I expend very little energy “woeisme”ing. No, really! Not to toot my own horn or anything, but I think I am solidly in the realm of acceptance. This was the hand I was dealt. I have risen to the occasion. Though I may falter, stumble, curse like a sailor, and have my less-than-perfect days, I will not fail.
Upon reflection, I don’t think I really wish Madeline was born without her difficulties. Meaning, I don’t find myself wishing she were “typical.” That would be too miraculous. I do, however, wish for a lot of smaller things. Any one of these smaller things would lessen my load just a little. I have a thousand and one small wishes I like to make.
To have a child with special needs is difficult. No matter the “severity” of the “specialness,” it is difficult anyway you cut it. To have a child with a physical AND cognitive handicap is doubly so. I sometimes wish Madeline could have one without the other. Our battles with time, insurance, and finances, have forced us to choose focusing on teaching Madeline to walk or teaching her to talk. We chose walking. If she were only delayed physically or cognitively, we wouldn’t have to make this choice for her. Who I am to decide walking is more important than talking?
I wish, on top of everything Madeline has to face in her life, that seizures were not part of the deal. Yet, they are. If there was ONE THING I could change about her condition, it would be to take away the seizures. They are the unknown. They are what can kill her. They are what can delay/stall/regress her development. They are what, in the future, can diminish her quality of life. I will take the physical and cognitive handicap, I just wish I didn’t have to take the intractable epilepsy.
I wish our insurance did not cap therapies at 25 per year. Or, if they do insist on maintaining a cap, that there was some kind of “compassionate allowance” for persons like Madeline. From birth to age 3 is the absolute most formative time in the development of the brain. This time is crucial. I am doing everything imaginable to get Madeline’s little neurons firing and working and building. Capping us at 25 therapies a year (basically two a month) is HORRENDOUS. She needs to be in therapy weekly. Preferably daily. She gets therapies through her school district, but if school is not in session, then she does not have therapy. There is always a lag at the beginning of the year to get things started. Plus, spring break and winter vacation are three-four weeks of no therapy. Then summer. That’s essentially half the year of no therapy. Ugh. Plus, 25 therapies are supposed to cover: physical; occupational; and speech. It is simply not enough. It is nowhere near enough.
I wish I were not so perpetually tired all of the time. I think of naps quite often. True, I sleep. But, it is not a restful sleep, especially with Madeline’s recent night terrors. I am so tired. I also wish coffee were stronger.
I wish I had more time to spend with Madeline. I work an average of 55 hours per week. I get home around 6:00 p.m. each night. I work most weekends. Madeline has 2-3 appointments a week on average and I don’t really consider that to be quality time with her. Sure, I love that I have the ability to leave work and be there for her. Yet, I wish I could spend more quality time with her.
I wish I could spend more quality time with my husband. And with myself. Essentially, I wish there were more hours in the day. I get up at 5:45 a.m. Shower, make coffee, get Madeline’s bottle and medications, wake Mads, feed Mads, get Mads ready, get myself ready, drop Mads off at daycare, work all day, pick Mads up from daycare, get home around 6:00 p.m., feed Mads dinner, bathe her around 7:30 p.m., get her ready for bed, bottle started and in bed by 8:30 p.m. Somewhere in there my husband and I have dinner. I usually fall asleep around 9:45-10:00 p.m. We watch maybe an hour of t.v. a night. There really is not much time for anything. I want to get back into running again. I need to prioritize time for myself, but it’s just so beyond difficult. Everything in my life is so interconnected—work; Mads; homelife. If I devote more attention to one, then the other two inevitably are neglected.
I wish I were physically stronger. I tweaked my back muscles this weekend and every time I lifted my 29 lbs baby, my back spasmed. It’s pretty painful. Then, my knee started overcompensating for my ailing back and my old ACL injury from high school flared up. Today, I am walking with a noticeable limp. Madeline can crawl and climb stairs, but she cannot really get around on her own much. Getting in and out of the car, her bed, the furniture, her high chair, etc., it takes her parents to lift her. I had heard other parents mention difficulty in managing their immobile children. I wish I were strong enough to lug her around as much as she wants and needs. I guess this goes back to me wishing I had more time to dedicate to physical fitness. Sigh.
I wish Madeline’s frustration with communication wasn’t visible on her forehead after a bad week. She is a headbanger. She bangs her head in frustration. We do our very best to soften her head with pillows, or to pick her up when we see it coming. Sometimes, though, she will get a good whollop in before we can stop her. Then, she sports a goose egg for a week or so. Then, we are met with lots of “Oh, what happened?!” comments. Do I say “My daughter is totally nonverbal and pissed off that she can’t communicate so she bangs her head out of frustration” or do I say “Oh, you know, she just bonked it in the bathtub” (which is actually true)? Yeah, I say the latter.
I don’t wish for a cure. I don’t wish for some magical fairy to come and take all my troubles away. I do wish, sometimes, for just a teensy bit lighter load to carry. At least, I get lots of Gooey smiles, though.