World Down Syndrome Day

On March 21st, we celebrate World Down Syndrome Day!  

You may have pulled out your mismatched, colourful socks or plan to share content encouraging inclusion to celebrate (yay!) 

This year, The Modern Mama Hub Blog is excited to feature Sarah’s experience as a mother to her little boy, Keenan who was born with Down Syndrome. By sharing Sarah’s story, we hope to raise awareness, showcase the love and strength a child with Down Syndrome brings those around them, hope other parents to a child with Down Syndrome might feel seen and to foster an inclusive mindset.  

Keenan is Sarah’s second child. With Sarah’s first born, she experienced postpartum depression. Sarah recalls postpartum depression hitting her the second her first daughter was born. Sarah felt thankful that she was able to get the support and help she needed to get through it. Although, fear surrounded her that she would be hit with it again with Keenan. 

Little did Sarah know, it was a different grieving process she would come to experience. When Sarah and her husband welcomed sweet Keenan, they received what is referred to as an “at birth diagnosis” of Down Syndrome. Meaning, neither her or her husband were aware prior to their son’s arrival. 

Sarah shares that she had done the standard prenatal testing. The results of the tests never indicated a risk of Down Syndrome. Sarah and her husband were left in total shock when Keenan was born. 

When Keenan was born, Sarah and her husband weren't told right away that Keenan had features indicative of potential Down Syndrome either. 

The Nurses handed Keenan to Sarah and her husband so that they could have some time alone with their son. The Nurses mentioned a Paediatrician would be coming in shortly to chat with them. 

When the Nurses cleared their room, Sarah and her husband looked at Keenan. Really inspecting him. She remembers neither she or her husband wanted to point out certain features their son had. Sarah adds “Who wants to say: Hey, do you think our son looks like he has Down Syndrome?" 

Sarah says that finally, one of them mentioned it. She says she can remember opening her phone and googling “physical features of newborn with Down Syndrome” Sarah flipped through Google’s checklist. It quickly became obvious to Sarah and her husband that the potential for Down Syndrome was there.

Sarah said there were family and friends of theirs who knew Sarah was in labour. Naturally, they wanted updates. Sarah says both her and her husband were intentionally ignoring their messages and calls - Avoiding sending pictures of their (extremely adorable) newborn. They needed some time just the three of them to soak the moment in. 

Eventually, the Paediatrician knocked on their door to come in and speak with them. Confirming their suspicions that Keenan likely had Down Syndrome. 

Sarah thinks back to that official moment of confirmation. She said “Initially, there was a lot of fear of the unknown, denial, and grief. I spent a lot of time grieving the baby I had imagined I would give birth to. Along with the new life I was being thrown into. Parenting a child with Down Syndrome? I questioned my capability. I wish I could go back in time and tell myself how extremely lucky I was to be given this gift, how I was more than capable, and more importantly tell myself it was okay to grieve.” 

When asked if Sarah’s perception of Down Syndrome had changed since her son was born she shares “I don't think my perception of Down Syndrome has changed. However, since having Keenan, my perception of the rest of the world certainly has. I didn't experience any sort of discrimination or marginalization growing up. Naively, I thought that as a society there was so much progress. I was ignorant of the way people with disabilities (and other minority groups) still frequently face discrimination - Not only by everyday people, but also by the way society is set up. Having Keenan has really been an eye opener for the challenges marginalized groups still face, every day.”  

As most parents can attest, having a baby alters many of your pre-baby relationships. I began to put myself in Sarah’s shoes and consider how it may or may not be an added influence to the relationship evolution part of the parenthood process. 

Sarah shares “Initially, I had a hard time feeling connected to a lot of my mom friends. I harboured some resentment when I saw their babies the same age (sometimes younger) surpassing Keenan  - This made me avoid those friendships. However, the amount of support and love our friends and family have shown us has never slowed down. I can reach out to any of them and talk openly about the positive and negative emotions I am feeling surrounding this parenthood journey - Totally without judgment. Watching our friends and family encourage relationships and connections between their children and Keenan has been amazing to see. We have been able to cherish the people in our life who really matter, and separate ourselves from those who don't. I don't think that is exclusive to parenting a child with a disability though - I think becoming a parent sheds new light on all of the relationships in your life, good and bad.”  

When Sarah considered what the biggest joys she has experienced as Keenan’s mother are, she said it has been “Caring less, slowing down and enjoying the journey. Having Keenan has truly made me appreciate the smaller things in life, and stress less about the big stuff. Celebrating "inch-stones" instead of milestones. A new appreciation for everything in life, is without a doubt the greatest joy having Keenan has brought. Keenan didn't learn to walk until he was 4, he still needs support with feeding and is nonverbal - These things don't get to me. I've learned that allowing your child to grow at their own pace, and giving them the tools to thrive is so much more important than stressing over every milestone. While watching him walk around the house is exciting, and still feels extremely surreal, it was something I had learned not to stress about, and that is a huge gift.” 

When Sarah thinks back to some of their challenges as Keenan’s parents she says “While day-to-day life with Keenan is pretty easy, he is mostly easy going, happy and goofy - There have definitely been challenges. During the early years especially, there were a lot of in-home therapies (speech, physiotherapy and occupational therapy) There were many times this was extremely overwhelming, and a lot of the time I struggled to find my identity as his mom, I felt more like his caregiver or therapist. There are times where we have to think about what the future will look like for Keenan  - Where will he live as an adult? Will we outlive him? How can we make sure his sisters don't carry these worries and burdens as well? These things weigh on me from time to time but, they are now things I know to plan for, but not stress about.”

I can’t imagine the weight some of those thoughts must have held for Sarah and her husband at times. When Sarah reflects on what she would share with another parent who has freshly received their child’s diagnosis of Down Syndrome, she says:  

- Allow yourself to feel the range of emotions. Grieve if you feel like grieving, crying, or celebrating. Whatever your feelings are, allow them. Don't feel guilty. 

- Take care of yourself, the burn out of parenting is real, and having a child with a disability definitely adds to that.

- Take your time to learn about Down Syndrome, don't feel like you need to become an expert overnight, there is so much information out there it can be extremely overwhelming. Slow down and let yourself digest it. 

- Try to find mom groups out there, I have been so lucky to form connections with a couple moms who have children the same age as Keenan with Down Syndrome, and having those moms to connect with, vent to, laugh with - that has been extremely vital for me. 

- Take advantage of all of the support and services you can get.

P.S. Don't be afraid to call people out for using slurs, you aren't being too sensitive - Nobody should be using the "R" word anymore

When Sarah considers what common misconceptions about Down Syndrome exist that she wishes she could change she says “Assume a person with Down Syndrome is just as capable of doing something as anyone else. The abilities of people with Down Syndrome range just as much as they do with the general population. So unless told otherwise, assume they can do anything. Include them in any way you can. If you see a child at the park with Down Syndrome, and your child is curious (as children naturally are) talk to the parents, allow your child to ask questions. That is a huge first step towards a more inclusive world. I can't speak for all parents, but I strongly believe that most parents would prefer your child ask some uncomfortable questions, or accidentally use the wrong terminology - than avoid interacting with their children out of fear.” 

Sarah concludes “World Down Syndrome day has been such an important day for our family, this is our 4th year celebrating. While people are aware of Down Syndrome, it is so important to have a day where we can celebrate and spread the message of inclusion. Inclusion, inclusion, inclusion. That's what this day is all about!” 

Raising a child is a challenging journey, but it's also one filled with unimaginable joy and self growth. Through the ups and downs of her journey as a mother to Keenan, Sarah has discovered a deeper sense of gratitude, broadened perspective on life, sense of community and love. 

As we look to a more inclusive future, it’s clear that every step of this journey is worth it. When we develop a greater sense of empathy and understanding towards others; we’re left with more kindness and compassion. When we have an appreciation of how we all differ and look for ways to include one another; we’re left with more creative thought patterns which result in innovation and better ways of doing things. When we look at the person, not their diagnosis, we open the doors for everyone to thrive by finding ways we can include others versus assuming that they can’t be included and therefore can’t contribute or participate. 

On World Down Syndrome Day, let’s remind ourselves of the importance in continuing to advocate for a world that celebrates all abilities. Together, we can create a more inclusive and understanding society. Together, we can foster and spread kindness! 

“There is no greater disability in society than the inability to see a person as more.” - Robert M. Hensel

To learn more please visit:

World Down Syndrome Day 

Inclusion