Here's my Facebook post:
Well it's been an interesting day! Happy 18th Birthday to my gorgeous boy Matthew 😍😍😍 huge thanks to everyone for cards, pressies, pennies and help x x x x
...posted after my lovely lad's 18th birthday party which was held within the "Party in the Park" evening at Walton Gardens. Lots of lovely feedback from friends and family, wishing him a happy birthday, and commenting on how happy he looks. What they don't realise, though, is the "Quick, Matthew's awake, take a photo!" comments that preceded each shot! They don't realise the seizures that preceded and followed these shots. The emotions that flooded this day - the rite of passage 18th birthday!
I woke up this morning at 5am in tears, knowing my child was now an adult. OK, so he still operates as a toddler, but he's made it to 18. His syndrome - Lennox Gastaut - says only 5% of kiddies reach adulthood with "near normal intelligence" and 10% don't survive until this point. Matthew doesn't fall into either of these statistics, unfortunately and fortunately respectively. He's in with the rest of his LGS cohort experiencing a devastating form of epilepsy with multiple seizure types, severe learning difficulties, an unusual spike and slow wave EEG and general regression - which I don't know where it will take us in the future.
This morning it just all flooded over me and I mourned the adult he could've been. I re-mourned the child I had for the first 3 3/4 years since the first seizure took us on this path.
Over the next couple of hours he had a couple of brief seizures - not unusual for him, but each one still tears my heart out.
A dear, dear friend popped round for a post school run cuppa, and dealt impressively with my morning weapiness. Chatting to both my sisters and my daughter lifted my spirits and I got on with the day. Even my ex sis-in-law brought comfort!
When Matthew eventually surfaced, he was quite bright so I whipped him off to college, walked the dog and did some errands to prepare for his party this evening.
He only had a couple of pressies to open, as he doesn't play with different stuff, but had loads of cards and wishes from people around us.
Daft things, like not being able to find the air pump for the only pressie I could find for him - a blow up settee - sent my bottom lip wobbling again!
Unfortunately, a lot of my friends' youngsters weren't able to join us at the party, but as WarrPAC we'd committed to running the sensory area of "Party in the Park" so I filled the car full of gubbins, picking up a buffet on the way and headed to Walton Gardens. Our WarrPAC team really pulled out all the stops to set up the area you can see in the photo's above - so,so grateful and proud!
Matthew himself was quite tired for a lot of his party, with bursts of energy and lovely responses to his favourite 365 days per year song "Happy Birthday"
Near the start of the "do" another young lad went down with a seizure - pierced my heart even tho it wasn't my boy.
The evening went better than I'd expected, with lots of visitors to our area. As we were packing up, however, Matthew had another seizure and chilled on a bean bag for a post party snooze.
Wee bit of dark humour at the end - I'd snuck out to the side of the marquee for a cig whilst watching my boy sleep it off - a group of stewards came over as there'd been "a child left in marquee 4!!"
So.... when I said on Facebook it'd been an interesting day, I guess I meant harrowing!!
It's now 3am and my lad's still whispering and chatting upstairs. I hope he settles soon, cos I wouldn't mind a wee bit of rest myself! He had his last night's respite in children's services last week - had a lovely party there, with a fab photo book from all his years' stay - but I don't actually know when my next respite will be - transition huh? Think that will be a completely different blog post!!!
