Which makes it seem right for us. The Us? Not just us Ds, but the other families out there existing off grid. Not so mainstream. And I’m not talking about the ridiculous extent to which Wolf takes our recycling (removing staples from Sunday supplements anyone?). Or my new found love of baby wearing. And I’m not talking about sins, although admitting to them feels a little sinful. I’m talking of course about being a family with a medical and developmental space oddity within it. Parents of a ‘special needs’ child. I won’t go into my problem with the term ‘special needs’ just now. That needs a blog
post rant all of its own. It was coming across the following piece in The Huffington Post by Maria Lin, where I read and nodded. Smiled at her love of cashmere. And spent some time thinking about how the points apply to us directly.
But some other news has affected our wider family in the meantime. A very close member has had some devastating news. Something that wasn’t part of The Plan. Cancer. Knocked us all sideways. Turned us upside down. And that made me think of these seven points again, and so this is about us, yes, but it’s also in honour of that family member dealing with their own unknown space oddity. Not that I’m in any way comparing my child to a tumour, but what he has to overcome, what he deals with, what we’re trying to understand, that’s the oddity. And this isn’t me on my soapbox, asking you for sympathy. Or trying to educate. It’s just if you ask me, I’ll always tell you I’m OK, because I am. But sometimes, just sometimes, I’d like to release the pressure valve off the slow cooker off the seven ingredients. So here goes…
1. We Are Tired.
Tired of so much. Physical tiredness- the cough and scream of reflux in the small hours, the alarm bleep of a gastrostomy pump going haywire, the hoofing about of a child that doesn’t hold his own weight. Tired by a child that seems to want to function on not as much sleep as we would like. Tired of the worry. Tired from trying to understand, how, why, can we make it better? Tired of therapies. Tired of hospital, of appointments. Tired of being strong. Tired of my false smile. Tired from feeling so weak somedays the hours roll past meaninglessly and tearfully. Exhausted by trying to look too far ahead. Sometimes we’d like to step off, take a breather. We won’t ask for it, we’ll probably refuse it, but knowing that it’s there, that’s enough at the moment. But conversely, we’re tired from the love we pour into both our children. Stand back at the end of a day and feel the glow of both of them. Satisfyingly tired.
I’ve basked in the compliments that have followed having Dulcie- I know I don’t look as tired as you’d expect from having a newborn. That the weight has gone. That I’ve managed to do my hair and put on some make up. But I’ve not slept properly for two years. And I have been running round for both children. And yeah, I should admit we still have childcare…
2. We Are Jealous.
Flecks of green round the edges. The pause to think Why Us. Of course, we’ll celebrate all your child’s achievements, genuinely pleased and delighted. But jealous of the seeming ease to which they achieve it. Jealous of undivided interaction. Being able to leave the house without military precision. To be able to have aspirations above provisions. But we have a lot that others may desire, and I try to remember that above all. Yes, we’ve been dealt a hand that may only be recognisable to a few, but at least we were allowed to play. And there’s an odd feeling that doesn’t seem to make sense. I’m jealous for Rufus for all that Dulcie gets. To sleep in our bed, to feed from me, her plump, pink juicy naked form juxtaposed to his floppy translucency. A different kind of love.
3. We Feel Alone.
Never when we’re together, team D. Mostly when in a crowd, a group. Surrounded by normality, we’re glaringly on the sidelines. But there’s some comfort in that, being alone makes us unique. Rufus’s future is unique. And we love spending time in your company. And we know of places we’re not alone, people in the know, whether face to face or online. So actually, not so alone. And we could easily teach you how to join in Rufus’s world, as detached as it first appears from What You Know. Don’t be shy.
4. We Are Scared.
The future is heavy. Burdened. Pregnant with fears. Children with significant development delays and learning problems are still cute, you can see that. But they also have behaviour that can be challenging. And then adulthood? What level of support will he need? But gradually I’m opening my eyes to the positivity and love within families of disabled children, and finding it myself. And making sure that I don’t allow my fears to become his reality, to believe in the unknown truly and celebrate fully every step he makes. But that’s aside from his medical condition. When will the time come when we’re literally asked to give him an organ? Such a major operation for all Ds involved, with no guarantees attached. And we’ve been blessed in that it doesn’t as yet seem like a solution, a relief from the misery of balancing fluids through protein infusions or dialysis. It’d be nice to see our boy look healthy, not so slight and pale. But that’s in a box tucked away to open when the blood test says so. It’s not our everyday, and for that I am grateful.
5. We Wish The Greater Populace Didn’t Use “Retarded” So Freely.
Listen, people in glass houses shouldn’t throw stones. And before all this happened, and since it’s happened, I have opened my mouth and said some completely stupid, insensitive things. Because of nerves. Because I was on a roll. Because of ignorance. *Shamefaced* I made the same mistake as Ricky Gervais. You see, things people say have the power to inadvertently injure or rile me up without provocation. My tolerance of insignificant small stuff has been reduced. The moans of precious Tarquin being so advanced it’s just soooo difficult to control. That you’re worried about having to give a dose of calpol. That god, you’re pregnant agaaaaiiin. But I won’t mention it, it’s my beef. I just may look at you like I wish my eyes were lasers. I may laugh when you describe something looking ‘special’, because I know. I see it too. But don’t bandy about words like retarded. It’s not big and it’s not clever.
6. We Are Human.
I am not gifted in this game. I don’t necessarily want to be my son’s advocate everyday. Somedays I relish leaving him in other’s care. Getting my hair done. Shopping. Eating cake. Alone time with Dulcie. Writing this, ignoring Dulcie as she sleeps. This happening to us has opened my heart, freed my voice. Made me look at others beyond the surface, not so quick to judge. Patience and tolerance. But I am not Superhuman. And like Maria says, conversationally sometimes I’d rather talk about anything else. Because I don’t want to open the floodgates, because it won’t be an easy answer. Because sometimes I don’t know what I’d say about it. And I save it for here to bore you rigid, with a backspace button that I don’t have on my mouth to edit.
7. But, We Do Want To Talk About Rufus.
Ahem, well there’s this blog for a start. As life passes by with lightening speed for you and your families, with worries and joys, you may wonder how to ask us about Rufus. Generalisations lead to simplistic answers, because you know what, we are fine, good even. And if you were hit with his list of non achievements you may assume our lives with him are boring, dull. A little sad. You may turn to books and Google to tell you when your child should be achieving their milestones, and worried a bit about being a few weeks off. You may have even asked health professionals, to be met with ‘every child is different, they will get there in their own time. As long as they’re progressing’. But imagine if it wasn’t weeks. It was months, years late. But there is glory in the inchstones. Nothing, nothing gets missed. ‘When’ he should have done it becomes ‘If’. And my boy is a changeling, you might not see how he’s adapted to his floppier frame, his bendy fingers. See his feral intellect. So sorry if he can’t compete with the racier models. Slow it down, take some time, you’ll see it. And I talk about it to see it myself. Take a step back, work through the blur. The beauty of not talking too, is sometimes you just get to look at a picture. It may not tell you everything, but it will sometimes tell you all you need to know.