Control

I’ve not written a ‘proper’ blog post in ages, and it’s not for lack of stuff to write: I’ve started this particular post a number of times but it never quite comes out how I want. When I started this blog in 2015 soon after Pudding was diagnosed, the words poured out of me. All the fear and guilt and anger and devastation just had to make it onto the screen in any which way. I barely even had to think about what I was writing, whereas now…things feel more complicated.

This year so far has been one of contrasts. After a very stressful first few months we had a great summer, and I think it can be summed up with one word. Control.

I remember reading an article many moons ago about stressful jobs. It may seem counter-intuitive, but it was saying that the most stressful work wasn’t what you might think. It wasn’t necessarily those in high-powered careers who suffered the most, but those people who had the least control over their work environment. The people who have to react to what’s thrown at them with little or no control over their situation.

Over the last few months I’ve come to realise that this what many of us go through when parenting a disabled child. Before anyone gets upset with me, I don’t mean it’s the child themselves that is the problem. It’s all the other things that impact on our lives  – the lack of accessibility, the fight for support, the forms, the waiting for school places and the never knowing what the future will bring. The control that politicians, budget-holders, pharmaceutical companies have over our children’s lives. That knowledge that your precious wonderful unique child is, to them, a figure in a spreadsheet or just another service user.

When I was writing one of my updates on Facebook recently (come find us here if you haven’t already!) I used the word trauma and then wondered if I was being guilty of over-exaggerating. But actually I don’t think I was – consistent lack of control over your situation IS traumatic.

I never know much about what Pudding is thinking, but it’s pretty clear that the same is true for him. When he can decide where he’s going, or what he does – when he is in control – he is happy.

OLYMPUS DIGITAL CAMERAFor us, the main issue has been Pudding’s health. Not his health now (anyone who sees our photos and videos knows that despite his life-limiting diagnosis he still remains ridiculously healthy) but what is to come. We’ve known since February last year that his body was producing antibodies against the enzyme replacement treatment. Yes, antibodies against that very treatment that is meant to be keeping him alive.

We had to make a difficult decision about whether to go ahead with immune modulation drugs which could result in side effects or increased risk of serious infections. There were also other considerations that had a huge bearing on our decision that I still don’t feel able to talk about. All I can say is that it was a time of agonising changes of mind. How to make important choices on not much information? How to keep going when other people hold all the cards? How to know that we’re doing the right thing when any impact could take years to show what the true benefits have been?

In June we went ahead with the immune treatment – four visits to Manchester over two weeks (four injections and two infusions). Pudding was of course a star, taking even more medical interventions in his stride despite not liking them. Then the waiting started.

The summer has been almost a honeymoon period. With plenty of respite in place for Pudding allowing us to concentrate on fun things with T, and with hope that Pudding’s future was a bit more assured, I felt like I was back in control.

But that assurance is starting to wobble again. Latest results from blood and urine tests have not been very positive and more decisions will be needed soon.

 

House move

I’ve mentioned this before in passing but not really said much as I don’t want to jinx it going through. But as it has sort of been taking over my life I guess it’s time to rectify that.

When I’ve mentioned the perils of moving to friends, a few people responded with the fact that moving house is meant to be one of the most stressful life events. I usually replied jokingly that diagnosis of a life-limiting illness tops that. But the reality is that the arrival of MPS into our lives has directly affected how stressful I’ve found these last few months.

Life is generally full of peaks and troughs of stress and emotion, but since Pudding’s diagnosis my underlying stress has been reset to a much higher level. While I can cope with the usual everyday stuff, anything extra on top of that has become so much harder to deal with.

The difficulty of keeping the house tidy for viewings (anyone with children will understand that special pain), the disappointment of the first two offers falling through, the endless forms and legal stuff have all taken their toll. And joy of joy, stress has blossomed into the new symptom of anxiety.

Mental health has become much less taboo to talk about but it still feels hard to admit how I’m finding it. Logically I can reason with myself that the sky won’t fall in if I can’t find a particular document, but yet every time I have a communication from the solicitor my body reacts. I now only have to see notification of a new email for my heart rate to go up and it becomes more difficult to breathe. Of course, 9 times out of 10 it’s something else entirely – a harvest festival letter from school or the latest sale on at my favourite shop. But each time, that anxiety builds and some days it is immobilising.

We are hopefully now getting to the end of the process and will be able to exchange contracts soon. And I am trying to focus on the positives. The house we going to has more room inside and out for Pudding to play in (and for T to escape from him when he’s hitting). We’ll have the potential for a downstairs bedroom if we need it. The cul-de-sac location means less chance of him being in danger if he escapes. And a detached house means that I need worry less about noise.

OLYMPUS DIGITAL CAMERABut still those fears nibble away at me. ‘It can all fall through at the last minute’. ‘You’ll have to start all over again’. At least one bonus about our current health concerns is that Pudding seems to have stopped getting much taller at the moment, so is less likely to grow out of his current bed and small room… Maybe another year in this house is possible. And I won’t yet have the wrench of leaving the house where both my boys were born. (Technically as we’re taking the rug with us I could still point and say “that’s where it happened”!) Though I’ve already had the tears when I painted over their height marks on the wall.

Cross fingers I’ll be able to share more positive news in the next few weeks and hopefully my emotions can get back to a more even keel. In the meantime, thank god for cuddles and fun with my little Chucklemonster every evening. There is a lot to be said for living in the moment!OLYMPUS DIGITAL CAMERA

Sorry, this post has been a bit of an emotion dump, but do you know what? I’ll probably feel better for having written it, so no apologies to anyone who has had to read it!