Dont worry, be happy - feeling down as a Duchenne parent
I’ve always been a planner. It was almost like a competition with myself, how much can I physically fit into our ‘spare time’. Weekends away, friends to stay, planning for this, planning for that. I guess it’s something I have learned from my folks – they are great planners and fill their lives with exciting, lovely activities as a result.
So, since the kids arrived in our lives, 8 years ago, my planning has grown at an exponential rate, with ‘wider planning’ of things like; rare nights out, trips out as a family, trips out on Lex’s weekends at work, family parties, the odd holiday. And of course the ‘minute planning’ of everyday life.
Our planner was getting full, months in advance, which I recon is pretty normal for a highly sociable, fairly big family (2 adults, both full time working, 2 kids at school, 1 littler one..).
I find planning is a great way to prepare myself for things to come in life. If I know where I need to be, then everything will be OK! I can plan our lives to the n'th degree. Once you start down that path, you end up having everything set in stone, even things waaaay into the future. I let myself imagine the (then just the 2 boys') futures, wives or husbands, kids, what they might do for a job, hoping they will be happy. What we will be doing in our retirement, maybe a bit of travel, a big family home with a dog, sunday lunches with the extended family.... I could go on and on in the idyllic imaginations of the 'rose-tinted-glasses-wearing-pre-Duchenne' Mum that I was.
And then it hit.
The Duchenne. It threw our family life off course. No longer were we destined to travel down this "perfect" pathway. Someone flicked the switch on the railway track and we were off to Holland rather than Italy like everyone else. All the planning I had done, was going to have to change.
But then, I made the mistake. The mistake of planning for the Duchenne.
In the early days, I put myself there. The place newly diagnosed parents fear to go. The. Last. Day.
I put myself there because, at the time I felt that I needed to go there in order to work backwards, in order to cope. I forced myself to plan for the last breath, the last smile, would we be hugging, would we be holding hands, would it be peaceful? I felt that if I went there, I could armour myself because 'I've been to the depths and I coped, I really coped'. I would tell myself. Trying to convince myself that it helped, that it was my way of coping.
And you know what, it didn't help. It drove me crazy.
The armour I was putting up was preventing me from appreciating the now, today. I was so hell bent on planning for the worst that it eclipsed the best of the moment now.
It took a clinical psychologist 6 sessions to take my hand on a journey around my emotions to make me realise this. The journey Duchenne parents travel is tough, really tough. There is going to be sh*t, like our children getting their first wheelchair, coming off their feet, needing night ventilation, powerchairs etc. But planning for this, armouring yourself (or myself) does not make these things any easier when they happen. It detracts from the positive of what is going on today.
The laughter, the 'in' jokes, wrestling, singing, the sparkly blue eyes, the endless but sweet whispers of 'Mummy..?', fantastic friends, amazing family, extraordinary teachers, these are all things which are here and now. The Duchenne is there, but it can't take these amazing things away.
Its not going to help pre-empting Duchenne. You really can't. Every child is different. Every young person presents differently. Every adult lives their life differently. In exactly the same way as people who do not live with Duchenne live their lives differently. People who do not have Duchenne in their lives don't walk around planning for when something 'bad' might happen. So why should it help us as Duchenne families? It only stops us focusing on the great, beautifulness that is living today and in the best way we can.
In October 2017, 2 years after Samson's diagnosis, I broke. I snapped. I couldn't take it any more. I phoned our amazing GP and said I need help. I felt alone in my mind and felt that the world was caving in on me. All the planning for the worst had made me lose myself. The GP prescribed some meds which took the edge off the anxiety. I sought help from our psych team at Addenbrookes which was the best move ever. I saw an incredible clinical psychologist 6 times (and am due a follow up visit soon). She made me change my perspective on many things, but the most profound was what I explained above.
As Duchenne parents, we have to fight many battles to ensure our children and young people receive the very best standards of care. Often, us, as parents, forget ourselves. You are the glue that keeps your family functioning. Keeping yourself mentally healthy is crucial.
If you are feeling lost, anxious, down, even depressed and are reading this please seek help. Phone your GP. Contact your NeuroMuscular Care Advisor, or Consultant or even go directly to the Clinical Psychology team at your Paediatric department. Ask for help. Tell them what is going on and get yourself seen. When we feel down, we are much less likely to seek help because it goes against everything we are feeling. But please, take it as an order from me. Get help.
In my darkest days, I sought help and I will never regret it.
And please realise, you are not alone.