Monday, September 30, 2013

"We try to teach our children all about life, our children teach us what life is all about." Angela Schwindt.

It has been a while, and I realize I am not as thorough as I used to be in my previous posts. Life seems to be a fast-paced treadmill with therapy galore and a new schedule for me as I am starting work again at Ecole Bilingue. Though it is a one-day a week gig, it will enable me to slowly enter the routine.
In fact, it is a day for myself, where I can dedicate my energy to other kids. I need a day away from therapies, sidelines, bleachers to pause, and work.

Zoé is now so attached to me that I think it might become detrimental to her gaining independence. I have been going to her therapies for almost 6 years, and she now won't even let me go grab a coffee while she is in session with her speech pathologist. She needs to know that I am there, right behind the door, so working will be a real breath of fresh air, for me and for her.

On a different note, this week I attended a meeting called "Praise" where moms and dads parenting children with special needs met. It was wonderful to be in the same situation. We shared ideas about neuro-diversity, children with different learning styles and brain wiring. Children on the spectrum or having physical impairment, cognitive impairment and more.
It makes me feel empowered to fight the fight, to share what I have learned along the way and acquire new knowledge about IEPs (Individualized educational Plan), behavioral intervention and other ways of helping our children reach their full potential.

As Andrew Solomon suggests in his book Far From the Tree "all parenting turns on a crucial question: to what extent should parents accept their children for who they are, and to what extent they should help them become their best selves. " We are ordinary people facing extreme challenges, whether our kids are on the spectrum, whether our kids have a qwerky personlaity, or gross motor delay. what matters is that we are here to help them mature, grow and find their true self.

Yesterday, at the Harvest Festival, Zoé went straight to the tricycle race, without a ticket,  and managed to get to the finish line in her own way. It made me realize that nothing troubles Zoé. She finds her own way of conquering her world, Zoé has the determination and courage she needs to go far. This little tricycle will soon become a bike with training wheels and eventually she will join the free-wheeling world of her peers.
At the praise meeting I thought of a few questions I still struggle with:
"When will I tell Zoé that she is different, when do you mention diagnosis, or do you just avoid it."
"How do you approach people who gawk and wonder?"
"When is bullying more than a little snide remark here and there?"
Zoé lives her normal, her world is what she's always known, so she feels good, safe and empowered to conquer and compensate to try and do what all her neuro-typical peers achieve.

My way of dealing with the diagnosis is to show that Zoé and I share the same issues in a medical sense. She was looking in awe at the holter monitor I wore last weekend.
I simply explained that I go through what she goes through, that it is OK. By seeing me wearing it, Zoé realized that she had worn hers this summer and knew that it was all good.

I also added that I go to pilates once a week the same way she goes to Physical Therapy twice a week: "We need to keep our body active and those muscles working." That's my simple way of mentioning Steinert, without using the medical jargon that she wouldn't understand anyway.

Mommy's Holter Heart Monitor
Like many parents who have children born with special needs, I often wonder how I can teach Zoé what she needs to know. I never  guessed that she would teach me and is still teaching me invaluable lessons.
Zoé, like Kayla, Ati, Simon, Drake, Gabriella and many other children I know and cherish, these are all exceptional kids who achieve little victories daily, instilling wisdom in us, their parents, with each stride they make.

Life is sweet, enjoy cupcakes!

Tuesday, September 17, 2013

Our Journey with Myotonic Dystrophy--A must watch!

It is incredible how this video hits home every time I watch it.
I remember Zoé's birth.
Her stay in the Neonatal Intensive Care Unit.
Her little isolette, her sweet little body and face and hands behind the glass.
The skin to skin contact we shared after that.
The tubes and beeping machines.
Her first series of exercises, her many appointments with PTs and doctors.
Her walker.
Her first steps: 2 years and 2 months.
Her many braces and casts. Unlike Kayla we chose Purple.
Kayla is our hero, a true inspiration.
A beacon of hope in this world of dark uncertainties.
Her prognosis was probably uncertain and scary, but every day she walks one more step towards a cure and in her wake we follow, looking up to her as she proves that miracles do happen.
We love you and your wonderful, dedicated mother, Lisa!
Sarah and Zoé