Saturday I had the great privilege and honor of spending the morning with parents of babies and toddlers with Down syndrome. It was the Down Syndrome Guild of Greater Kansas City’s quarterly new parent breakfast and we hosted 65 folks! There weren’t 65 babies – we had parents, grandparents, babies and toddlers. One of the things I miss most about my role with the Down Syndrome Association of Memphis and the Mid-South (DSAM) is time with new families and toddler families. In my many roles with DSAM, I had the great honor of meeting almost all of our new families. It energizes me to be able to be there and walk along the journey with these wonderful families. I do meet many of the KC families because my role is just different here. That’s okay – another leg of my journey. We have great staff and a great parent-to-parent program here meeting the needs of those very families. That said, Saturday was invigorating for me and a gift to me.
As I sat with a group of about nine families of babies with Down syndrome, I couldn’t help but to think back to our first days in early intervention and parent support. I told the families on Saturday that I might not know exactly how they were feeling, but someone in that room who had traveled this journey had experience what they were feeling. I told them that I remember sitting in their shoes 12 years ago. I remember looking around the room and thinking I knew I didn’t really want to be there, but I knew I needed to be. I wasn’t sure about all the people that were there or if we would have anything in common. Looking back 12 years later, I could tell them this with certainty: you aren’t in this journey alone. There are tons of people like me and like you who will be there to give you the kind of support you are going to want and need. Some of us need a lot of support and touchy feely stuff. Some of us want the facts; just the facts and we want someone to call for information. Somewhere along the way, we build relationships with these people who we can call and celebrate the milestones others take for granted. Someone we can call and say that we’re having a bad day and they will understand that some days are just tough. Someone we can call and cry even when we aren’t the crying type. Some days you want someone to share the good news with, too. And I told them that whatever they were feeling was okay. The happiness, guilt, joy and anger are all part of the journey. We were a safe haven for celebrating, sadness, learning and if need be, even grief. One mom told me she was there to help her daughter become an overachiever! I liked that!
Sometime during the morning a grandma pulled me aside and said, “Thank you for giving me hope. You have given me so much hope.” Mission accomplished. Thank you families for allowing me and allowing us to walk with you on this journey. It’s gonna be a wild ride!
Note: Today’s picture is Ben’s Angels. This was our early intervention group (through Special Kids and Families in Memphis). Our group was together pretty much every week for three years! They do look like Angels!