Imagine walking into a room full of mothers of young children with Down syndrome. Imagine what it’s like to listen to these women share stories of their babies and toddlers with Down syndrome. Do you imagine a room that is quiet and somber? Do you picture them sadly commiserating with one another about the burden of raising a child with Down syndrome? Trying to one-up each other about the daily trials and tribulations they face? Or perhaps they’re consoling one another and wiping away their tears together?
Go ahead and imagine that scene.
Now imagine the complete opposite. Imagine a room full of mothers that are smiling and laughing and sharing in one another’s joys of having a child with Down syndrome. Imagine a mother of a 2-year-old offering congratulations and support to a mother of a 2-month-old. Imagine a room full of mothers exuding happiness and pride and confidence.
That’s the room I got to spend a couple of precious hours in on Saturday. I got to meet new mothers and see a couple of the friendly faces I’ve met over the past 2 years since I joined the Moms Of Children with Down Syndrome Club. I got to watch videos that highlight the beauty that comes from a person living with an extra chromosome. I got to listen to to the testimonies of other parents who have been in this club much longer than I have and feel excited and hopeful about the future that awaits Moses and our family.
At the beginning of the luncheon, a video was shown that centered around two families – one with an older son with Down syndrome, the other with a 3-year-old boy with Down syndrome. It was a wonderful, inspiring video to watch, but the end is what hit me the hardest. The father of the older boy was saying that “if he were to tell a new father who has a child with Down syndrome one thing…” At that point, he got choked up and couldn’t continue talking. His wife said, “You would tell them that it’s going to be okay.” The man shook his head and finally said, “No, I would tell them that it’s going to be way better than okay. It’s going to be amazing.” Cue the tears!!!! I don’t even have 2 years under my belt, but this resonated so much with me because it’s just so true. This journey with Moses has brought way more smiles, laughs, and joy than I could have ever imagined.
Next, we got to hear from two mothers who have older children. One has a son who is 17, and the other has a daughter that is 21 or 22. Both had very similar messages of how important it is for us to remember that our children are going to live up to our expectations. If we set low expectations and limitations on what they should and can do, then that’s what they’re most likely going to accomplish. I think it’s easy for any parent to think that their children isn’t ready for this thing or the other, or that there are certain dreams and aspirations that are just out of reach. It’s scary to even think about watching our children fail or get hurt, and it’s even worse to actually watch it happen. But failing and even falling down every once in a while is what lead to the growth that we ultimately want for our children. That includes children with Down syndrome. It might take longer and success may look different for Moses and other children with an extra chromosome, but it’s not up to me to define what success is for him. That’s up to him, and it’s my job to be there to help and encourage him along the way.
As I was about to leave, I saw the two mothers that spoke talking to another woman. I walked over and thanked them for sharing their stories and insights. One of them wrapped me in a big hug and said, “Welcome to the club!” I laughed and told her that I was almost a 2-year member but thanked her all the same. That led to a conversation with the woman they had been talking to who really is a brand-new member to our club. She has a 2-month-old and said she almost didn’t come. I don’t know if my reaction surprised her, but I said to her, “Oooh!!! You really are a brand new member to our club! Welcome and congratulations!!! You are in for more blessings than you could’ve imagined.” We then had a great conversation (in my opinion) about her family which includes two other daughters that she wants to do right by. I shared what had worked for me with Josie, congratulated her again, and wished her the very best.
I walked out of there really, truly believing in some of the phrases I’ve heard over the past 2 years. I absolutely am one of the lucky few parents chosen to have a child with Down syndrome. I absolutely did hit the lottery when God gave me a child that got an extra chromosome. My life is absolutely going to be better with Moses in it than it could have ever been without him.
For the rest of the day and on the drive back home, I replayed in my mind the videos I had seen, the stories I had heard, and the conversations I had had. In addition to what I’ve already mentioned, I also kept going back to what two other mothers in attendance had shared. One talked about how after the birth of her baby, her OB/GYN stayed with her for 10-15 minutes and had told her that she had never gotten to be part of such a special birth. The other told of a day she went shopping with a friend who carried around the mom’s daughter through one of the stores. Her friend commented that the people at that store were just so friendly. Then it dawned on her that it wasn’t so much her that they were being friendly to, it was the special child she was carrying. The mom said that her friend told her that it was as if people were just drawn to the little girl.
When I put all of these things together, I have to ask myself, “When is finding out that a baby has Down syndrome going to be something to celebrate? When will doctors finally give the results of genetic testing to an expecting mother and say, ‘Congratulations! Your baby has an extra copy of the 21st chromosome. There are some things that we need to keep a close eye on during your pregnancy and possibly be ready to address when he or she is born, but for right now, just enjoy the news that you hit the genetic lottery!’ When will parents be able to share the news that their child has Down syndrome with a smile on their face and pride in their voice?” Because seriously, having a child with Down syndrome is life-changing in all the best ways. You get to experience a life that is full of love and joy and celebration. Like the dad in the video said, it’s way better than okay…it’s AMAZING!!!
One thought on “Way Better Than Okay”
Thanks for sharing. I read something the other day. The writer said, “It used to bother me to speak in public and share my story. Then I realized we all have stories to tell, and we should just take turns sharing them.” In other words, he wasn’t afraid to speak, and he was more intentional about listening to others. It sounds like you are part of a great group, with many wonderful stories to share.