“He takes such a lot of care.”
“He’s so unresponsive.”
“It’s thankless. He never gives anything back.”
“What does he mean when he cries?”
“He never does anything but cry.”
“Does he like it when we play with him?”
“Can he see me?”
“Does he love me?”
“Does he know who I am?”
“What are those people thinking?”
“Am I doing enough?”
“Am I neglecting my other children?”
“Am I neglecting my partner?”
“Are we going to run out of money?”
“Will he ever be able to roll? To sit? To walk? To eat? To talk?”
“Will we ever know what’s wrong with him?”
“Can we risk having another child?”
“What if he’s still like this in fifty years’ time?”
“What if he outlives us?”
“What if we lose him?”
We don’t often think like this. Usually, we put a brave face on it. Often, we are happy. Sometimes, we relish the challenges life brings. We are fighters. But we’ve all had the odd, late night, slightly wine-fuelled, is this it for the rest of our lives? kind-of wobble.
By “we” I mean the parents of undiagnosed children. We didn’t ask to be a “we” but we have been thrown together and now we are a tight-knit community, strung out across the UK yet bound by common fears and common hopes. We all understand the wobbles. We understand The Things That Make the Wobbles Worse:
- Top of the list has to be Google. Every time I hear of a medical condition I haven’t come across before, I am there on my phone, searching the list of symptoms, scanning for a match. Alternatively, every so often I enter Benjamin’s own increasingly long list of symptoms into a search engine: “((microcephaly AND lissencephaly) OR microlissencephaly) AND seizure AND reflux AND hypotonia AND “simplified gyra*” AND (development* AND delay*) AND … and come up with an obscure scientific paper about a gene I’ve never heard of that says “development remains arrested at 3-5 months” or “death usually occurs by the age of two.”
- Comparative parenting. I say ‘comparative’ rather than ‘competitive’ because we know there is no point competing. But it’s still galling to go to a playgroup and watch his peers laughing, chattering, toddling around, munching on breadsticks. It’s only going to get worse.
- Mummy guilt. Having a child seems to catalyse a reaction in a woman such that every moment of every day she’s searching for something to feel guilty about: I’m too hard on him. I’m spoiling her. I give him junk to eat. I let her watch Top Gear… Having more than one child multiplies the guilt exponentially. Having an undiagnosed child initiates some kind of factorial equation that is beyond my mathematical education to understand. My other kids are dragged along to so many appointments. I didn’t manage enough minutes of physio today. I haven’t yet applied to this charity to get that funding to go on thither expensive and complex programme at the other end of the country. Is his condition my fault?
- And, well-meaning people. “My friend’s cousin’s daughter had cerebral palsy and she’s just swum the channel.” “Have you heard of this alternative treatment in Bulgaria that’s said to do wonders for autism?” “But he doesn’t look sick…”
And we know that there are Things That Make the Wobbles Better:
- A hug. A smile. A nod of understanding (real or virtual).
- A simple answer to a simple question, no questions asked, no judgements made: How to test an NG tube is in the right place when you can’t get anything out of it? How long is it taking at the moment to get an answer from the DLA people? Should I be fighting harder for a wheelchair? Which travel insurers cover undiagnosed medical conditions and which don’t?
- Getting that special smile, that stiff-armed wave, that baby-bird-like open mouth for his favourite food.
- And, when his three-year-old sister tells you, despite everything, that he’s her best friend.
Friday, April 24th 2015 is Undiagnosed Children’s Day, organised by SWAN UK (Syndromes Without a Name), raising money and awareness for children and their families living with undiagnosed conditions. We might not hit the headlines. Our children might not feature in supermarket adverts or popular novels. But we are SWAN, and together we are strong against the wobbles.
See what others are writing about Undiagnosed Children’s Day and life with an undiagnosed child at the SWAN UK Blog Hop, powered by Linky Tools: Click here to view the contributing blogs…