This weekend was a weekend spent on "hospital-watch" with our 7 year old son. His Fatty Acid Oxidation defect makes him uniquely vulnerable to any illness that compromises his ability to eat. Hospital-watch simply means closely monitoring and doing anything, I mean anything, that will get continual calories into him; his body just burns them up. It means having bags packed and being ready to drive to our children's hospital the moment it becomes clear that his body is revved too high to be treated at home.
Sometime I feel like a fireman on a steam powered locomotive. Sweaty and grimy, shoveling fuel non-stop into a furnace that must be kept going in order to escape the murderous galloping outlaws chasing along behind.
We had success this weekend: No Hospital. That's the best resolution of any hospital-watch.
Now I'm bouncing back. I always always forget how tired I am after a hospital-watch. Even a successful one. It's utterly draining in a confusingly disproportionate way to the actual amount of sleep missed.
In similarly train-themed illustration, this is how I now feel:
Except Buster Keaton made everything funny.
I tend to forget that I always feel this way after a hospital-watch; I forget to go easy on myself and my family. I forget to pray.
Because during a crisis I pray- afterwards I feel thankful and pray.
And then I don't remember that I still need God every minute of every normal day. That's when the lack of sleep hits. That's when I worry and fret thus wasting the energy I do have. That's when I become obnoxious to my family.
That's when I thud.
So- I write this to myself and to other parents of chronically ill children: take care and arm yourselves to cope with the sometimes monumentally difficult ordinary days post-illness.
They are the Grindylows of caretakers.