Originally published in Express Woman, January 01, 2017
Held in a crushing embrace, which was actually a genuine hug by an adult female with Down Syndrome, I, in all my finery was embarrassed, traumatised and sad to say, a little frightened.
I was the maid of honour at my best friend’s wedding. The reception was held at the Hall in the Lady Hochoy Home. I was stepping daintily behind the bride holding on to her trail, when out of the corner of my eye I saw three people, two caregivers and the adult female with Down Syndrome.
In my mind this would have been a normal scene given where we were, had it not been for the fact that she suddenly burst forth as if set free from lockdown and made a mad dash for the wedding party. That’s when it happened.
I didn’t know much about Down Syndrome then and in the back of my mind maybe thought people who had it were a little crazy (why else would they lock them away in a home). Of course ignorance breeds fear.
Someone once said you always have a changed perspective based on where you are standing. Now as I look at my son and see a feisty, determined, thoughtful and happy young man looking to navigate his world, I am now embarrassed, traumatised and sad to say, a little frightened by my former ignorance and the thought of other people judging my son out of pure ignorance.
At the hospital when the doctor took me aside and whispered to me my son might have Down Syndrome he seemed embarrassed, afraid and saddened; behaviour I would not expect from a doctor studying pediatrics. Too many people have unfair labels for people like my son. Other parents have some real horror stories about how they were told by health care “professionals” about their newborns‘ condition.
My ignorance led to some tough months ahead! Coupled with postpartum depression I struggled through an overwhelming fear of the unknown. I even unfriended God. I went to church and prepared for the christening mechanically, still trying to figure out if God was joking. What was funny though, was the fact that I still prayed every day, although at times my prayers were very angry prayers.
Thanks to my mother, Sister Paula and Miss Holder for a great Catholic (spiritual) upbringing, I eventually sent back a friend request to God who I believe accepted readily because he had never unfriended me! I just had to open my eyes to recognise that fact.
In the midst of all this confusion, I still had my son who was a living, breathing and thankfully healthy little boy, who everyday, defied every limit and every label I had in my mind.
I also had a phenomenal support group in the form of my husband who even though might of been frightened; loved, listened and learned, my daughter who accepted and loved her brother from the start fully and openly and never saw any disability, my big brother who has always believed in me and thinks anything I do is great no matter what and my pediatrician, who held things together for me by being practical, thorough and convincing me the world had not come to an end and all I had to do was pay attention to the amazing miracle that was my son.
I continue to send thank you notes to God for this miracle and gift he has given me, which continues to bring me unspeakable joy everyday especially the days when he breaks every mold set for him because of his extra chromosome. I am beginning to believe this extra chromosome is the joy button that all the rest of us unfortunately lack and maybe we are the ones that aren’t “normal”.
I now spend part of my free time as a board member in support of a group called the Down Syndrome Family Network, whose mission is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome through research, information and support.
We have a website, a presence on Facebook, we host several workshops a year, a phenomenal conference held in March and the Buddy Walk held in October. I encourage all new parents and even the ones with older kids to get involved. It is not about handouts but changing the mindset of fear bred by ignorance through awareness.
The system unfortunately does not help. It is a constant struggle for the authorities to get involved and provide us with a chance at equality. Parents need to fight for change.
Some important lessons I have learned are – raising a child with Down Syndrome is not without its challenges but raising any child is not without its challenges.
Every child simply needs to be recognised as any individual who has different needs, wants, likes and dislikes but has the right to love, life and happiness. Don’t hide them away, let them explore their world and the opportunities as much as you would any child. Listen to the right people, you know who they are!
They are the ones that recognise that your child has that right to love, life and happiness and would never encourage you to limit your child.
“Like typical kids, they come in all shapes and sizes. Some learn faster, some slower. Some are silent and some vocal. Some crawl and walk earlier than others and some, take their time. But they are all beautiful. All gifts from heaven above.” Rory Feek, a father with a gift.
The production of the Lioness series, highlighting the experiences of 12 mothers, is supported by Cause an Effect, Angostura Limited, First Citizens Bank and A Very Special Disabilities Forum.