By Guest Blogger Tabia McKinize
I distinctly remember lying in the hospital bed asking out loud, “Why me?” My life has never been ordinary, so I laugh at my thoughts that my daughter’s birth would be…
In my last semester as a senior at UNC Greensboro, I was 8 months pregnant dancing and wobbling but still managing to perform deep solid second grande plies. I was determined to finish my last semester and graduate with my BFA in Dance; however, my daughter had other plans. She came on her own time on Thanksgiving morning while I was visiting friends in Charlotte. I had no idea that November 26, 2009 would be the worst best day of my life.
I was diligently going to my prenatal appointments. So, when I heard my daughter faintly cry only once, I knew there was a problem. As I was recuperating after an emergency C-section, all I could think was, “Why isn’t she crying more? Why am I not holding my child in my arms?” I was told she was rushed to Levine Children’s Hospital and I would be transferred to her shortly. After a bumpy ambulance ride holding tightly to a pillow pressed against my recently cut abdomen, I arrived at Levine. No one gave me any updates on my daughter, and I felt so disconnected and lost.
A nurse finally told me that my daughter was rushed over because there was a mass blocking her airway and that she had to be intubated. I immediately cried. I was hearing words I never imagined hearing. This was not the plan.
Two friends came and made calls to my family. Day 1 of my daughter’s birth my sister flew from Oakland to be my side that afternoon. Day 3 my mom came from Memphis. By Day 5 my auntie drove from Atlanta to be with me. The support from family and friends was abundant, and it really was a village taking care of me. However, my mind was not in a place of gratitude but a place of pain.
The doctors did a chromosome analysis test to see why the mass had formed. They told me my daughter had Turner Syndrome. Her last X chromosome was missing some karyotypes and in her DNA strand instead of a line, there was a circle. At two weeks old she would have a tracheostomy tube inserted in her neck and a g-tube at a month old. Life was looking bleak, but my days in the hospital were not all bad.
After her tracheostomy surgery, I was able to pick up my daughter for the first time. To bond with her skin to skin melted my heart. It made everything more real and believable that I was her mother. We didn’t discharge from the hospital until Feb 14, 2010 when we flew on a tiny medical airplane to Memphis, TN to live with my family for the first 6 years of her life before moving back to Greensboro.
Living in Memphis taught me how to fight for my daughter—to speak up for her medical care in ways I never thought I could. We endured an intensive six plus hour surgery to remove the cystic hygroma (mass), 24/7 nursing care, medical supplies and equipment, multiple doctor visits in Memphis and Nashville, surgeries and procedures. Living in a different state as a single mother with a child who has medical complexities has its challenges, but my past prepared me to be who I am today.
Nandi is now 11 and in the fifth grade. I cannot believe it sometimes. She is now taking growth hormones and has experienced a few health scares, but she is here and well. She has performed in talent shows, plays, and is considered the “mayor” of her school by some of the teachers. She is growing up and finding her own voice.
Because of Nandi, I’m now able and skilled enough to advocate for others. I founded and facilitate a parent led group for Black Parents of Children with Disabilities on Zoom every second Thursday of the month. Turner Syndrome Awareness Month was in February, and Nandi and I both educated people through Facebook and Instagram by sharing facts through posts and videos. On February 28, Rare Disease Awareness Day, I released a viral challenge called the Disability Visibility Challenge. I’ve also been fortunate to work for the Family Support Network of Central Carolina as a NICU support staff, helping parents who were in the same position I was in 11 years ago. When I asked, “Why me?” while lying in the hospital bed, my auntie responded confidently, “Why not you?” and now I see why. I was made to make a difference and to be Nandi’s mom. There’s no one more qualified than me.
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