Our journey with our son has been a tough one, I cannot seem to put what we have been through into words without sounding cliché or lessening the impact of what raising a child with disabilities has had on our life. The loneliness and grief. The strength and survival. I believe that without having experienced this for yourself it would be hard for anyone to truly understand.
The best things that come to mind, are not really appropriate to be put into words….but something my mother said to me recently, (and obviously I have heard before) just about covers it…. “It is a cruel world”.
There are though scenario’s around that attempt to describe the journey we face each day.
I don’t know how other mum’s of children with additional needs feel, but I was never all that impressed with “Welcome to Holland” by Emily Perl Kingsley, a short prose piece often given to parents with children with additional needs that describes a scenario of an intended a holiday in Italy but landing in Holland; an attempt to describe the new world we find ourselves in.
But to me its been more than arriving in a different county, to me the first few weeks of having my son and being told his diagnosis was like landing on a different planet.
There is certainly some merit to the scenarios comparison, but when I landed ‘in Holland’ I was not just arriving in a place where I didn’t understand the language, I landed in a place where the first thing that happened to me was that I was mugged of everything, then stabbed several times in the chest. To top that off when I dragged myself injured and bleeding onto the tour bus, I realised that everyone else on the tour continued along on their merry way, oblivious to my misfortunes. We 'checked into our hotel' and my husband and I were told to be prepared for the entire planet to be ripped out from under us, dragging our family and close friends with us; we were told our son may die.
Thankfully his life has not played out according to his original prognosis, but his life has certainly been far from easy or typical.
Through everything though we have watched our son grow(although very slowly) and develop and come to find joy and wonderment in the smallest of small things in his life; things that most parents would miss and never even notice, but we would be dancing on the clouds.
We didn’t chose to be here, we weren’t chosen to be here, we are not hero’s, we are just doing what we have to do, and trying do it in the best way we can…as another of my good friend says “Disability just knocked on my door, not yours”.
Along my journey I have come to know a group of women(online and in real life) who not only shared my journey with children of their own with varying degree’s of additional needs, but whom also shared my passion for Attachment Parenting.
We discussed a scenario that we felt best described the emotional side of our new journey. The part of our journey that involves the loss of friends, and the lack of support from the outside world. The grief, but also then the realisation of the amazing new joys our new community can bring us.
Here is my interpretation;
The Village
Imagine for a moment that you are an integral member of a group of villagers, you play your part well, you do all you can for your village, you keep your head up high, you feel a great sense of pride in your village, the other villagers rely on your for your contribution, and you intern rely on them for there’s. You have been a member of this village for as long as you know, you have of course had some rough times and you don’t always agree with everyone in the village but generally everything is peaceful and you are grateful for what you have and where you are.
It is a nomadic Village and ofcourse each season change you all move on to the next ‘nesting’ grounds. Only this one particular morning you wake to find that somehow you missed the move, you look around you and EVERYTHING is gone, you are lying in the long grass with only what you are wearing and a few small token items(memories of times past). Its hard to know that you were left behind. You wonder why? Was it something you did? Did the village leave you on purpose or did they just forget you even existed? Or maybe for some reason you were just too hard for them? You grieve a lot, you know you will never catch up, not on your own. You feel alone, very alone. For a long time you sit there, feeling sorry for yourself. Wishing things were different, thinking back and wondering what you could have done to make sure you weren’t left behind. How if you had done this or that, things might be different.
After you have been sitting for what seems a very long time you decide to stand up and brush yourself off and see what you can do to make the best of the situation. As you stand up you see over the tall grass you are not the only one who got left behind. There are a couple of other villages who where also left behind. Although they may not have been in your circle in the village you are all immediately drawn to each other. The feeling of isolation is reduced, although the grief and hurt of being left behind is still there, you never wish being left behind on anyone you take solace in the fact that you have some support.
As you get to know the other villagers you realize there was so much more to them than you ever imagined. You all begin to bind and with new found strength, begin a little village of your own. Your new village is also nomadic, and once you have all found the strength you too move through different nesting grounds.
Along your travels you find other villagers left behind from different tribes, and you welcome them into your village, you listen to their stories of grief and abandonment, you share tears and also joys in your new life, you help to lift each other up.
To everyone’s surprise you also come across your old village along the way. This is bitter sweet, you know you don’t really belong there anymore and are happy with your new village, but there is still that ache to be part of it, and you really miss a lot of your friends.
You find some members of your old village have missed you dearly, you know they never wanted you to be left behind in the first place, and they have grieved for you too, they just didn’t know what to do for you.
Some member’s(even the ones you thought were your friends) didn’t even realise you had been left behind.
And some members surprise you; they know they don’t know the half of the pain you experience, but they have empathy and realise how much you need them. They are the ones who see you for who you are in your new village, but who help to keep you connected in someway to your old one, even as you move around in different directions.
As time passes the village grows and strengthens. Of course its not all flowers and sunshine, and different members of the village deal with their grief in their own ways, and some are affected more than others, but in times of adversity the Villages come together and give each other the courage and desire to go on.
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This scenario works in a “get used to it” kind of way.
There is no point in sitting around wishing we weren't in this situation.
Another scenario I heard from a good friend was that there are two islands, the party island and the deserted island….unfortunately having a child with disabilities puts us on the deserted one. We can wave to the people on the party island, and they can wave back to us, but we cant join the party, and they cant really understand what its like for us.
And the thing we know is that no matter how much we try to appreciate where we are, is that no-one is saying "wouldn't it be great to live on that deserted island, in that village, or to visit 'Holland'".
Because aside from this emotional journey many of us deal with so much more; the loss of dreams and hopes for our child/ren, the fear of wether to have more children or not, the constant onslaught of appointments with specialist, therapists, social workers. The unwanted advice and ‘well meaning’ comments from everyone who looks your way, the discrimination and abuse and repulsive things people say. Hospital stays, surgeries and trips to ER, test after test after test. Feeding Buttons, tubes, trachs, stoma’s, central lines. Wheelchairs, afo’s, walking and lifting aids. Adaption’s to car’s and houses to suit specialist equipment needs. Re-moraganing/selling homes to pay for medication, equipment, education assistance, life saving surgery to name a just a few. And who really wants to face all that?
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