Two years ago today we woke up to a flooded basement and our dog getting sprayed by a skunk. We raced to an appointment at the hospital to have our baby flipped because she was breach. The flip was successful, labor was induced, and 13 hours later Eloise was born. The first thing I remember about her birth is that she never cried and the second thing I remember is how right she felt in my arms. The rest of that day doesn’t matter. Doctors with worried looks, her being taken from my arms to the NICU, and a diagnosis we knew nothing about are merely details. What I remember most from two years ago today is that Ellie entered this world smiling and that from that first moment in my arms I knew she was perfect.
Although the moments of importance that day, the love we felt, the happiness of her arrival, are what I hold close to my heart, I can’t deny that Ellie’s birthday leaves me with mixed emotions. I don’t know if I’ll ever get over the sadness and regret I feel for Ellie’s first day of life. When babies come into this world, when parents welcome their child, the moments are filled with laughter. Hospital rooms are covered with flowers and balloons. Mothers sit holding their newborns, fathers smoke pretend cigars and gaze at their growing families. Phone calls are made, pictures are taken, that first day is special. Every moment within it screams happiness. But Ellie’s first day was different. She was born, and I held her, and I laughed and felt that intense love, that undying love, breathe within my bones. But then our midwife had a worried look, she said Down Syndrome and things got foggy. And within minutes an on call doctor was being paged and Ellie was being taken to the NICU. That moment was the hardest, her being taken away from me right after she was born, that ache still sits in my heart, that empty feeling from two years ago. One blurry moment followed another and I was laying in a hospital bed without my child. I was thinking of my baby, worrying about her and feeling so far away. A nurse came rushing into my room. I flung myself from the bed, scared for my child and this nurse held me, she hugged me like we were old friends and she said everything was okay but my baby needed to be on an IV and she needed consent. I wandered down the hall in slippers and sweatpants and rang the bell to gain entrance to the NICU. I had to ring a bell and ask a nurse if I could see my child. I slowly walked in, my eyes hurt from crying, and I sat by my daughter’s bedside. That first night, Ellie’s first hours of life, we never called friends and family to tell them the good news, we took only a few pictures and instead of a room full of flowers we sat in a rocking chair gazing at our child to the sound of beeps and alarms. We heard a diagnosis and we let that sink in. I wish so much I could change those moments. I wish I knew then that we would all survive, better than we had before.
Flash forward two years and that day feels so different. I wish I could speak with myself that day knowing what I know now. I wish I could give myself a hug and say, “it’s okay, you can cry now because different is hard, and fear has the power to physically hurt, but those tears, they are the seeds that awaken you to a new perspective, a shift in your life, a birth for yourself, to see that difference is a tiny detail in something amazing.” I would have hugged myself, and cried, and flashes of this wonderful life would have surrounded the room and I would have known, this diagnosis does not warrant tears.
For some reason, I’m crying as I type this. I don’t know if it’s because I feel guilty for the sadness of that first day or if it’s because I’m so happy with how far we’ve come. In two years, this little girl has changed our lives. Those newborn days, weekly weigh-ins with the doctor, numerous echocardiograms, heart surgery, fighting through recovery, fighting to stand on her own, fighting for those first steps, walking, then running, the first time I heard her sweet voice, that first wave, that laugh, that beautiful all encompassing laugh. This little girl who doctors assumed was broken, could never be described as such. I’ve said it before, but words on a page do not define a person. Ellie is strong and brave and beautiful and smart and has a chromosomal disorder. Details. Details don’t define. A heart defect does not define a hearts ability to love. Low muscle tone doesn’t define a body’s ability to grow. And Ellie’s diagnosis doesn’t define who she is.
With time, the glory of Ellie’s amazing life will overpower that first day and I’ll forgive myself, she will force me to. To think that different seemed so hard, when loving Ellie is the easiest thing I’ve ever done. To think that Ellie may have to work to gain acceptance from strangers her whole life when acceptance of others comes easiest for her. To think there were tears on her birth when the happiness she has given me every day since then is beyond measure. Ellie’s birthday will always be more than just a day, it will always remind us of how far we’ve come, there may always be a part of it that seems bittersweet, but I know that celebrating Ellie will always be easy, happiness exudes from her body, extra chromosome included.
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