So Iv been mulling this post over for a while, I’ve been wanting to put these thoughts to words but have always held back, I wasn’t sure if I should but this is my blog and I’ll cry if I want to. Essentially it’s my space to do with what I want so here goes.
These days the media aren’t afraid to portray the disabled, whether it be through programmes such as the undateables (a sensitive and debatable programme to many) children in need, your average channel 5 documentary but what I have noticed when watching these is they don’t seem to be an accurate representation of life ‘as is’, at least not for everyone. They do exhibit the trials and tribulations of everyday life for the person in question and the high and lows but there is another part, a part that is rarely spoken about, and that, is everybody else. Admittedly the role of carer is starting to be recognised, especially that of young carer and there are a lot of brilliant support groups and charities out there aimed at helping carers. But for the most part there is more to having a disabled child than we see. Having a disabled child affects the whole family. We are just wary to admit it, it doesnt after all feel right to even hint toward a moan when there is someone much worse off than you, I know this on a very personal level.
My younger brother James was born with severe brain damage, he has, from birth, been severely disabled. He is now 25 years old and requires full time care, he needs somebody with him 24 hours a day to cook, clean, guide, take him out, to basically do everything. He is the mental age of a 1 year old, in a mans body. Growing up, I never knew any different, he was my brother and his disability was nothing to me – I mean that with love, I mean that it was normal. Even as I started going to friends houses and met their siblings it did not occur to me that there was anything different. But there was. As I got older and I’m talking my late teens/early twenties I really started to appreciate just what it meant. It ended up having a profound effect on me, eventually.
His disability was not known at birth. It was as he grew that alarm bells started ring. He slept a lot and I mean ALOT, once he slept 17 hours without waking for a feed, ring a ding ding goes that alarm bell. He didn’t meet milestones, he couldn’t sit when he ‘should’ or smile when he ‘should’ then one day he had a seizure, not a febrile one but an unexplainable seizure. He was months old. It started to become apparent that something wasn’t right. As a parent I look back now and think how scary this time must have been, the unknown, the worry – it must have been consuming. Following a plethora of test on James, my mum and my dad, genetics, disease and any form of ‘illness’ were all ruled out. He had a very quick (30 minutes from start to finish quick) birth, he was born in an understaffed hospital in the early hours of a Sunday morning, he was blue at birth and the cord was round his neck. He was diagnosed with newborn asphyxia.
As mums we read and write (I certainly do) a magnitude of blogs about how hard it is raising our babies, and it is! It has however occurred to me of late that my mum raised a baby for 18 years. He always needed her the way my babies need me now. But he grew, he became harder to lift, harder to control, harder to please but he still needed her. His needs started to outweigh her needs. As the years went by, friends drifted away and her focus of looking after James took away her focus from looking after herself. It starts with missing hair appointments, social occasions, parents evenings but it grows it becomes dental appointments, then doctors appointment and suddenly things get serious. To complicate matters, she had a third child, my sister. My sister also struggles with disability. She is physically able but she is socially and mentally disable.
Since becoming a mum I am so acutely aware of how hard this must have been for my mum not just physically but the mental anguish must have been immeasurable. She is now just over 50 and has had two heart attacks and a whole host of medical complaints I will not list, she is unwell, the sad irony is she is now the one who needs care. I have little doubt in my mind that this was born out of the years of putting her children first. Of taking care of their every need, day after day year after year before her own. As parents we all do this, it is in our nature, but for most of us our children grow, we take delight in watching them achieve their milestones, when they learn to do things for themselves and our hearts explode when they voluntarily cuddle us. But for many family members of the disabled this simply does not happen, you do not witness the excitement of Christmas or holidays, you don’t get that affection or, God forbid, that freedom that comes with a growing offspring but they dare not moan, for they are able.
I have the greatest of respect for all mum’s doing their best by their children and this isn’t a belittling of motherhood (far from it), nor is it a pity party (even further from it). I am simply tilting my hat, giving an acknowledging nod and screaming at the top of my lungs to all those who have or are living with and raising children/adults with disability. You have an often incomprehensible and thankless job, you have an unwavering love and you deserve the utmost of respect. Our country quite literally needs people like you. You endure so much and it is ok to find it hard, to need to vent, to look at other families and think what if? I know this post had been largely centered on my mum but it is not just mums and dads to whom the above is applicable, but siblings, grandparents, aunts, uncles, step parents, everyone is effected, everyone has a part to play and everyone is allowed a time not to be ok even though they are able, I say this from experience.
If you can relate to any of the above there are places offering help and support, here are just a couple of national links that may help point you in the right direction. Alternatively I find a good place to start for local support groups is your local authority.