If you've read any of my ramblings you will already know I say nothing in brief, so be warned this post definitely wins the word count wars. And by all means go grab a coffee, tea or glass of wine depending on what tickles your fancy (hell, maybe even a Krispy Kreme - life's short, right?) and sit back. You know...if you have time for a long read. If you don't, go on and grab the day by the horns and ride. Lasso. Herd. Wash up. Then come back and spare me twenty, if you would be so kind?
I started blogging just about four years ago largely because it kept life jovial. It kept that life with its constant threat of 'what if' firmly rooted in 'what IS'. Every day with one foot on a skateboard and the other on a banana peel, these words a speedbump. It helped me cope and hasn't yet stopped. Life balm.
How to deal with motherhood when you aren't quite sure you're not crap at it?
Write about it.
What about that unexpected journey for Rukai, and so for our family?
Write.
And hey, then there's managing those tricky personal relationships from within this strange new pressure cooker.
Writey write write.
These words are the escaping steam that rattles the lid. They are the finished goulash. The savory gumbo. I spoon them out whenever a new batch is ready and hope that anyone reading really needs a good bowl of home cookin'. I hope they're sopping it up right down to the last with a gargantuan swodge of cornbread. I hope they ask for seconds. Because I don't cook it for myself.
I
must tell this story in part because I need it out from my skull, but more so because someone else may be looking for it. Someone careening downhill on that skateboard without a bump in sight. Someone craving home cooking in the middle of a power outage. You are not alone. Have some goulash. While you're here, why not share your recipes - I bet they taste about the same.
The first couple years of Rukai's life were absolutely vicious on me mentally, if I'm being honest. I'm not entirely sure what that reads like in specifics (and expect it will come out via drip feed across many other word stews at some point) but it took a ridicuously long time for me to find any comfort whatsoever in any part of the Down's syndrome community. There was always such a negative slant from every angle to Rukai's very existence from
outside that community much to our eternal dismay (we surely never felt it). From those so called authority figures working within 'the system' who were always trying to fix Rukai, when there is not a damn thing to fix. 'Here is where the 'broken' people go, have this leaflet, go to this website. Now I have to deal with other more important things...'
Um, I don't need to tell you where to put that leaflet, thanks. The only thing that's broken is your attitude and belief system. Break
this.
So, you understand, I have to tell this story. Because we should have been comfortable embracing that community from the start. Instead we feared it. We feared everything. But time soothes and washes and caresses and the fear is only a memory now. Thank heavens the only time lost is with community, because we have only loved our gorgeous Rukai. He has been a blessing and owner of our hearts all along.
Thank heavens they didn't take that from us. From him.
That long awaited and much needed acceptance led to writing for The Mighty. And it led to me reading other stories, about other disabilities, other life challenges and triumphs, other passionately focused parents seeking the brass ring for their kids, despite all the naysayers telling them they're not capable. Other disabled people speaking proudly of their own journeys - and how they
own their journeys.
A virtual gunfight in the virtual OK Corral brought a bunch of these parents together in the
SNAP community, of which I'm so proud to be a part. And this group of parent advocates share many of the very same feelings that I have. They 'get' what I need to say. They support me when I'm feeling low and ride waves of joy alongside me. They are me and I am them and we are in a very unique sister- and brotherhood and my doesn't that feel amazing. There aren't words. Ok, there are words but we're on a schedule here...
One of these moms is Kera Maxwell Washburn, who writes a blog I am loving called
The Special Reds. Kera's journey is centered around her three very special redheaded kids each on their own unique path. It's no secret that quite probably one of the main reasons we've bonded has a lot to do with 'The Red' bit which has forever been unifying for me, but Kera and I click deeply on that other plane, too. The path is so muddy, but we just go and do our best for our children. Scrape the shoes at the end of the day and do it all again next sunrise. Because.
I tell you what, though, this gal is made of some tough stuff and how she keeps all those plates spinning with a smile on her face and a positive attitude is beyond me. I'm like cartoon geriatric Maxine in comparison. Chalk and cheese. But we have that ridiculously important thread that binds.
At any rate, Kera suggested a couple weeks ago that we share our journeys in the form of letters to one another. Letters! What a fun ride. What a great way to talk about what is so similar in our worlds - hers in the US, mine in the UK - even though we don't have identical paths before us. These lives in parallel mean the parenting role we must take is so similar - those battles to give our kids the best possible lives against societal odds, those emotions, fears, upsets, huge joys - no matter the location, no matter the diagnosis, we are all in this together.
So please enjoy the first step of this new adventure, one which I hope will be popping up here every week. We haven't got the foggiest idea where it will lead (and isn't that the fun of it all?) but I know it will be somewhere familiar and kind and irretrievably honest.
And it will feel like home.
*********************
Tuesday, 2 February, 2016. Icebreaker.
Dear Kera,
I'm so envious of you right now.
I just got through
your story about your neighbor digging up the courage to turn up at your door and raise her suspicions about your beautiful copper headed firstborn, Juliana, having autism. I appreciate that your words about the moment are only partial, concise and to the point, because that's what we do as storytellers, we get down to it. We think it out and wield the delete button like a scythe across a field of wheat, we chop and edit and condense to the point.
But the point is like an iceberg - the frozen depths are where the real story lives. And I can't help but wonder what is buried beneath the ice.
There is so much left unsaid in the tales we share of our journeys as parents of kids with special needs, disabilities if you will (but I won't. I hate the prefix 'dis' because it presumes lack of ability. Let's accentuate the positive for now as the song says.)
Shame I couldn't have got down to doing that four years ago. But by all that I am, I really do feel green towards you in that you had that time of not knowing. You had that time of raising that beautiful girl unknowing, in a world which views different as problematic - and when all is said and done, the actual problem is that this 'problematic' viewpoint exists at all.
Our journey didn't include any of that. In some ways I feel lucky because I don't think I have your strength and belief and generosity of heart to welcome someone from outside the inner circle telling me something I may not want to hear. I have shunned every outside opinion from day dot, mostly because they have, from day dot, in their own little ways, kept telling me my son isn't worthy of existing at all.
I have started off on the back foot. But I've since learned that if you lean deeply enough into that back foot you get more momentum to launch yourself into tomorrow.
Our negative experience began from the first office visit in pregnancy and worsened with each subsequent appointment. We never had the chance to birth a 'healthy baby' a 'typical child', any other descriptor of an infant without a condition science immediately labels 'problem'. And when our gorgeous Rukai was born the only joy was hushed by sharp looks and whispers, of words like 'risk' and 'upslanting palpebral fissures' and 'floppy' and 'T21?' scrawled across that blasted red book of maternity notes they make you lug around in the UK. I felt as if they wished difficulty upon us. As if they willed Down syndrome upon him. That he'd wear it like a yoke, digging that plow of misinformation behind him through life, raising the soil that continued to plant the seeds of doubt given him by the very same doctors who'd sworn an oath to protect, serve, care for him. Those early doctors never did care for him, not really. One even brushed us off with 'did you have any other questions? I have a very sick child to look after down the hall.'
Sorry to take your time, Doctor. I hope Rukai feeds those words right back to you one day.
There came the day his diagnosis was confirmed by that same heartless practitioner. After the blood test we had demanded because their 'soft signs' were nowhere near good enough. You don't give me guesswork when you're telling me our firstborn and only child has a condition for which society will endlessly throw him away and marginalize him. You give me proof. And so they did. But still that proof burned. Branded.
And I went for my first post cesarean shower in the private room they'd put us in - in retrospect now I know why - to that room in which I took off those bandages and collapsed into a ball in the corner and let the water wash all of that hurt and worry and stress down the drain. And I wailed myself hoarse.
But I didn't cry for the diagnosis. I cried out of fear that my son, my gorgeous boy, my sweet beautiful Rukai, would suffer the same relentless bullying that I endured throughout my childhood. And for no reason other than he happened to be born with an extra chromosome. I cried in fear and in anger that life had dealt him a shitty hand in that there are people out there who would hurt him without even thinking about it. That there would be those who thought less of him than of any other human being, he, one who bleeds red, because we ALL bleed red. It doesn't matter how many chromosomes are in that blood, it's always red.
I envy you Kera, that your journey on those early days was not yet visible. I so wish our little family could have had some minute spot of joy on those early days because it was entirely stolen from us by so much fear, and from every angle.
But wait.
This is four years later.
And like every type of grief, no matter what it is for which we are grieving, it fades, it has left its scars but we no longer let it own us. And we see the thing we are grieving for what it is.
Rukai is four in a couple of weeks.
Rukai is in preschool and has loads of friends.
Rukai is developmentally delayed but is doing what he should be doing for the stage of development which he is in. And he is doing it with style.
Rukai is outright amazing. Had I known it then, I'd have hoiked myself up from the floor and said pull it the hell together, girl.
You see, no one had told us Rukai's reality would be possible. Certainly not the doctors. Certainly not society. And to our great misfortune, no amazingly thoughtful neighbors could have predicted the reality of our lives today. We have clawed our way out of that chasm of 'what if' to reach these heights of 'what IS'.
And the view from here is mind blowing.
Now I look back on those very early days with curiosity. Little if no regret. Because the ferocity and intensity of my reaction to the path we had been set on has only underpinned the ferocity of my approach to everything that Rukai needs in this life. I am his mother, his protector, his advocate and later in life - if I'm lucky - his confidante. I am his tiger mom. I am...HIS. I do little that doesn't place him first. Because he is so ridiculously worth it.
I love that every day I see how far he has come and his engagement with me says 'cool out, ma, it's ok. I got this.'
Four years ago I was so unbelievably worried. Today, not so much. Today the level of pride and anticipation and hope and expectation eclipses any worry I once felt. There is a shield between us and the outside world which allows in what Rukai needs and prevents all the unnecessaries from finding their footing. This shield has been lain by Rukai himself, because it is he who is in charge, and no one else. Despite what any of the outsiders who keep trying to get a look in may think, Rukai is in charge.
Little did I know on that cold February day, in that amazing Olympic year 2012, that I really had, in fact, given birth to a champion.
Now if you're up for it, how about telling me what exactly is buried in that ice?
Love & best wishes from over the pond.
Maxine x
Just gotta ride it. Let your throat dry up and your hair fly and ride baby, ride.
