How Finding My Down Syndrome Community Has Made Christmas Merry

Jenny with her daughter in 2010 and 2019.
Jenny with her daughter in 2010 and 2019.

The first time I met the Down Syndrome Association of Delaware was at their annual Christmas party. I held my new baby out in front of me like an all-access pass as I moved toward the crowd of red-and-green-decked strangers. I was flanked by my equally festive entourage which included my husband, my parents, my brother and my sister. Along with our gay apparel we donned trepidation. Will they like me? Will I like them? Can they help? How? What’s next? Are those homemade sugar cookies on the snack table?

As nervous as I was though, I trusted that all these people would be my new friends. A month or so prior to the party, I shared the news that my infant daughter has Down syndrome. We didn’t have a prenatal diagnosis so it was a surprise to all of us. I received many messages of love and encouragement in return.

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One message in particular was very helpful. It was from my coworker’s wife who had a baby just a few weeks before I did. My friend and I shared a lot of pregnancy stories over the cubicle walls those nine months. His wife worked as a special educator and when I told him the diagnosis, his wife contacted me by email right away. Her letter eased some fears and she introduced me to people-first language. “The Down syndrome community is tight,” she said. I’ll never forget that. She wrote that I’d have no problem finding support and making friends with other families with Down syndrome.

Up to this point, I was more the type that wouldn’t want to be in a club that would have me as a member, but nothing in my life seemed as substantial as it did now. Finding my way in this new world was the most important thing I’ve ever done. I’ve considered though that my change in thinking may have occurred even if my daughter was a neurotypical baby. Parenting is pretty humbling.

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The Christmas party as it turns out is the perfect time to meet. December is the premier holiday season and new babies are worth a massive celebration! So many fellow moms greeted and hugged me. They congratulated me on my new daughter. They loved her name and told me how beautiful she is. Fathers introduced themselves to my husband; they all shook hands, solidifying their new camaraderie. My whole family was welcomed. We ate sweets, sipped hot chocolate and watched the children play. The room was a swirl of laughing, smiling kids. My eyes darted from face to face to see which had Down syndrome and which were typical siblings. I couldn’t keep track and it didn’t matter. The reassurance I was looking for was apparent. My daughter would have fun in this life, she would have friends and feel like she belongs, even if only in this community.

The party itself is a thing of altruistic beauty. It’s usually hosted by a church, and for the last several years, a prominent Wilmington Catholic school has generously hosted. Man, is it grand! There are no less than a dozen Christmas activities for children, from cookie decorating to crafts to games. All of it is run by a flock of cheery students donating their time on a Saturday. The young women wear bright holiday sweaters and leggings, elf hats and silly headbands. One teen dresses like a life-size felt Christmas tree. It cracks me up every year. Honestly, I can’t say enough about these kind and sweet volunteers. This is a beautiful gift they offer and it seems like they enjoy it too.

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The school auditorium is transformed into a busy Christmas wonderland with music and decor. Santa hands out gifts and listens to wish lists while Mrs. Claus reads stories in the adjacent library room. Kid can take an elevator ride (my daughter’s favorite) to see a magnificent Christmas village train set. We are charmed by this scene every year. These students make all of us feel most welcome. They play with our kids and help them create ornaments which is a treat for the parents who are now free to catch up with each other, trade stories, meet new parents and continue the tradition of support.

This Christmas party is a safe place where we don’t have to worry about explaining why our child can’t walk yet, has difficulty communicating, requires dietary restrictions, accidentally spills too many gumdrops on the gingerbread man, or why we might have to step away if the room gets too noisy. We don’t waste time with judgment; we dwell on the solutions and celebrate accomplishments.

The support I sought all those Christmas parties ago, I got. Over the years these families have helped me in innumerable ways, such as defining technical terms and navigating medical processes, making contacts in the community with doctors, educators and therapists, offering tips early on for breastfeeding and diapering on up to today’s needs like keeping her attention on her math homework. They share learning tools, experiences, warnings, encouragement. We connect on Facebook, through email and text. My challenges become our challenges and we rejoice in success together. It’s really how community should be, don’t you think? It took having a child with Down syndrome to put it that into focus for me.

This practice of asking for help and leaning on a community has aided me so much since, in more ways than just parenting a child with Down syndrome. If I hadn’t learned to trust as I did with the Down Syndrome Association, I don’t know how things would have gone when I experienced a pretty major medical change two years after that first Christmas party. They laid the foundation for me to ask for personal help.

I kind of feel bad for people who don’t have a Down Syndrome Association. It’s my parenting-in-general support group too. Many of us have more kids than just our child with DS and I get help with that as well. We talk about issues like how to get kids to eat vegetables, establishing routines, or what’s new and appropriate on Netflix. Fellow moms have become some of my best friends. They cheer me on, give me solid advice and stand by my side. They’re always just a text away. We celebrate birthdays, seasons and holidays together year-round. They are my club that I never knew I wanted to be a member of and we are indeed tight.

The Down syndrome community, and specifically my local DSA of Delaware, sparked changes in me like nothing else in my life up to that point. Asking for help, discerning advice, and cultivating trust — maybe these changes are just part of the maturity that comes with age, maybe it’s wisdom that coincides with parenting, or maybe it is the magical mysterious quality that comes with Down syndrome that makes everyone else think “oh they’re always happy.” (They’re not, by the way, and neither am I.) We often have a joy for life that’s hard for some to obtain. I think it’s really about community. I think this kind of support group taps into a deep human need for genuine connection.

The magic of Down syndrome is much like the magic of Christmas. You can’t put your finger on just one thing — it’s all the things! It’s all the people, especially the children. It’s obstacles and success. It’s trust and compassion. It’s love and perseverance, beauty and kindness, generosity and selflessness. It’s bringing people from a vast spectrum of life to celebrate a single extra chromosome and it’s one the best feelings life on this planet has to offer. I’m a very lucky mommy. Happy Holidays, friends!

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