Down Syndrome at the Dog Park

There is a dad who comes to the dog park with his large golden doodle and his young son.  I’ve interacted with them before, like many other dog park regulars. We usually talk about our dogs- asking their names, ages, where they are from.  On this one day, though, I felt moved to say more.

When the three of them came into the park, the dog took off leaving dad and son to walk up the path.  I yelled an excited “Hi, Pete!” to the blur of a dog as it ran by.  The dad heard my greeting and walked over.  “I’m sorry. I don’t remember your dog’s name,” he said apologetically.  When I named Muppet. He responded, “and what’s your name?” shaking the small fist of the baby strapped to my chest.

“Felix,” I said smiling.

As he asked me about Felix’s age, his son came over and simply put his head up against Felix’s belly.  I smiled an decided to do something a little courageous.

“Does your son have down syndrome?” I asked.

“Yes,” he responded, hesitantly, almost protective.

“My daughter had Down Syndrome,” I could see his expression soften, “but she died after birth. It makes me happy seeing your son interact with Felix because it let’s me picture what it might have been like if she lived.”

We then proceeded to exchange diagnosis stories- him at birth, after normal testing. Me, in pregnancy after very abnormal testing.  Both of us “young” in the obstetrical world- without risk factors (though most babies with Down Syndrome are born to mothers who are medically “young.”) Both of us shocked. We talked about our connection to the Connecticut Down Syndrome Congress. He told me how is his native country, Russia, Down Syndrome is almost something to be ashamed of, giving me insight to his initial protectiveness, when I asked about his son.  It also made me thankful that I live in a country where the two words that make up Down Syndrome are not a cause for shame. There is still a long journey towards inclusion and acceptance, but it’s progress.

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Walks in honor of Mabel

One year ago this month, Chris and I learned that our unborn child would have Down Syndrome.  We accepted her with that news and all that the diagnosis would bring.   We loved her when we saw that she’d have clubbed feet.  We loved her when we discovered her kidneys weren’t working.  We loved her when they told us her lungs might be too small.  We loved her even though we knew we might lose her.  And we loved her when we said good bye after six short hours with her.
To honor her, we are taking part in two walks that are very important to us: The Buddy Walk supporting the CT Down Syndrome Congress on September 27 and Footprints on Our Heart Walk supporting Hope After Loss, my local bereavement group for perinatal loss (which has been so very helpful) on October 5th.  Please consider donating or joining us in either or both of the walks as a way to support us in the joy that was our daughter and the sorrow we have in her loss.
Buddy Walk:
(we are joining team Jenna’s Journey-  headed by five year old Jenna, who has Down Syndrome and who I helped bring into this world!)
and
Footprints on Our Hearts Walk by Hope After Loss

This is our life now

We went to the Connecticut Down Syndrome Congress Annual Convention. When I first got the diagnosis, I came across them in my initial internet search. I saw they had a first call program- meant for new and expectant parents who just received the diagnosis of a child with Down Syndrome. If you send an email, they’ll contact you within 24hours. I remember thinking it was a lovely idea, but I just didn’t feel ready. I thought I’d cry and they might not understand. I also wasn’t sure I was ready to be a part of that community. I saw they had this convention, but I was scared to sign up in case I lost the baby before the conference arrived. Chris took the reigns and eventually got us all signed up and even emailed with their First Call program coordinator. The convention was great. And hard. Emotional. Intense. Inspiring. When we walked in and were perusing some vendor booths set up, I was overcome with emotion. I had to step outside and have a little cry. “This is our life now,” I told Chris. I was overwhelmed. But I pulled it together and started our day. We attended three sessions each. I went to one on the Comprehensive Down Syndrome Clinic at CT Children’s Hospital- which I’m very excited to get connected with. It’s a physician and nurse team that help coordinate all the care and needs of children with Down Syndrome. I learned most parents are dealing with many doctors and sometimes struggle to know if they are doing enough and seeing the right specialists. The second was a session on potty training. A local woman runs a business where she will do intensive toilet training with children of any age and ability. She laid out an intense, but fascinating program, which I will keep handy for the future. From the parents in the room, I learned that my child will take a fair amount longer to potty train than typical children- something I had hear before. Most of their children were around 4 and working on potty training. The presenter made me feel optimistic- it can be done! At the same time, planning for a child in diapers until age 4 honestly seems depressing and overwhelming. I’m trying not to think too far ahead. Chris had two other sessions- one on low-tech activities and one on speech. We both had higher hopes for his sessions, but I think they were a little disappointing. I was proud I was able to do my two sessions alone without actually crying ☺ though there were times I got close. Lunch involved some videos about children with Down Syndrome and I got emotional again, though overall held it together. And a keynote address, from what I guess you’d call an inspirational speaker. I was a bit unimpressed- her slides were just inspirational sayings that she got off pinterest. Our last session, Chris and I did together- a new and expectant parent meet up, run by the First Call coordinator, Patty. We met 5 other couples/women- four had babies or infants with Down Syndrome (4mo-18mo) and one other expectant women, who was 33 weeks. This session was wonderful. I had had a weird interaction with a new mom earlier in the day and so I was a bit nervous that the session was going to be a lot of just baby talk and I’d be left out because I don’t have a baby yet. But it wasn’t like that at all. As the first couple introduced themselves, the mother became tearful recollecting finding out about the diagnosis. And I just felt this huge sense of relief. She was worried we thought she wasn’t happy to have her 18 month old daughter because of her tears- which is the same worry I have when people see me cry. It just hit home, that my emotions are so in line with others’ who have gone through this as well. And I’m going to still be emotional in the future- its normal. A few of the other moms became tearful as well. Everyone introduced themselves and told their stories- about their diagnosis and their children now. They were kind and just looked at me with such gentleness. There was no pity, just understanding. I cold see they knew how I felt and I could tell they knew the joy I will feel when I actually have this baby in my arms. The other expectant mom, put it well- for many reasons its great to know in advance, to take time to adjust. But until the baby is physically here is hard to fully adjust and picture life with and love of this baby. It’s hard to imagine the real future. The closing session was a presentation by a young man with Down Syndrome who told his life story. It was interesting to see how he could do this- he was hard to understand, but I got better at interpreting as time went on. He was engaging and funny. I could actually envision his childhood. At the same time, it was a reality check. I felt that same sense of being a little overwhelmed. This man is my future. I’m still adjusting to that idea. “This is our life now. “