Being out of your comfort zone and experiencing something new can be frightening because you don’t know what to expect. When we received the call from our genetic counselor with the CVS results, we were standing under the Statue of Liberty in NYC. There were hundreds of other people around us but in that moment, we could not have felt more alone. Our baby has a 95% or great likelihood of having down syndrome. What the fuck. Easily the most painful and scary day of our lives. After a good hour of tears and trying to understand the statistics around the CVS and reason away the results, we realized we weren’t even told our baby’s gender! It was getting late in the day and Robbie called back five or six times before the doctor answered. He asked “what is the sex?!?!”. We were having a girl.
Sure, we cried, as we were unsure of what the future will hold for our baby girl. The only thing we knew for sure was that this girl was going to be so loved that she could not even handle it!! It was time we started accepting the reality of the genetic lottery card we were dealt and began planning for our new life as a family of three.
We went into info-gathering mode trying to learn as much as possible about down syndrome. There is a ton of information online but not as much about the support groups in our area. We didn’t connect with people in similar a situation as us or parents who have already been through this ordeal. Looking back, this probably would have been very helpful, but maybe we weren’t ready. Robbie and I had limited interaction with a few people with Down Syndrome during our childhood and all we remember is that they were nice, but nothing beyond that.
At the hospital, we received a folder containing basic information about how Down Syndrome was going to affect Liliana, but not an uplifting message or anything like that. At that time the overwhelming amount of love and support we received from our friends and family kept our spirits high. This had me thinking thinking how families in the same situation as us feel? How can I help let them know everything is going to be okay?
We wanted to start this blog to remind parents that you are not alone on your journey. Please feel free to reach out to us at any time. We are happy to lend a friendly ear, help get you connected with other support groups we are familiar with, or to just share similar experiences we are living through as well.
Please remember, our kids can do pretty much anything typical kids do. It may take longer to learn skills, but they will get there…The day we confirmed the diagnosis.
Photo credit: Oscar Hernandez