Conflicted

It’s now exactly five years since the initial diagnosis of Chloe’s heart defect.

Five years.

Far out, how the time flies.

I remember that day like it was today (not yesterday it’s that fresh still). The words that were said, our behaviour. The time. The numbness. The fear of the unknown that started brewing.

And now we’ve put all those fearful things, well, the major ones, behind us. We were told so many times, ‘now you understand there will be three major surgeries…we can’t guarantee outcomes….many children don’t make it.’ It was a terrifying diagnosis. And along the way we’ve known many families who grieve the loss of their child with the same heart problems. I don’t know why we were spared.

And then came Smith-Lemli-Optiz syndrome, and really, this has been the hardest to digest over the years and continues to come in waves.

And so I remain once again conflicted. There’s no doubt along this journey that Chloe has constantly beaten the odds and surprised her doctors. Many still scratch their head over her SLOS diagnosis.

Would she talk?

Would she walk?

What kind of school will she go to?

Will this kid ever eat!!!??

And so many times she’s exceeded our expectations. Over and over again. And so the ‘living in hope’ dilemma and conflict rears it’s ugly head.

Let me explain. When you have a child with special needs you fear ‘living in hope’ but you desperately seek out to do so. With a certain determination. Because without hope you feel hopeless and there is nothing worse than feeling without hope. So we’ve always dreamed big for Chloe and made sacrifices for her to achieve her version of normality.

But with hope comes disappointment. Because when she can’t reach that goal or dream you feel disappointed. Not in her. But in the syndrome, because there’s a fine line between ‘false hope’ and being hopeful. For example, Chloe will need to start school later…unless for some miracle she will have a massive spurt in her communication and speech. But the reality is that Chloe is not ready for school next year. If we hoped and hoped that she would be, and killed ourselves with intensive therapies, she still may not ‘be ready’ and we once again live with the hopelessness of SLOS.

And so this brings me to her latest love. Since Chloe first walked into the field of horses at Healing Hooves, her face lit up and her eyes sparkled and I knew she instantly loved these creatures. She knelt down on the ground in front a giant of a horse called Jimmy, and he nuzzled her head and she giggled. And she started talking!

After her Fontan surgery and subsequent stay, we took her straight to the horses and I could see so much of her anxiety and stress leaving her little body when she encountered these beautiful animals. They are healing to her. And she loved for over a year to brush and pat and feed the horses. Our visits were her highlight of the week. And I slowly began to relax around them too! (This is work in progress)

And so post Fontan we promised her horseriding lessons. She understood this and would role play horse riding with her toys over and over. And so we did. At the beginning I constantly asked her coaches ‘can she really learn to do this?’ So much doubt in my mind as to whether cognitively and physically she could actually ride a horse to some level.

Yes, I doubt. It’s doubt in the syndrome and what we can really set her up to succeed in. I hate the syndrome and the limitations it’s puts on us.

And so after months of lessons, we found ourselves in a place to have the freedom of having a horse. And this little guy came into our lives.

And Chloe loves him. Cloudy. We are so blessed to have him for a trial period to see if he’s going to work out for us. And this is where my conflict comes in. Chloe has made some excellent progress in the last four months, but obviously she doesn’t progress as fast as her typically developing peers.

She sits well. Balances well. She’s confident (too confident)!! She can stop and steer. She can trot and balance. But I still remain conflicted and have to ask ‘what if that’s all she’ll ever be able to do?’

And if so, is that okay? What if she never learns more skills? What if she is always happy being led around and going on trail rides?

And I guess at the end of the day Mike and I have to ask ourselves ‘are we okay with that?’

The constant conflict of hoping for more (and who do we hope that for? Her or us?) but learning to live in the now, because for now she just loves it. Her enthusiasm for her horses has not changed one bit since she first walked in the paddock more than a year ago. Whether she gets to brush or feed or ride, she just loves being around them. And especially around Cloudy! Today started with ‘I go see Youdy today mummy?’

It’s a conflict I can’t help but mull over in my brain, where my dreams need to merge with reality. We finally found something she loves (dancing wasn’t it, gymnastics activities wasn’t it, art wasn’t it…), and we get to allow this passion to be fuelled. But will it mean she’ll go and compete at pony club? Will she ever ‘rise to the trot?’ Will she ever canter? Will she learn the routines associated with being able to ride? Will she learn to react to unknown situations and be competent? Does it matter if she can’t? As long as she is having fun. Is that all that matters?

I certainly hope that I will look back on this moment in time and say ‘why did I ever doubt her’? As I marvel at her riding through a paddock or giving me a heart attack (like that first inevitable fall will surely do)! She tells me she wants to ‘jump jump’!

Trying to walk that fine line between having dreams for her, and knowing reality is certainly a challenging one. Stay tuned.