An update about a very special young boy and his family, as told by his mother.
This is Merthalene Quebedeaux. I hope this finds y'all in good health. As for me, I have my good days and bad days, especially when it comes to caring for my youngest child, D'aigrepont Paul, who is now ten.
D'aigrepont has Tay-Sach's, a neurodegenerative disorder that was supposed to have killed him before the age of four. The fact that he is still here is nothing short of a miracle. At ten, he can no longer walk, talk, feed or dress himself, or see; and he is losing his hearing. Eventually the disease will kill him. It is a very hard situation to be in because your child is dying, and there is nothing, absolutely nothing, that can be done to prevent it from happening.
Adding to the fun is that I am now a single parent raising three kids, including one who is eeverely handicapped. Paul, Sr. (my ex husband) left because he could no longer deal with D'aigrepont's needs. He says he did it to save himself; I call him nothing but a big, fat coward who was afraid to face up to responsibility.
Angry? Damn right I'm angry!! I have not forgiven Paul, Sr., for wimping out on his very own child like this, let alone, the rest of us! We have been struggling to try to make ends meet ever since Paul, Sr. vacated the premesis.
I am, however, very thankful for Kyle and Meghan, who have been a big help to their tired, overworked, overstressed Mama. I don't know what I would do without them, but damnit, they're just kids: they deserve to have a normal childhood instead of being saddled with a younger brother who can't do anything for himself!!
I don't know how much longer D'aigrepont has on this earth, but one thing IS certain: I'm going to do my damndest to make sure he has a "enjoyable" childhood (or whatever is left of it); goodness knows, he certainly deserves that!
Well, I'm going to prepare supper; I will write another day when things aren't as hectic (that's becoming increasingly rarer these days). Until then, this is Merthalene Quebedeaux saying so long!
