In my self-imposed challenge to blog my way through the alphabet about special needs parenting, I have found a few words that beg to be chosen.
W was always going to be about walking as it is an obsession of mine!
My daughter Lucy is seven years old and cannot walk. She can weight bear with assistance and take some steps with a lot of help but she needs wheels to get around.
Up until a year ago we did this in ‘mainstream’ high street shop bought buggies or pushchairs (I wrote another blog post about these as they became quite an addiction!)
Over the years, we also had a couple of buggies from the Wheelchair Service, an Ottobock Kiwi and a Thomashilfen Swifty, but when she outgrew these they refused to look at other buggy options for us.
I bought a Budget XL umbrella fold buggy (like the Malaren) that lasted us well for a year until with overuse it broke and we were back to looking at a bigger special needs buggy again as she had outgrown of what the high street had to offer.
This time and pre-warned, I took our NHS key worker with us to our next Wheelchair Service appointment and saw the look of horror on her face when they said quite bluntly that I was being selfish keeping Lucy in a buggy as I was “depriving her of her right to independence”.
She sat there looking a bit surprised and when promoted by them to touch the wheel rails, she just banged the spoke guards loudly. The wheelchair also weighed a ton.
I explained to them again that having Fibromyalgia meant I couldn’t lift this heavy wheelchair in and out of the car boot, to which I was told I could send in a medical letter proving that but the needs of the child were their main priority.
They then put her in a chair with ‘transport wheels’ (the small ones that you don’t self propel) and when I pointed out that defeated their objective of Lucy gaining independence they shut up!
I remembered however that Lucy was entitled to a voucher from Wheelchair Services to go and buy something better, not on their limited list.
In June, I drove Lucy three hours to the Kidz South Exhibition to look at buggies.
We ‘test drove’ a few and collected details to review later. Then an amazing thing happened. I chatted to the rep on the RMS stand and he suggested I sit Lucy in a small wheelchair whilst we made plans for a home visit to test buggies they hadn’t brought to the exhibition. He hadn’t left the breaks on.
The first thing I noticed was hearing a squeak, and looking up from my phone to see a space where Lucy had been and a woman rubbing her foot on the stand across the aisle where Lucy had sped over to and caused mayhem!
I really should have apologised to the woman more but both the rep and I were jumping up and down with excitement!
I filmed some of Lucy moving the wheelchair on her own.
It was her smile though that said it all. Her face was lit up with the joy of independence.
I stood there in a very crowded exhibition hall and realised my baby had grown up. She was choosing her path forward and it wasn’t in a buggy anymore.
Tears streamed down my face.
The next few months were full of yet more appointments with Wheelchair Services, trying to prove that Lucy needed a lightweight self propelling option to gain independence as much as I needed it to lift into the car.
In the end we won our fight, and I will forever be indebted to that lovely RMS rep for his support on that.
He didn’t even make a sale as they wheeled out another NHS approved chair (which is more expensive) that they preferred.
The day finally arrived 10 months after our referral to Wheelchair Services, when we collected Lucy’s new wheels.
In the centre of the large assessment room stood a purple and pink chariot waiting for its new owner.
That owner is a little girl who proved she is older than she looks and capable of steering her own course.
I’m so looking forward now to the journey she is embarking on and the adventures she is going to have. I am so immensely proud of her.
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