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. “

2 thoughts on “This is our life now

  1. I hope you don’t mind that I found your blog through your tags and have been reading it. I’m sorry to hear that you have been having such a difficult pregnancy. I wish you nothing but the absolute best and will be keeping you in my thoughts.
    As for dealing with a life with a baby with Down Syndrome, at first it is really hard. I found out once he was born. I still struggle with it occasionally (he’s four months) but mainly, he is just my baby boy. You will probably find that the DS community is very open and inviting (as you’ve seen at this convention) and that there are tons of resources available to you.
    If you need a shoulder to cry on, I know that I am a random internet stranger, but feel free to contact me. And cry. Nothing wrong with crying.

  2. Pingback: Sometimes knowledge is power and sometimes knowledge is pain | Expecting the Unexpected

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