
Well Tiger, change is afoot and I feel the need to document it.
Whilst we’re all prepared, I’ve got very mixed feelings right now – flitting from optimism to dread – as tomorrow I’m having to let go of you a little…again. I’m having to trust strangers to take care of you and keep you safe. I’ll be honest kid; I’m not feeling great about that. Leaving you there will be another punch to my heart. But we’ll have to give it a go, give them the benefit of the doubt. These new people have big boots to fill.
But I’d like the clocks to stop.
After (what feels like) 20 billion months stuck with me, day in and day out, it’s entirely possible that you’ll embrace what’s ahead. Then again, I know you can find change quite difficult. So we’ll just have to dive right in and see how it goes. But we’ll manage. We’ll find a solution if things get tough. We always do.
You know, when you were born, we never did get those first few months like I’d expected. Those ones where you’re cocooned, getting to know each other. Just us. Finding our feet.
Instead, visitors invaded what should’ve been a peaceful time, and there were appointments to attend. Too many. Watching the clock, constantly. Going here and there. It felt very much like a tick box exercise much of the time. Looking back, I’m not sure whether you really benefitted from any of it. But there you go. It happened.
I wanted to stop the clock even then. I wanted that so badly.
But, of course, it didn’t and the weeks, then months, flew by.
I resented that. I felt like I’d missed out on simply just being your mummy. The focus was on you…but then again, it wasn’t; as if your syndrome dominated everything and every waking hour.
But after 11 years, and during a bizarre, perhaps harrowing and heart-breaking time for citizens of the world – for many different reasons – I got my time with you.
(We won’t go into the mass hysteria over toilet rolls and hand sanitiser. But it happened. I know! Crazy, huh? *rolls eyes*)
I’ll be honest Hannah, I’m relieved you’ve been oblivious to what’s gone on. I’m thankful I didn’t have to explain any of it to you either. Rather selfishly, I’m grateful of a breather from the phone calls, emails, reports, letters and appointments too. However, I’m frustrated that you’ve been deprived of the support you desperately need…and the services you’re legally entitled to.
All you’ve really known over the last few months is home. I know that’s been confusing for you, but I hope you’ve had fun. I have…even though I’m quite tired. Okay, understatement…I’m exhausted; 24/7 parenting for almost 6 months really does take its toll. But that’s not your fault.
Sure, there’ve been ups and downs. That’s life! But you’ve been a star. I’ve really enjoyed my time with you.
I still would like the clocks to stop; for us to stay as we are. However, that can’t happen. So, hopefully, whilst you’re having fun at school, I’ll get some time to do something I’ve wanted to do for some time…to complete The Book Of Broccoli. Huzzah! So, as an aide memoir, here’s just a few of my favourite memories of my time with you this year…
Dressing up as Professor Broccoli to raise that much needed CdLS awareness.
Our little strolls around the neighbourhood – you pointing at things and saying (what sounds very much like) “what’s that?”. Or you pointing at the ceiling saying (what sounded like) “wash the hat up”. I never did quite grasp that one!
Going a bit bonkers whilst dancing in the kitchen to Mister Motivator by Idles or watching you spontaneously nod your head and shake your hand to some other tune with a strong beat.
Paddling and picnics in the garden in the summer sunshine.
Watching you trying to teach Jade the assistance dog how to count. She’s not quite got it yet, but keep trying, she might.
Our afternoon siestas. Lovely!
Learning how to cut your hair…and actually doing it. Now THAT was a challenge!
…and having Daddy Broccoli spend over 15 minutes trying to get the hairbrush out of my tangled hair, because you wanted to brush it. I thought we might have needed to chop it out, it was pretty entangled. You did a great job, kid!
Painting with you for your CdLS awareness exhibition…and getting really, really (really) messy. I’ll never get the paint out of the furnishings. Not to worry. We’re not proud. But one day, we’ll make sure that exhibition goes ahead.
And whilst you thrive on routine and whilst we still needed to stick to most of that, I didn’t need to watch the clock. We went at our own pace, all of the time.
…and that was so refreshing!
I want to stop the clock. I don’t particularly want to let go again.
But I must.
Change is afoot, my darling. I hope you’ll be okay.
So, go and enjoy this new adventure. Make a friend, if you can. Have fun, lots of. Behave! Try and learn something too – listen, watch, concentrate if possible. Go show them what you’re capable of.
Shine, you’re good at that.
…and when the school day ends, I’ll be here, waiting for you.
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