If you were to ask me to list the things I find stressful about parenting a medically fragile child it would probably be a long list and I am not entirely sure where I would start. But one of the things I know would be on the list is the stress of chronically living with more questions than answers- of not knowing, often, what to do, or how to proceed while simultaneously faced withe knowledge that your decision can have serious consequences. Today has felt like one of those days where I am grappling with the not knowing more than usual.
On more occasions than I care to count Matthew has presented as “off”, or “not quite himself” immediately prior to a respite admission or a family holiday. At times I have been convinced there is some sort of conspiracy theory going on. The catch, however, with a kid like Matthew is that these moments can be nothing more than he is annoyed with your ongoing choice of cartoons on television, or they can precede a significant health crisis that lands him in the ICU, or they can fall somewhere in between and resolve with time and without much fanfare. You just don’t know and it can be difficult to guess. I take some comfort with the fact that trained health professionals get it wrong with regularity. And, not knowing what to do makes it difficult to plan a life. Should I admit the kid to respite and proceed with my own plans, or should I err on the side of caution and keep him home and cancel everything. The latter, of course, is the logical answer. But, if we did that every time Matthew looked “off” we would never go anywhere or do anything which is not in the best interest of our overall family health. Over the years we have struggled to find that balance of making the best possible decisions for Matthew’s health while also trying to protect the family, the marriage, and in particular my sanity as the primary caregiver.
Since leaving the ICU two months ago Matthew has looked great. He has been happy and healthy and enjoying a broad range of outings and activities. And then this week, just prior to a weekend respite admission (of course), he started looking “off”. In the last 24 hours we have had the classic presentation, for Matthew, of irritability and/or distress and GI symptoms. CRAP. (Literally). Things seem to be settling, and his irritability is intermittent, but I now find myself struggling with whether we send him to respite for the weekend, or keep him home. On one hand if he is going to be miserable simply for the sake of being miserable for the whole weekend it might be nice to let someone else deal with him, particularly if there is nothing any of us can do. Sometimes it is healthy not to torture myself with his distress and having a break from a screaming kid is a good thing. However, if something is brewing sending him to respite and to caregivers unfamiliar with his routine can be problematic. And then there is the fact that perhaps all the kid needs to do is poop, with some help, and he might be fine.
I started writing this blog post this morning, and is often the case, have worked on it off and on throughout the day as I deal with Matthew. I spent the day waffling with my decision and uncertain how to plan my weekend. Was I going to the cottage, or was I hanging here with Matthew? Should I pack, or not? Should I go grocery shopping for cottage supplies? Matthew is now home from his day program and laughing hysterically, so as far as I am concerned the kid is going to respite and I am outta here in a few hours!
With any luck things will remain calm.