Moreena asked me ages ago what I wish that my parents had known about having a child with a disbility when I was growing up. It's taken some time to come up with as it needed some thought and I would be interested to hear comments. [as an aside, I mentioned the question to my mum and she requested we "not go there" so I don't have her take on it]
I’ve had cerebral palsy (CP) for all of my life and have always been a wheelchair user to a certain extent. My journey with cp has been a difficult one and I don’t think I’ve fully reached my destination of “acceptance, Holland” yet… I’m a lot closer than I was even one year ago and I do spend a lot of time there but I do still occasionally spend sometime in “Longing, outside looking in, outskirts of Italy, border of Holland”… Longing is a place where you expect to find those who have just been diagnosed or had their child diagnosed with a disability or serious health problem.
Sometimes though, those of us years past diagnosis and even people like me who have never known anything other than life in Holland can be found there, sitting in our wheelchairs looking over at the so called “normal” people, the Italians and feeling wistful, wishing we could be like them. Longing isn’t a very nice place though… it doesn’t have the Rembrandts, the windmills and the tulips of Holland and it doesn’t have the children running and jumping and living their lives free of medical hardship which Italy does. It’s just a dark place, an empty cold place which you must move on from in order to flourish and survive. You can always return for a brief visit when things get tough if you must but it’s not the place to set up camp and live forever.
However I don’t expect to ever fully arrive there over in Acceptance, Holland to stay… just like happiness, it’s more of a journey than a destination I think.
I don’t have a problem with my disability, many years have passed since I was the shy girl who hated her “problem” and the wheelchair which represented her “cage”. I do still have moments of I hate this… but now they are usually very short and quickly become replaced by “it’s not the cp that I hate it’s the problems that living in this world causes.”
There’s a lot I could wish I had known a lot younger in life… there are things I *do* wish I had known when I was younger which would have made things a lot easier for me and taken a way a lot of my tears and traumas. I was asked what I wished my parents had known when I was younger… That was a question which took quite a bit of thought.
After some thought this is what I have decided. For me, I think I wish they could have known that what they were doing was right... that forcing me to be independent and do things for myself even when it was a struggle and I screamed and cried and said I hated them was a very good thing because it made me who I am today. If I could go back as I am now and say one thing to my parents when I was younger it would be "thank you"
I think they probably knew that it was the right thing to do otherwise they wouldn't have done it but not only did they have to deal with my reactions they had to deal with others too.
And as I’ve learnt throughout my life dealing with well meaning, pitying or even disapproving strangers can make the journey with cp so much harder.
When I was younger I used to be able to walk a lot more (it’s not uncommon for people with cp to lose function when they have the growth spurt in their teenage years) and used to walk more than not. I was walking around tescos with my mum and fell. Because of the way I walk it is extremely obvious that I am disabled – my upper body “swings” from side to side with each step.
So anyway I’d been walking in the supermarket and fallen. I had recently learnt how to get myself up when I fell and it was a skill I was very proud of. So proud that when my then physiotherapist came to see my at nursery right after I learnt it I went “look what I can do” and threw myself on the floor so she could see me get myself up off of the floor. I digress…
But then, as now, when I fell in a “new” place I was a bit unsure of what to do. We had also learnt as I think most parents do that its better not to make a fuss if I fell because it would make things worse. So she just went “go on then, get yourself up” and up I got.
Standing near to us was a woman from the salvation army. She obviously felt very sorry for me and began to pray for the “poor handicapped girl”. Whilst I have no problems with the concept of prayer and religion I have a huge issue with this. Praying for someone you do not know in the middle of the supermarket just because you feel sorry for them and feel that they need better/different treatment or surroundings is plain and simple wrong. There is such a thing as silent prayer but what she did is pray out loud for me which meant that everyone heard.
My mum has since said that it made her feel as though this woman thought that she was a terrible mother just for doing something that she [my mum] knew was best for me. To give an idea of how much this must have affected my parents – I probably was only five or so when this happened and have no clear recollection of this happening. But this is an incident which has been repeatedly mentioned at various times ever since that I now remember it
I think now so many years have passed since this incident that it no longer bothers any of us but at the time it obviously did and if the girl I am now possessed a time-turner like they have in Harry Potter and could go back in time to see my mum and me as I was then I would have to say “keep going, it must be tough but look at who that little girl clinging to you hand becomes – I am who she becomes and if it wasn’t for all the struggles, all the tough times, all the times you did something and then wished you didn’t have to – I wouldn’t be who I am now.
That’s not to say that I think my parents did everything right. I can think of at least one incident where I think they maybe did wrong. This was when my brother who is just under four years younger than me was allowed to do something for the first time – something I had not been allowed to do. I was about 13, maybe 14
But I don’t see how they could have done it any differently and to be honest I think now looking back on it with the perspective that the luxury of being a decade past the event brings, I needed that to happen.
I kicked to the best of my ability, I screamed and I well and truly made it known that I thought this was the most unfair thing ever. But still my brother was to go and I wasn’t.
Some comment I made showed my parents that I was under the mistaken impression that if I did enough physio I would be cured and would no longer be disabled. We talked and my mum and I cried together whilst she explained that she would do anything to take my cp away from me but it was never going to happen.
And yes, I do think that perhaps allowing my brother to go and making me to stay when I knew I was the oldest and was very proud of that fact was a little harsh. But that was a situation which was always going to be tricky. Either me or my brother were always going to be upset by the decision.
As I didn’t get to go I hurt badly on that day. But I also learned a very important life lesson and started moving away from my spot in Longing, and making those difficult first few steps along the rocky and somewhat winding road towards Acceptance, Holland – the one I still travel now.
So if I could tell the parents of the newly diagnosed and growing up Emma one thing. It would be do what you think is right, follow your hearts and do your best.
Even if your child treats you like it’s the worst thing you could do for them, if family disagree and strangers disapprove… they are your child and you have to do what is right for you and for them. And when they’re grown up and can look back on events with 10, 15 or even 18 years since they happened. They will probably thank you. Because good times, bad times, painful times, happy times, without them and more importantly without their parents love and support they wouldn’t be who they are. The disability or illness which they have isn’t what defines them and makes the person “Emma” it’s the experiences, and most importantly the nurturing they have received.