Call-Me…. Maybe?

A weird old blast from the past this morning has left me feeling very unsettled.

The home phone rang (that in itself is an oddity these days what with mobile phones, zoom/teams & various other communiques!)

It startled me even though we have a call-identifier phone with digital displayer and mandatory caller announcement even if ringing from a withheld number (It’s brilliant! Caller has to state their name, then the handset rings, voice announces name & I can choose to accept/voicemail or block!!.. purchased one day in a fit of extreme RAGE after 3 days of the phone ringing at 7am, 7:30am, 8am etc from some scam company(ies) that had spoofed their numbers to look like UK based innocuous callers so impossible to screen!!) and it came up as Great Ormond Street Hospital.

Immediately my heart did a thunk feeling/noise instead of the usual lub-dub. Instantaneously, I felt a bit sick, a flutter (NOT wind!) in my belly and a slightly sweaty-palmed, skin-pricking sensation. WHY??

It isn’t necessarily strange or unexpected to get a call from GOSH or some other hospital/service provider given Miss Minx’s medical complexities and determination over the years to rack up departments and medical specialities like it’s some kind of #trend #influencer (if this is in fact her end game, I rather wish she’d picked a different area of her life to make her mark as well as some actual dosh in the process!) We quite often have something or other in the pipeline so to speak.

So why was today so discombobulating I hear you ask? Probably shouting muttering GET TO THE BLOODY POINT WOMAN!! (You may have noticed I have a tendency to utilise several hundred words when perhaps 5, at a stretch 8, might suffice)

Because it evoked in me an emotion I have not felt for a long time; a frisson of something I thought I had come to terms with many moons (lifetimes?) ago and that was squarely, if not dead, certainly buried very deep. And what was that???

It was a combination of something, almost intangible

Excitement/Dread/Hope?

And here we are at 9:30pm, some 12 or so hours later and I am still affected by my reaction to seeing that identifier pop up on my landline.

You see today, for the first time in more than 5 years (at least) I had a moment where I thought “Is this THE call?” The one we have been awaiting for, after so many years of tests, investigations, hospital admissions, surgeries, genetics and so forth; the one where we learn what is the name of the pesky syndrome that has caused such mayhem for our (not so little) young lady???

Having embarked on a whirlwind of appointments, examinations, procedures, blood tests, biopsies etc etc from the tender age of 9 weeks old in 2009, partaking in the DDD – Deciphering Developmental Disorders in 2013 and signing up to the 100,000 genome project in December 2015 (you can learn more about these studies here: https://www.ddduk.org and https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project/) only to be told in March 2019 that nothing had been found to explain the multitude of different conundrums she has thrown at us over the years, I thought I had looooong since made my peace with not ever getting that illusive answer(s). And I really thought I was ok with that. Truly.

I had reached a point of equilibrium, an acceptance I suppose that we had done all that we could possibly do and that would have to be enough.

I had got past the stomach-knot-twinge on seeing the post drop on to the mat with a hospital or genetics lab return address on the envelope. I had abandoned the certainty that every medical appointment or consultant we met with would be THE one that <drumroll please> would imbue us with, if not life-changing news, at least life affirming confirmation that ALL WOULD/WILL BE WELL.

And whilst the absence of bad news is a relief (no news is good news right?!) and the return of negative results to some truly horrible neuromuscular diseases brought a definite peace of mind, the niggle, the weight of expectation was for so long, an ever present companion.

It has certainly been an unwelcome spectre at the feast over the many years Madam has been in terrible pain that I was unable to calpol/heatpack/distract (you name it, we’ve tried it) out of existence, night after night.

I don’t want to jinx it but has to be said that the latest combination of (fairly hard core) medications are doing a pretty good job; albeit we have already been warned, that once her body gets used to them, as it has all those things that have gone before, it will be back to the drawing board and plan number 3455347797009….

We’ve had some difficult, tricky, unpleasant (add a euphemism of your own choosing) conversations over the last 18 months. But I have not thought about the lack of diagnosis, the lack of clarity, the not knowing, the what or where or how of the bigger picture that being undiagnosed brings.

I have not reached out to Dr Google & co or scoured websites, research papers, support groups dedicated to this muscle problem, that gastro-intestinal complication, greedily devoured the-keto-diet-cured-all-my-ills-pinterest (I’m sure that probably is a ‘thing’ by the way 😉)

I have not reached out to clinicians or genetics department to ask if any additional findings have come in or if any further screening panels have been considered given the ever enlightening and evolving discoveries in our understanding of the human genome.

And so therein lies the rub I suppose and today’s experience was just a reminder, a rather smack-you-in-the-chops-reality-check that the unknown brings uncertainty. ALWAYS.

Today’s phone call was nothing earth-shattering, there was no epiphany, merely a courtesy reminder of an upcoming appointment, a checking that we would be attending. I don’t really know why I expected otherwise.

So it’s back to quelling that thirst for answers that may never come. *

Instead, and just as we have for many years now, we must crack on with every day life; embrace the days, each and everyone, make the most of getting out and about (as best we can, cos ‘covid-ya-know!) bake and eat (MORE) cake

Over the last few months, collectively we got vaccinated, (COVID and flu) dyed hair shades of blue and turquoise (hers not mine!) argued over the “bin-man trouser” get-up she favours (I REEEEEAAAALLLLLYYY screwed up on that one, I should have extolled their wondrous virtues to the hills and told her I was ordering a pair as well to put the kibosh on those monstrosities instead of reacting with the horror I did, lesson learned!!)

We’ve watched the latest Bond movie, sung songs (Billie Eilish of course) and generally got on with life, with all its colour, light and shade, the rough, the smooth and the acknowledgment that today, every day we #Live our #best lives because that’s all the control that most of us have anyway.

* FYI genetics bods, if anything of interest Minx related does pop up, Call Me….Maybe?

Hellooooooo…… is it me your looking for?!

By definitelynotthewaltons.com

Jelly tot consuming Mother of 4 kids, 1 cat, 2 dogs. Wife/leader in chief of our tribe. Autistic & medically complex kids keeping us entertained, on our toes & never bored...lover of all things sparkly, handbags & shoes. Proud to be a “difficult parent” in the world of SEND

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