Confessions of a medical mom
I’m going to be very honest in this post, kindly take this as both warning and disclaimer. I intend to admit to ignoring a lot of the things that parenting guides tell us we should, nay, must do. And for that matter, doing much of what is prohibited.
As a new mum with a medically complex baby I was terrified that I wasn’t up to the task ahead. Remember the Red Book given to new parents? The one that charts your babies progress through their vital developmental stages? Yeah. We chucked ours into a drawer and ignored it (best health visitor advice ever given that was – as soon as the Dude’s diagnosis came in, she told me to put it where I couldn’t see it).
We already knew he was fighting for his life, developmental stages were not the priority. I found it again during the week before Christmas...a decade after it was first consigned to that drawer it still has the power to hurt, so back in it went (under a pile of stuff that won’t be needed for YEARS).
Bedtime is another one of those subjects upon which parenting experts are agreed – early bedtime, routine are vital.
Erm, not in this household they ain’t. Seizures, multiple medications, regular bedding/clothes changes (especially in the early years before gastro/reflux issues were better managed) meant that bedtime was/is disrupted. To put it politely. Now, we go with what our boy needs – he has his own bedtime routine, it may mean that some nights he isn’t in bed until 10pm but others he’s fast asleep by 7pm. We learnt long ago not to sweat it, if his seizure activity is high he needs more sleep. Other days, he doesn’t.
And on the subject of sleep... we have co-slept, stayed awake all night while he slept on a beanbag, slept in 3hr shifts while the other was on seizure-watch, slept on sofa beds, hospital chairs... for 3hrs we all slept in a dining room together as it was safer than us being upstairs and our boy being downstairs.
I have done the unthinkable and (brace yourselves) held my child while he fell asleep in my arms, when he was a baby I nursed him to sleep when he was fractious, when the seizures have distressed him to the point that he is inconsolable we have run a warm bath in the middle of the night and just let him relax as the warm water works its magic.
I wish that when my boy was first diagnosed I knew what I know now.
That it’s OK to do things your way. That medical kiddos have enough going on to care about following what the ‘experts’ say. Their parents do too. And it’s fine. At 11, the Dude is absolutely epic. And after a decade plus of this, I think I can safely say that we got this.