Madeleine Nelson here. Remember me? If not, let me fill you in.
I last wrote in here back in the springtime. Think it was something like March or April. Sorry 'bout that; it's just that my kids keep me hoppin'. I have twin active seven-year-old boys (Monty and Marquise), as well as a little five-year-old girl, Mikkaylah.
She's just about as active as her brothers, at times, even more so. And all of this despite having a rare, fatal disease that's stunted her growth and left her with many medical problems.
Amazingly enough, other than a few flare ups of arthritis or some chest pains, Mikkaylah hasn't been sick enough to warrent a trip to the hospital (though, I'm sure, those days are coming). She remains as active as ever, not to mention, extremely noisy.
She's one of those types of kids whom you hear long before you see. And with her tiny stature, that isn't very hard to do. LOL
Mikkaylah and her brothers all had a super Christmas. They got toys out the wazoo, not to mention, money from their aunts, uncles, grandparents. In addition, the boys got new bikes and a Wii game system; they were almost ready to go into stroke mode when they opened up the Wii entertainment system.
Mikkaylah, meanwhile, went crazy over her brand new kitten. She got a little Ragdoll kitten for Christmas, which she promptly named "Harry". She adores him; they are always together; they've since become fast friends. It's adorable watching the kitten follow his little owner wherever she goes, and it's so cute to hear the little kitten purring on her lap in the eveningtime.
I think it will take some of the sadness of living with her disease. Goodness knows, she needs some joy in her life, and joy is something that she's never short of.
Mikkaylah, in case you haven't figured out by now, is terminally ill. She was born with a very rare disorder (rapid aging, medically known as progeria); less than 30 people have it, it's not very well known. She may be a five-year-old girl, but she has the body of an eighty-year-old woman. She has any number of problems, including hardening of the arteries, angina, arthritis, osteoperosis, cateracts in both eyes (she is due to have surgery sometime in the next few months to remove them; I'm not looking forward to that!), and memory lapses.
Mikkaylah looks very different than most children her age. She is noticeably shorter, with very little in the way of hair, huge, bug eyes, a thin, sallow-cheeked face, a prominent nose, huge ears, and stick-thin limbs. She walks with a pronounced waddle, and on days where her arthritis is acting up, she's most happiest being carried around or riding in her stroller.
Because of her odd appearance, my daughter is prone to many stares, and people will often say something. Most of the time, the comments aren't too bad; however, some people have been insensitive, rude, and this is when I wish that I didn't have a daughter with progeria. It wasn't anything I could have done or prevented; it just---happened. Nobody can explain why she got progeria; it was just one of those rare things that sometimes occurs.
Sometimes people will cry when I share Mikkaylah's story with them, but then again, I cry too. I have those days where I hate the progeria. I don't hate my daughter; I just hate what's happened to her, and the times where she's in the hospital are the worst for me (although she hasn't had any hospital stays recently, thank goodness). I've spent more times in hospitals than I can remember.
Mikkaylah is calling me, so I will go now. I think she needs help opening up her pill bottle again; it's time for her to take one of her medications, and she can't work the lids with her weak fingers, hands. Hopefully she will continue to do well; I pray nothing but good blessings for not only Mikkaylah, but for us, her family!
Lord knows, we need it!!
~Love, Madeleine Nelson. :)
*To be continued.*
