Here I am, watching my little girl in her special tub seat. She's anxiously awaiting the water to get high enough for the jets to be turned on. My husband would kill me if he saw I was using the laptop around splashy feet. But it's been so busy around here lately. More than usual.
I've been doing paperwork (too much paperwork) to keep this house going. I've been dealing with funding for respite work because, as of Feb 29, we don't have a contract yet to allow me sleep. I've been dealing with paperwork for a wheelchair van & home renos so we can take better care of Scarlett. So far, I've spent about 40 hours of work in the last 2 weeks on this stuff. All the while the kids have all been puking sick, I've been battling migraine after migraine, 2 hours of sleep at night when my workers aren't here, a touch of the sickness myself, my husband's back is killing him from all the snow, and all the pointless phone calls. Plus life things like getting food, making tube food, laundry and the rest of the normal stuff we all deal with.
There are times that I wonder aloud if my husband and I will ever get alone time. Not THAT kind of alone time, just time without a child in our laps, on our backs, screaming down the hall......But then the answer almost scares me because, even when the boys are no longer "dependent" upon us, Scarlett will forever be. If I have this "imaginary" time where Jason and I can spend doing nothing then, most certainly, it will be because my sweet girl is no longer with us. So I feel selfish at the thought, as if I were wishing her away even though I know that's not my intent but understanding that's the reality of my wish.
The road to surviving a severely disabled child is hard. I've only done it just shy of 2 years. I can't imagine how people do it for decades. There's so much involved that "normal" people never think of. Things I never would have thought of if it weren't for being in this changed world. Like do you put a bra on a disabled young lady? Certainly my husband won't volunteer for that. I don't blame him! What happens when she gets her period? Will workers clean that up when I'm out? Will I want them to?Will she? Some sweet disabled babies can turn disgustingly violent (without intent), will that be her and will I have to choose the safety of my boys over the love of my daughter? What happens if I die? No matter who steps up, it will not be the same...will it kill her? If Scarlett lives for 40 years or more, where will she go? A home? Will she be ok? Will she be put upon as my boys' responsibility? Will their spouses resent that? So many things...on a constant roll in my head. No wonder I have a constant migraine!
Most people say that they would die for their children. That they would jump in front of a bullet, run into a burning building, shield their child with their body from a car. In an instant they would give up everything to protect and save their child. That's easy. Dying a martyr for your child in one fell swoop. How many parents are out there that give up their lives for their child everyday? Who do not eat or sleep, do not shower or see friends nor family, who give themselves over each and everyday to protect and save their child? If you're a parent of a disabled child, you do.
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