Many of you are like me: you have a menial job, you get paid twice a month, you struggle with some bills, and Ramen noodles are your least favorite standby. And so it is, this life style, for millions of Americans. But how many of you have kids? That number probably doesn’t budge downward much either, but as I’m no statistician, I can’t tell you the answer (and I don’t feel like being a Google ninja right now). I could safely say that a majority of workers over the age of 20 have one child in their household.
And it’s a mess, isn’t it? I just cleaned the apartment today, and now look at the mess that has happened! How many toys did I pick up, and they’re spread around the floor five minutes after you get home? Sucks, huh? But I’ll tell you something else that I may not share with the population of minimum wage restaurant workers.
My step-daughter has cerebral palsy. Ah, yes, the beans are hereby spilled. Daily life here isn’t quite glorious– it’s quite taxing. You see, cerebral palsy is an umbrella term used to describe a neurological condition which affects muscular development (over-firing synapses and motor coordination hiccups included). And there are varying degrees from the mild end of the spectrum to severe, where mild is easily treatable (not curable, mind you) with Botox. Severe cases are more apt to require some surgical treatment to allow limbs to move as freely as they were intended. The good thing about cerebral palsy is, unlike disease, it is not progressive; that is to say, it won’t get any worse over time, it can only get better with practice and dedication.
Back to my step-daughter. At the beginning of this year (January 2015) she received Botox injections in her calves and hamstring areas to treat muscular flexibility limitations. Essentially, with Botox, she now can stretch her legs and not walk constantly on her tiptoes, but there are times when she will overcompensate and correct her balance too much and fall. And fall she does– probably 20 times a day. That’s less than the 50 or so from trying to be mobile before her shots. Now, if she thinks about it, she’ll crawl up a couch or other lower surface such as a table, stand, and then practice balancing on her own and will actually free-stand for about half a minute. This was not possible before her Botox injections, and in tandem with specially-fitted braces which she wears every day to accommodate her stretches..
Now on to her outside of spastic diplegia. She is just like any other kid– she likes macaroni and cheese, hotdogs, bread with mayonnaise (ummm…), constantly asks for soda (which I never give her), watches Teen Titans and Spongebob… And her favorite food is pizza. And I am not kidding that she would much rather have a pizza from Little Caesar’s than from Pizza Hut or Me & Ed’s. She’s a huge fan of Disney, and has been enjoying Anna and Elsa character toys from the movie Frozen on a daily basis for more than a year. And her mom lets her watch Disney Car Toys or something on YouTube. She hates going to bed on time, loves sleeping in when we need her ready for the bus, demands her chocolate cereal and tea in the morning– just like every other kid in the world, she has her morning routine and cartoon routine straight off the school bus. And so you can imagine that we’re a little more than fulfilled for our daily tasks when it comes to caring for her.
My fiance is developing back problems from having to carry her everywhere because she (my step-daughter) still can’t walk on her own, and we can’t have her crawling everywhere on pavement and asphalt. Her wheelchair is really heavy, and that takes some effort to load into the car’s trunk (which already has limited space by virtue of the make and model). But when faced with particularly bumpy terrain, it performs like a champ, so that works out for us in the end. And I have baseline back problems from the Navy, so exacerbating that with heavy lifting as she gets older, heavier, and her chairs have to eventually grow with her, is inevitable.
Is it worth it? Probably hard to say no. Aside from being spoiled rotten before I arrived in her life, she can be sweet. And she has plenty of opportunity to develop her skills as a future artist, writer, movie director, motivational public speaker– the possibilities are endless. And being part of the influence to trying as hard as she has with her already difficult life and utilizing that determination in more aspects will define our parenting quality in the end.
By the way, does anyone have any dish soap or maids to spare for a bit?