If you’ve read this blog before, you will know that milestones figure hugely in Boo Land. I wish they didn’t. I didn’t know how lucky we were with Sissyboo. She was sleeping through at 3 months, sitting at 5, crawling and pulling to stand at 8. She walked at 12 months. Spoke in complete sentences, well paragraphs, really, by 2 years, and otherwise was a little miracle.
But I didn’t know that at the time. Not until I had Boo and saw/see him struggle to do any of these things. At 13 months corrected (15 1/2 months actual) he cannot do one of them. I have spent 12 months trying to teach him to roll. Not happening. I think he will sit at some point, but I may be drawing my pension by the time that happens. Helping him to achieve these elusive goals takes up so much of my time and mental energy. All that physio and therapeutic handling. I spend hours and hours doing it every single damn day.
And if there’s a choice between doing something with Sissyboo or fitting in an extra bit of physio with Boo, it’s always a hard call. She doesn’t need me in the quite the same ways as he does. His needs are more obvious and more acute. But she needs me, just as I need her. She is the first light of my life. And even Boo cannot eclipse that.
Juggling the competing needs of Sissyboo and her brother is one of the hardest things I have had to deal with since his birth and it causes me much guilt and sadness on a daily basis. In recent months, much of this guilt and sadness has centred around something really trivial, in the grand scheme of things: her bike riding, or rather, her inability to ride without stabilisers.
Now she’s 5 1/2 and quite honestly, I didn’t think it mattered all that much. Although she’s had a bike for ages and most of her friends got off the stabilisers in the past year, in my mind, she’s still a wee thing. Frankly, it didn’t seem very important to me. In some ways, it still doesn’t. But for the Grumposaur, this was a huge deal. Saying he is a keen cyclist doesn’t cut it. As he frequently tells me, there are only three important things in his life: the three of us, his job, and the many bikes he owns. I don’t think I’ve put that list in the right order, by the way.
Riding without stabilisers is always a rite of passage, but it became symbolic of all sort of things in Sissyboo’s case. Boo probably won’t be, as his Dad hoped pre-birth, the next Bradley Wiggins. He may never be able to pedal on a bike. So getting Sissyboo over the hurdle of riding without stabilisers became a bit of a Grumposaur mission. She might be the next Nicole Cook. And it should have been easy to get her turning the pedals, right? This wasn’t a milestone that necessitated rerouting round brain damage or endless hospital appointments, after all.
Except Sissyboo resisted at every step. She was nervous. She didn’t care (or actually, I think she realised how much it mattered to her Dad and that worried her). We didn’t give it/her enough time, because we were busy trying to reroute around her brother’s brain damage. And then she outgrew her bike. It was clearly too small for her (and had never fitted her well in the first place, I might add.)
So we held out the promise of a new bike as a treat if she learned to ride without stabilisers. So stupid. She wasn’t fussed and if she minded at all, then that was too much pressure to put on her. So one day, The Grumposaur just bought her the new bike anyway. She was thrilled and last weekend, on the day we were celebrating as my birthday, we went to the park to try it out.
She didn’t want me to let go of her. She wobbled a lot. She didn’t want to let anyone down. She was convinced she couldn’t do it. But a new bike, her brother watching, lots of encouragement and the promise of honeycomb ice cream and she rode 3 seconds without Mummy holding on. Then she rode 5 seconds, then 10, then 20, then 30, then a minute. She stopped after 60 seconds. 60 seconds that felt like 5 minutes. She’d proved her point. (Boy had she proved her point.) She’d deserved that ice cream and asked if she could have it. She did. And I was so proud of her.
It was a truly magic moment, and a reminder to me that she needs us as much as her brother, even if the stakes don’t obviously seem quite so high. Trying to make sure that we don’t let her down as we work with and advocate for her brother is never going to be easy, but it’s our job. And the pay-offs are huge.
Well done, Sissyboo! Your courage and sensitivity amaze us every day. And if your brother has an ounce of your determination and good-naturedness, then his future is bright.