CDSS Awareness Leader
Dear new parents,
Congratulations on the birth of your baby! It is okay to be a bit sad and scared, but I hope by telling you a bit about my life, you will feel better. My name is Paul, I have Down syndrome and I am the Awareness Leader at the Canadian Down Syndrome Society.
I have a great life and I feel very proud of it. It is important as a parent to have high expectations and to give lots of support to your child. Growing up, I had a lot of support and love from my family. This came from my parents and my sister.
When I was young, I played sports and went to school every day. I learned math, reading, writing, and singing. I had a lot of fun learning and growing. I went to many schools and enjoyed them all. After high school I went to Mount Royal University and Columbia College. I went to university because I wanted to learn the things that I would need to get a job in the future. I did learn many important skills that helped me get many different jobs. Now, I work at the CDSS office. I was also valedictorian at my graduation from Columbia College!
I live in an apartment with a supportive roommate. I am able to get to work on my own. I am independent – I have some help, but I’m able to do lots of things on my own.
I was able to accomplish many great things in my life, and will continue to. Having Down syndrome did not stop me from doing all the things I have wanted to do. I want people to understand that I can do what others can, but sometimes need a little extra help, or need to do it in a different way.
If you want to know more about me or have any questions about people with Down syndrome, please check out my blog.
All the best,
CDSS Awareness Leader
Tara (Pip’s momma)
Happy Soul Project
Dear Lucky Ones,
If you are reading this letter you, somehow, someway are on a similar path that I’ve walked. A path that, maybe, probably, wasn’t one you wanted to go down. A path that looks terrifying, uninviting, and not at all what you expected.
If you are reading this letter you, somehow, someway, have a baby with Down syndrome.
When I found out I was having a little girl, I let my dreams build up, my expectations soar, and my mind ponder all that she would be. Then three days after she was born, a doctor looked at me with the saddest eyes possible, eyes that will forever haunt me, and said, “I’m sorry to be the one to tell you this, but your daughter shows many signs of Down syndrome.”
Wham-Bam-Slam-Slap! Right across the face; that’s honestly what it felt like, as I was utterly stunned. Everything I ever hoped for my daughter, for my little family, for our life together seemed to die in that moment. It was as if in his words, that doctor took the entire happiness out of our new baby.
I’ve never wept like I did in that hospital bed. I’ve never cried for something I wished wasn’t true so hard; I’ve never begged fate to undo what couldn’t be undone. I was literally shattered in devastation.
The following few days were a whirlwind of medical appointments to rule out other complications associated with Down syndrome. I couldn’t tell you one thing the doctors said during that time. My mind was in such a weird space, almost as if I was in the room but not truly believing that this was even happening, that this was our life, that this was our daughter.
But a fierce, protective love was growing inside of me even though I didn’t know it. In one appointment with a genetics specialist and a counsellor, my mind drifted as they talked about the makeup of chromosomes, FISH test and a wide variety of spectrums, until the doctor said, “For your next baby, we can do testing and prevent this.”
Right there, a few days after our daughter Pip was born, the tone of how people, doctors & others would value her life was set. In a way, that kind of made me love her more.
Because you see, that genetics specialist doesn’t know what I now know. A diagnosis can’t predict the extraordinary love you will have for your child. A genetic counsellor can’t understand the fierce value you place on your baby’s life. A friend might not realize that your baby is an individual made up of so much more than a diagnosis. A stranger can’t possibly know the outrageously, beautiful insight you get to experience by seeing life through the eyes of someone with Down syndrome. An extra chromosome doesn’t mean the end of what you imagined. It almost means a life more beautiful than what you ever could envision.
But it takes time to get there, this path of ours is meant to be different. It is okay to take time to grieve what you envisioned in a child, from that you will grow. And my hope for you, friend, is that from this grief you will then blossom. You will find your own way, glimpses of hope, moments to celebrate, tears to shed, anger to let go of on this journey…
For my husband, the meetings with the doctors, the New Parent Package from the Canadian Down Syndrome Society, and reading as much information about Down syndrome as he could, helped. For me, it did not. I wanted what doctors, organizations, and articles couldn’t tell me. I wanted a look inside other parents’ lives, perspectives on how it all has changed them, and what to expect.
While I was scared to look, and to discover what I feared, I was instead pleasantly surprised.
The more I looked, minus what Google or Wikipedia said about Down syndrome, the more I discovered what a unique and special diagnosis this really is.
For me one of the hardest things after finding out Pip had Down syndrome was telling people. I didn’t know how to do it, how to react to strangers, what to say, what not to say. So I started by sitting down one night a few weeks after Pip was born and through tears, wrote out some pretty raw and emotional thoughts on her diagnosis; and from there my website Happy Soul Project started.
But it’s one thing to share your thoughts behind a computer and another to be out in the world. A moment that really changed things for me was when Pip had her first surgery at five weeks old (she is one of the ones who has numerous complications associated with Down syndrome; congenital cataracts, congenital heart defects, hypotonia, hypothyroid). I had only written about Down syndrome on Happy Soul Project. So on this fated day I was down in the hospital gift shop and an older lady behind the counter asked why I was there. I explained Pip’s surgery and added, “and she has Down syndrome.” It was as if by finally saying it out loud, I had accepted it.
The lady dropped everything, came around the counter, grabbed my shoulders, looked intently in my eyes and said “You are so lucky”, to which of course, I thought she was crazy. Here I was scared to say it out loud, unsure of how to tell people, almost embarrassed because of it, and she was telling me I was lucky. She went on to explain through genuine tears that she had a brother with Down syndrome and it was the absolute best thing in her life. It made her who she was and kept her entire family together. He was the joy the world needed and that I was so lucky to have that.
Fearing an “I’m sorry”-type comment, only to be given the exact opposite, changed how I viewed a Down syndrome diagnosis and how I will respond to any new parent moving forward.
In that moment I realized she was so absolutely right. I had been looking at it all wrong. Like I needed to learn to accept my daughter for her differences, when really I needed to learn how to celebrate and be blessed by them.
Changing my perspective has changed my life and I’m sure the life Pip is going to have. Now it’s my mission to prove to the world that we really are the lucky ones. That is what now fuels Happy Soul Project, to show others that the unnecessary, negative stigma behind a Down syndrome diagnosis needs to change.
I wish there was a way I could go back and save all those tears I shed when I found out Pip had Down syndrome. But I also think that grieving the loss of what I had envisioned for our future gave room for expecting the unexpected. Pip is not what I wanted in a daughter until I realized I never knew I needed this kind of love.
So with that, take this letter as if I’m shaking your shoulders like that lady did to me. Actually, I’m wrapping my arms tightly around you, I’m holding you tight as your cry, scream, and work through your grief, begin to see the beauty in the path you’ve been chosen to walk and letting you go to smile at you and welcome you to the club, my friend…
It’s exclusive and until you experience it, you don’t understand it…
We’re the lucky ones…
Tara (Pip’s momma), Happy Soul Project
During the COVID-19 crisis, the Canadian Down Syndrome Society is here to serve its membership, and anyone who may need access to information and resources about Down syndrome.
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