Meet Juliana. A little girl who is changing the face of beauty.
Words from Juliana’s Mom-
Two years ago I was sitting in a coffee shop working on grad school homework, when my phone rang. I knew it was the call I had been waiting for, but had convinced myself I didn’t need to worry about; to get the results of our noninvasive prenatal test. I honestly don’t remember much of what the genetic counselor said on the phone, other than her communicating that the test had been positive for Trisomy 21. I remember her apologizing for not preparing us for the diagnosis. We only had two soft markers and I was 33, which put our chances at about 1 in 140. I also remember she wanted us to make an appointment to come in and see her – however that was the last thing I wanted to do in that moment. I packed my stuff up and drove to my parent’s house, and when my mom opened the door I burst into tears. I cried for awhile before I could speak, before I could even articulate why I was crying. I finally processed that I was crying over the future I had pictured for our daughter – that I now viewed as being impossible. The second hardest part of that day was telling my husband. I called him multiple times that day to tell him as soon as possible. I remember him coming through the door sitting down and crying himself and saying “but I don’t like special needs kids.”
The next few months were time of mourning, learning and planning for us. Despite both having careers that came in contact with children with Down syndrome, both of us had no idea what the day to day life of a family would look like with a child with Down syndrome. I found a huge support system both online and through our local Down syndrome network. For our family the time between our positive NIPT and Juliana’s birth was essential time to let us prepare and process everything. We were also blessed with an incredibly supportive team of midwives. We had one additional ultrasound, and a fetal echocardiogram, but otherwise the pregnancy was uneventful. My midwife team was supportive of my desire for a normal pregnancy, and respected my wish to continue as planned unless they had a safety concern. Our open communication let them prepare the hospital so that they were aware we knew about Juliana’s diagnosis and were excited – which was crucial for me. I didn’t want anyone whispering in the corner, or coming into our room thinking we didn’t know. Her birthday was a joyful day where we all were able to celebrate her joining our family.
I know that time of uncertainty and mourning was part of our journey – but I also wish I could go back and tell us how much joy is part of our lives now. I would tell my husband what an amazing bond he has with Juliana – who just started signing daddy. I would share about how Juliana plays with and annoys her brother like all siblings do, and how she has been accepted into the tribe of kids on our street without a thought by the kids – despite my hours of tears worrying about it. I would share about how she gives the best hugs, and dances to any bit of music she hears – clapping enthusiastically at the end every time. Being greeted by her hugs and giggles at the end of the day is one of the best part of my day. Juliana has helped me see that in truth I hope the same thing for both of my children – that they are kind, that they find joy and purpose in their life, that they know how to work hard for something. We still have bad days, and there is mourning still as some things come differently or later. Comparison is the thief of every parent’s joy. But two years ago I couldn’t imagine what our life would look like, and now I can’t imagine it any other way.
For more information or support regarding the Down Syndrome diagnosis experience check out www.downsyndromepregnancy.org← The resource was key for me in the early days
www.dsdiagnosisnetwork.org– I would not have made it through many days without the tribe of Rockin’ Moms I found through the Down Syndrome Diagnosis Network
To see what the future looks like for many individuals with Down Syndrome check out https://rubysrainbow.org