Meet Brinley. A little girl who is changing the face of beauty.

Words from Brinley’s Mom-

On Friday, August 8, 2014, my typical 35 week checkup was anything but typical. My doctors found I was measuring about 4 weeks ahead of schedule (suddenly) and scheduled an ultrasound for that afternoon. I had had gestational diabetes with Brinley, so they wanted to see whether I had extra fluid or she was a big baby. At my ultrasound, they instantly confirmed that it was extra fluid and not a result of the diabetes. I remember feeling so relieved at that moment. My little girl wouldn’t have sugar issues. What they told me next was that our baby had an issue with her tummy, a blockage that was preventing her from recycling the fluid and therefore, creating more. She was calm, told me that that it was easily corrected with surgery at birth, and asked if we could make it to the hospital nearby for a more extensive ultrasound that afternoon. My head was spinning. Luckily, my husband and 2 ½ year old son were also with me. At the hospital, we met with a high risk doctor who performed an ultrasound. From there, the storm of information – Duodenal Atresia, holes in her heart, markers for Down Syndrome, suggested amniocentiesis to confirm. I remember asking whether my daughter was going to live. 

Though we didn’t receive our results until Monday evening (3 days!!), when we left that appointment I knew. I knew our path with Brinley was going to be different. I felt a strange sense of peace. My entire pregnancy, I had felt different. I had this gut feeling that my experience with Brinley would be different than with Cayden. I didn’t know how…..just that it would be. This was my confirmation. 

Once we had our results, panic started to settle. The fear of the unknown is the most difficult part of a diagnosis of Down Syndrome. I feel like it still is at times. There is no way to know what the capabilities of your child will be. But then again, do you ever really know what any child will be capable of? 

On September 10, 2014, Brinley came screaming into the world. This sassy little diva used that opportunity to let her momma know that she was going to be heard. She had her surgery to correct her duodenal atresia at 5 days old. She also had low platelets, as a result of something called transient mylerproliferative disorder, or transient leukemia. After 27 days in the NICU, endless, trips back and forth to the hospital, 6 blood transfusions, a collapsed lung, a g-tube for feeding placed in her belly, just to name a few, she came home. She finally got to meet her big brother. 

Cayden and Brinley’s relationship is so incredibly typical. Brinley chases after him to try and play, and Cayden gets annoyed that his little sister touches his things. But the love that he has for her, amazes me everyday. He protects her and cares for her and that is all that I could ever ask for. I honestly think that having an older brother has helped Brinley’s motivation to meet her milestones. She wants to do everything that her big brother and his friends are doing. 

I remember my husband Phil telling me in those first few days that he was scared that he wouldn’t be able to protect her. It made perfect sense. We were two people who knew little about Down Syndrome. We did know was that the world can be a difficult place. What if society couldn’t see how amazing and capable our little girl was? We made it our goal from there on out that we would do the best we could to educate and raise awareness. 

How has our lives changed? Brinley has been involved in Early Intervention since she was 6 weeks old. We are in the process of transitioning to the school district because, yes, my little girl is starting a typical preschool in the Fall! She will have the assistance of her therapists, but she will be with other curious, energetic 3 year olds. Brinley has a few more doctors appointments than a typical two year old, but at this point, she is a happy, healthy little girl. Brinley also meets milestones at her own pace. We waited until she was a little older to crawl, walk and run. But, when they tell you those moments will be 100% more exciting, they are right!! Watching the determination that Brinley has to do everything she sees around her, is such an inspiration. 

Being Brinley’s mom has changed me in more ways than I could ever imagine. Most importantly, I have learned to appreciate and slow down. We are so used to our fast paced lives, that so much goes unnoticed. Giving up control and accepting that life may throw you curve balls, has been one of my greatest changes. I have also learned that a diagnosis does not define someone or their abilities. 

As I am typing this, my curious 2 ½ year old is trying to push every button on the computer and dancing to the music in the background. Our family is complete and I could never imagine our lives without her in it.
Rochester, NY Down Syndrome Awareness Photo Sessions-

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.