The youngest member of our tribe is a beautiful 9 month old with the most gorgeous ginger colored hair. She is one of the greatest gifts I have ever received and she is absolutely one of the most special people I have ever known. You see, part of what makes her so special is she rocks an extra chromosome. That’s right. She has Trisomy 21 also known as Down Syndrome (DS).
When I was 19 weeks pregnant, I went in for the routine anatomy scan only to discover that there was a problem with my sweet babe’s heart. It was later confirmed that she had a large heart defect, one that is commonly associated with Down Syndrome.
Further testing revealed that the baby I was carrying, who was being knit together perfectly in my womb, did in fact have Down Syndrome and her heart would require surgical repair within the first few months of life.
Enter, all the emotions one could ever have.
The summer of my pregnancy was a hard one. I had all the emotions. We will save this topic along with heart surgeries for another day, but the short version of it was I was a mess emotionally. I hadn’t had much experience with people with different abilities in my life, which I am saddened to admit this now, but those are the facts. I was coming from a place of ignorance and heading into unknown territory. The only information I had going into it was what society had been telling me about people with different abilities.
But I am here to tell you, my baby girl Bernadette is one of the most special people I know. She has rocked my world in all the best and hardest of ways. I am constantly amazed and captivated by her and her differences. Those things that make her unique are the very things I have come to love in her first 9 months of life.
I am not going to lie, we have PLENTY of HARD days. We have been through heart surgeries, hospitalizations, tube feeds, tube weans and so so SO much. But she has changed me. God has used her little life starting with the pregnancy to change my heart completely, to change me deep inside.
While I have so much to learn, I am happy to say that those things that are special to her because she carries something extra are the very things that I know I needed in my life. God knew I needed.
I am one of the luckiest people. Those who get to raise these incredible babes or be in their families or do life with them and their families are some of the luckiest people in the world!