And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I’ve never done before.
Help me if you can, I’m feeling down
And I do appreciate you being around.
Help me get my feet back on the ground,
Won’t you please, please help me?
John Lennon/Paul McCartney
There are days when I feel so utterly lost and helpless for what to do about Nik’s ongoing health challenges. I’m not talking about the daily routine of tube feedings and medications, the seizures, or the weekly trips to a plethora of therapies —PT, OT, Speech, Feeding, and the multitude of doctors appointments. No, those are pretty much second nature after all this time.
Days like today, after nights of interrupted or nearly nonexistent sleep like last night (and the night before, and the night before that, and the night before that…) —when Nik is especially quixotic, going from happy to distressed and back again in mere seconds — these are the hardest for me to bear. When Nik is in the throes of battle with his mystery ailment —which seems to be continuously morphing with each day, adding or changing symptoms — that is when I am at my nadir. I am exhausted and anxious, worried, frustrated, and confused. I have been so grateful thus far that Nik truly doesn’t seem to have any self-injurious behaviors except when he is ill or in pain. But lately that’s been a constant.
When it begins, I don’t know what to do to help him. He’s still small enough that I can try to hold him and comfort him through the worst of it. At the very least, I am able to provide an environment where he cannot do too much harm to himself as he thrashes and writhes, kicks, and pounds his head against the floor. The floor is the one I have the most trouble with; it is a laminate floor over concrete slab. I am so worried that Nik will give himself a serious concussion. He already has a permanent lump on the side of his forehead from hitting it against the side of his crib at night and a new bruise has appeared on his cheekbone —about the width of the space between two slats. Whatever is causing the pain seems to respond to Advil but the kid can’t live on the stuff forever! And the doctors, so far, are no help at all.
Days like today are utterly exhausting to me; I cannot imagine what they must feel like to Nik. A string of days such as we’ve had lately with Nik’s fever, rash, cough, etcetera leaves me feeling antsy, gloomy and short tempered with the entire world. I need to get out for something more than a quick trip to the grocery store or the gym. Niksdad, bless his heart, is so busy with nursing school all week and working every weekend that even when he’s home he’s spent, too. And he helps where and when he can, he really, really does.
Respite isn’t an option at this point because of Nik’s medical needs; they are great enough to require skilled nursing care because of his g-tube and seizures yet there is such a shortage of home health workers that we cannot find someone willing to work just a few hours a day, a few days a week. On the other hand, they are not so great that he qualifies for home nursing care through his insurance. And because of Nik’s autism we are reluctant to leave him in the care of just anyone. Obviously, when Nik is not sick I can take him out with me but even that’s been quite a while; he’s been sick off and on for seven weeks now —the worst being the past ten days.
So, what do you do when you’ve reached your breaking point and there is no relief in sight? When you are at the end of your rope and listening to sad or emotional music so you can cry tears of release? When you can’t stay in the same room as your own child for very long because you just don’t have the energy or patience to handle their behavior or to engage, stimulate, or redirect? When you feel like a bad parent but you know it’s the devil of sleep deprivation and anxiety talking in your ear? What do you do?