Flashes of Magic

When your son has a progressive disease that will take away his mobility bit by bit and will dramatically shorten his life, one of the messages you hear over and over again from everyone around you is “make memories while you can”.

And that’s all very well – in fact it’s a very good point. But it actually puts huge pressure on a family to make life as perfect as it can possibly be, to make every day like an Instagram picture, to visit everything and do everything RIGHT NOW just in case. And that’s alongside trying very hard not to think about the “just in case” that’s making you do it.

So when COVID-19 forced into lockdown, my first response was to feel that we are being robbed of the opportunities we have to make memories with our son while we can, that while everything may well be “back to normal” in a few months’ time, nothing can replace the time we will lose, all the plans we had. And although clearly that’s true for everyone, the feeling is undoubtably more urgent when we know that Duchenne will relentlessly continue on its path even as the world stops.

These last few weeks have been challenging.

Two young children, one of whom has a complex medical condition as well as Autism, Daddy trying to work in our bedroom with constant interruptions. Sebastian has full time support at school and multiple professionals involved in his care, yet suddenly I am trying to provide for all of his needs while also parenting him and his brother.

There are many people in the same boat and even as I write this, I am painfully aware that we are able to stay safely at home through this – we are definitely the lucky ones.  

In amongst the co-existing chaos and monotony, there are flashes of magic. There is laughter, there is joy and there are amazing moments that will be imprinted on my memory forever. I hope they will stay with my children too.

Perhaps we don’t need to work so hard to create those memories.

Perhaps we don’t need to spend huge amounts of money, to set up a picture-perfect scenario, a once in a lifetime opportunity. Perhaps we don’t need to feel failure when those days that we have spent so much time planning don’t live up to what we wanted them to, just as our Pinterest crafts and colour coded homeschool timetables don’t last beyond 9 am.

Because we are the same 4 people, the same family with the same flaws, the same frustrations and the same challenges. That’s true in Disneyland just as it is in our back garden. But crucially, the same magic will be there too. And that’s what memories are really made of.

He’s the Expert

As the realisation dawned about the seriousness of the pandemic situation, which arguably I had been resisting accepting for a while, I felt panic engulf me. Having been relatively laid back about it all and determined to continue as normal, it quickly became clear that due to Sebastian’s Duchenne diagnosis plus the long-term steroid mediation he is on, he is considered “high risk’. And that was it – no more school for him or his brother, his dad working from home, no leaving the house for at least 12 weeks.

While I panicked for them and the loss of their “normal”, of their school lives, learning, seeing friends and social development, if I am very honest a lot of the panic was for me.

Panic came from a loss of control, of the routine that keeps me coping and a fear of a total lack of ability to cope with it all.

It is losing the routine which has been particularly difficult for me. Having been a stay at home mum since Sebastian was born nearly 6 years ago, I have carefully developed my own “timetable” for my week which, while seeming to be pretty laid back, I am pretty attached to. I hadn’t realised until now how crucial this has been to my coping mechanisms after Sebastian’s diagnosis. Control in a world over which I have so little.

Never has that been truer than right now. The irony of needing my coping strategies to deal with a situation that in itself means that I am unable to use my coping strategies.  

Sebastian, with an ASD diagnosis alongside his Duchenne, needs routine. He thrives on it. I had no idea how he was going to begin to compute the concept of not being at school, or not being able to leave the house to do his favourite things, of his dad working from home, of not having contact with his 1-1 TA and all of the other amazing people who offer him support and help him to live as well as he can.

I have watched him over the last few weeks. He rarely identifies or expresses much emotion and it is difficult to know how much he understands about what is going on. But I have observed in total awe. Within the basic structure I try to give our days, he plays familiar and repetitive games. His imaginative play going into patterns some of which he had previously left behind. His bunny comfort blanket is never far away and used in play far more than it has been recently.

Almost every afternoon we make a tent in our living room. It has to be made in the same way every time. We play the same scenarios. And then often we go inside the tent, with his duvet and his cuddly bunny and snuggle up and watch telly. The same telly. Sometimes we don’t even go inside. But it’s there.

I watch Sebastian soothe himself. Not with talking about how he feels, not with tears, not with cuddles and a conventional requests for reassurance as his brother does, but with the comfort of repetition, of the familiar, of the construction of some control in the absence of any. Of making his immediate world safe and secure.

For him, I think the world is often overwhelming, physically challenging, frightening and hard to understand.

That in essence is how so many of us feel right now. Sebastian has already developed coping mechanisms for these feelings in ways that the rest of us never have.

His ability to find order in the chaos, to find the safe places and retreat into them when he needs to is a skill not to be underestimated. We all need it, perhaps more than we realised. He is the expert. He is, as always, teaching me.

And when this is all over, the memories of snuggling in the living room under a bedsheet strung up between two chairs will be the ones I cherish. Because it made me feel safe when I was scared.

Finding the Rainbows

We’ve practiced finding rainbows.

For all of us in this community, COVID-19 and the response to it brings many challenges. We rely on services, on medical appointments, on respite, on school and perhaps most importantly on the carefully constructed set of coping mechanisms that have seen us through moments we thought would bring us down. They might not be sophisticated or complicated – for me they consist of running while ranting to my good friends – releasing both endorphins and pent up emotion, of popping to a good friend for a coffee and, perhaps the one I am missing the most, an hour to myself just to remember who I am. I know that there are so many of us who feel that the rug on which we so delicately balance has been well and truly pulled from under us.

But here’s the thing. We’ve searched for rainbows before.

I think many families of children with additional needs, a life limiting diagnosis, a devastating moment in the lives of everyone they know and love will have felt a sense of recognition over the last few weeks. I am not likening a diagnosis of any kind to the worldwide devastation of a pandemic, I’m really not. I am just saying that I have felt the echoes. And with those echoes comes the knowledge that we will get to the other side.

We know how it feels when life falls apart overnight. We know what it is to feel that the world has changed beyond recognition and that it no longer makes sense. We know isolation, all-encompassing fear and total darkness. We know not understanding how to negotiate a life that feels impossible that somehow has become ours. We know how surreal it is when something we never thought would happen is our new reality. We know, realising that we will never be the same again. We know the endless trawling of Google to find answers that don’t exist. We know being thrust into a world with new rules that we don’t understand, a new language that we’ve never heard.

And then we know learning how to live again.

We know learning how to find the moments that bring us joy. We know looking for the light in the darkness, that it might look different from the light we had before but that, just maybe, it’s stronger. We know working out what hope now means and searching for it.

In short, we’ve got this. We’re the experts here. Our lives are about finding the rainbows and holding on tight.

Find your sparkle

Recently I sent a picture to one of my oldest friends. It was a photo of me dancing at my brother’s wedding.

A wedding that had been very difficult for me to attend for many complicated reasons.

She told me how nice it was to see me with a sparkle in my eyes. It made me think a lot.

When you become a parent, it changes you in ways you wouldn’t have imagined. It also changes your lifestyle.

A night out requires meticulous planning and hangovers are almost not worth it when you have to watch Peppa Pig at 6 am the next day. You exchange dancing and girls nights for evenings on the sofa with a baby monitor and a takeaway.

We all know that before we start, and at least from my point of view it is so worth it that I barely think about it.

I very rarely miss my life pre-children.

It is true though that your identity alters along the way and you become someone’s mother first.

And while that is the most amazing thing in the world, it is easy to forget that you were a person just by yourself before, that you are valid and important as you are.

When your child is diagnosed with a degenerative, life limiting disease, it changes you in ways that having children hadn’t. It is like being a grown up on a whole other scale. A Level Adulting.

And that change on top of the average just-having-children change can mean that identity is hard to find.

It is buried under grief, re-learning how to think about life, trying to become everything your child now needs you to be, negotiating a new an overwhelming timetable of appointments and practical responsibilities, and a whole host of other things that come with this kind of diagnosis.

It changes friendships and relationships. It can be all-consuming. It can leave fear that the person who existed before it all has disappeared.

When that photo was taken, I was having fun. Just me. It sounds like a simple thing but it isn’t.

It might sound like a selfish thing and perhaps it is. But it is also powerful. It doesn’t need to be a long time, it doesn’t need to happen often. It wasn’t about dancing or drinking cocktails.

It was about just having a few hours where I let go of the things I carry, the things that have changed me.

It was about realising that I am still in there, that my sparkle hasn’t disappeared for good, it’s just been a little dampened.

So find your sparkle again. Because it’s ok to be you sometimes.

It’s ok to put it all down for an hour or two.

There’s just a chance that it’ll feel a little lighter when you pick it up.

Letting Go

We recently moved house. Not because we wanted to or even because we had found somewhere else to live.

We moved because my 5 year old has Duchenne Muscular Dystrophy. This means that although he is currently mobile, he will become fully wheelchair dependent over the next few years and loose upper body function after that.

Somewhat ironically, 2 months before he was born, we bought a cottage style house for our future family that couldn’t have been less able to be adapted for his needs .

When he was diagnosed at 2 and a half, we knew we couldn’t stay.

I am going to be honest and say that leaving our house was one of the things I have found most emotionally challenging since Sebastian’s diagnosis.

There are so many complicated reasons for this, the biggest of these being a grief for the loss of the life I had planned, the future I had thought about without even knowing.

Moving out of our home was a very physical manifestation of all everything that Duchenne has changed. It made me question the progress I have made towards acceptance on this journey. It reminded me that grief is not a linear process.

It reminded me of how very frustrating that fact is.

But we have now moved into rented accommodation while we look for our future family home.

I don’t feel settled and I am desperate to find the right place. But I do feel different. The complexity and depth of my reaction to moving has been met by an equal relief in letting go.

It may just have been a house but letting it go actually meant letting go of the life I thought I had. And is has surprised me to learn that there is freedom in that.

I think it caused me so much pain because I fought it so hard.

There are so many times since Sebastian’s diagnosis when all I have wanted to do is close my eyes and go back to life before it happened.

Somehow, moving out of the house we chose before Duchenne means that there is no way back, it means this really is our life now.

And in letting those dreams go, there is more room for the new ones that really matter. And for the joy they will bring.

Why I’m running a marathon

When my now 5 year old was diagnosed with Duchene Muscular Dystrophy, a progressive muscle wasting disease ages 2.5 years old, my relentless late night googling lead me to various fundraising pages based on doing incredible things to raise money for the research and awareness around the disease.

Overwhelmingly, these fundraising challenges were based on physical activity.

For a long time, I found myself struggling to understand this.

It seemed almost in bad taste to raise money for a progressive muscle wasting condition by doing the very things that are impossible to do if you have a progressive muscle wasting condition.

And then I started to run. I set myself one of the very challenges that I had felt so uncomfortable with just a few months previously.

I wanted to run a half marathon and I wanted to do it to raise money for Action Duchenne, the charity who have supported us since Sebastian’s diagnosis.

Since then I have run another half marathon and am due to run my first full marathon in April this year.

Why? Because instead of being in bad taste, I think every single time I run that I have a body that works. I feel my muscles work and ache and recover and get stronger. I am conscious of the complex biology that allows by body to train.

It might not make sense, but acknowledging this is a way to process the ongoing grief I feel that my son’s body does not work as it should, that his muscles don’t repair themselves, that they get weaker rather than stronger, that he will never feel both the freedom and the achievement that comes from physically training your body.

I run to pay homage to the fact that my son never will. It is a very physical manifestation of a very physical grief.

Not only this, but it gives me a way of gaining control of a situation I which I so often feel entirely helpless. I can’t fix Duchenne, I can’t make any of it go away.

So I use the frustration and the anger and the sadness to fuel the runs I do, to make me feel that I am doing something rather than nothing.

I know that the money I raise is simply a drop in the ocean of the Goliath sized problem, but it is MY drop in the ocean, my David sized rebellion.

So running a marathon to raise money for Duchenne is not in any way altruistic. It has become part of my way of coping, of understanding the way I feel.

It’s not, as I assumed in my first desperation filled google searches, a form of denial.

I am not running away from Duchenne as I pound my way round, as I push my body harder than I think I can.

I am running towards my biggest fears and the sadness underneath them, allowing both my brain and my body to hear them.

Last years version is enough

I struggle with New Year as a celebration.

Don’t get me wrong, I like a glass (or two!) of bubbles as much as the next person and often more than them. But living alongside a progressive disease like Duchenne means living day to day.

It’s tough to think too much about the future, and in many ways it is tough to look back too much too.

My survival, and it’s been a big learning curve, is based on trying to live in the present. Occasions that bring both future and past into sharp focus bring unwanted sadness and fear.

It’s also the “new year, new you” bit that I find hard.

For many reasons, 2019 was a hard one. I did everything I could to keep myself going.

I think many of us live at the limit of our coping capacity every day and personally I have to work hard to forgive myself for the many, many times where I feel I should be doing it better, working harder, finding better solutions, being a better mum, carer, wife.

When it gets to New Year, the pressure is on to think of all the ways you can improve yourself, add things to the list of things you should be doing.

It plays on all my insecurities, makes me list all the things I need to do better.

Basically, I feel I need to add things to my “should” list, which frankly is long enough.

When Sebastian’s diagnosis came along, so may things were added to my role as his mother that I often feel overwhelmed and as though I’m not up to the job. And suddenly everyone is talking about eating cleaner, exercising more, improving their lives, working out how to be a better version of themselves.

And I forget that I have been trying my very best, doing everything I am capable of, and that maybe, just maybe that’s enough.

So here’s what I want to say. This year’s you doesn’t have to be thinner, fitter, better, more patient, a better spouse, a better parent.

You don’t have to take on new challenges and you don’t have to feel like you need a personal overhaul for the coming 12 months.

Because all of us are doing the very best we can.

I don’t mean stop trying. But I do mean don’t add things on to the reasons that you’re not good enough. You are enough.

Perfection is unachievable, even on the 1st of January.

Just you doing your best is enough.

Refilling the empty cup…

So many people have talked to me about self care over the past three years.

The analogy of the empty cup has been used a number of times.

I am sure I am not alone in finding both the concept and the practicality of self care a challenge.

Contrary to popular belief, it is possible to carry on and on pouring from that cup.

There have been times in the last three years when I know that if I stopped and put everything down to think about what I needed, I wouldn’t have been able to pick it all up and start again.

So it is possible. But it’s not a recipe for happiness.

A long bath, a massage, a spa trip, a glass (or two) of wine with friends, a run, a swim, a trip to the cinema, a long chat to a good friend, a cup of coffee looking out into the garden, 20 minutes playing the piano.

All examples of ways to take care of myself, of giving myself a physical or mental boost to enable me to better take care of those around me.

I am lucky that there are lots of things that I know help me to feel better.

But while these all sound like textbook examples of self care, it is the bit underneath it all that I find very difficult.

I find it hard to value myself enough to do it. I find it difficult to believe I deserve the investment in either money, time or effort.

Something hardwired in me, and I believe in many of us, feels that my value is in the care I give to others.

Having a child with additional needs has only compounded that.

I know that I need to keep myself well in order to do that, but trying to make that ok in my head still takes work.

It also takes acknowledgment of the need, which is more complicated than it sounds.

It means accepting that there are things about my life that mean time out from being a parent and a carer is important.

And that means accepting that Duchenne has changed our lives, has changed my role, my responsibilities, the level of anxiety I live with, the things that take up my time.

It means acknowledging not just the physical but the emotional toll of endless hospital appointments, of the huge impact of incorporating a disease like Duchenne into our day to day lives.

I have a need to have it all together all the time, to present myself to others as being consistently positive.

For me, self care is less about things I can do for myself and more about getting rid of the “should” from the way I talk to myself.

It means letting myself off the hook when I feel overwhelmed, not feeling that I have failed when I need an hour to cry before I pick myself up again.

It means not feeling that I “should” be coping better, doing more, being more positive. It means not feeling guilt for sometimes needing an identity beyond a caregiver.

Self care literally means caring for the person I really am rather than the person I feel I should be.

Caring for myself not in a practical way but in an emotional one. It means getting rid of the voice in my head telling me I should be doing it better. It means believing I deserve care too.

While the massages and cups of coffee are good, the cup doesn’t refill without the bit underneath.

Can I join your club?

On the 15th of November, I went to a conference all about Duchenne Muscular Dystrophy run by Action Duchenne, a charity who have offered me a huge amount of support since Sebastian’s diagnosis.

I spent the weekend attending sessions about every aspect of Duchenne, from physio demonstrations, advice on housing adaptations to a session about the affect on healthy siblings.

Before Sebastian’s diagnosis if someone else going through this had told me they were doing this, what would my impressions been? A weekend of having the diagnosis thrown in my face? A weekend of grief stricken parents crying? A confirmation of everything that is awful about Duchenne.

My feelings now? I love it. And here’s why.

When Sebastian was born, a slight paranoia I had about feeling lost and lonely and spending my days alone with a crying baby meant that instead I threw myself into baby groups, baby massage, baby swimming classes. I had done NCT classes.

I was very lucky that while many struggle with those early days, I finally felt like I had found who I was meant to be.

Not in the baby groups – let’s be honest, no one find themselves by awkwardly singing nursery rhymes with people they barely know to babies who are too little to care.

But in everything motherhood gave me. I believe that my happiness lead me build a strong network of fellow mummies.

And I’m not going to lie, the nursery rhymes may not have floated my boat but there is little doubt that the shared experiences of early motherhood, with its sleepless nights and life changing love, were powerful.

Two and a half years in, pregnant with number two as many of us were, Sebastian’s diagnosis pushed me out of a club of which I had so fiercely loved being a part.

That isn’t because I am no longer welcome. To this day, some of those people count among my closest friends.

In fact I could not be more welcome, yet at the same time I no longer quite fit. My world turned upside down and it can never be the same.

However hard I try to right it, it will always be off-kilter with the one I knew and I will always be off-kilter with the person I was.

Experiences are not shared as they once were and our journeys which started off in parallel are on very difference courses. I am not ashamed to say that I still miss that sense of belonging.

So rather than it being morbid or negative to spend the weekend with Duchenne as my focus, the opposite is true.

The power in that shared experience is multiplied and magnified.

Perhaps that’s because we all grieve it in our day to day lives and crave that sense of unspoken understanding, I will not have to explain the burden I carry.

It will be acknowledged without the need for words. I can share my life with Duchenne in all it is rather than feeling that it should be minimised, squashed into a corner.

I can let my brave face go. And there won’t be any nursery rhymes.

While the knowledge I gain from the sessions I attended will give me so much to take forward into my life, the true power is to be with people who understand the life altering moment that my son was diagnosed with DMD.

It is to know that there is still a club out there that I belong to.