UDSF is looking to put together a written collection of experiences/photos from Utah moms/dads/siblings that will be shared with new families as they join the wonderful (and challenging!) world of Down syndrome. There are probably a million and one things we wish we could go back and tell ourselves when we received our diagnosis and our feelings have likely changed over time. Do you have an experience you’d like to share? We are currently taking submissions for this addition to our New Parent program. Your story should not exceed 500 words and should be in Word format. Please submit a picture or two of your family.
The purpose of sharing your story is like a “Dear Mom” or “Dear Dad” letter telling new parents what you wish you had known. Below is an example story submitted by Amber Finlinson Merkley, UDSF's Family Support Coordinator.
My one and only shot at pregnancy was well planned and closely followed by a large medical team, after several months of fertility treatment. We had decided previously not to do any prenatal screening. However, at one of our early ultrasounds (14 weeks), we were told that that the baby likely had some sort of chromosomal anomaly. Honestly, we were devastated, and this news added a new layer of complexity to what was already a high-risk pregnancy for us both. Knowing that we either needed to prepare for a baby that may not survive or that may arrive with a variety of "special needs" and medical issues, we decided that NIPT (specifically the MaterniT21) would be the safest and best option to help us prepare for whatever was coming. Seven days later, on December 19, 2014, our genetic counselor called with the results. We were expecting a little boy with Trisomy 21 (Down syndrome).
The next few days were filled with tears. We struggled with all the feelings of guilt, fear, sadness, and inadequacy that this particular diagnosis often brings. But we resolved to learn as much as we could and to connect with parents and families of children with Down syndrome, as well as individuals with Down syndrome themselves, in hopes of understanding what this news actually meant for our family. We were desperate for a "real-life" diagnosis that we could compare to the somewhat bleak clinical diagnosis we'd received from the doctors and genetic counselor. The "real-life" diagnosis confirmed that, yes, this "new" life would inevitably be filled with some of the challenges we had been told to expect. The "real-life" diagnosis also came with something unexpected...we were told that along with the challenges, we would find more love and beauty than we could possibly imagine! We've found the "real-life" diagnosis to be just as powerful and correct as the clinical one. Our life is hard and soft, exhausting and exhilarating, full of pain and joy. Just. Like. Every. Other. Life. We love the big, blue, almond-shaped eyes that see into souls and the big space between his toes that's perfect for the flip-flops he won't wear. We love his little flat nose and low-set ears that won't hold sunglasses. We love his BIG, once-broken-now-better-than-new heart that can "see" another person's heart in an instant and brings out the best in everybody. We love his beautiful smile - the one that literally lights up the room - and we love the soft, floppy hugs and sloppy kisses that come with it. We have friends in rooms full of strangers. Our life is not "normal," but it is ours, and it is beautiful!