I cried last night. Cried and cried. My girl has been sick. A horrible virus that brought a fever and a cough. The thing about a kid with a dodgy swallow and poor immune system is these colds are so much harder. So much. There’s vomiting from coughing a lot. Suction to keep her airway safe. The struggle to keep her hydrated and out of hospital. Diarrhoea because of antibiotics. Then, when she starts to improve, her dystonia goes nuts. So I swing between worried and tired and frustrated and helpless and guilty and back to tired.
The worry began as soon as she felt a bit hot. It cranked into high gear when I walked into her room at 5:30am to find her moaning with a temperature pushing 40C and seizures distorting her pretty face. So I stripped her off…cooled her down…made silent bargains…grabbed the phone, just in case. I wouldn’t (or even couldn’t) be any where else but Missy is hard(er) work when so sick. She needs constant supervision which often means a jog between her (watching, waiting and hoping not to see any more fits) and the laundry to clean vomit off clothes, towels, wheelchair and the carpet. She outdid herself this time though…never before have I copped vomit to the back of the head in the car while driving to the doctor! Keeping fluid up to her is almost a full time job itself…..down her PEG, by hand, 10mls at a time…slowly but constantly.
The stuff to worry about and do is hard….the swirl in my head even more of a challenge. Waking time spent holding my breath, watching; dark hours listening for any cough or noise from the next room…dreading movement that may herald a seizure. The what ifs and possibilities play havoc with my brain. The memories of previous hospitalisations haunt me. I remember this one time (not at band camp…that would be fun) when she’d been unwell, had a huge seizure and ended up taking a siren aided ride to hospital. The ward had already been home for a couple of days when I remember looking at her, still not properly conscious and thinking…”What if this is it? What if I don’t get my smiley girl back?”. At times like this I don’t need to relive past troubles, but I do.
The dystonia Missy has is constant but she has learnt to work with it-use it to make her arms and legs do what she wants. When she’s sick it’s different. It pains her and worries me. All of her muscles contract and she writhes in her wheelchair with a frown and a moan and nothing able to comfort her. While her fever and seizures and lung health worry me, this stage frustrates me the most. As pointless as it is, I tell her to stop it…”Just stop it!”…like she can. Enter motherly guilt! And tears. That has been my rollercoaster for two weeks. Days tending to her needs and the piles of washing and trying oh so hard to be patient as she slams her poor little toes on the metal footplate of her wheelchair. Taking deep breaths as I watch her rub and push her face on her shoulder supports increasing the patch of red, irritated skin. By the end of the day my patience is hanging by a thread and she is exhausted. I get grumpy for her…then with her…then feel guilty all the while completely knackered. The chronic sorrow of grieving for what isn’t amplifies it all. It started as just a cold…but this kid doesn’t do “just”.