Walking a new road under a cloud.

It’s been a bit of an up and down few weeks in the old Life of Rileys. This week has seen a few dark days. This happens occasionally, when it feels like everything just gets a little bit much. People often comment to myself and J that we deal with things exceptionally well. Truth is, we don’t really deal with anything. We just kind of stumble through. This week I very much feel like that stumble may have become a fall.

On Monday, T had an appointment with a spinal specialist. He was referred last year as his lovely OT and Physio had identified that he had a slight curve to his spine. It would appear however, that his spine is now as bendy as (now retired) Olympic medal winning UK gymnast, Beth Tweddle.


(I did originally have a lovely analogy to Alan Carr in there, but J said it wasn’t appropriate…)

T’s spinal x-ray

So here we are at the start of another path. And unfortunately, there is a chance that this path could end with spinal surgery. The specialists will continue to monitor the progression of the curvature, but surgery could be a real possibility in the future. Granted, not in the immediate future, but potentially somewhere along the road. And, (as is becoming an increasingly frustrating outcome) there is very little we can do to prevent it. In the words of the Dr: “If its going to happen, it will happen, and there is nothing you can do to stop it.”

So there we are.

I’m not going to lie, this has somewhat blindsided J and I. The ataxia and the cardiomyopathy, we’ve kind of got our heads around. But this is something new, with another potentially terrifying end game. But it is just a potential at the moment, so thats what we need to focus on for now. And keep everything crossed.

This can be easier said than done however, and I have discovered that with each diagnosis I need to take a couple of days to process the potential worst case scenario. I don’t know why. God knows, its not a pleasant process! But this seems to be a pattern I follow. I know that as sad as I feel today, I will soon be able to compartmentalise this and deal with it as, and when (or if!) it arrises.

Something else which has added to this dark cloud, came from a conversation which took place at T’s annual review. This is a meeting between T, J and I, his teachers at school and some of the health professionals who work with T within his school environment. During this meeting his Education Heath Care Plan is reviewed. This meeting would normally take place later in the year, but as T will be moving on to secondary school it was important this meeting took place early to enable his new school to be fully aware of his needs.

T played an active part in the majority of this meeting, and, in true T style was on top form. When looking at his strengths and weaknesses in school he piped up with:

I should probably stop laughing so much in class. And getting distracted. And talking…

Yeah cheers for your honesty there T. Ideal when a member of the Senior Leadership Team of the school we are hoping to get you into is sat across from us…

Anyway. As the meeting progressed, we were discussing T’s ever changing needs, due to the unpredictability of his conditions. In the middle of the conversation T turned to us.

Are things going to get worse as I get older?

We have never discussed the potential final outcomes of the conditions with T. Not because we want to keep things from him, but because we don’t see how it would benefit him. Especially when there are no hard and fast rules to how things will pan out. Whats the point in scaring him with something that might not happen? That being said, we will never ever lie to him. Which is why this question was so difficult to answer. Because the truth is, yes. It will get worse.

But thats not what we said. What we said was:

We don’t fully know whats going to happen. But we’ll deal with things as and when they do.

This was also not a lie.

T being T, just said “OK!” … then ate a biscuit. He is literally awesome. But the whole thing has made me think a lot about how much he has already had to deal with, and how much more there may be to come.

It is during times such as this, under ‘the cloud’, that writing has become one of my greatest sources of comfort. It allows me the opportunity to get things off my chest, but removes some of the emotion of discussing it in person.

J and I are incredibly lucky to have a very strong and close relationship (even if we did have a right royal rumble the other night because of the ‘tone’ of something J said to me… which I definitely did NOT overreact to…ha!), but I think we are both conscious that we are each dealing with these things at the same time, and consequently we may both need alternative outlets to deal with these situations. So I write, and J runs. In fact, on Sunday he completed his fundraising adventure for Ataxia UK. His 12th and final big run of the year. In total he has raised more than £2700, and we could not be prouder of him. I shed more than a few tears as he crossed the finish line.

We also have our amazing medical team. In particular, T’s amazing Occupational Therapist, Megan, who has been nothing short of incredible these past few years. We all love her dearly. Even if she does break Wombat chairs…

T and Megan (OT and Wombat Chair Killer)

I have previously mentioned the incredible support of our friends and family, but I cannot stress how important this is to us. We couldn’t get by without it.

After a long text convo with my bestie last night, a lovely coffee date with my friend today and a good talk with J tonight, I definitely feel like the cloud is lifting. As my wonderful Mum says:

It doesn’t matter how dark the night, the sun always comes up in the morning.

But still, some days it does just seem a bit overwhelming. Those are the days when the smile might not quite reach our eyes. On those days, please be patient with us. And also, bring wine. 

p.s. Did you know a group of wombats is known as a ‘wisdom’?

3 thoughts on “Walking a new road under a cloud.

  1. I can not believe how strong he is! He completely floors me what a great character he is. You and J are such awesome parents and you always know how to keep him on the right path! Sending you all love x


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