I’ve been thinking about this day, Ellie’s first birthday, for a long time now. When Ellie was born and still in the NICU, when I was learning to understand her diagnosis, when I missed her sleeping in a bassinet beside me for those first 14 days, I read countless blogs and posts on forums about children with Down Syndrome celebrating their first birthdays. I scoured these words searching for tidbits on their daily life, how they made it through the NICU, how they made it to heart surgery and prevailed, how they learned to drink successfully from a bottle and eat, how their parents heard a diagnosis and learned to overcome their own fear. I remember thinking, we will make it to Ellie’s first birthday and I will write a tribute to our successes and how we are conquering every day. And now here we are, Ellie is one year old. Birthdays generally force us to remember the past and hope for the future all at the same time, but for me, a lot of what makes this birthday amazing is how we are living in the present. But this day is taking me back to that first day, that day that changed my life in so many ways, the day I first held my angel. There are a lot of things you don’t know about your children before you meet them, will they have curly hair, will they have my chin, or my husband’s eyes, things you expect to learn. Things you don’t think about are doctors with nervous glances, NICU nurses feeding your baby before you do, hearing a list of things that might be wrong with your baby, all moments we experienced within Ellie’s first few breaths of air. I feel sad that Ellie’s first day had to be met with so many tears. A baby’s first day should be filled with laughter and naps on her mother’s chest, not surrounded by doctors telling scared parents everything that could go wrong. Describing her struggles before she’s even had a chance to hold her mother’s pinkie. I remember wondering how we were going to make it. How we were going to survive the wait to heart surgery and conquer the procedure itself. How I was going to get Ellie out of the NICU and home to sleep in a room that was made perfect just for her before we really knew anything.
Today, we are moving through life in exactly the way I envisioned, with a few more appointments. Ellie is sleeping through the night in her purple room cuddled next to a soft bunny our good friend gave us right before her heart surgery. She is done with formula and bottles and will eat anything I make for her, as long as its pureed. She is in the 25th percentile for weight and height, well above where she was prior to heart surgery. She is sitting unassisted and crawling throughout our house, exploring the new world mobility has granted her, and getting into mischief. Today she has a slight cold, but her smiles through sneezes and a runny nose are irresistibly adorable. Tomorrow we will have her one year checkup, followed by blood work she has every 6 months to test her thyroid levels and CBC. A thyroid pill once a day is her only regular medication. Later this week she has an appointment with her physical therapist and then next week she will have her hearing test which she has every 3 to 6 months and a visit with her pediatrician. She sees her cardiologist every 6 months, and in November she’ll start monthly RSV antibiotic shots that will take her through flu season. She is the calmest, happiest baby I have ever seen. Her eyes show a genuine joy that touches everyone she meets. Every morning as I walk into Ellie’s room and open her blind I hearing laughing from her crib, she looks at me, face beaming with happiness, and I lift her into my arms as she sinks into my chest, a perfect hug within the first few minutes of the day. Every single morning. Tonight we will celebrate Ellie’s first birthday and Mya’s first year as a big sister with cupcakes and balloons, pink and purple streamers with confetti strewn across our dining room table.
As we celebrate this day, I think about that first day in a whole new perspective. I think about listening within those words, to what they were really telling me. That Ellie was born with three copies of her 21st chromosome. That the makeup of her body due to this addition will make some things harder for her. That it may take longer to feed her, but that during those moments, those hours of teaching her how to drink, I will be able to hold her close and she will let my love do the work for me. That low muscle tone will make every movement she makes, every roll across the wooden floor, every crawl with wobbly legs, a moment of celebration and joy of accomplishment. That her heart was formed incomplete, but that her true heart, that lies within every cell of her body, was never broken and will fight with every breath she has. And that words like can’t and won’t will never define a little girl who refuses to hear them. Words that were written on a diagnosis that knows nothing about who she truly is. That angels are beyond expectations we strictly place on individuals. I knew that on this day, I would be proud of Ellie, but what has surprised me, is how proud she has made us of ourselves. We have learned that a diagnosis is not the end of a dream but the beginning of a life full of miracles, and hard, yet gratifying, work, and little hands pulling on your skirt, and silly laughs, and food stuck on high chairs, and hugs, a lot of hugs, and powerful moments, and unending joy. Unending joy, words I’d love to tack on Ellie’s clinical diagnosis. Happy Birthday Ellie, we are so in love with every amazing piece of you.
A pic of Ellie and I on her first day and another of the birthday girl today.