Our daughter, affectionately called Miracle Mayah was born with a rare form of dwarfism called Campomelic Dysplasia. It carries with it a frighteningly long list of birth defects. We were informed very early in our pregnancy following an anatomy scan that our daughter had markers for chromosomal abnormalities. As the weeks continued, additional scans confirmed our daughter had an unknown condition causing clubfeet, bowing legs, shortened limbs, small chin, and probable airway obstruction. A lot of terrifying information was presented to us. More frightening than any of the medical terms being thrown at us was the prognosis the sonographer pronounced over our unborn daughter: She wouldn't be able to survive outside of my womb. They had to be wrong! This wasn't happening to us.
It was the darkest time in my life. I hate going back there, I hate thinking about the inconsolable pain, and I hate recalling how weak I was. I allowed fear to consume me. Thankfully, all I have to do is turn my gaze toward our Miracle Mayah and all that pain fades away.
Our daughter lives with a body that was described by one doctor as "incompatible with life." Sure, it's been a tough road. But that girl of ours is strong, determined, and joyful. She is a miracle. She inspires, she loves, she entertains, she learns, and she lives. She lives life in a way that baffles onlookers. Each hobbled step she takes is with a big smile on her face. Every breath she pulls in through a tracheostomy tube declares her perseverance.
Our daughter has a long list of birth defects. I'm not going to share them because they don't define her. They are just a part of the many pieces that come together to make her who she is. I suppose that means, that I love her birth defects because they are a part of my daughter. I've never said that before. I certainly didn't always feel that way. I prayed them away for years.
That's not to say that I'm happy that our daughter has conditions like scoliosis that is so debilitating that she had to undergo a twelve-hour surgery to fuse titanium rods to her spine. But I no longer see her birth defects as an enemy either. The whole package is part of the journey, and our journey has been amazing!
Our daughter has a medical condition that caused her to be born with many birth defects. If you have questions, I'm more than eager to talk at length about all things Mayah. I'm an open book, so ask away!
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