My Angel, Anna
Sixteen years ago, we welcomed our beautiful girl, Anna, to this world. What started as an amazing celebration of our first daughter was clouded by our pediatrician explaining to us that Anna had the markers for Down syndrome.
The next few hours, Anna’s oxygen levels dropped dramatically and she had to be transported to a larger hospital with a NICU that could take better care of her needs. During these first few days, I read all I could about Down syndrome and learned about so many medical issues that we could face. To say I was scared and sad does not really describe the extent of my feelings. Anna also had irregular white cells, which is an indicator that she could develop leukemia…which she did when she was a year and a half old.
Yes, these early years were full of overwhelming medical challenges, physical therapy sessions, countless doctors appointments, and some precious time getting to know our little girl. She delighted us! She was a beautiful soul given to us.
Fast-forward to today. Anna is turning 17 this summer, something she reminds us of often! She is kind, caring, hardworking, determined, independent, and a beautiful part of our family. At school, people pour love all over her, and she is completed accepted by her wonderful group of friends. When I drop her off at carpool, I often witness a girl coming up to her to greet her with a hug.
There are so many families welcoming their new baby with Down syndrome into the world. I hope that the book, Beautiful Souls, provides these families and our community with a look into our lives and how our loved one has shaped our families into something we never would have dreamed of during the first day in the hospital.
Beautiful Souls benefits three organizations that are each trying to bring understanding and acceptance, and improve the lives of those with Down syndrome. Anna’s Angels is closest to my heart, as my husband and I started the organization in honor of Anna. We have raised over $1.6 million to fund promising research at Duke Children’s Hospital to improve the cognitive and communicative ability of those with Down syndrome. Over the years, we have been able to fund some exciting research that has benefited and will continue to help improve the health of our loved ones with Down syndrome.
Beautiful Souls also supports Triangle Down Syndrome Network (TDSN), which is the first organization that I was connected to after Anna’s birth. TDSN is an excellent resource to connect families, and we were very fortunate to have them available to us in those first years when you have constant questions and are trying to navigate this new world of special needs. TDSN has been an anchor for so many families in our community.GiGi’s Playhouse Raleigh is the final organization that benefits from the proceeds of Beautiful Souls. I am proud to be on the board of this amazing, life-changing nonprofit. At GiGi’s, we provide a brick and mortar location where we offer free therapeutic and educational programming to individuals with Down syndrome, and their families. GiGi’s is a magical place where we see improvements daily in our participants and their families.
*photo by Lili Engelhardt Fine Art Portraiture