart here. Thought I'd let y'all know how things are going with our little family, in particular, our medically fragile son, Ethan, who has Pelzaeus-Merzbacher Syndrome.
As I wrote in my last entry, Ethan got out of the hospital a little while ago after a month-long hospital stay. Another round of pneumonia; we thought for a while we were going to lose him. It was a very scary time for us. I don't know when I'd cried so much as I did back then, when our son was so sick!
Doctors are pleased at how well Ethan's been doing since his hospitalization; however, they warn us that if he has another round of pneumonia, it could very well kill him or leave him with damaged lungs. They want to do a tracheotomy on him, as his lungs are getting weaker. It's a very scary prospect for our son, not to mention, us.
Ethan continues to battle the odds. Every day is a nonending war, as far as his body is concerned. So many variables, so much can go wrong with him when you least expect it. One minute he's lying in his bed, cooing or laughing, smiling to beat the band; the next, he's gasping for air or having another grand mal seizure. It's scary to see whenever he gets like this; I don't think I will ever get used to it!
The other day, I cried my eyes out. I was at the store with Erich, our older son, and my husband (Missi was at a friend's house for a swimming party), and this lady made a rude comment about our son, about how he shouldn't be allowed in public. I don't know why some people have to be so darned insensitive; they don't know what I face as a mother with a desperately sick child, and she had no business to say that to me, none whatsoever!
It seems that whenever we take our son out, so he can be a part of society, people shy away, don't want to have anything to do with him. The things they can say can be downright cruel, heartless! It makes me ashamed to be a mother whenever people act so stupid!
Ethan is not his disability; he's a child with a disability, and unless people see him, they won't know about disability awareness or how to act around people who are disabled. What would they say if their child had been born handicapped or developed a problem like our son's?? What would they say or do then?? I bet they'd change their tune in a heartbeat!
Well, I have to go. Ethan needs my assistance all of a sudden. Pew! I will write in here again soon; take care and God bless!
~Love, Judy, Ethan Raymond's mom. :)
