And time stood still

Everyone has those moments in life - you know, when time stands still and reality crashes into view.

Time has stood still for me a few times in my life, but this? I think this takes the cake.

Hamish, our beautiful boy, has been diagnosed with hypotonia.

T and I feel a little bit like our hearts have been broken. No parent ever wants their child to have to deal with anything that might make their days more difficult.

Perhaps, on the surface, hypotonia - low muscle tone - doesn't sound particularly serious.  Our world is littered with references to tone, toning up, getting toned, building tone. It sounds easy to fix. Just hit the gym, right?

It's rather more complicated than that, and we're still reeling I think.

The truth is that the amount of tone your muscles have is the amount they will always have. It can't be fixed. It's got nothing to do with strength. People with low muscle tone don't have as much natural tension in their muscles, so they're harder to engage and harder to control. Low muscle tone also comes with extra-long connective tissue between the body's joints, so limbs and joints are generally a bit floppier, a bit softer and more prone to injury.

Hame tires easily. He gets sore legs. He is prone to chest infections. When he was a baby he had trouble with tummy time and holding his head up for periods of time. His body starts to slump as the hours go by. He falls, and he's not able to fully support his body weight. He doesn't complain. Each individual symptom is barely discernible, but we, of course, have noticed.

We've done everything for this beautiful baby of ours for his whole life so far. There's nothing we wouldn't do. But we can't do anything to change the cellular construction of his muscles. We can't change the length of his connective tissue. We can't accelerate the time it takes for messages from his brain to reach his muscles, and we can't change the fact that it takes him 22 times the effort to engage his muscles, or stop them wavering when it all gets too much.

And as heartwrenching as it was to hear that his condition wasn't something that could just be 'fixed' and 'he'd be right', it was like someone switched on a light bulb. Everything fell into place; it all made sense. In our heart of hearts, we knew there was something.

In Hame's case, it is most likely to be prematurity that caused his hypotonia. While born at 33weeks and 5 days gestation, my babies suffered from intrauterine growth restriction and were born at the size of a typical 28-29 weeker. The brutal truth is that he missed all those vital extra months of growing - time when his tiny little body would have developed fully, and made all the connections it needed to.

But strangely, amongst the sadness, I feel incredibly grateful. We are so lucky. Hamish is so lucky. We have access to so much medical knowledge, expertise, and early intervention therapies. We are resourceful, and dedicated. We will do whatever he needs and whatever it takes.

Above all, we have love. That little boy is so so loved. So cherished. And he is so happy. This brilliant, joyous, delighted little boy shows us each day how lucky we are.

He says that when he grows up he is going to be a superhero. I think, just maybe, he already is. He is remarkable.

We are blessed.