Saturday, 11 May 2013

What I Wish I Could Say

I am on page 32 of the 41 page application for Adam's Disability Living Allowance (DLA).  I have been working on this application for the last week, in and around college and family life.  This means that for an entire week, I have been describing Adam's disabilities and the effect they have on him and on us in minute detail.  It's far more than just the conditions he has but what this means for us and for him in terms of the care we give him, our many attempts to communicate with him, the constant supervision to prevent him injuring himself, the frustration he expresses and the tantrums he throws which regularly leave bruises and scratches on me.  I am describing every moment of Adam's life as a disabled child and my life as the parent of a disabled child.  To say this is hard would be like comparing climbing Everest to a Sunday afternoon stroll.

It is not hard to complete this application itself - time consuming and immensely detailed yes, but as I'm sure comes as no surprise, using words to express myself is not a challenge for me.  Words flow out of me very naturally; they always have.  What is hard about this application is that I spend my life trying to ensure that Adam is not defined by his disabilities, he as a small human person is more than a medical condition - or multiple conditions as the case may be.  But this application requires me to focus on Adam's limitations to such a extent that I am forced to face the fact that I spend my days compensating for Adam's limitations and instinctively adapting to the type of care I need to give him.  This application forces me to see how unusual these compensations are, even though they have become normal to me.  It forces me to realize that I have forgotten what "normal" actually is.  This application forces me to focus on Adam's disabilities to such an extent that it seems as though life contains no joy - and that of course is wrong.

The devoted Mama in me longs to explain that even though I have to give Adam a great deal more care than other parents have to give their children, he is still the absolute light of my life.

I long to tell them how beautiful his smile is or how he melts my heart when he giggles at me or touches my face in wonder.

I long to describe to them his utter delight when he is rolling around on my bed or stumbling and jumping on his big brother's trampoline.  

I long to tell them how incredibly proud of him I am when he learns a new skill - however small that skill may be - because I know full well how hard it is for him to learn anything at all.  

I long to tell them just how much praise and how many cuddles he gets when he turns to me in delight because he's learned a new Makaton sign and how he then repeats it over and over and over again to demonstrate that a small little light has turned on and he knows.

I long to let them into my world and show them that once the screaming, thrashing tantrums have subsided and he has exhausted himself into sleep, that his small little body is just as warm and cuddly as that of any other child and that as I press my lips gently to his forehead, I tell him I love him.

With all my heart, I long to tell them that no matter how much is "wrong" with my precious boy, that he is still precious and that I am absolutely devoted to him.  

I long to tell them that no amount of care is too much, no amount of time is too great to give him and that he will always have the very best I can give no matter what it costs me to give it.

I long to show them how it feels when I carry his small sleeping self up to his cot and he sleepily winds his arms around my neck and buries his face in my shoulder, contentedly letting out a small sigh that tells me he knows he is safe.  At the end of a long day which so often is filled with frustration and confusion, he knows he is safe in my arms - no price can ever be put on that simple fact.

But I know that I can't tell them any of these things because they're not interested and if I did, it could actually damage my claim.  If after all, I even hint at downplaying Adam's disabilities, needs or the care that he requires, then I risk being turned down as so many disabled people now are - despite having very real needs for help and support.

And so I keep my overwhelming love for my precious boy out of the application and share it here instead.  I need to because all too often this last week, I have been reduced to tears as the harsh descriptions of Adam's needs are committed to paper in black and white.  

When I am asked, as I am so often, Charlotte how do you do it?  How do you keep going, keep studying despite all the hours spent by day and night taking care of Adam?  The answer is absolutely and perfectly simple:

Love.