I look at my beautiful little girl, with her golden curls, big, brown eyes flecked with gold, and perfectly round face, and I can't help but feel guilty.
My daughter is seven years old; she is unable to walk or talk. She was born with a rare disorder called maple syrup urine disease. She seemed okay at first, but as she got older, she started losing her skills, and now she is a shell of her former self. She needs twenty-four hour skilled nursing care, and I am often the one left to care for her when the nurses aren't around.
What makes this situation even more upsetting is the fact that if I had gotten my daughter into treatment, to where her condition could be monitored by diet or doctors, she would not be in the shape she is in. The thing of it is is this: we couldn't afford to get the care she needed. We are rather poor. My husband works three jobs to try to provide for our family, and I stay home, where I take care of our daughter.
We are also uninsured. Nobody wants to touch us with a ten-foot pole because Chloe has a "preexisting medical condition", not only that, but a condition that hardly anyone has even heard of.
I have a distant cousin, Jerrica Lee-Ann Westerbrook, who has a son, one year younger than Chloe, who has the same thing she does; the comparison between the two couldn't be more different. Even though Gage Heath has MSUD, he is walking, talking, laughing, being a typical little boy. My daughter, on the other hand, will never get to enjoy the simple things in life because for her, her prognosis is poor due to our not being able to afford getting her treated in time.
I blame myself; I see myself as a very bad mother. My daughter doesn't deserve to be trapped in a body that doesn't work! I want a daughter who can laugh, sing, tell jokes, give me hugs, walk, run, not a daughter who has to sit in a wheelchair and be fed by a tube or changed like a baby! Why couldn't I have gotten her diagnosed earlier?? She doesn't deserve this in her life!!
Doctors really don't know how long Chloe will live with this condition. She could live for years, but she could also die by the age of ten or eleven. That's only a few short years. We have seen her health decline, and we really don't know how to handle it. My husband, Randall, and myself, fight all the time about Chloe Grace, whether to have her placed in an institution, or to continue caring for her here at home. It's awful!
My husband is gone all the time working; when he is home, all he wants is a cold beer, something warm to eat, and fighting with me. He doesn't want anything to do with Chloe because in his words, "she is nothing but a disgrace and a burden".
He may say he's working to bring in the money, but I personally say he works just so he doesn't have to deal with Chloe and her needs. She's nothing but a disappointment to him because she can't do anything for herself.
Well, I have made myself cry again, so I am going to go now. I will write more in the near future; in the meantime, please say a prayer for us. We aren't really believers in God, but something has got to give to make Chloe's life (and our lives) a lot easier! Thank you in advance! Take care!
~Sincerely, Melanie Lynn Ferriday, Boston, Massachussetts. :(