I was 20 weeks along in the pregnancy with my third daughter when I experienced one of the biggest curveballs of my childbearing years. The baby tucked safely inside my womb was diagnosed with a severe heart defect. Her heart, having not developed properly, would require surgery soon after her birth.
As if that wasn’t enough shocking enough, the doctor reviewing her ultrasound results with my husband and I promptly noted these types of heart defects are often associated with Down syndrome.
I could feel the air escape the room, my thoughts racing in attempts to process through the newly revealed details. I could feel my emotions ready to break free at any given moment as I held back the lump in my throat trying to appear calm.
Questions silently bombarded my mind about my unborn child in the weeks before her birth. Having her Down syndrome diagnosis confirmed soon after the ultrasound catapulted me into a spiral wondering what this would mean for not only her future but for our whole family.
I searched on social media in hopes of calming my fears of the unknown. I was greeted with one of the warmest welcomes I had ever experienced, into this community of people who love someone with Down syndrome.
I quickly discovered other parents boasting of their child with Down syndrome. I saw an outpouring of love in these families and a strong community who stood by each other in the thick of it. Families shared their victories both big and small while speaking of how their family member with Down syndrome had changed their entire world for the better. Pictures of their loved ones began to flood across my social media feeds, bringing a new awareness into my own life. I too, would get to experience the joy of loving someone, my own daughter, with Down syndrome.
Fittingly, she arrived in October. The entire month is dedicated to bringing awareness to the importance of these beautiful individuals while promoting inclusion and sharing what an integral part of the society they are. They bring their unique experiences, offering a lens of pure love and joy to view the world through.
Our first October was spent in the hospital. It was a difficult season for sweet Bernadette. The heart defects she was born with required almost immediate surgery, the first when she was merely 2 weeks old, the second at 8 weeks. Nothing prepares a mother for the agony of watching your child endure medical obstacles. But I believe the strong bond I have with her today began in those trying months of watching her in the fight of her life.
It wasn’t until we were home from our two month hospital stay it hit me how much she had already endured in her young age yet how many obstacles she would fight the rest of her life. My heart was softening as she was strengthening. I had a front row seat to embracing different in my own life and knew she was being used to change me and the way I viewed the world.
Prior to Bernadette, I didn’t pause to reflect on the importance of having someone like her in my life. Each person with Down syndrome is unique. While there may be some characteristics that can be similar, they are as individual as you and I. They too, deserve to be seen as such and included in every aspect of our lives.
It starts with us, in our own families and community, with the examples we set to others on inclusion and the message of belonging whether you have a child with Down syndrome or not. Educate yourself and show support to the families around you. If you don’t know someone with a disability, get to know one and learn from them. Hear their story, let it impact your heart, and cheer them on.
If it makes you uncomfortable, lean into those feelings and discover why you feel that way. Is it because you are afraid of not knowing what to say? All you have to do is simply say “hi” with an openness in your heart, letting go of any preconceived ideas. Don’t underestimate the power of kindness. It goes a long way.
Here we are, four whole years later after the birth of my daughter. I will not say this journey has been easy. I have been stretched in ways I never thought possible. In the midst of the pain, there is growth and the most incredible joy I would not trade for anything. I have learned that it truly is not about adapting her to fit my life, but rather creating an inclusive environment that encourages her growth and celebrates her victories. It is about letting go of comparisons and what I thought life would be like, while embracing different.