I was 20 weeks along in the pregnancy with Bernadette when the doctor’s discovered she had a severe heart defect. A short couple of weeks after that, a blood test confirmed she also had Down syndrome.
I found myself wading through the endless appointments following the diagnoses completely numb. I knew it was my life, but it didn’t feel like my life.
One particular appointment I sat across from a specialist discussing once again, what I knew about Bernadette’s health conditions. Every appointment by this point started out the same. The doctor would look at me plainly and ask to explain what my understanding was of Bernadette’s heart and genetic difference. And every time, I would rattle off the information as emotionally disconnected as possible. I merely wanted to get through the appointment and get out of the stuffy office as quickly as possible.
David sat next to me as I explained her heart defect and noted her Down syndrome diagnosis to the specialist. The point of this particular appointment was to begin to plan for Bernadette’s delivery, even though we were several weeks out.
She muttered the importance of her being born somewhere equipped for caring for her high needs and low oxygen that was expected upon her birth. As almost an afterthought, head down, eyes glancing upward beyond her silver frame, she said, “That is, if she even makes it to delivery. This type of heart defect along with the Down syndrome diagnosis has a high chance of a stillbirth.”
A sharp pain seared through my heart. I gripped David’s hand and swallowed the lump in my throat. I knew I could not show this woman any sort of emotion. Her cold demeanor was unfriendly and I knew to her, I was just another “statistic” instead of the mother of two and soon to be three, strong and capable by God’s grace, ready to fight for my daughter. A mother who cared already so deeply for this unborn child, tucked safely in the womb, connected to her by an unbreakable bond.
Those words sat with me the remainder of the pregnancy and quickly became my biggest fear. What if she doesn’t make it? A possibility I hadn’t taken into consideration until that very appointment.
Last night, after the girls went to bed, I quietly hung green and pink streamers in the kitchen. I hung a shimmery fringe banner on top of Bernadette’s door so in the morning she would be greeted with beautiful shimmery goodness to know that we are celebrating her.
I can’t believe youngest baby isn’t a baby anymore. Today she turns 4. I don’t take it lightly how far we have come. Every day of her life is a gift like no other, worth celebrating. To think of how severe her heart defect was and to see her here now, running around with her sisters keeping up with their energy. Even this morning, the excitement was palpable. She saw the decorations and her little face lit up with pure joy. She ran straight to me with the squishiest hug, smooshing her face into my leg with her arms wrapped around me so tight.
She has fought hard and conquered so much in a short amount of time. My mind sometimes wanders back to that office I sat in over four years ago staring at a woman who was certain Bernadette wouldn’t make it to birth, let alone healthy and thriving at her fourth birthday. I feel incredibly lucky to have such an amazing daughter, one who has already taught me so much about life and seeing things through her eyes, untainted and carefree. It is a gift I don’t take for granted.
I don’t know where God will take her on this journey in life. Nothing is certain. But I do know I sure am excited to be with her as her mom, every single step of the way.
Happy Birthday to my sweet Bernadette. May you know how deeply loved you are, by your mom and dad, your sisters, and the Creator of the Universe (and so many others!). You have fought hard to be here and God has a purpose set out for you that only you can fulfill. You are the piece to our family we didn’t know we were missing, until you came along and fit perfectly in. Your spunk and zeal for life give are what the sweetest moments in life are made of. I love you!