My daughter Amadeus was born with Down syndrome and even though my pregnancy was filled with emotional pain, her arrival changed arrival changed my life and turned it into a better and happy life.
We had an amazing and beautiful water birth, and our family was now complete. Not only was she a surprise diagnosis of Down syndrome, but we were also surprised to find out it was a sweet little baby girl. Not knowing anything about Down syndrome or her heart defect, my research started. We ended up having a week’s stay in the hospital, so it gave me plenty of time.
I was excited about my beautiful daughter, but I started to mentally beat myself up. I remember seeing the life expectancy and thinking that her baby would live longer than mine… My daughter would possibly go into heart failure (and she did) and his other baby would not. My daughter could potentially get leukemia, which is common in kids with Down syndrome, and hers would not.
My daughter would struggle through life and hers would not. But before I left the hospital, I told myself I would give my daughter, for however long she is alive, the best life, which includes me. I needed to heal. I needed to forgive. I couldn’t go back and dwell on what was done, and I needed to move forward and not let my mind hold me back or my kids back from our blessings.
My 3-year-old daughter is incredibly strong, she has beaten every challenge, proved doctors wrong, and even survived RSV at 4 months.
She developed a horrible oral aversion and was tube feed for 6 months, but she overcame and now eats and drinks everything by mouth when the doctors said she wouldn’t. She was in heart failure and was released 5 days after her 8-hour open-heart surgery. Our girl is a fighter! She has taught me to not just accept things as they are but fight for things to be better.
After having watched my daughter fight so hard for her life, I realized I had to fight for our life as a family. I decided to separate from my husband. We had tried to keep the marriage together for 3 years after Ami joined our family… but I mentally couldn’t get past it, as the pain on some days was unbelievable. I wanted my kids to see and feel me happy as they once did.
Sometimes life’s events bring you together and other times, it helps you see clearly what is best for you and your kids. My children and I have grown together during this pandemic, and I realized doing life as a single mom was not as bad as I thought.
I saw everyone in my family grow and that was enough for me to decide to permanently separate. My time with my kids’ father was filled with many memories and five beautiful children. He has been and still is a great provider for us, and I would do it all over again the exact same way knowing I left no stone unturned.
When the world was literally shutting down around us, I prayed for God to give me a way to continue to heal. God put on my heart to celebrate Down syndrome Awareness Month with 31 ‘virtual meetings’ of 31 different families highlighting the diversity within the Down syndrome community in October, which is Down syndrome Awareness month. I didn’t realize it at the time, but this was actually part of my healing work for my own heart and for my children.
I didn’t understand that, especially during this time of mental healing for myself and my kids. Not only did this build my confidence back up that had been stripped from me during the previous years, but I saw I was capable of raising up the voices of others, which in turn was supporting their healing too. My daughter’s diagnosis showed me my strength and inspired me to help other families feel supported and never left alone.
