Where is the best place to begin my story? Or really, I should say where does our story begin? Because we are a team Charlie and I – and this is his story. I am just the storyteller.
If the Lord knows all things – if all of the days of our lives have been written before we are even born, at what point should I choose to start this story? A story that has already been written.
Did it start with my own birth? A strawberry blonde little girl, long and lean, with feet that were too big for her body. A little girl with a life so full of promise. A girl who followed all of the “rules,” who grew up striving to meet the expectations of those around her. A life full of love, laughter, family and friends.
Or did it start in adulthood? With my marriage to Alex? A marriage full of only love and promise. A marriage that would eventually welcome children.
Maybe it starts in a dark room. A room in which our baby’s image fills the screen. It’s a boy! Or is it when my obstetrician sat down to tell me they found some “soft markers” that often indicate Down syndrome? Perhaps my response was telling, “I’m not surprised.” What kind of mother would say those words? Isn’t a new baby supposed to only mean joy? Perfection? Not complications. Did I already know?
There were many other visits to that dark room – seven to be exact. Our story could start with a fourth visit to that room. Our boy – Charlie – filled the screen. Kicking, sucking his thumb and wiggling about. He was just a baby. He didn’t notice the serious doctors or ultrasound technicians analyzing his every move. Looking at the shape of his nose. Measuring the length of his limbs. His heart. Kidneys. Even the folds on his neck. Down syndrome. This is what they were looking for. This is what we so desperately didn’t want them to confirm. Such a diagnosis is the end of the story for so many babies.
Not our baby. We opted out of invasive testing. Our minds wouldn’t have been changed by the results. This was our baby. It was also comforting to hear the perinatologist ease our worries – that our baby was “fine.” Perfectly healthy. Even the geneticist gave us reassuring statistics. Only a 3% chance. We even optimistically changed around the statistic liking how a “97%” chance of a healthy baby sounded.
So we moved ahead. We talked about that small “speed bump” in the middle of our pregnancy and comforted ourselves with the knowledge that our baby was perfectly healthy. We had to. Thinking anything else would have taken away the joy of the pregnancy. It makes me sad to write that now.
The Lord remained busy, softening my heart. Preparing me for big changes so subtle I didn’t even notice. I read two books that featured characters with Down syndrome. I was reminded of the small whispers that I heard from the Lord when I was only a teenager. Whispers telling me that I would have a “special needs child.” Whispers that I never dared to share, lest they come true.
Most people would assume that the obvious starting point for a story is a birth. It is after all, the most quintessential beginning that we as humans have. The beginning of a new life.
Charlie was born on August 30, 2007. Charles Andrew. 7 pounds 10 ounces, 19 inches. He came easily into this world. His eyes were open, taking everything in. His eyes also told us of our new journey as parents. There is no doubt in my mind that the Lord gave us this window. It was so clear to us the minute he was born that our new baby son had Down syndrome. Only two hours after his birth his eyes were less puffy and didn’t reveal his “secret” as they had at birth.
But no, that is not our beginning. This story begins before Charlie’s first birthday. There is much about Charlie’s first year that I will share. Laughter and joy that would melt your heart. Lies and deceit that would bring me to my knees.
The Lord has been clear. This is our beginning. This was his plan for us. There was no mistake.
I’m nervous to be sharing so much. To share so much of myself in such a public way. I originally thought the Lord would use me to serve as an advocate for special needs individuals. That was to be my mission. Tackle all of the injustices. Seek better medical and therapy treatment for all. Save the babies! Save the world! Fine, I would do it. That didn’t intimidate me. Yet, how was I supposed to accomplish this when I couldn’t even read an article on prenatal testing without sobbing?
I totally missed the point.
My purpose wasn’t to become the loudest advocate. The Lord gently reminded me that there are already plenty.
My purpose is to mother with grace. To share all the blessings of our family – but to especially share the blessings of Charlie. To show the value of life – every life. All to glorify Him.
Writing our story is a blessing. Yes, it will be painful and heartbreaking at times. That may sound like such a strange thing to say, but I couldn’t have written these words any sooner. I was too raw. I had no perspective. I was simply surviving. My darkest moments were so deep – so deep that I am now ashamed looking back. I may share them later, they were real; I don’t want to pretend that part of my life didn’t exist. But for now I feel led to focus on the beautiful life that has grown from the hardened soil.
My hope is that the joy and love that fills our lives today will shine through my words. May our story bring hope to those that are searching for light in the darkness. May our story of blessings bring Him glory.