It’s 10pm and all is quiet, except for the sounds coming from under the jungle-themed bedsheets. “No!” he cries out. Wakeups are normal in this house. Night terrors used to dominate our lives. This is different. This is a nightmare. This is new. He sobs a little in his sleep.
I know why he’s so distressed. Just a few hours earlier a nurse and I tried to keep him still while he had an EKG. It was a disaster. He was terrified, desperate and wild. Just a few days earlier, a nurse and I held him down on a yoga mat while drops were unsuccessfully squeezed into his tightly shut eyes. A few minutes later the whole process was repeated. Just a few weeks ago he was held down by two medical professionals and my husband while his forehead was stitched and glued together.
It’s clear: this kid is traumatised.
Over the last 3 and a half years of being a mum to my rare son things have gotten easier in so many ways. One area that I still find incredibly hard is all the appointments. We have so many appointments. On a typical week we average about 4 appointments, usually therapies, but we have been known to have up to 6 in one week when you throw in medical appointments with specialists too. Those weeks are physically and emotionally exhausting. The impact these appointments have on every part of your life is something you can only truly understand if you are on this journey too.
It’s not only the financial impact.
Although money does play a big role.
For the lucky ones the humungous costs of therapies and medical care are either partly or fully covered. For the unlucky ones, you have to pay out of pocket. This is when it becomes unfair: those with money can pay for therapies and medical, those without, well, can’t and their children miss out.
It is the financial conundrum: who goes? Who works? Who gives up their career? How do you juggle the seemingly impossible?
It is not just the big costs but the little ones too.
Parking.
Unexpected lunches out.
Snacks to keep your kiddo from losing their little minds.
Trains and buses.
It all adds up.
It’s not only the admin.
It’s becoming your child’s secretary – an unpaid job you have zero training for.
It’s liaising with specialists.
It’s the scanning, file-making and emailing that goes on late into the evenings.
It’s that appointment at 12:30 on a Monday that is TOTALLY GOING TO SCREW UP YOUR NAP SCHEDULE but there’s no other option.
It’s the scheduling and re-scheduling and cancelling and postponing.
It’s that additional to-do list you never asked for:
“Can you just call the health insurance and check?”
“Can you just email your paediatrician for a prescription?”
“Can you just scan and send every decision made by the disability insurance?” (Yes, this really happened).
It’s not only time.
It’s the hours of waiting in waiting rooms.
It’s the hours of waiting on hold.
It’s the waiting lists to see this therapist or that doctor.
It’s waiting for life-changing results.
It’s the heart-pounding, sick to your stomach wait for the doctor to finally say the thing that terrifies you most.
It’s having no free time-slots to meet friends or go to playgroups.
It’s the homework:
“Only let him drink through a straw from now on – I’ll know if you don’t”
“I want you to take him to the playground as much as possible” – ah, yes. I have oodles of spare time for this.
“Don’t let him sit like that! You have to correct his position every time”.
It’s not only the emotional impact.
It’s the dread. What will they say? Please, please, please, let it be good news. Please let things be ok this time.
It’s the lying awake at night worrying.
It’s the guilt of doing too much or not doing enough.
It’s also the guilt of not doing your ‘homework’.
It’s the jealousy of seeing other families doing ‘normal’ things with their kids.
It’s the guilt of regularly holding your kid down so a doctor can do their job.
It’s past trauma resurfacing during an appointment and no matter what you do to push it back down, it still seeps out.
It’s repeating your answers to the same questions over and over again.
It’s all of those things and more.
And, now it’s nightmares.
The next day, he wakes up with a mischievous smile and full of beans. All is forgiven. I hug him extra hard while watching his favourite Youtube videos to make up for the hard week we’ve had then pull out the calendar and check our schedule for the day. No appointments. Not one. Perfect. Time to schedule in some fun.
