My son, Ethan Raymond, is still alive. Incredibly, he beat his last round of illness; he was in the hospital a month, fighting for his life. Doctors didn't think he'd make it. It was that serious.
He just got out of the hospital last week. Nurses come over every day to help him: right now he is too weak to do anything for himself (not that he could, mind you). It's been a long, hard fight; we are both thankful that it's behind us.
Until the next time it happens.
This is Judy Reichart. My son has Pelzaeus Merzbacher Syndrome, which is a rare disease similar to Canavan's or Tay Sachs. The baby is seemingly healthy at birth; however, by the age of six months (or so), there are changes, and as time goes by, the infant becomes more and more helpless. They lose important developmental and physical milestones; by the age of four they are unable to do much for themselves. It is a terrible way to go through life.
I don't know how many tears I've cried. I've lost more sleep since Ethan was diagnosed with this monster disease. I still blame myself for this because it was I who carried the defective gene, passed it on to my son.
I try to do my best to provide for Ethan, try to help him through his many medical crises as best as I can, but I can only do so much. Thank God I have my husband Rich and our two older kids (Erich and Missi, who are eleven and nine) to help me when it becomes too overwhelming for me. I also have an army of home health nurses and church friends to help; this is such a huge blessing. That way, once in a while, I can get a needed break, be by myself to think, reflect, meditate.
I've learned to be strong, thanks in kind to Ethan. He's made me a much better person all around. I find myself able to function better than I'd even thought was possible because I've learned that I can get through the worst times in life. Like with his last hospital stay. During his stay, he coded (stopped breathing) three times; thank God doctors brought him back to life, but I think I lost twenty years off mine. It was beyond scary; I am so glad this is over!
Now Ethan is lying in his specially made chair, looking at me with those big, dark brown eyes I find so irresistable, grinning like a cheetah. He looks adorable; I can't help but smile back whenever I look at him. I am so blessed to have him in my life, even with all of his medical problems.
Ethan is a joy, a pleasure to be around. He's the kind of kid who doesn't cause any heartache, not like my other two. Missi can get mouthy, and she springs an attitude while Erich constantly picks fights with us. Ethan never does any of that. He is a very good little boy, and I love him unconditionally. I would do anything for him; no I would do anything for all of my kids!
Well, Ethan's nutrition pump is sounding off again; I swear that thing is possessed or on the fritz! (Probably both!) I will go now; I will write in here again another day. Until then, this is Judy Reichart signing off. Take care and may God bless you!
~Love, Judy, Ethan Raymond's mom (also mom to Missi and Erich). :)