ALS is a terrifying disease, no doubt about it. And there’s equally no doubt that the current viral #icebucketchallenge has caught public attention and is bringing in TONNES of much-needed money, and a lot of opportunity for education about the disease and its impact.
But I’m not going to do it, and here’s why – it’s not part of my heart.
Call me selfish if you want, or a killjoy if you prefer. I was tagged thrice, and I donated, but it’s already distinctly autumnal here in the UK, and there is absolutely no way, not even for this charity, that I would submit to having someone pour a bucket of ice-water over me. I *hate* the cold and am far, far too chicken for ice-water. That’s not the only reason, though.
I’m a firm believer in charity, and whilst my bank statement probably reflects my selfishness far more than my giving, it *is* there. And as our bank statements often reveal where our heart lies, let me tell you where mine is.
If you’ve been a reader for a while, you might have caught my post ‘On Isolation and Infertility‘. You don’t have to read it to figure out that I’m not going to be a parent any time soon. Or perhaps ever. That hurts, because Husby and I are both very family-oriented people, and had names for our four children picked out almost before we were married. We also planned to adopt. Best-laid plans, huh?
Back when we still thought all things were possible, I stumbled across a documentary on Youtube, entitled Bulgaria’s Abandoned Children. It. Is. Harrowing. I don’t cry often at videos, but this turned my blood to ice, and flooded my cheeks with scalding tears. There are scenes there I can never un-see:
Rooms full of children rocking and rocking, in crazy, disjointed harmony, desperately trying to self-soothe.
Cold, peeling corridors with kids shuddering from cold, incarcerated by winter and their fate.
A disabled, non-verbal girl contorted in pain and trying to scream as untrained (desperately over-stretched) staff manipulated her (obviously) broken leg and wondered in the subtitles why she was fussing.
Teenagers the size of toddlers, stunted and twisted in cots they will never rise from.
Hands reached out through bars to the programme’s presenter, desperate for contact, their trusting eyes turned towards her.
A child tied down as his tonsils were forcibly removed without anaesthetic, and the nurse crying afterwards because she knew it was torturous but necessary, and they hadn’t the funds for medicines.
The blank, hollow stares of children – so many children – who know that there is no longer hope.
Rows of wooden crosses in the woods behind the institutions.
It broke me, and with each new scene the devastation which can be wreaked by ignorance and neglect turned to a small, steely place in my heart – determined to MAKE A DIFFERENCE (oh please, please, let me make a difference…)
I spent the longest time looking into international adoption, particularly considering the possibility of a child with special needs – imagining that I might be able to rescue a child from a fate similar to the ones I had seen. I have a background in working with children, and amongst them, some with special needs. It would be an exacting task to parent such a child, perhaps, but wonderful. And, because in other parts of the world, even quite close to the prosperous West, children with special needs are often abandoned by their families; orphaned through no fault of their own, due to the social stigma which is attached to their disabilities, I particularly wanted to provide a home and acceptance to one of these. Having discussed my desire for this with Husby, he agreed.
I stumbled across a wonderful organisation in the US called Reece’s Rainbow, which locates children in various orphanages across the world, and creates profiles where money can be raised to go towards the (large) cost of their adoption. It primarily supports the adoption of children with Down Syndrome, though many of the children have other disabilities – some no worse than a squint – which has sealed their fate and left them without a family.
I trawled the site for weeks, back when I thought there might be a slim chance of adopting via the organisation. I found a girl, Violetta, and fell utterly in love with her adorable smile. I began to imagine the wonder of our lives if she were in it. Then another – Gretchen – whose sad face and giant blue eyes twisted my heart and made me long to bring her home.
Unfortunately my research came to naught, because UK law prevents us from adopting internationally, and *particularly* an international child with special needs. God forbid that the NHS should be used for a foreign kid who needs medical help! I’m still (so, so) heartbroken and angry about that.
Since the time I was researching, things have changed and Violetta’s country will no longer allow her to be adopted. She has grown older, and the chances are that she will have been transferred from the infants’ orphanage (the small window of time in which these children can be rescued) to another institution, which will be her life sentence.
Gretchen is still available for adoption.
My heart still aches for the plight of these children, and the edges of my soul are burned by the way we humans treat one another, and allow others to be treated through our complacency and ignorance. A black mist rises behind my eyes when I think how fortunate I am, and really, how little I do to help others.
I am a selfish, self-involved, zebra-headed, living-in-the-midst-of-my-first-world-problems two-toned paramecium-brain.
And I will try to do better – I can’t make a difference to them all, but perhaps to this one…
For sweet Violetta, who I have loved so much without her ever knowing, and for Gretchen, for whom there is still hope.
That said, if what you *really* want is a sexy, wet-shirt, ice-bucket video (and a tonne of information about ALS which you might not have known), head over to my darling friend Hastywords’ blog right now, and see her take the challenge…