This time last year I was panicking about the fact my 19 month old wasn’t walking. At all. After a referral to the hospital for a potential issue with her hips and feet, we were given a bit more of an explanation. At the time, the specialist we saw explained she was “too bendy“. Now, that “too bendy” has been put into a word I’m very familiar with: hypermobility. I am living with a hypermobile toddler.
The picture above was taken around a year ago. Frog’s feet naturally fell at right angles to her body. Her ankle joints were so flexible that her feet caved in, so she was trying to balance on the side of each foot. It’s not surprising she couldn’t stand up on her own.
At the time, it was heartbreaking to see my determined tot trying to catch up with her peers. She visibly withdrew into herself because she couldn’t join in with the games of the other toddlers running around her. People often assumed she had developmental issues or was at least eight months younger than she was. I was angry a lot of the time and became an expert at biting my tongue.
We had three months to wait for an appointment between our initial GP visit and our referral. Once we’d had our referral at the hospital, we had another two months to wait for the first physiotherapist session. By that time, my daughter was almost two years old – and still not walking.
Looking back, the six months between January to June last year were ones of constant frustration. I was a frustrated mum, battling to get information and find a cause to something I KNEW had a cause. Every day saw me bat away well meant advice from other parents whose children “hadn’t walked until they were two” etc. Although these words were meant as a kindness, in my paranoid, ill informed state, I assumed they were trying to tell me nothing was the matter. I knew something was the matter though – just not exactly what.
A year on, and we are smiling. Our toddler eventually got up on her feet and walked all by herself just before her second birthday. She was given special boots (like Piedro boots, but a different brand) just after this, to help strengthen her knees and hips. These boots did the job her ankles were supposed to be doing, helping her gain in confidence.
Once she was properly, confidently up and about, the boots were ditched. We put Frog in hi-top trainers which supported the ankle, or boots from Next. Clarkes were no good, as she wasn’t deemed “ready” for the “big girl shoes” but the soft soled ones provided no support to her ankles. Equally, her tiny feet were too small for the boots recommended to us – Kickers or Timberland. So we opted for a brand called Ricosta. They were perfect at the time.
While I worried about her future footwear and the inevitable battles we’d have over high heels, I was relieved to see my daughter finally blossom into the little girl I knew at home; confident, chatty and playful. The panic in new situations and her habit of covering her face and whispering “scared” stopped almost as soon as the walking started.
Then came October and a final physio appointment, in which we were signed off, with the warning to come back if Frog complained of pain at any point down the line. And we had an orthotics appointment in December, which saw my two and a half year old issued with special hospital issue insoles, to support her ankles and give an arch to her foot which is completely lacking. This means she can finally wear “big girl” shoes.
Today, we received a letter from the Paediatric Orthopaedic clinic at the hospital. It was following up our most recent check up, just over a week ago, confirming that we won’t need to go back. Another department has officially signed my daughter off, stating a “marked improvement” and noticing she is now “walking with an entirely normal gait”. Now it’s just the orthotics team we need to keep seeing, who’ll evaluate her progress with the insoles.
Last year was a tough one. We didn’t know what we were dealing with and there were times when it felt like there’d never be a moment when I’d see my toddler stand up and walk on her own. She has hypermobile joints, possibly hypermobility syndrome. Her joints are so bendy that we’ve been warned it’s unlikely the issue will ever just go away. Although it might.
That’s the thing with hypermobility. You just don’t know. Doctors are hesitant to diagnose hypermobility syndrome until a child complains of joint pain and fatigue. We have the fatigue, but Frog isn’t yet old enough to tell us if her joints actually hurt. All we know is that an active day or a morning at nursery needs to be followed by a rest, or she’ll ask for Calpol and end up sleeping as much as 15 or 16 hours the following the night. As nice as that is for parents who enjoy a lie-in, we’re aware it’s not “normal”.
During the past 12 months I’ve learned lots; how to trust my child, how to be patient, where to search for information and how to shout if I need to. I’ve written articles about what it’s like to be the mum of a toddler with hypermobility and I’ve given a presentation to a room of students training in childcare.
My answer is always the same: it’s not easy, but you get there. You get there, because you have to.
If your child has recently been diagnosed with hypermobility, please know that it WILL get better. There IS light at the end of the non-walking tunnel, however far off it may seem.
And if you need any more information, you’d do well to contact the Hypermobility Syndrome Association.