I started this blog about a month after we'd received Bee's Kabuki diagnosis. I was feeling a little lost at the time, instead of indulging in support from others I found myself having to explain to all and sundry about Kabuki Syndrome. Even Bee's doctors and therapists.
I'd registered with Contact-a-Family, contacted all the KS families on there but a month later still had no replies. I googled Google to death, searching for someone, something, anything, anyone who could understand and sympathise.
It became apparent that when the geneticist told us KS was rare, they'd really meant rare.
While we were still dealing with the repercussions of our diagnosis, we still had concerned family and friends wanting updates on Bee. She was still quite poorly on and off and we had a lot of therapy appointments, at the height we could have 10 - 12 a week. It was very difficult to constantly repeat her progress over and over and so I started writing 'notes' on Facebook, as a way of keeping our slightly more distant extended family and friends informed. To my complete surprise I started to find it a cathartic experience. Almost a cleansing of all my stresses and frustrations.
Which is how the blog came to be. A combination of keeping people informed of Bee's progress, hoping that a KS family somewhere would come across us whilst doing their own searches and a place to expound all the thoughts and feelings that come with having a special needs child.
As time wore on it had become more and more apparent how isolating having a special needs child can be and I was so ready to talk to someone who understood. We attended playgroups but while all the other children crawled or toddled around, Bee just lay on the mats. We went to soft play for the same thing. While other parents were painting and playing dolls or cars, I was trying to get Bee to grip something, anything. I got so fed up of the sympathetic looks, the whispering and staring. A standard conversation would go:
Person: "Awwwww, how old is she?"
Me: "She's..." *insert age*
Me: "She's..." *insert age*
Person: ......*pause* "Oh" *pause* "She's lovely"
Usually followed by an awkward silence and me attempting to explain that Bee has special needs, almost like I needed to justify why my child couldn't do the things expected of her. It got very tiring and each time I found myself being more and more defensive. I would even snap "was there something you wanted?" at people who would stare at me tube-feeding Bee in public. I was not in a happy place.
Early in 2010, approximately 6 months after starting the blog, Clare found me. Finally, another mum! Someone to share, celebrate, support, commiserate.... I was thrilled.
It turned out that Clare had a little girl called Isla, only 3 months younger than Bee and at a very similar stage of development. And, not only that, they only lived 20 minutes down the road!! I couldn't believe it. We'd gone from being completely alone to not only finding a new friend, but one that lived within meeting-up distance!
|30/04/10 Bee & Isla's first meeting|
We finally met in March 2010 at a local soft play centre. From the moment they walked in I felt at ease. Chatting with Clare was like chatting with an old friend, even though we'd only just met, there was no awkwardness, we had so much to share! Isla was just beautiful. A little shy and wary of me, but that was to be expected. Our girls could never understand that even though we were perfect strangers, we already shared a bond.
And so we chatted and swapped war stories, symptoms, quirks and habits of our girls and as the afternoon wore on I felt a sense of weight lifting from my shoulders. Like the burden suddenly wasn't so great as Foz and I didn't have to shoulder it alone. I left the soft play centre that afternoon feeling brighter than I had done in a while.
|05/07/11 - The girl I adore|
Since then Clare has become more than a friend, Isla more than a lovely little girl (although she is that too!) They've become family. They've become an indispensable part of my life. So many times over the last 15 months or so, I've relied on their friendship and support. So many times I'd have been lost without it.
We've shared laughs and tears (both happy and sad), 'first' moments, cuddles, playtime and many many cups of tea (and a sneaky cake or two). We've set the world to rights in an afternoon. We've shared cuddles with Iggle Piggle and all the while we've watched our girls grow together.
Clare, Isla: Kabuki may be the reason we met but it's not the reason our friendship has continued to grow. I'm honoured to know you. Honoured to share our lives with you and know that as our girls grow we'll continue to face the world together in support, and more importantly: friendship. You are a beautiful person, with two beautiful children and I've never known a more wonderful mum and friend. You and 'R' do an incredible job.
Love you guys xx
P.S. I know you're crying - stop it! ;-)
|05/07/11 - Bee and Isla swing away|