Day 26: Waiting for a Snowflake to Land on my Tongue (Guest Post)

The first time I ever spoke to Jennifer was on the phone, and we seemed to bond instantly on the grounds of one important commonality:  we are both parents of babies with Down syndrome who feel passionately about promoting acceptance, awareness and inclusion for our children.  

We hadn't been on the phone together long before I confessed that I had been learning all I could about Down syndrome and, especially as a new parent, I felt very passionately about the subject.  Almost in the same breath, her response got me right away:  "So do I."  I knew I had found a confidant, and that Jennifer was going to help me get involved with the association.

Jennifer at the DSAO Conference with her three boys:  Max, Ruaridh (pronounced Rory) and Owen

It was Jennifer who brought the idea of a Buddy Walk to life, and who chaired The Buddy Walk Committee; and it was Jennifer who was elected President of the Down Syndrome Association of Hamilton at the same time I joined the Board.  She has provided me with much guidance and support, and we have shared in some wonderful experiences and stories along the way.

There was one story in particular she shared with me that stood out above the rest.  This piece, which I am now honoured and pleased to share with you, is about patience and waiting for the snowflakes to fall.  Thank you so much Jennifer, for allowing me to share your writing and a piece of your journey with Owen.

April 19, 2013

Waiting for a Snowflake to Land on my Tongue

By: Jennifer Crowson

One of the first things I read when learning about having a child with Down syndrome was that he will do everything other children do, it will just take him longer. This was fine, or so I thought… but it was hard to avoid all the expectations of what your baby ‘should’ be doing and when. In our society, we are surrounded by developmental charts, by well-meaning family members, friends and strangers asking about what your child is doing now in comparison to a child they know of a similar age, and by websites reminding us where our children ‘should’ be at developmentally. I have always been the kind of person who likes things to be orderly and happen when they are supposed to, but my son Owen and a bright little girl have taught me the importance of patience.

When my son was four and half months old, I took him to baby massage class. Other mums surrounded me with their little ones aged three to six months. All of these lovely babies were smiling and giggling, some were sitting up and all were holding their heads up. My little Owen was doing none of these things. When we did tummy time to rub their backs, his little face was buried in the blanket and I could sense his frustration that he could not get his head up - and I am sure he could sense mine. I found myself comparing Owen to his peers, knowing this was not fair to Owen or myself. I left the class feeling deflated and did not return.

Then one day, just by chance, a girl of no more than six years old taught a good friend and me an invaluable lesson.

I was feeling a little frustrated and quite honestly sad. I wanted my Owen to smile, to giggle and to hold his head up, like other babies do. In my head, I knew this was the wrong way to think – but it was hard to avoid the way I felt in my heart. I went to pick up my older son from school and was standing in the playground talking to my friend who also has a baby with Down syndrome.

It was one of those beautiful wintery days with large snowflakes falling from the sky. We were talking about how we both needed to patient with our babies and things would happen - the smiles and giggles would come; they would sit, they would walk, they would run… we just needed to wait longer.

A young girl was clearly listening to us, as she calmly looked at us and said, “I know the meaning of patience. You have to wait and wait… and if you do….” With the most wonderful smile she beamed, “That snowflake will fall on your tongue”. She stopped me in my tracks. What a simple yet clever and insightful statement. She was right – we needed to be patient and those wonderful moments would come.

Owen turns one in two weeks. He now has the most beautiful smile, an infectious giggle, holds his head up proudly, he reaches for toys and is almost sitting on his own. With each new achievement, I think of the lesson that clever little girl taught my friend and I in the school playground - be patient and allow yourself to experience each spectacular joy that will come, when ‘a snowflake lands on your tongue!