How My Family Is Better Together Because of My Youngest Daughter With Down Syndrome
Over the past 19 months, my family’s life has had a tendency to revolve around our youngest member: Savannah. Savannah was born over 10 weeks premature, and had a litany of health issues related to prematurity. She also happens to have a complex form of Down syndrome called Mosaic Translocation. Savannah has definitely taken over the spotlight since she was born.
In those early days, right after Savannah was born, I worried about what kind of impact her diagnosis of Down syndrome would have on her siblings. When she was born, her oldest sister, Dailey, was 14, her one and only brother, Hunter, was 13, and her other big sis, Grace, was 8 years old. Looking back now, I feel foolish for ever having worried about how Savannah’s siblings would react to her, and how others, such as their peers at school, would respond to them having a baby sister with Down syndrome. My children have always been amazing individuals, and they faced this new, uncharted territory with strength and love. They all fell in love with their baby sister immediately.
Before Savannah, Grace was the baby of the family. But she didn’t want it to stay that way, she wanted a baby sister. Around Christmas in 2015 she said she made a wish, that she wished for a baby sister. Four months later, we found out I was pregnant. Grace was the third person to know, after myself and my husband. The word excited doesn’t do it justice. As the weeks went by, we found out the baby was a girl and her due date was none other than December 23, Grace’s birthday. I do believe she was the most excited, proudest big sis-to-be in the world.
Nothing with Savannah has ever been easy though, all the way back to when she was in the womb. My pregnancy was full of complications, it felt like I spent more time in the hospital than out. Then at 29 weeks gestation, Savannah made her grand entrance. She was born at 12:11am on October 13, 2016. She weighed 2-pounds 11-ounces. She faced a multitude of health concerns related to prematurity, along with a postnatal diagnosis of Down syndrome. Savannah spent 68 days in the NICU at UAB, roughly 70 miles away from our home. It was a very difficult time for our family. But there is always a light at the end of the tunnel. She finally came home on December 20, 2016, just in time for Grace’s birthday, my birthday (December 24) and Christmas.
As we all began to adjust to our new normal, Grace was my right hand woman. She was always right there, ready and willing to do anything for her baby sister. She became eager to learn about Savannah’s medical issues. She helped with Savannah’s oxygen when we had to move her tank and supplies from room to room. She would help watch Savannah while I pumped. She changed diapers, helped with feedings and baths, she truly was a little mommy.
As I began to be active in the Down syndrome and disability communities, it became a family endeavor. My children and husband are always right with me, ready to advocate for Savannah. Grace has amazed me with her love and support for her baby sister and all individuals with Down syndrome and disabilities, as have all of my children. I can’t say that when I was 10 years old I went out of my way to help and befriend other children with disabilities, but Grace can.
One of my proudest moments was when Grace and I were talking, nothing major, just “How was your day?” kind of stuff. She told me she got to sit with her friend who has Down syndrome at lunch, and that during her P.E. time she went and helped the teacher in the Special Education class. I was amazed, and said “Wow, really? That’s so awesome Grace!” She went on to tell me she does that a lot, pretty much every chance she gets. She said she just loves the lady that teaches that class, and maybe someday when she grows up she could do that, too. I cried tears of joy and pride.
At the start of our journey with Savannah, I worried about Grace. I worried about her having to transition from the baby of the family to being the middle child. I worried about what effect Savannah’s medical issues would have on her. I worried that she would feel looked over and left out. I never want her or her siblings to feel like the invisible child.
It can be hard to not get lost in the chaos of a large family. It truly is a balancing act to make each and every member feel just as important as the next. Every person in our family is an intricate, necessary part. We all work together to make our family a functional, loving unit, with equally important roles. We are all so blessed to have one another. Things can get hectic, and at times it might appear to outsiders that Savannah is my only child. But don’t overlook my middle child, my amazing Grace. Don’t overlook my teenagers, who are doing their best to figure out who they are while navigating the terrain of this life. None of Savannah’s siblings are “invisible” children. We are all just doing the best we can to make this world a better place, one day at a time. One thing is for sure, we’re always better together.