I was standing in the bathroom staring at the positive pregnancy test on my mother’s bathroom sink. So many questions went through my mind about baby number three. The biggest being is three times the charm for a little girl. Emily was born on May 28th, 2015. She was 6lbs 1 oz, which was two pounds smaller than her brothers. We joke that we should have known then how different she was going to be.
Like most parents, we had our minds and hearts filled with hopes and dreams of what her life would be like as she grew. Slowly, we started to realize what we had planned might not come true. Emily was diagnosed with DYRK1A Syndrome when she was a year and a half old in December 2016. During the meeting with the genetic counselor, she mentioned the DYRK1A family and friends Facebook page and encouraged us to join to learn more about the diagnosis.
I sat at my computer at 2 o’clock in the morning, terrified of what I would learn if I joined the group. I knew I needed to learn more and meet other families who had little ones like Emily.
Shortly after joining, I saw the invitation for the family meet-up in Kansas City, Missouri 2017. I felt so alone even though I was surrounded by friends and family who adored Emily and loved our family. I couldn’t seem to shake this overwhelming sense of sadness and loneliness caused by Emily’s diagnosis.
My husband and I decided to attend and to be honest, we didn’t know what to expect. We thought we were going to meet other families, learn about DYRK1A and explore a new city we had never been to. Walking to the meet and greet we were now putting people to faces we had seen online. It was so overwhelming, both Brandon and I almost regretted our decision to attend. Then something happened that we did not expect.
It felt like we had known everyone our whole lives, and as if it were just a regular get-together to catch up. I needed this community more than I realized. I needed to be able to cry and have people understand why I felt the way I did. I needed to hear other people say their children had the same victories and struggles that Emily does. I needed to see other kids with DYRK1A to know everything would turn out okay. One mother, who now is a close friend, said even if Emily’s life doesn’t look how I originally planned, she will write her story as she lives it. It will be beautiful, and she will be just as happy. Her life will just be a little different. I often think of what she said. If we hadn’t gone to that meet-up, I wouldn’t have met her and I wouldn’t have found solace in her words.
We now look forward to the meetups every year to meet new families and to see the friends we made the previous year. It is so encouraging to see everyone with DYRK1A and see their growth and development over that past year. Meanwhile, we support each other in their losses and struggles. Our family has attended the last 2 meetups in North Carolina and Washington. We are waiting anxiously for the meet-up in Colorado in June 2022, http://www.dyrk1a.org/conferences. Woohoo! I’m so grateful for the meetups. I encourage anyone who is considering attending a meet-up, to go, you won’t regret it! We have gained much more than a community, new friendships; we found our family.