our story How it all began
Our story is very similar to most families with a child with Trisomy 18 or 13. At 20 weeks pregnant we received Stella's diagnosis. We did not feel supported at our local hospital and asked to reconsider termination multiple times. We were told our child would live days at most and would likely not make it past 32 weeks gestation. After fighting to stay and spending weeks meeting with many doctors, we realized we would not be able to get a full team of doctors and nurses to give respectful and compassionate care to our daughter. We spent weeks setting up phone calls and sending our daughter's records to hospitals across the country and decided to move to the nearest trisomy-friendly hospital, Cincinnati Children's Hospital, which was 2 hours away. Moving for fair care was one of the hardest experiences of our life. Picking up our life and moving away from our support systems, home, having to figure out childcare and what were we going to do if I had to quit my job... It's complex and emotional and no one should ever HAVE to move to get the care their baby deserves. Somehow, with tons of support from family and friends, we traveled back and forth for weeks and finally moved to Cincinnati to welcome our baby girl into the world. Moving was hard, but it was also the best decision we could have made. Once our ducks were in a row, we could breathe a sigh of relief and enjoy our pregnancy and take in the time she was alive and safe in Chelsea's belly. We welcomed our daughter into the world and all the moments of fear that lead us to that moment melted away. She was here and she was beautiful and perfect in every way. We didn't know if we would have hours, days, or years with her so we cherished every second. Every moment was worth celebrating. We had a birthday cake made and sang her happy birthday in the NICU the night she was born. We had her baptized by the same person who married us. We had our whole family meet her before Chelsea could because we had no clue what to expect. We took pictures, sang songs, watched our favorite movie with her, got her a one-month birthday cake that we snuck into the NICU to sing her Happy Birthday for the second time. No moment was promised and we decided to celebrate her life in any way we could. We fit a lifetime of memories into her 39 days on earth and when she left us, we knew we had loved her the best we possibly could. In that way, we had zero regrets. The following weeks, months and years, have been the hardest days of my life. The pain of losing a child never leaves you and no one should have to experience it, but it always brings us peace to know that the pain is so great because the love is even greater.
