When I think back to my pre-Vera life, the date March 21st never had any real significance to me. It was just another date in the very long month of March. After Vera was born, however, I remember reading a lot of social media posts about this once-arbitrary date. March 21st is World Down Syndrome Day. Why March 21st? When someone has Down Syndrome it means they have three copies of their 21st chromosome. March is the third month of the year. We celebrate World Down Syndrome Day on the 21st day of the third month. Every year we try to make a big deal out of the day: we go out to dinner, we wear our mismatched socks, and I even organize activities at the school where I teach. I love how this date has suddenly become such a beautiful recognition of a special group of people. I only wish I knew about it much sooner!
This year, in honor of World Down Syndrome Day 2021, I wanted to reach out to other parents of this wonderful community. I wanted to hear about different experiences and perspectives on raising a child with Down Syndrome. Through social media connections (one benefit to social media), over the last several years I have been able to be in touch with some really amazing people. For this latest post, I want to highlight some of the other parents I’ve had the opportunity to connect with. I want other people to understand that no one experience is alike. Every parent has a different story to share. I hope to bring these perspectives into view so that others can see just how wonderful the Down Syndrome community really is.
Sierra and Ella Monroe
First, I’d like to introduce Ella Monroe and her mom, Sierra. I had the chance to connect with Sierra through the Down Syndrome Diagnosis Network (DSDN) and have remained in touch with her in a group chat with other DS moms. She and her family live in California. Ella Monroe was a birth diagnosis, just like Vera! I had the chance to ask Sierra a few questions about her experience as Ella Monroe’s mom. Here is what she had to say:
What has been a challenge for you as a special needs parent?
“Navigating through the extra involvement of all of the systems (therapies, Early Intervention, school, medical, rights in our community and state.)”
What is one unexpected surprise that has come from your child’s diagnosis?
“Life is about love and the deep appreciation and connection of all humans no matter their differences, special needs, or challenges. Live, love, and breathe life. The Down Syndrome community is beyond amazing, strong, and full of a lot of people that feel like family.”
I have to agree! One of the biggest surprises for me was how connected and supportive the Down Syndrome community truly is!
What advice would you offer to a parent just receiving a Down Syndrome diagnosis?
“Do not be afraid. You are embarking on an amazing adventure. It may be timed differently than some but every milestone, no matter how big or small, is a sweet reminder to appreciate all of the blessings of life.”
April and Bryson
I was able to connect with April from Illinois through a great program called Lucky Pals. Lucky Pals was started by two wonderful moms who have children with Down Syndrome. It was created as a way for siblings of special needs children to connect as pen pals. My older son, Miles, was able to connect with April’s older son, Bradley. They’ve sent each other letters and it has been such a fun way to make new friends. April is a mom of three adorable children. Her youngest, Bryson, was born with Down Syndrome. April has a unique perspective on special needs parenting. Bryson has a ng-tube (feeding tube). He also had open-heart surgery after he was born. I had the opportunity to hear about her experiences. Bryson was diagnosed with Down Syndrome during April’s pregnancy.
“Our challenge has been the isolation of the pandemic: through diagnosis, birth, open-heart surgery, 40 day NICU stay. [There were] times we needed physical hugs and support. [There was] also the physical absence of our families and friends through the celebrations of inch-stones and milestones that Bryson was meeting.”
April also shared her experiences with ng-tube feeding with Bryson. This is something I had never experienced with Vera, so it was a whole new world for me. I was interested in learning a little bit about the process. Bryson is currently weaning off the ng-tube and April gave some insight into how that is going.
“I think what I’ll miss the least about Bryson’s feeding tube is all the math. Each feed consists of anywhere from 4-7 math problems, measuring, estimating…second-guessing. In normal times, I don’t mind math…but in the postpartum fog as a mother of three with a medically complex child during a pandemic…I’m tired of the endless calculations. For the first few months home, caring for Bryson sometimes felt less like mothering and more like a science fair competition. Am I allowed to say that? I have a calendar full of data on Bryson: weight, length, feeds amounts orally and through the tube, notes on fortified breast milk vs. thickened formula, offered amounts compared to consumed amounts, medications. I am so exhausted. The part I will miss the least about Bryson’s feeding tube is the math.”
That excerpt was taken from April’s Instagram post that she made during Feeding Tube Awareness Week. I had the opportunity to learn a lot about why a child needs a feeding tube and what the process consists of. As you can see, it is a lot of work! April is truly one amazing mama!
Jennifer and Jacorey
April was kind enough to connect me to Jennifer and her sweet boy, Jacorey, on Instagram (again, social media working its magic). Jennifer and her family live in Texas and Jacorey Eli is 9 months old. I reached out to Jennifer and asked her to talk a little bit about her experience as a special needs mom.
When discussing what has been a challenge for her, Jennifer said,
“Not worrying about the future, enjoying each day as its own. You can stress yourself out thinking about what could happen.”
I was glad that she mentioned that because I find that to be one of the things that connect all parents, even those who do not have children with special needs. We always worry about what the future holds for our kids. This is such a normal part of the process. I think, though, that when you have a child with Down Syndrome, that feeling becomes only more amplified. What does the future have in store for these children? One can only wonder…and hopefully not stress too much about it!
Jennifer explained a little about something that surprised her during her Down Syndrome journey. She said,
“We enjoy the little things! Everything is celebrated, not just for Jacorey, but for everyone in our family. A lot of times we just assume everyone can do things but that’s not true. So enjoy it all!”
Aaron and Alice
Aaron, his wife, Leighna, and their daughter, Alice, are from Chicago, Illinois. April was once again helpful in connecting me to Aaron through Instagram. I had the chance to reach out to him and ask him about his and Leighna’s journeys in parenting beautiful Alice.
When discussing the challenges of becoming a special needs parent, Aaron said,
“A challenge that presented itself from the very beginning and still exists as we approach her 5 month birthday is the inability of some friends and family members to openly discuss the complexity and nuance of Alice’s diagnosis. When we discuss the reality of our journey and the challenges that lay ahead, people say things like ‘Oh, don’t say that’ or ‘You don’t know that for sure’ and it minimizes not only the significance of Alice’s diagnosis to her identity but also the acknowledgement that she requires and deserves different considerations than typically functioning children. This behavior also reinforces that Down Syndrome has a negative social stigma and delays the awareness, acceptance and progress that the community deserves.”
What Aaron said really resonated in my mind. I think it is very easy sometimes for people to use more dismissive language as a way of not acknowledging the reality of the situation. Aaron went on to discuss some of the surprises he and his wife have encountered with Alice.
“An unexpected surprise that has come with Alice’s diagnosis is the amount of purpose and personal development that it has prompted from some of our family and friends. Whether it be research, conversations, or advocacy, our friends and family are reporting new connections and perspectives on life and the world. People are realizing that they have more in common with the Down Syndrome community than they realized and are developing more empathy for not only people with Down Syndrome but other people with disabilities as well.”
Yes! This! The amount of awareness that has grown with not only myself and Ben, but our family and friends has been life-changing! Having a child with Down Syndrome opens up so many conversations and really allows for a growth in mindset. This entire experience has opened so many doors for advocacy and fighting for change.
Krishana and Ada
I met Krishana the same way I had met Sierra: through the Down Syndrome Diagnosis Network. Krishana is also part of our DS moms group chat. Krishana and her husband live in New Jersey and have fraternal twins who are 2 years old. Ada is one of the twins and was born with Down Syndrome. During pregnancy screening tests, there showed increased chances that either Ada or her brother, Alain, could have Down Syndrome. Ada wasn’t officially diagnosed until birth.
When talking about one of the biggest current challenges, Krishana says,
“Hands down- child care. As a full time working mom, I almost never feel like I have all of the bases adequately covered.”
I think this is so relatable for so many parents, especially when there is a child with special needs. As a parent, we want to make sure we find people who can provide the right kind of care for our kids. Being a full time working parent while juggling childcare is no easy task!
Krishana also discussed some things that surprised her about Ada.
“Ada is so tenacious. Sometimes I marvel at her perseverance. She keeps rising to meet challenges; she keeps pushing. I guess that’s surprising, because from the moment my screening test results came back, the overwhelming message was, ‘lower your expectations’. Ada is constantly blowing my expectations out of the water.”
This is so important to remember about our kids. We never have to set expectations low because our kids truly are remarkable. They have such wonderful ways of wowing us!
The Magic of Down Syndrome
As we celebrate World Down Syndrome Day, we have the chance to really recognize what makes our children so wonderful. We have the opportunity to really understand what makes us, as parents, The Lucky Few. As I communicated with all of these wonderful parents, I’ve learned about all of the challenges and triumphs they’ve experienced. They also had some insightful advice to offer to parents who are just receiving a Down Syndrome diagnosis.
Jennifer had this to say:
“It’s okay to grieve and be upset and sad and everything in-between. It takes time. This might not be the journey you thought you were going to be on and that’s okay. This journey is one you never knew you needed. Your baby will bring you so much joy and love! The smile they give will warm your heart. The twinkle in those almond-shaped eyes. The way those hands with the Palmar-Crease hold onto your fingers so tight. I could go on! We are truly part of The Lucky Few. You have an elite team of moms and dads who are here to help you.
April said,
“There’s no handbook, but there are hundreds of families to ask for support. Get connected to organizations and nonprofits that provide tremendous support throughout pregnancy, birth, and beyond (organizations like DSDN, NADS, Jack’s Basket, Brittany’s Baskets).”
Aaron also had insightful words to impart on new parents:
“First, keep in mind that your feelings are real but not necessarily true. Allow yourself to experience emotions but don’t get stuck in them. Second, follow #downsyndromeawareness and #downsyndrome on Instagram because it will help you gain positive perspective and community without having to directly reach out to any people or organizations. Finally, sign up to receive ALL of the baskets! Seriously, you will be sent books, handmade items from community members, and useful resources from the people that care and understand the most!”
Finally, Krishana was able to weigh in on what new parents should look forward to.
“No one, not even the experts, can possibly know everything about your child based on a genetic test. A Down Syndrome diagnosis is only the beginning of discovering who your child is. I LOVE getting to know Ada and finding ways to help her flourish.”
This was such a fun post to write. I really enjoyed getting to know these other parents and hearing about their journeys. I think that the lesson we can learn from this is that as parents, we all want the same things for our kids. We all have the same end-game in mind. We just all have different paths that get us there. I want to personally thank all of the parents who let me interview them for this post. They shared a lot of personal stories and insight into their lives and I very much appreciate their willingness to participate!
March 21st takes on a whole new meaning now that Vera and all of these beautiful children are part of the world. I’m sure a lot of parents out there are right now learning about the importance of this day and realizing its role in their new Down Syndrome adventure. Wishing everyone a Happy World Down Syndrome Day!
