God blessed us with a beautiful son, Simon. After losing six children to miscarriage, my husband, Scott, along with our two sons– Samuel, seven years old, and Sean, five years old– were filled with joy and yet terrified at the thought of losing another baby. On September 7, 2010, at 5:40pm., we heard the first cry of our son, Simon as he entered this world. Simon was small and had a bilateral cleft lip. On Simon’s second day of life, tests revealed he had heart defects. Simon had a ventricular septal defect, patent ductus arteriosus and coarctation. Caregivers immediately started prostaglandins.
On Simon’s third day of life, he was diagnosed with trisomy 18, also known as Edward’s syndrome. Once the trisomy 18 diagnosis was made, it was very hard to get aggressive treatment and care was being withheld. In the eyes of some in the medical community, a child with this syndrome is considered “incompatible with life.” After our son was “labeled,” we were hearing, “Not for Simon.”
We were also pressured to stop the prostaglandins. One nurse actually informed us that if they knew Simon had trisomy 18 before birth, he would have never been put on prostaglandins. But Simon was living and interacted with his family, friends and nurses. His beautiful expressive eyes and captivating smile demonstrated his desire to thrive. We were experiencing an array of emotions. We were scared and felt alone. We also knew we were advocating for Simon and my husband continued to say, “We are not here to expedite his demise.” I would continuously say, “We want Simon special needs and all.”
Simon lived for three memorable months and had a huge impact on all who came in contact with him. On December 3, 2010, the tears poured from our eyes and others as Simon left this world for his eternal home. Simon was not “incompatible with life” and we later learned the truth, children with trisomy 18 can and do live. Our family was robbed of this peace and were not connected with other families. Our family’s love does not count chromosomes. I longed to tell Simon’s story of hope, faith, love and peace.
I authored, “I am not a syndrome-my name is Simon,” to demonstrate that our children are not a label and are not defects! They have a name and an identity. Simon’s story is of compassion and outrage. Simon’s book has been empowering parents to advocate for their children. Our efforts to do our very best for our physically threatened son were the most difficult experience we’ve ever encountered.
At times, in the heat of our struggle to get our perspective across to well-meaning medical professionals who literally kept Simon alive with their expertise, we disagreed on care approaches and bedside manner. My family doesn’t believe in random chance. Simon had a name. He also had a divine purpose. My family, as well as countless others we’ve met in the trisomy community, believe the best interests of society are always bound up in caring for and valuing the most vulnerable of its citizens. God did not bless us with a syndrome. God blessed us with a son. His name was Simon.
For more information on Simon’s book please visit www.simonismyname.com. A portion of proceeds from every sale of this book will go to SOFT, Support Organization of Trisomy 18, 13 and Related disorders.