As we come to the end of October, which is Down Syndrome Awareness Month, I’m often reminded of one of the most important parts of our parenting journey: our village. As I scrolled through social media this month I saw post after post of really inspiring messages from other families that are on the Down Syndrome adventure just as we are. While reading these beautiful posts I was reminded of something very important: I’m not alone.
I remember sitting in the pediatrician’s office as she told us the results of Vera’s blood tests at birth. There were probably a million thoughts buzzing through my head as she told us the diagnosis. Going home that day, I remember feeling very isolated. I knew we always had our friends and family to offer us support, but I couldn’t shake the feeling that we were suddenly going to become the family that “can’t do anything” anymore. I feel like there is such a stigma that follows parents of children with special needs: like their children are just going to be too much trouble for them to even have time to live their lives normally. Would we become part of that stereotype? We quickly began to realize that we would not.
Finding Our Community
As soon as we told our loved ones about Vera’s official diagnosis we were immediately met with tons of support. We had family and friends sending us articles about amazing people with Down Syndrome, telling us about people they know with Down Syndrome, and most importantly just spending time getting to know Vera. The love we felt was overwhelming. Two years into the journey and those same family and friends are always staying up-to-date with Vera’s accomplishments, always offering support, and still sharing all of the wonderful stories they have of others with Down Syndrome.
Within a few weeks of Vera’s birth, we were referred to a school called Stepping Stones. It is a school for children with Down Syndrome that starts with Early Intervention services. The school goes up to age 10. I was so anxious to get Vera started there because I so desperately wanted to meet other families that also had young ones with Down Syndrome. Boy, did we get lucky! Within the first few sessions there, we made friends with an amazing family who we are still friendly with today. From there, those connections grew into joining Facebook groups and following other families’ Instagram pages. Social media has a lot of negatives, but this is one of the few positives that it provides!
Making the Right Connections
Just within the last year, we’ve connected with so many more families that are on the same adventure as us. I’ve found other people that I can ask questions to. I’ve found other people who I can relate stories to. I’ve found other people who know the many struggles that we’ve been dealing with. What makes me feel even more fortunate is that the love and support that we get doesn’t just come from the other Down Syndrome families. Our friends and family that we’ve known for most of our lives have been so involved in Vera’s development. You have no idea what a difference this makes as a special needs parent!
True support comes from the people who are there for you not just for the celebrations, but when things get rocky. There have been more times than I can even count when I’ve cried, become frustrated, and wanted to give up on so many parenting moments. Trying to conduct therapy sessions with a toddler during a pandemic is nothing short of impossible, but the encouragement that we constantly receive from the people we love is what keeps us moving. It’s what keeps Vera moving.
Very recently, our pediatrician reached out to me and said she has a new patient with Down Syndrome. She wanted to know if she could forward them my number so they could call with any questions or even just to talk. I was beyond thrilled! I remember my first phone conversation with that mom lasted a few hours. I haven’t spoken on the phone that long since I was a teenager! We just had so much to talk about. There were so many stories to share and encouraging words to give her. We are thankfully still in touch, and she even brings her son to Stepping Stones. It is connections like these that make the journey all the more rewarding.
I know it sounds cliche to say “it takes a village” but I truly, truly believe in this statement with every fiber of my being. There is no possible way that Ben and I would be able to raise our kids and help Vera meet her milestones without the people around us. Her therapists, our family, our friends, our new-found Down Syndrome family: they all are what keep us moving when things get tough. As we close out Down Syndrome Awareness Month I want to thank all of you and I also want to remind other special needs parents out there that you are not alone. We see you, we love you. You got this.
