On Saturday I had three other mums with children born with Down Syndrome around for lunch. It’s main reason was to brain storm a collaboration that we have in store for October, Down Syndrome Awareness Month. Yes we did hash out some ideas, and yes we did drink some champagne and yes we did share a meal. But more than that we off loaded.
Like an alcoholic finding solace at an AA meeting or an artist getting her fix at an art gallery, I always find these meet ups cathartic. There is something healing about being able to be completely honest with people who know. People who get it, people who have been through it and people who share the same struggles and the same passions.
Although all of us mums are of different ages, at different stages in the parenting journey and have experienced different reactions to our shared journey of parenting a child born with Down Syndrome, we all had at some point hit a low point. A point when we had found it tough. A point when we had been hurt, when we had felt ostracized and when we had wished that we could take our child’s diagnosis away, in order to shelter him or her from the cruel world.
For me, I find birthday parties tough. I find play dates tough and I find picking my son up from school and him not being able to tell me how his school day was tough. For others it’s being stared at by strangers in the shopping center, it’s endless therapy sessions and younger children hitting milestones, it’s negativity from medical professionals or it’s your child clinging to you at a social event, their little face buried into your neck, because they are overwhelmed and you eating cold eggs as a result.
It’s tough, and you learn to have a pretty thick skin.
Do you know what is tough too though. A sick child. A baby with colic. A child who is bullied. Learning disabilities, drug addiction, parents who can’t conceive. Divorce. I could go on and on and on.
You see it’s all about perspective.
And do you know whats not tough? Loving our children. Loving our children so much that it hurts.
Seeing our son determinedly taking his first few steps. Seeing him gently kissing his sister, sharing his toys so kindly with other children and flipping through his beloved books.
Feeling his intense hugs, his freely given kisses and staring into his soulful blue eyes.
That’s not tough, that’s pure magic.