Meet Avery. A little girl who is changing the face of beauty.
Words from Avery’s Mom-
I was just about twelve weeks along with my pregnancy, when I went in for what I thought was a routine ultrasound just before the New Year’s holiday. I was told that based on the baby’s nuchal fold measurements, that we had a 1:2 chance of our baby having Down syndrome or another chromosomal abnormality. It was a whirlwind of information and we were quickly scheduled for an appointment with for a more detailed ultrasound and to meet with a genetic counselor. After meeting with the genetic counselor we proceeded with a simple blood test which we were told could likely determine any chromosomal abnormalities.
After waiting a long eight days, the results were back and I received a phone call letting me know our baby girl likely had Down syndrome. Doctors had always positioned it with previous pregnancies that this was only a risk for women over 35, I was only 32! We met shortly afterwards with the genetic counselor who provided us with some more information about Down syndrome, my experience was minimal and I didn’t know very much about it at all aside from when I had volunteered as a teen at the Special Olympics. This was unexpected news and I needed to get as much information as I could.
As someone who likes to be prepared for things, I quickly connected with the local Down syndrome network and also found online support with the Down syndrome Diagnosis Network. Both provided me with information and helped ease my worry some as we navigated the remainder of pregnancy. The unknown is scary when pregnant and I feel that knowing Avery’s diagnosis before she was born gave us time to prepare and also go through the whirlwind of emotions. At 39 weeks I went in to my high risk Drs office for an ultrasound and appointment and was informed our baby had stopped growing so I needed to be induced. She was born July 3rd, 2014 and I remember her looking up to me when I first held her and feeling a sense of peace that everything would be okay.
After fifteen days in the NICU due to low blood sugar, low pulse ox, pulmonary hypertension and a feeding troubles we were able to bring our beautiful little bundle home. She is the youngest of four kids and we knew she was the missing piece to our family. Her siblings just adore her and join in celebrating when she achieves new milestones, but she also manages to find ways to annoy them just as a little sister should. She also really looks up to her siblings and enjoys when they will play with her or read her a story, books are one of her favorite things.
While I never expected to have a child with Down syndrome, now I cannot imagine my life without Avery. She is 2.5 years old and enjoys being around her siblings, any music and she has some sweet dance moves, and making lots of messes. It may take her longer to achieve her milestones, but that just means it’s more of a celebration when they happen and she has quite the team of cheerleaders to cheer her on. Her personality is really blossoming and she has the best sense of comedic timing. She has brought our family a lot of joy and helped us slow down a bit (well except for those mornings we have had a therapy at 8am, then it’s a race to get everyone ready haha!).
Avery has also helped to change how I define success. I want all of my kids to find their own path to do what they love and makes them happy. The future is bright for Avery and all individuals with Down syndrome. I can’t wait to see how she shines as she grows!
It was a pleasure to do a special photo session with some local kids who have Down syndrome. I am hoping to spread awareness locally in addition to adding my own flair to the campaign, Changing the Face of Beauty.