• Ali Isaac



This week, I experienced a kind of epiphany.

I was driving back from our local hospital. I had attended an AFO (leg brace) fitting with Carys, during which she screamed holy murder throughout, when in fact, all that happened was that she had plaster of paris smeared over her lower legs. I felt sorry for the old guy having his orthotics fitted in the cubicle next door; I only hope he had a hearing aid and could switch it off (something I often long for, myself, hehe!).

Carys recognises when she is inside a hospital building; too many horrid things have resulted from being taken inside one, needles, surgery, medicines, pain, being pinned down for xrays and scans, it’s all trauma to her. I don’t know if it’s the smells, the lights, the uniforms. I can’t explain to her in a way she can understand that this time she won’t suffer. She has come to expect it, and she reacts.

She had exhausted herself so much with her efforts, that she fell asleep before we even left the hospital grounds. All I could hear was the gentle sound of her breathing, and the wheels on the tarmac. It was a sunny day. The deep blue sky contrasted with vibrant green hills, and the sunshine overlaid it all with gleaming gold. I wondered how anyone could have believed that ‘blue and green together should never be seen’…they were made for each other!

I can’t be absolutely sure of the exact words, because the enormity of what I was thinking didn’t hit me until later, but my thought process went something like this;

I’ve stood on top of mountains on days like this. I’ve travelled, and been to places many people have never seen. I’ve seen things many people can’t imagine. I’ve experienced things some can only dream of. I may never do anything like it ever again, but that doesn’t matter, because I’m so lucky to have done so much already.

I felt content. And free.

Because since Carys came into our lives, I’ve been so busy mourning the things I want but can’t have, the things I still wanted to do but couldn’t, the places I had still left to see, the experiences I wanted to give my boys, even the daughter I had longed for but didn’t quite get.

It was quite a subliminal moment. I couldn’t believe I had been so shallow, so empty. Of course, I’m under no illusion; this was never going to be an easy journey, but at least I am finally starting to let it all go. To work on what’s really important.

I really think I may have set my foot upon the right path.

Later that same day, I bumped into a good friend in the middle of my busy local supermarket.

“So c’mere,” she said. “(another good friend) and I were talking, and we’ve taken some time off work to come over to yours at the end of the month to mind Carys and the boys, so you and Conor can go off and have a weekend, just the two of you…” She continued talking, but my mind had stalled. I couldn’t take in anything else, because what she had just said was still sinking in.

Conor and I haven’t had a night away from Carys since she was born.

And I’m afraid that, right there in the middle of that busy supermarket, I burst into noisy, snotty tears. Because if anybody wanted to give us something precious, that was it. Not to escape from our daughter and our responsibilities, but to have the chance to spend some time with each other and remember who we are when we are together.

Carys is not an easy child to care for. I could never ask anyone to take her on, not even my family. Don’t get me wrong, we have the occasional night out, and are fortunate in having a great babysitter. But a weekend away, well that’s big.

It felt like a reward. In letting go of my negativity, I had found one kind of freedom. Now I was being gifted with another.

But perhaps the greatest gift of all is having good friends. Thank you, you know who you are.

#raresyndrome #beingamom #realisation #specialneeds #motherhood #friendship #Unique #responsibility #subliminalmoment #mom #caring #epiphany #mothering #AuthorAliIsaac #gratitude #caregiver #CardiofaciocutaneousSyndrome #inspiration #truefriends #thegreatestgift #syndrome

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