Every year for the past 5 years my husband and I host a Family and Friends weekend to celebrate love and life. It had begun as a family tradition to take time to gather, most would call it a reunion, to share the joys of each others lives. Lots of laughter, fun and plenty of food. But in June 2011 our lives changed . A life or death decision had to be made. Could we muster the strength to tell everyone? Would they support our choice? Who would help us on this journey? How long would our fears last?
At 20 weeks gestation Milan was diagnosed with Trisomy 18, a chromosome defect that affect 1 in 5,000 women. Many fetuses do not survive to term, other do not see their first birthday. We were given the option of termination as all reports indicated confirmation of the disorder. Milan’s heart was defected by a large hole, ultrasound showed tumors on her brain, as well as deformities of her hands and feet. “Whose report do you believe ?” was the question posed by our spiritual counsel. The journey of hope and faith began.
Milan Amanda Myrick was born November 2, 2011 at Norfolk General Hospital. Milan’s grand appearance took place in a well prepared operating room on a chosen date with a team of physicians on standby waiting her arrival, and prepared for the “expected worst”. She arrived via C-section as to give her the best fighting chance from the start. Although this decision directly compromised my well being, I had already made peace and was clear about what the end result could have been. All went well. The Childrens Hospital of the Kings Daughter would be her home for the next 4 months. We credit nothing and no one but the grace and favor of the Lord for carrying us through that Neonatal Intensive Care Unit(NICU) stay, care conferences and bedside visits and overnight stays. Mercy swaddled Milan through an open heart surgery on Jan 25, 2012. Upon discharge, when all that could be done was done, we were presented with a brochure from an agency called Edmarc Hospice for Children. Although we were clear in our belief that Milans story was not over, we were cautioned by her pediatrician not to miss our blessing.
A hand in the dark is what Edmarc became to our family. The immeasurable amount of support through home nursing visits, calls from an assigned social worker, invitations to events for the entire family and holiday support through volunteers such as the Nobleman. From day to day adjustments to holiday preparation Edmarc represents hope for wherever our childs illness would take us. They provided us full service with no regard for what our financial status was. Our family has learned to use the gift of time to celebrate life. The spirit of joy brings peace to an otherwise dark and depressing situation in our lives.
We ask that you help support them on their journey of continuing to provide their services to other families in the Hampton Roads area. They have served over 1,000 families and are currently serving 241 at this time. Your generosity would be a blessing. Consider becoming a sponsor, attending their black tie fundraiser or both. Thank you for reading Milan’s story and I look forward to sharing how her journey continues. Please help us give hope to other families. God bless you.