Years ago, I sat in the newborn intensive care unit gazing at my tiny baby. He was only two days old with a full head of curly hair, beautiful blue eyes and perfect skin. He also had only two fingers on his left hand and a host of other physical quirks and problems waiting to be discovered. He had just been diagnosed with a genetic disorder called Cornelia de Lange Syndrome. A few days earlier we knew there was a problem. I went in for my regular 38 week appointment when everything began to unravel. The doctor wanted to induce labor so I was admitted early to the hospital. Two days earlier David was born weighing 4 pounds, 2 ounces and with only two fingers on his left hand. After an easy pregnancy everything was falling apart. The baby we anticipated didn’t exist and in my arms I held a baby I didn’t know, with a future that felt not only uncertain and terrifying. My husband Steve and I were devastated. We were grieving. Every beep and buzz from the machines around us was a reminder of our new unknown. The bright hospital lights felt disorienting and the doctors’ words sounded like gibberish.
“Your baby has only two fingers” they had told me. I could hardly make sense of what was happening.
And yet, I sat there holding my precious David and gazing at his adorable face. Looking at his small hand with only two fingers and the verses from Psalm 139 popped into my head ‘I am fearfully and wonderfully made’.
I took a deep breath and let the comforting words of Psalm 139 speak to my heart. My baby was not a mistake. He was precious and loved, created by God, known by God. In the midst of impossible grief I felt the tiniest bit of hope.
As I internalized these truths I began to fall in love with David and accept him exactly as he was. I could see he was amazing.
At the same moment I would turn around and criticize myself harshly. Why can’t I lose 10 pounds?
Why am I so tired/disorganized/grumpy?
Why can’t I be a better wife and mom?
I could see David was precious and loved—exactly as he was, but I didn’t believe those truths applied to me.
I wasn’t good enough.
I should do better.
I needed to prove I was worth loving.
I felt inner conflict with these opposing truth. I knew if David was loved just as he was, I must be as well, but I couldn’t feel it. I felt inadequate. I felt less than.
I tried so hard for so long to prove I was good enough, to prove I was worth loving. I tried to be needless and wantless, believing my needs and wants were less important than others. All the trying and working and proving never changed my heart. No matter how hard I tried, I never felt good enough—at least not for an extended period of time.
I found myself tired and empty. I was desperate for change, but how? I needed space. I needed time. I needed to be alone to clear my head and get perspective. Two years ago in a counseling session I told my husband, Steve, I wanted to separate. I didn’t want to hurt him, but I didn’t know what else to do.
Friends, my journey has been up and down, two steps forward and one step back but little by little I’m learning and growing.
Steve and I are working hard on our marriage and we’re stronger than we’ve ever been. We fight more but we laugh more too. We’ve worked hard and it has paid off. We enjoy each other–so much. We talk more. We LISTEN more. We give each other grace.
I am learning to be honest about my need and wants. To be a good wife and mom I need time to myself. I need time with friends. I need rest. I need to allow myself to be a whole person with thoughts and feelings and moods. As I do these things I’m learning to love my family better. I believe engaging this way—as a whole person with needs and wants and thoughts and feelings is brave and loving. I am created to be me, with all my uniqueness. Just like David, I am fearfully and wonderfully made—known and loved by God.
And you are created to be YOU with all your uniqueness. Just like David, you are fearfully and wonderfully made.
It’s Limb Difference Month and I’ve created this adorable necklace to raise awareness. We want to celebrate David in all his uniqueness. And when we do that–it celebrates each of us. We are all unique, each of us is fearfully and wonderfully made.
Will you help us raise awareness and celebrate David? The brand new This Is Love Necklace is only $29.99 and it’s buy one get one FREE! So that’s $15 per necklace! This community is a HUGE blessing to us and we are grateful.