Buggies, admin and physio

A couple of weeks ago we received Alba's specialist buggy. It's essentially a wheelchair. This has been a big move for us, and one that is a huge reminder that Alba is no longer just a toddler who's a bit big for a buggy - she's a disabled child. Seeing her in it for the first time was a bit of a shock, but I've tried to see this as a really positive thing for her and for us. We found out last week that Alba has a subtle curve in her spine. You kind of become numb after a while, just adding thing after thing to the ever growing list. What I'd give to be back to worrying about her possibly needing glasses or a hearing aid. Scoliosis is another thing we can thank Rett for, and is something that even if she does get gene therapy, it won't be rectified. So we're in agreement that we do everything in our power to slow down the progression of this curve. This has helped me accept the new buggy as a positive move because I know her body needs the support it provides. And seeing how happy, comfortable and safe she looks and feels in it has given us comfort and confirmation that actually we need to start looking at more specialist equipment for her.

I am still getting used to this new buggy. Up until now we've used an off road 3 wheeler which was a lot narrower and nimble. Even though we've gone for the 'all terrain' model, it's still a bit more clunky and much wider especially at the front. We'd only have had a year or so out of the smaller frame so opted for size 2 which should last her 6/7 years, but it does mean it's bigger. I managed to take a chunk out of a wall last week!

And it's not just getting used to it physically. I took her out today on my own with the buggy for the first time. Parking in a disabled space with our blue badge, unloading the specialist buggy, strapping Alba in with the harness and tucking her up in her bundlebean felt very different to just popping her into her old buggy. I've used the blue badge many times before but this time just felt different, and not in a good way. I took her into the shop and felt as though we drew a lot of attention. Whether we did or not I'll never know, perhaps it was just paranoia. I did notice people got out of the way more than they do with a regular buggy. And one lady started a conversation that I'm sure she wouldn't have started had I not caught her eye. Again, perhaps I was just paranoid.

I walked round that shop, and for the first time I wondered what other people thought when they saw us. Were those new parents pushing a tiny baby fearful that they may be glancing into their own future? Was the older lady who scooted out the way feeling sorry for me, for Alba? Were those teenagers wondering where those funny noises and laboured breathing was coming from, perhaps giggling about it? Was the lady who's eye I caught eager to know more about Alba and her condition? Did the man at the till who didn't hear me say excuse me (3 times) feel guiltier for not letting a disabled child through than he would any other child? Maybe no one batted an eye lid, maybe I'm imagining situations taken from my own experiences, feelings and emotions.

But I know none of those people know what goes on in our lives behind the scenes. Unless of course they too have a disabled or unwell child or relative. This week alone my 'Alba to do list' includes...

• Reading through her final EHCP

• Contacting her nursery manager to hopefully talk through said EHCP

• Following up a phonecall from a mobility company for a vehicle that can accommodate her new buggy (it's crash tested so can be wheeled in and strapped down in a suitable, converted vehicle)

• Chasing up a DLA claim/ammendment I sent off in May - current wait time is 15 weeks but it's been at least 24 weeks. I was on hold for almost an hour yesterday and had to hang up to get somewhere.

• Calling back a lady from a fundraising charity because I missed her call today.

• Trying to get Alba booked in for a spine X ray so we can move forward with treatment and equipment requests (currently I've reached out to the paediatrician's secretary, the epilepsy nurses (who are usually more helpful than the secretary and I also needed to chase up some rescue medication that was promised by hasn't arrived), the physio and now her GP).

• Saw a private physio today so need to decide how frequently we will be booking in with her, and book in next appointment with NHS physio.

• Contact our health insurance provider to book in physio for me for Alba lifting related muscle tension.

• Order Alba's vitamins.

• Take her to Conductive Education (2 hour round trip for a 1 hour session).

• Go through new physio programme designed by a wonderful charity - around 30 mins a day.

• Visit a respite center for possible support, scehduled for the weekend.

• Booked in an appointment with OT to come and assess her for a new bed and highchair.

I am sure there are other things I've forgotten. And some of this will roll over into next week. But you get my drift. This is all on top of the regular parent toddler stuff. Life with Alba isn't just a special buggy, a walker and daily medicine. There's so much admin. Of course there's no way I wouldnt do it for her, but I'd rather we didn't have to do it at all. And then there's the toll it takes on us as her parents. Some of it we share and some we don't. Nobody else can truly understand unless they are living through similar circumstances. To anyone else treading a similar path, I feel your struggles and you're not alone. Solidarity doesn't change circumstances BUT there's a small amount of comfort in knowing you're not alone 🖤