Inchstones and milestones

The trauma, and hope, of diagnosis 

A version of this post first appeared on The Sparkle and the Speckle a few months ago. But for the sake of completeness I’ve posted it here too. Besides, having been read it again, there’s not much I’d change these months down the line. It sort of says it all. 

There’s a song by Baz Luhrmann called Sunscreen. He says worrying about the future is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life will always be things that never crossed your worried mind. – Tim, About Time

When I watched About Time a few weeks ago, this quote really struck me, because it so encapsulates the unexpected turn our lives took at the beginning of September 2015, when our son Aiden was diagnosed with cerebral palsy. 

A few months previously we started to notice that Aiden wasn’t using his left hand and was falling behind on some developmental milestones. An OT assessment and a conversation with Colin’s doctor-sister later, we found ourselves in a paedetric neurologist’s office on the 2nd of September. The neurologist examined Aiden and then told us he thought Aiden had suffered a mild stroke before birth. He sent us for an MRI, after which we reconvened in his office to look at the scan. I will never forget that afternoon – a day when previously distant concepts crashed into my world, surreal yet crushingly real all at once. 

The MRI showed that Aiden suffered a severe peri-natal stroke consisting of a shower of clots, and consequently has extensive damage to the right hemisphere of his brain. He was  diagnosed with cerebral palsy, manifesting as left hemiplegia. We later discovered that his right leg was also  affected, so his diagnosis changed to triplegia, a much more rare condition. Within these hard and heavy words though, there is a lot of hope. Despite the severity of the stroke, Aiden is showing remarkable functionality. So much so, that the neurologist was frankly amazed. His speech and vision don’t appear to be affected, and the delight of his temperament is something everyone who meets him remarks on. 

Those are the facts. 

The emotional implications are much harder to express, partly just because we’ve gone through so much since receiving Aiden’s diagnosis. The first six to eight weeks were utterly awful. We thought and talked about it non-stop – we couldn’t turn it off. Short-term implications, long-term implications. Anger. Grief. Denial. Fear. Worry. It was all there and it was exhausting. But one can’t maintain that pace and expend that much emotional energy for too long. Eventually the storm blew out. We burnt out. We are in a different space now. We can talk about the effects of the stroke without breaking down. We’re a little more detached, and a lot more knowledgeable. Aiden’s physio, occupational therapy and hydra therapy are now part of our routine. But we are still in the process of accepting this awful, horrible, unfair thing that happened to our boy. An event that we had no control over and that we could not have prevented. It’s not something you get over – it’s something you learn to carry. And the responsibility of it is heavy. 

The hardest thing is the uncertainty. We just don’t know how the stroke will affect Aiden in years to come. At the moment the impact is manifesting as a gross motor development delay. Aiden is physically 6-9 months behind his peers because of his low muscle tone, but has the desires and instincts of a pre-toddler. It’s frustrating for him and hard on us. But we have a lot on our side – early diagnosis and intervention, great doctors, plasticity – and he is showing a lot of progress from the therapy already. He’s using his left hand a lot more, is starting to transition between positions and is trying to pull himself up on things. But it’s hard to keep fear from the heart. It’s hard not to compare. It’s hard, but so vital, to hold onto hope.

In the process of processing there have been a number of things that have lodged in my heart and are helping me move forward. One of them is the word ‘tension’. Some wise people we met recently, who are on a different journey but in some ways a similiar one, warned us that the fear of the future is not something that goes away. They also warned that the things you worry about aren’t necessarily the hard things, and the challenges often come from unexpected quarters. There’s tension between reality and expectations. There’s tension between carrying on with life and learning to carry this new load. There’s tension between realism and hope. The tension will not go away, but we will learn to manage it better. 
It’s been 9 months since this bomb went off and I still have moments when it feels utterly unreal. Debris is still falling from the sky, although thankfully a lot less frequently. There’s so much more to say, but it’s impossible to recount all we’ve been through, and I’m not sure it would be a helpful exercise. The important thing is that we are starting to recognize and focus on things that we can be grateful for in this new reality. And the biggest thing is Aiden. He is a precious, wonderful child who’s place is so deeply entrenched in our hearts and who’s value is so indescribable. He’s a fighter, a survivor, our little fiery one. And we love him madly. 

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