Thank you for the invitation. Let me process this request. If Aunt X lives three
hours from my home and Christmas dinner is at 3 p.m. We can make this work.
I have too many children to sleep over for the night, so we will plan a way to just
come for the day.
How did I plan before chronic illness was part of our regular routine?
The night before, throw some snacks in a bag, pack backpacks with pajamas
(to dress in before leaving), a few books to occupy boring road times, maybe a
DVD in case people get really angsty about being in the car, an audiobook with
Christmas themes, and more snacks.
My husband can either prepare overnight oats which they will eat without
resistance when they rise at the crack of dawn (or earlier) or I can put their
breakfast in Tupperware pieces to eat on the road. We’ll plan to leave by 7:30
a.m…after morning coffee. Children should set outfits out the night before with
instruction to dress immediately upon disturbing the house with their
wakefulness. Someone should put extra food out for the cat. I hope there is gas
in the van. Run out the door by 8 a.m. after double-checking the litterbox and
locking the doors. I wish I had flowers or some other contribution to dinner other
than more mouths to feed.
Family life was complicated enough…
Now let’s consider life as it really is: life with a chronic medical condition.
Do all of the above, but spend thirty minutes thinking and then thirty minutes
processing aloud the debate over our son’s medical schedule. His pump will
beep at 8 a.m. We need to pack supplies to unhook him, or we can leave after 8
o’clock so we do not have to deal with this medical procedure on the side of the
highway or some dirty parking lot. We could leave the day before and find
some place to sleep, but then we need to pack two bags of his TPN rather than
just the bag for the drive home, plus sheets, vitamins, a pack-n-play so he
doesn’t fall off the bed pulling his tubes as goes down, plus a thousand diapers—
well, let’s forget that plan.
Okay, just a one-day trip.
We probably will not manage to leave earlier than 8 a.m. So let’s hook him up
early the night before so his 14-hour cycle finishes with a little wiggle room. We’ll
set up his medical tray ahead of time so we can do it after everyone is loaded up
in the van (except him, crying because he is three and doesn’t understand he is
coming too, but just has to wait). We have to aspirate the ethanol lock when we
arrive (family loves when we talk jargon), which should be fine if we unhook him
right before we leave, three hours sitting nicely between the 2 to 4-hour window
to do this.
Now I have to remember to hook him up a little before 6 p.m. on Wednesday
while I prepare dinner and yell at the kids to eat all of it because we are traveling
the next day and that seems like the best thing to do.
Okay, where were we?
If he is hooked up early, he’ll beep off early, and we unhook him as we’re
running out the door. His father will double-check the medical supplies we’ve
packed, go over the emergency bag and make sure we have back-up of
everything else we just packed, prepare his next back of TPN so we don’t have
to bring syringes with us to my aunt’s house, extra diapers, books, toys, big
Legos, blankets, an extra blanket (because I worked so hard to make these his
comfort objects while he was in the hospital) more diapers, oh, and his Sippy
cup. When he gets dehydrated (in case we hook him up late) his Sippy cup is our
best bet for getting water into him, what with his oral aversion at all. His big sister
may as well throw his pillow in the van as well. He seemed like to like holding it
on the last trip.
At dinner, I will make sure he isn’t sitting next to my grandmother who loves
him but doesn’t understand he isn’t being obstinate, he’s just had trauma and
wants a plate of food but won’t eat it. The rest should go well.
Except my aunt has a pool without a fence so we’ll keep an eye on him
because if he gets in the water we’ll have to do a dressing change. I had better
bring his tray and dressing change supplies, just in case. Of course, we also
don’t want him to drown, but that seems less likely than an emergency dressing
change. It is hard being so far from home. Which is the nearest hospital in case
we have an emergency?
My head hurts so much after all this planning.
All these steps, all this arrangement, for six hours in the car and three at our
Oh wait, a message. My aunt changed her plans and decided not to host. I
guess we’ll spend that day at home.
I can handle that.