If you would have told me a year ago that I was going to attend the National Down Syndrome Congress in the summer of 2017, I probably would have cried. I would have said something like, “we’ll see,” all while thinking in my head, I don’t think so buddy.
But guess what. I attended this year’s NDSC. And I loved every single moment of it.
Everywhere I turned, there were some the most beautiful people I have ever met, with smiles on their faces, ready with a warm hug. Bernadette captivated many with her red hair and blue eyes and she was a magnet for people to come up, congratulate us, and share their story of their child who has DS. Some showed us pictures of their loved one or brought them over to meet us while telling us of all of the incredible things they are doing. Their eyes gleaming, they would look at Bernadette and say how they remember when their child was little like her. “It goes by so fast,” they would tell us.
I definitely had some major star struck moments throughout the weekend when I got to meet half of the cast of Born This Way. I teared up when I met Rocco’s family our very first night there. We had arrived much later than we had anticipated, had enough time to check into the hotel, pick up our registration packet from the convention center and take a quick look inside the exhibit hall before it was time to put Bernadette to bed.
I waved as I saw Heather Avis, author of The Lucky Few, who was sharing a booth with one of my favorite shops Littlest Warrior, standing with Rocco’s mom Amy. Heather introduced us and I felt for a moment like this wasn’t even my life. I have watched every season of this show and this season’s finale just aired a couple of nights prior to the convention. Was this really happening?
What I loved most was how real my conversations were with these two wonderful ladies and other moms from the show. And let me tell you, I had some real honest moments with them. Moments of tears and sadness, and laughter, followed by more tears and hugs. These moms have been there. Exactly where I was standing, new baby, new to the world of all things DS, and trying to navigate through it while making some sort of sense of it all. I felt an immediate sense of belonging and connection. We had been welcomed in with open arms by strangers. People we didn’t know were ready to talk about their experiences and also ready to be the listening ear to a mom who was completely overwhelmed. These conversations were absolutely priceless. Of course the workshops were great. So many wonderful speakers who shared great information relating to where we are at with Bernadette and what lies ahead. But the heart-to-heart conversations with moms who get it…
I geeked out meeting Sean, Cristina, Elena and Rocco. We took pictures, I smiled so hard my face hurt and my eyes disappeared in every photo because I was smiling so hard. It was great.
Their moms though? Hearts of gold. Life experiences. Sharing how they got through the early days where it seemed like all things revolved around feeding issues and fear of the unknown and even things known. Things that make our experiences unique in and of themselves but also have some amount of commonality to them giving us that automatic understanding for each other.
One mom looked straight at me and said “you are part of the club now, the 21 club.” I looked at her through tears and nodded my head yes, thankful that we are not in this alone.
David and I walked through the exhibits Friday afternoon in between workshop sessions. Our first stop was obviously the booth selling coffee and we had a wonderful conversation with the seller. He told us some of his story and we got to meet his son who also works for them. While we were chatting, I noticed two ladies standing near us staring. I looked over and smiled, then engaged in one of the most encouraging conversations with them. The mom explained that she couldn’t help but stare at Bernadette in the carrier. There was a moment where Bernadette had looked up me and I back at her in which she said she could see the incredible bond between the two of us. Tears filled my eyes as I stood there speechless. She was a lactation consultant and has been for years. The moment she witnessed between me and my little baby reminded her of the relationship between a breastfeeding babe and mom. Through tears I explained all of the circumstances that prevented us from having a relationship like that. The obvious low muscle tone, heart surgeries, ng tubes, all of it that had kept us from doing the one thing I so desperately wanted. I had been so worried about bonding with Bernadette since I couldn’t have the breastfeeding relationship with her I had dreamed of having. I loved that time with my other girls and it broke my heart to not have it with Bernadette.
The lady went on to say that she would have never guessed we didn’t have that time together. She said that the look in Bernadette’s eyes led her to believe there was an incredible bond between us, one that was unbreakable. Beautiful words from this woman I had never met until that day, words that encouraged me to the depths of my heart. It was as if she was saying, keep on doing what you are doing mama, it’s working.
As we left the convention yesterday, I thought back on all of the unforgettable conversations I had with so many other warrior mamas and their families. Everywhere I turned, there were people with DS going here and there, embracing one another, friends had reunited since the last convention a year ago and it was all so normal. It felt like we were with our people. All of it encouraged my mama heart deeply. All of it made me feel like, yes, we may be at the beginning of our journey, but there are many others along the way, ready to jump in with their experiences, a warm hug, a good cry, a listening ear. May I be that for someone someday down the road when it is their very first convention they are attending, overwhelmed with tired eyes and a weary soul, with their babe snuggled in close, next to their own beating heart.