Down syndrome Awareness: Cadence
Join us in October for Down Syndrome Awareness Month as families from one of our Ds support groups share,
what they wish others knew about their child with Down syndrome.
My little heart beat: Cadence Auset
2020 was a crazy year! Good and bad, but the best part was when my little heart beat Cadence came into the world at 38weeks 4 days. She arrived, 6lbs 10oz and 18.27 inches long. We met 12hrs after birth due to my C-Section and her being in the NICU. See my little baby had a heart defect, a complication associated with Down syndrome.
I was prepared for this scenario – I knew she had a heart defect and Ds since 23 weeks. But those 11 weeks and 2 days were so sad for me and my husband. We blamed ourselves, we blamed each other. I researched and scared myself sick – depressed literally until 35 weeks.
My husband and I went to our doctors appointment as usual. But at this one we got to see an actual 3D picture of “the baby” because we could not decide on a name. We only had “Auset” a middle name. I took one look at that ultrasound and saw a complete full view of her face. She had her daddy’s eyes! My nose! She’s just baby! “Not a Down syndrome baby” or a cardiac patient. She was a little baby that looked straight like both of us.
Right then my attitude changed dramatically! How could I not be excited about this sweet little girl. My husband came up with her name right on the spot, “Cadence” which I loved the ring of. We talked about names before but all of them before that point didn’t fit. I felt like they were for a child that wasn’t going to be like I thought. To be honest I was right, in the wrong way. Cadence Auset is a fire cracker! She is literally our little heart beat, the rhythm of our family.
I had so many misconceptions that fueled my fear and depression. All the statistics, medical jargon pictures and studies. Before that 35 week appointment, it turned my baby from my child to a diagnosis and a “condition” that’s all I could see. But in reality. The anxiety and fear of the unknown was a million times worse than actually living this life.
My daughter is smart, she is strong, she is silly and she has an attitude bigger than her 19 month old self. She does not fit perfectly in that medical induced box of statistics and case studies. She is not to be underestimated. She is a warrior. We are so lucky to have her exactly like she is.
To all expectant parents. Mothers especially. Feel the fear, worry, blame yourself ( because you will) it’s a normal reaction. Don’t feel bad for feeling all the negative emotions. But then, once you’ve felt it set it down. Do not live in your grief. Because once you lay is down. Once you take things day by day. You see that you are carrying YOUR child,. That will love you so much. You realize your child is unique and not a statistic in a medical journal.
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world. – James 1:27 NIV