A very dark place

Below is a post I wrote for Leckey Design's new Firefly website. Thought I would pop it on my own blog for those of you who may not have got to read my words of wisdom or as I like to call it self-opinonated dribble. 

I've been writing this blog now since Zack was born.

It began as a way of me documenting his life, our life and all the emotion that travels with it. It also served to tell friends and family what he was up to and how he was doing.

It became clear that the blog also recruited readers that where very similar to our family. They too had fallen into a whole new world.

In thinking back to the beginning, I wonder what advice I would have liked to have heard. So forgive me this indulgence, but this is for all you newbies, I hope you find it useful.

Advice perhaps, or well meaning verse.

For whatever reason we choose to have a family I can guarantee that nine months of it will be spent (probably mainly by women but men too) imagining. Dreaming up little scenarios of your soon to be born child, what they will look like, what their little personalities will be like and getting giddy about all the adventures this new family will travel. It's like a glossy snapshot, idealised in your head, eager for it to be born into reality.

But what if that image doesn't come true? What if the change to your life is so traumatic and violent that it knocks you sideways?

For some families this is their reality. Some people, for whatever reason, go on to find that they are now parents to a child with a disability, labeled by society to have special needs.

Sometimes the diagnosis comes at birth. Sometimes it happens weeks or months later. And sadly, sometimes, it can happen to a child that was once living an ordinary life.

You suddenly find yourself in a very dark place. A lonely, unknown path and it can be extremely daunting. A path I found myself traveling having delivered my son Zack who was starved of oxygen at birth for eighteen minutes. This eighteen minutes resulted in my partner and I coming home with a baby that would need full time care for the rest of his life. Yet here I am four years later no longer afraid, no longer alone and with a new perspective on life that perhaps I would never have gained having lived my imagined life.

And this is what I know so far.

1. Fear and grief.

That's what you probably feel at first, fear. Fear of the unknown. Fear of how you will cope and fear of your new life. It's a scary time. You probably think why me, why my child? Life isn't meant to happen like this. For me it felt like someone had thrown me in a dark room shut the door and said there you go, find your way back to a normal existence. And you can find normality, it's very different to how you imagined, it takes time, but it is there.

Alongside all the rush of emotions I felt was also grief. Remember that picture that ran through my head for nine (well seven months, Zack was also premature) it had been destroyed. The child I imagined no longer existed and for that you have to allow yourself to grieve. The very best thing I did was to let myself feel loss for the child that could have been which perhaps (and it took time) allowed me to accept fully my wonderful son I have today.

2. Abandonment and support

Along with fear comes an overwhelming sense that the situation has happened to you and you alone. And in a need to quantify your emotions you start to search for others in your situation. First to find hope, to discover other stories like your own that give you a glimmer of a happy ending. Then when you do find them, you discover your tribe. A group of people that you probably didn't know existed before but they are there. The ones that have walked your road, are the branches you cling on to because they are the oracle, the people that have answers to things that may baffle you, worry you or quite frankly scare you half to death. Then you find the other new ones, the people like you, and you can at at last speak freely knowing that they just get it. The place that I found my tribe was the fabulous www.specialkidsintheuk.org to put it bluntly, they got me through the first year.

Slowly I found in my own local area there were other parents in my situation the one's that really did understand. I avoided other baby groups like the plague. To be honest I'm not one for baby meet ups and if that's what you like then go for it. But I knew that taking my not sitting, not eating baby to a session with lots of crawling, babbling bundles of joy would do me or Zack no good at all. For us it would merely shine a spotlight on the differences and what I needed at that time was to cocoon the two of us.

So whatever helps you, go out and find that support. Whether it's online or at a community baby group, find them and stick close by, they will be there in your darkest hours and share in your moments of joy.

3. Team Building

There are great doctors, there are good doctors and there are not so great doctors. At first I thought being a medical professional in whatever field from paediatrics, speech and language to physiotherapy, that they knew my son best.

Looking back I now know they didn't. I did. I was the expert. You will probably have all sorts of terminology thrown at you. You go home and google it and then that magnifies your already bubbling terror tenfold. Don't google. Trust your instincts. Find the professionals that you know you can work with. You need to build your team, we have one, it's called Team Zack, (original isn't it?)

You need to trust the people that have the medical expertise but ultimately you are the one in charge. My son has cerebral palsy, he is visually impaired, he can't eat so has a Mic-Key button, he is non-mobile. I was told what his life was likely to be like and yes on paper it is as the good doctors suggested. What they don't mention is the amazing things my son has accomplished. How he has learnt to communicate with us, his unusual and sometimes dark sense of humour and his ever increasing ability to surprise me.

So yes, medially they have training and experience but you have the inside knowledge. It might not seem like it at the beginning but that gut instinct is your strongest team player. Make sure it's always front and centre.

4. Therapy and a bit of acceptance

Aaaaaah therapy or the immediate search for a cure all. Like the googling of medical terminology another thing, that quite naturally you may try to do, is find some form of treatment or therapy that will eventually fix your child.

Sadly out in the big world wide web there are, I think, people that will quite happily take your money in return for promising massive changes to a severely disabled child. For some parents it can take some time to accept the situation. Everyone deals with things differently. For myself and my partner Dan it was pretty quick that we accepted our path in life. I think once you accept that you can't fix your child it gives you a clearer outlook on life. At the start you are overshadowed by naturally wanting to make things better, like any parent would want to do. And please, do not think that I am suggesting you give up (more on that later), I am not, I just think it is easier to move forward if you are able to accept the situation within which you live. But be kind to yourself. It can take a long time, it can be quick, but it will happen.

So do your research. I am a big advocate for therapy. I tried a couple of different places in the beginning and have now finally found one that seems to encompass the three major areas that my son needs encouragement with, that being physiotherapy, speech and language and independence. The therapy Zack undertakes is conductive education at the fabulous Legacy Rainbow House.

5. Hope

My biggest piece of advice to parents would be, never give up. Don't lie down. Don't give up on your child. You are their voice, their advocate and the means by which they will experience the world and be accepted into society.

Despite being told my child will be and I quote seriously disabled (this was said to me by a consultant twice in one sentence just in case I hadn't realised) I made every effort with Zack and still do to help him make sense of his world.

Hope is very powerful and I have hope in abundance. Realistic hope. I mean I don't think Zack will ever walk or talk, (however having said that over Christmas he did some stepping in a walking frame and distinctly said yes to me, several times). My realistic hope is that Zack will be able to do much more than you would assume if you read about his condition on paper. And that is what he is doing.

Don't give up.

There you go some advice from someone down the road. I hope it was helpful, not presumptuous or upsetting. We are all different and deal with things in our own way and this is just me and who we are. And whoever you may be and whatever road you are on I want to say one last thing, you are not alone, be brave, be strong and enjoy the ride.