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.


  1. The first conference is so overwhelming. We were physically and mentally exhausted by day two of our first. It was a good exhaustion though, albeit a bit of a reality check.
    I'm so glad you went and had a wonderful time.

  2. Sara, mi amiga Sara:

    Great blog, all feelings,human,willing to expose herself.
    Vulnerable and prominently so, we walk the same road
    Sometimes,looking down as the many potholes in life are
    there just for us.
    Sometimes looking high, when our efforts bear the sweet fruits of success.

    Longing for a friend, love, understanding, that often is never there on time

    Crying within as our loads seem unbearable, yet we can wipe our tears
    when our treasured loved ones say, its OK mom/dad.

    23 years have gone and I rest my fears deep inside, for I know when I am no longer here my children will not have someone to tell them its Ok for I love you dearly.

    Then Sara my dear Sara, there are others in this lonely road that will tell you...Its OK my dear, we are here for you, just reach out and I will tell you my stories hoping that sharing this peregrination our walk will not be so lonely.

    Kiss your child and hug all of your children, tell them they are important and they will acknowledge and reciprocate that that you are longing
    Unconditional love, as iy comes fro within without expectations it simply is.

    Trying to climb a deep cavern is not ease and we cannot do it alone.

    So mi amiga sarah I am far away in distance, but so close at heart, that you will have to choose between distance and heart when loneliness arrives...I know, what your choice will be and that places a smile in my face as I write this.


    Uncle Leo

  3. Sara & Uncle Leo:

    I am grateful and blessed beyond words to have the two of you in my life. You two so beautifully express and write what I and those like us feel and experience.

    Thank you, thank you, thank you ~ I ♥ you both to pieces! Thanks for being there when I need you most and didn't even know it!