I had a bit of a moment last week. I admit it. A childish, throw my toys, in a huff moment (in a toy store, ironically.) You see I love Christmas. LOVE IT. I like irritating Christmas songs, tinsel, fairly lights, mulled wine, Christmas films with now in-and-out-of-rehab child stars, streets lined with happy people on their way home (because a fairly high proportion of them are at least moderately drunk), Santa hats, cinnamon sticks. You get the idea. Only last week fate wasn’t feeling the Christmas cheer. This was meant to be our fabulous, amazing Christmas to end all Christmas’s and once again, Little J’s undiagnosed syndrome decided to play Scrooge. Only, much like Scrooge, I had three big moments. It all got a bit Dickensian really (only without the fog, and long words). You see, Christmas past, present and future came to say hello, show me how unbelievably lucky we are and give me a much needed dose of perspective.
I have some big festive thank yous to make, but I’ll come onto that. Firstly, you are probably wondering what caused me to act like a child in a room full of children. The answer….toilets. No, I’ve not taken to using inoffensive swear words – I literally mean toilets. I know. It’s not exactly earth shattering is it? But then it’s always when you least expect it, when you think you are in complete control that the fear and frustration of life without a diagnosis can creep up.
You see, Little J is having a bit of a hard time of it these last few weeks. I won’t bore
you with lengthy medical explanations,
but some of his ‘episodes’ are becoming potentially more serious. He is frightened by them and we have suddenly
realised that we had become incredibly complacent to the strange things that he
can do. We hadn’t really seen what was
right in front of us. And so, the New Year
will bring more tests and likely more medication. I do think that we will get this under
control. I trust our medical team and
their judgement. However, for now, we
have a little boy who can become very frightened and confused on a daily
basis. A little boy whose problems seem
to be triggered by loud noise, bright lights and lots of people. Right at the time when we so wanted him to
feel the excitement of Christmas.
|When you are dressing an octopus as Santa|
is is time for a new blog photo theme?
And last week, we felt that acutely. I had decided that Little J & I were going to do something we never do. We were going to have a day together, completely free from appointments and therapy. We were going to do some Christmas shopping, look at the lights, maybe even find Santa. It was going to be fabulous. Only it wasn’t.
Now I have absolutely no right to whinge about the challenge of navigating a pushchair round busy shops. Pretty much every parent of a child under two has to do it. Only with a disabled child, it gets a bit trickier. The main issue - your child is heavy. You want to minimise lifting them in and out. You know all step free routes round your local area and the location of all the ‘pay at pump’ garages. And if you have a child who can get distressed, you always need an exit strategy. When Little J was younger, it was easy. He would cry, I would pick him up. I just can’t keep doing that now – not if I still want to be able to lift him in a few years. So now, we walk. Unless he is in a painful dystonic episode (which I would always pick him up for) I can generally calm him by getting outside and walking. But being trapped in a shop with no way to get out is a full on meltdown inducing nightmare. And so Christmas is challenging. Not only are there more people, but there are extra displays minimising the width of the aisles. Many shops just aren’t really an option.
So on our outing day, we opted for a department store. More space. Bigger aisles. I headed straight to the floor with all the toys, excited to see what I could find for little J. Only the noise of children running around, the lights, the sounds – they all sent Little J straight into a cluster of episodes. Again and again. Back to back. We tried to stay out of everyone’s way, as I stroked his head and talked to him. Except nobody there realised there was anything wrong with him – we were just in the way. And so we kept re-adjusting, moving, as the streams of happy families, with children chatting away about Christmas streamed past us. We watched siblings playing together with the display toys and I just felt an enormous grief. Grief for the life that he could have had, grief for his pain and fear, grief that he can’t be part of the world that a two year old should inhabit, grief that without a knowing our genetic circumstances he will never have a sibling to play alongside. Just grief really. I am not one to have ‘it’s not fair’ moments – I believe that life is never meant to be simple and there is always someone in far more difficult circumstances. But right then, watching him struggle..it got me.
Little J had come out of the episodes, but I wanted to calm him down and so we headed to the toilets. What greeted us was almost ironic in its relevance. It was like someone had taken how I was feeling in the moment and made a pictorial representation of it. The toilets had beautifully painted murals by the doors to distinguish them. There was one with a pretty pink princess and the word ‘princesses’ in carefully scripted italic writing. The other had a blue prince with a crown and the word ‘princes’ in the same, extra special font. Then there was a third door. A door with no child friendly pictures. Just a sign across it. In black. In Times New Roman style straight font. In capitals. DISABLED.
I know it’s not a big deal really. I mean they’re just toilets for god’s sake. But in that exact moment, it hurt. I wanted my boy to be just as special as all the other children. I wanted him to feel as much a prince as every other boy there. So I spun his pushchair around in a huff, flew past the toys I had hoped to buy and made it to the lift before the tears started to come.
Thankfully I composed myself in the lift and decided that tweeting a department store about their toilets was a bit unnecessary and borderline weird. It was then I got my first reality check. My ‘Christmas future’ moment if you like. As we were getting out, I almost walked straight into a beautiful little girl of about six or seven getting in. Her mother was with her, pushing a large empty pushchair. The little girl had run to the lift, she was smiling, she was curious, she was excited. She was also disabled.
Then I realised. I looked at her stepping into the lift, excited to get to the toys and I realised that my grief was misplaced. Because there is only one thing we know for certain about my little boy’s future. We. Don’t. Know.
We don’t know if he will walk. We don’t know if he will talk. We also don’t know that he won’t. We don’t know where he will be in one, two, three years time. So why I am wasting time worrying? Why I am spending our precious time together getting angry at toilets. I mean, toilets. Really.
My son’s future is a complete unknown. Totally unmapped. But I do know that he has a lot of people cheering from the sidelines. I know that actually, we aren’t really alone, stood in the quietest aisle of a toy store, whilst the world passes us by. And so I come to our ‘Christmas present’.
We have been a little concerned lately about the financial implications of caring for Little J. I will try not to wax lyrical on this, but one of the biggest surprises for me of having a disabled child has been the immense cost. Wondering how much these mythical special needs things cost? Well imagine how much you think an item like a travel cot, or car seat could possible cost. Now add a nought. I remember walking in torrential rain once, whilst attempting to manually hold an inappropriately shaped raincover over Little J’s special needs pushchair. Families kept passing us, with young children snuggled warmly away from the elements and I found myself peering enviously at their offspring. Not for their developmental abilities or bright futures, but for the pieces of plastic that were successfully preventing them from taking in impromptu shower. You see, a rain cover for Little J’s pushchair costs about the same amount as an entire mainstream stroller for a two year old. For a piece of plastic in the right shape. The hood to attach it to is even more. And they are some of the minor things he needs.
So you can imagine, we were feeling erm ‘perplexed’ about how on earth we could provide all that Little J needs. And then something unexpected happened. We had long ago come to the very difficult decision that we would need to fundraise for Little J. It was a difficult decision because we felt uncomfortable asking for help. We have a roof over our head, my husband has a good job. But we cannot even begin to fund what our son needs. Certainly not in the timeframe that he needs it in. I am extremely lucky that I have an amazing team of friends helping us, because without them I’m not sure we would have got anything off the ground.
One of the necessities around this decision to fundraise was me letting go of permanent work. We had always thought that I would be going back to work, at least part time. Well I say ‘letting go’, that isn’t entirely accurate, more ‘fought tirelessly for a childcare option, wrote to any politician who would listen and then realised that the system was completely against us and it was never going to happen.’ But that’s another post entirely.
The first people to see our Just Giving page to raise money for Little J were my old colleagues. My previous manager circulated our page around to see if anyone wanted to donate. The response was unbelievable. I mean, truly beyond anything we could ever have imagined. Wondering how much? Well imagine what you think something like this might raise. Then add a nought. To say we are touched is an understatement. What amazed me is that people I have never even met chose to donate and to help my little boy. I don’t even know how to find the words to say thank you. It all seems inadequate. But I think it is a huge reflection of the fantastic organisation I once worked for. I don’t think there would have been many places where that would have happened. Some of the money raised has already enabled us to take Little J to a therapy reassessment. Something that would otherwise have been a real struggle to fund. The result of this is a new daily programme that we feel confident will make an immense difference to him. So all I can say is a huge, enormous, thank you.
As you can imagine, this has certainly helped to turn our Christmas around and to give us an optimism and a drive to keep pushing Little Js development and to keep going. Even in the face of recent regression and these unknown ‘episodes.’ But at the beginning of this I talked about perspective. And where that perspective has come from is undoubtedly our Christmas past. A past that all of a sudden came back to me as I walked away from that department store. A past that made me hang my head in shame for getting upset about a not even particularly offensive toilet sign when I should be so unbelievably grateful for what I have.
You see, we haven’t had many Christmas past’s with Little J. Two to be precise. The first, he was tiny and had no idea what the festive season was about. The second. Well, the second still makes my stomach flip a little when I think about it. Last year, Little J was not doing well. In fact, he was regressing regularly. He had completely stopped growing. Illness was a nightmare. He would become floppy, his episodes would increase and he would usually lose a skill. First to go was babbling and in December he suddenly seemed unable to sit. When you have an undiagnosed child, there is a process. A scale of severity. As your child gets older, more and more of the benign conditions get ruled out. Until you reach a point where there are very few options left. It is either scary, terrifying conditions, or something so rare that no one knows it. We reached that point in December.
We had always been told that a muscle biopsy was in the long term plan, but everyone hoped another diagnosis would be found first. It was to test for mitochondrial disease. Mitochondrial disease is a complex condition, one I won’t even attempt to explain, but it is usually progressive. In a child like Little J, who began symptoms dramatically in infancy and who was regressing, it would usually be life limiting. In December, we began to feel like Little J may be beginning a downwards spiral. The doctors agreed. He was brought in for a muscle biopsy urgently, three days before Christmas. We spent Christmas trying not to touch the four inch area on his leg where skin and muscle had been removed. We tried to engage him and to get him to smile at his presents, or laugh. He wasn’t really interested. He was drugged up on pain relief, his muscle tone was still low from a recent illness and he was generally unimpressed with the world (fair play really). I remember wondering if we would ever have a true Christmas with him. One where he was fully engaged and happy.
Well that fear, that dreaded downward spiral. It didn’t happen. Little J still has minor regressions, but he is growing, he handles illness better than he ever has before and he is gaining more skills than he is losing. In fact, we have made it an entire winter without a hospital admission (I will mostly be found running around touching wooden items of furniture for the next hour). Mitochondrial disease is not completely ruled out and his mitochondrial DNA is being looked at, but the muscle biopsy was all clear. It is a very difficult condition to diagnose, but it is looking less and less likely in our case. It is looking like we are option number two – a condition so rare that no one knows what it is. But not mitochondrial. A year ago, I would have given absolutely anything to be able to say that. And now look at me having a strop over a toilet – time for a perspective slap me thinks.
This year will be different. I know it will. I can’t claim it will be perfect. There will be moments. Challenges. But, even if it is only for a few minutes, I know I will get to see my little boy smile and laugh. I will see him reach out for his carefully chosen presents and I will feel his weight rest against me as we sit on the sofa and watch some inane Christmas TV. And for that – I am so very lucky and so very blessed.
So I am determined to make this Christmas a very special one. The tinsel is shining, the fairy lights are twinkling. The wine is erm..mulling? And Scroge. He got left behind in the toilet.