“As long as it is healthy” my 9 month pregnant hair stylist replied when I asked her about her preference of the child’s gender; she didn’t know about my daughter.
I bit my tongue, as for a split second I was considering telling her why in reality it should say “As long as it is HAPPY.”
I wanted to tell her that she still would love her child with all her heart no matter what.
I wanted to tell her how proud she would be of the tiniest achievements her child would make.
I wanted to tell her that despite of the undeniable hardship she would survive it and find new ways to create happiness in her life.
I wanted to tell her that she would rise above what she has ever thought she was capable of doing and so much more…
Of course, I didn’t. Instead I just nodded and smiled.
Ever since I was a child I felt - I knew deep down – that one day I would have a child with special needs.
Isn’t that something?
I have been looking around me in search for children with disabilities for as long as I can think of – with limited success. Where were these children? Every child around me was typically developing.
I never mentioned this to anyone, as I felt foolish, even guilty and ashamed of having been thinking ‘that way’.
Today I know I wasn’t just ‘thinking that way’. There was no reason for me to come up with thoughts of this kind in early childhood, especially as I have not been exposed to children or adults with disabilities at that age at all. Although it took me a while to accept it, I truly believe now it has been my path to walk on even before I began the journey of my life.
This realization was confirmed when 2.5 years old Vivienne started talking about my wedding with incredible accuracy. She has not seen a video of my wedding and neither I nor my husband told her about it as she still was so little. The wedding took place in Germany 7 years before she was born. And yet, she was telling me details out of the blue she just could not have known.
I asked her how she knew. And she said: “I saw it.” - I asked ‘where’? And she answered “Far far away in the rainbow castle”. Just like that.
Throughout my adult life I felt I do not fulfill my purpose. There was a voice deep inside of me telling me I haven’t started walking my path yet. I struggled to find my purpose; I was searching for it within and around me.
Little did I know my purpose would find ME.
When Vivienne was born, she was perfect. I called her my angel and I always was very careful about not hurting her ‘invisible’ wings, as I would joke with my mom.
All my life I truly feared giving birth to a child with special needs. How relieved was I to hear the doctor say “she is healthy” – words every parent longs to hear first. I thought “One down” and I felt foolish again to have been worried for 30 years.
The fear came back big time when she started slowing down in her gross motor development after the age of 12 month. When we were faced with the diagnosis in February of 2011, 8 month pregnant with our 2nd child, my world collapsed.
SMA Type 2, Spinal Muscular Atrophy, a recessive genetic and progressive disease robbing my child of physical strength … no treatment, no cure!
There was also my unborn child with the same probability of having SMA.This was almost too much to bear.
While still in the hospital a woman smiled at me. She was standing next to a child in a wheelchair with a severe physical as well as mental disability. I will never forget the words she blessed me with, although I didn’t want to hear them at that time. “NO matter what you’ve just heard, it WILL get better.”
Eventually it did.
I cried for three days – grieving the losses for my child and my family, saying goodbye to all those dreams and plans I have made for the future. Future turned into past and beyond that was darkness. No way out.
On day three I woke up with a ray of sunshine and a choice; the choice of creating a new future.
Ever since, my girls have been my guides. I finally found my purpose, or my purpose found me.
My experiences parenting my daughters Vivienne following her diagnosis of SMA Type 2 at the age of twenty-one months and her younger sister Lara, who has been born carrying the disease, but doesn’t show expression lead to the creation of Space2Thrive.
The rest is Future.
