Tuesday, 17 August 2010

The C18 European Conference

I've been thinking about writing this post since before going to the Conference which took place in Glasgow over the weekend of July 30th.

Having got myself Mum and L there, experienced it, come away, gone immediately on our family holiday, come back, immediately settled in my new childcare, immediately returned to work, immediately waved goodbye to hubby on his business trip.....I'm still thinking about it.

So here I am deciding to write it instead.

With reference to the title of my blog and those of you who read some of the posts here, it won't come as a surprise to know that I was quite scared of getting overwhelmed by the whole thing.

Overwhelmed at being in a room with all these people who know what my life is like having never met me. Who know what my son is like having never met him. Who exist, in glorious technicolour and with moving parts, not as virtual email, facebook or blog friends. Who have children older than my little man, perhaps sicker than my little man who therefore open doors in my head that I am so very good at keeping gently closed.

I often talk about living a lonely life being the only person I know in my surroundings who has the elements I have in my day to day. But there is secretly and psychologically a comfort in that, because if it's in my head, it won't be judged and maybe it won't hurt as much or sound needy or ungrateful or dramatic.

So to finally come face to face with actual people who know where I'm coming from, have as I now know way way more challenges than us so far with my lucky miraculous little boy...was and is kind of HUGE for me. Even as I type, force myself to think and write, I feel a bit wobbly.

And Yet.

The experience was amazing. The people were amazing. All the things I feared happened and even they were amazing. The organisers were tireless and smilingly amazing (Bonnie, Chris, Alistair and all). The superstar Drs Hale and Cody and all the contents of their brain that they so generously shared were amazing. The wonderful Rick Guidiotti and his energy and light, the mums, the dads, the kids, the grandparents, the siblings...all amazing.

I was and am still struck by the lack of judgement of any child's behaviour or appearance that weekend. The kindness and warmth and emotional intelligence that filled the rooms we inhabited. The worry and the honesty and the advice that people shared. The smiles and hugs and welcomes. The guest speakers. The sneaky look at the name badges and the not so sneaky "I'm a p, what are you?" people like me.

I know I'll be absorbing the experience slowly from now on and that I have got to find time to let out the emotional response that I'm gently pushing down. And those are the emotions of entering a home that you kind of wish you hadn't bought, are still slightly in denial about all the cracks in the walls, and yet feel terribly terribly lucky to have found.

I described my weekend to some friends and my sister as overwhelming, wonderful, sad and happy and very hard all at the same time. I found it very humbling to see how challenging some people's parenting is with the medical issues that their kids combat daily. I can't find the verb to describe my own feelings as mother of my boy. My boy who walks, talks, runs, plays, breathes, eats...and does so on the whole looking and acting as a typical nearly 4 year old.

My challenges however were crystallised. I have to garner the strength to keep knocking on doors and keep checking that the challenges he has are still moderate and tolerable. That the problems we know are out there for our kids are not finding their way into him. Dr Hale said a sentence that I want to carry in my wallet, medical file and heart. If you don't check, you won't know if something is normal or not.

So on I must go. Back into fighting the system to insist they find me a paediatrician or the kind of GP we need. To insist they keep me on their books even when the annual check is unchanged. To insist on even getting the annual check in the areas we need in absence of any big signposts telling them they should do one. To keep finding ways for them to take seriously my maternal instincts, C18's research and my opinion of the kind of care my child needs.

And to keep looking beneath the curls and smiles and magic of my boy and join us in our proactive, stubborn, positive and super informed approach to him, all he is and all he can be.

Thank you Bonnie, thank you Drs Hale and Cody, thank you Denise, Kristen, Katharine, Rick, thank you mummy for being my calming rock, thank you L for being my super boy.

I will fundraise for this for as long as it needs me.
I am proud to be adding our records and DNA to the scientific study and of all the good it can do.
I am shallow enough to want to be a proxy member of the Italian contingent who looked so stylish and beautiful that they rendered me quite mute. But I am able to balance that with a deeper admiration that they attended with their therapists and carers to learn alongside the affected families.

So onwards to 2012 and may all the days in between be happy.

Thursday, 12 August 2010

lots and lots of time gone by

I'm breaking a blogging silence that seems to have crept up on me.

I think it all got a bit too much and I went into coping turtle mode with work home work home chores work home....you get the picture.

I'm just back from a very much needed 9 day day holiday and am at the end of a very promising day 1 of a smiley happy new au pair living in my house. Today I got L's first neuro test out of the way and with friends and old nannies around to help the new childcare, I am ready to go back to work tomorrow without a feeling of dread.

I have also been to my first C18 conference and survived without getting too overwhelmed and indeed genuinely enjoying myself. It was a all a bit of a kick bollock scramble getting to conference and then going away on holiday less than 12 hours after returning, but I am slowly absorbing all I saw and heard there.

Lots has happened since I last posted, not that I can really remember when that was without looking(possibly even before the kidney appointment in June which rattled on a little...more about that another time) but I will endeavour to look back, dig in and come back here with anything worth saying.

What I do know...before I pop off, is that I've now read two Diana Athill books and I'm even more excited about her than I was in my post

So as I tentatively type this and retread this neural confessional pathway, it's nice to be back.