As our weekend of birthday celebrations for Ruby's 2nd birthday comes to an end, and with World Down Syndrome Awareness day approaching this Thursday, the timing couldn't have been better to post our first entry in our BellaRu blog. My goal is to share our personal experiences with Down Syndrome and to eliminate stereotypes that surround the diagnosis.
Our journey with Down Syndrome began on March 15, 2017, the day that changed our lives forever. Not only did we become a family of 4, but we also became a special needs family.
Before I go on any further, I’d like to include an important disclaimer to give perspective to this post.
My husband Paul had a brother with Down Syndrome, so it was only natural that we opted for prenatal genetic screening. With both pregnancies, including Ruby’s, our tests came out low risk. In fact, she tested having less than 1 in 10,000 chances of having Down Syndrome or any other genetic abnormalities. I also want to make clear that had we known prior to birth, her diagnosis would not have changed a thing! Being the planner that I am, I am certain that our family would have just been better prepared for her arrival.
Ok. Back to it. :)
Ruby was born on a Wednesday afternoon. By Thursday evening, she was on a helicopter flying to a Children’s Hospital an hour and a half away.
As soon as they placed Ruby in my arms, my heart dropped. I looked up at everyone, and noticed the smiles on the nurses faces were gone. I looked at Paul and said, “she has Down syndrome.” Paul comforted me, and told me that I was worrying for no reason.
When I mentioned my observations to her pediatrician, he too, told me not to worry until blood tests were back. But, I didn’t need test results. She had the physical features, and if that wasn’t enough, well, Mother’s Intuition gave me all the confirmation that I needed.
Devastated. Defeated. Disconnected. Dreams Destroyed. That’s how I felt when she was born. I didn’t get to celebrate the birth of the child I had dreamed of having from the moment I heard her heartbeat. I felt like a horrible person, but all I could think was: Will she walk? Will she talk? Will she be made fun of or be judged? Will she be asked to prom or get to join the cheerleading team?
Paul, being the amazing man that he is, kissed my forehead and told me to rest my mind. Not to get ahead of myself until the test results came back.
A few hours later, after dodging phone calls, visits, and texts; my phone rang. It was Paul’s best friend and someone whom I consider my brother. He said something that changed my perspective on everything. He asked, “Does she have 10 fingers?” I said, “yes.” He went on to ask, “10 toes?” I smiled and said, “yes.” He asked, “Is she breathing?” With tears in my eyes, I answered, “yes.” His response? “Then that’s all that matters.” For the first time after giving birth, my heart smiled. I was her mama, and no matter the diagnosis, she was mine to love, to raise, to have new dreams with!
The next day, my intuition was confirmed. But on top of that, we were told that she had a number of other complications and needed immediate surgery. So that evening, Ruby was airlifted to a university hospital with better resources. A day after giving birth, Paul and I, raced down the highway, chasing the helicopter until we could no longer see it. Can you imagine? The precious cargo that I had carried for 9 months was now flying high above me, and there was nothing I could do about it.
When we finally arrived the NICU, all the worry, confusion, and angst in our hearts faded away. We washed our hands, put on our gloves and gowns, and walked in. All we could see, was a team of surgeons, pediatricians, and nurses surrounding her bed. We instantly knew she was in great hands and that in that moment, they were the only ones that could give her what she needed. Not me.
We lovingly rocked our baby girl, kissed her face, and told her she was the most beautiful girl in the world. And while leaving her at night was difficult, there was comfort being surrounded by other families in similar situations as us. It‘s an unspeakable bond we wouldn’t wish on anyone, but so grateful to have had.
After 2 surgeries and 42 days in the NICU, Ruby was finally able to come home. We were finally able to hold our baby without asking for permission. No wires, no alarms, no masks, no gloves, no gowns. Just us. The 4 of us, together at at last. The feeling was incredible.
As the days passed and life regained normalcy, we woke up every morning to the happiest of smiles, unconditional love, and unmatchable beauty. But most important of all, went to bed grateful for the gift we’d received.
Ruby's surgical scars tell her story of strength and resilience. Her beautiful almond shape eyes are constantly filled with endless joy. Her laid-back, happy demeanor inspires everyone she meets. Paul and I committed ourselves to take Ruby’s progress day by day. We’ve celebrated her victories, found silver-linings in her set-backs, and have become humbled by her existence. She has taught us how to be better humans. And most of all, we've learned that while life can be unexpectedly scary, it can also be gloriously surprising.
In the last 2 years, we’ve made new dreams. Will she talk? In her own time! Will she walk, with some help, absolutely! Will she cheer? The way this girl moves, I’d be surprised if she didn’t! Will she be judged? Maybe, but who isn't? Will she go to prom? Well, you can take that one up with her daddy!