Foreword: Given the current circumstances of our town and the heart-wrenching sadness as a result, I wanted to take a moment to honor the love we have for our children from before birth, how that love grows every day, and to encourage all of us to cry out to our Father in Heaven for the peace that surpasses all understanding to encapsulate the hearts of the families grieving loss, experiencing uncertainty and coping with unimaginable pain.
January 2014
I just wrote a thank you card to the greatest pediatric surgeon my world has ever known. It has been 12 years yesterday since I gave birth to my precious son, and 3 weeks shy of 12 years since his life-saving operation at WVU, correcting a congenital defect and making Avery’s life possible.
Avery came along during a tumultuous time. He was my 3rdchild in 37 months. I remember sitting in my hospital bed a few hours after he was born contemplating, or maybe panicking, about how I would ever be able to successfully raise 3 such tiny people. My thoughts raced as the gravity of a preschooler and 2 babies sank in. I wasn’t ready. Our circumstances were less than ideal. I hadn’t even been able to fully freak out when the pediatrician on call came into my room. What he told me made everything I was fretting about seem so petty; I was instantly ashamed.
Avery’s belly had been incrementally distending since his birth. It was the doctor’s opinion that he may have cystic fibrosis, and needed to be flown to WVU immediately. I can’t accurately tell you what happened in those next few hours. I remember a nurse coming in and making my calls because I was sobbing. I remember being escorted into the nursery and handed a gown to put on as they placed Avery in my arms and instructed me to say goodbye in case he didn’t make it to the hospital alive. I can still feel the numbness – the inability to grasp what was happening.
Somehow we made it to the hospital. The NICU cleared as they admitted my baby boy. His tiny body endured needles and tubes as they made a way for him to get nourishment. The next 9 days would prove to be harder yet as we faced the uncertainty of his diagnosis. It wasn’t cystic fibrosis, but it would be 9 days of tests until the diagnosis of Hirschsprung’s Disease was made and then another week until he was strong enough for surgery.
Surgery came with risks. The surgeon told me to be prepared to homeschool Avery because there was a good chance he would not be fully potty trained by age 5. This specific surgery was usually part 1 of 2 and included an extended period of in-between time with an ostomy. There were permission forms to sign outlining the inherent risks of surgery on such a small person. And then after all the meetings with doctors, after all the signing, and after I once again kissed my baby for what could be the last time, all that was left to do was wait. And pray.
To think that just weeks before I sat in a hospital overcome with worry about how I would care for 3 small children. How this had changed my whole perspective! I simply wanted my Avery to live. And live he did. He came through the first surgery without an ostomy or a need for a second surgery. He was potty trained before age 3 and has been thriving ever since. I will never forget holding him for the first time free of tubes and needles. I can still smell his baby head and feel his baby breath on my chest… What began as a question of MY ability ended with a declaration by God that with Him ALL things are possible as well as the peace that even if this story had ended differently, Avery’s life pointed to the sovereignty of my Father. But that’s easy for me to say. May the love of Christ surround all those whose story didn’t have a happy ending, and may I live my life as though tomorrow is not promised. Come home safely, sweet Riley…rest in peace, precious Lexus.