To the Pregnant Woman worried about Zika,
Days ago I read your comment under a news story on the Zika virus. You wrote, “I can’t think of anything worse than having a child born with a horrible brain defect.”
Your comment was like a dagger to my heart.
I can see you now sitting there in the doctor’s office waiting for your monthly checkup while reading and commenting on that story. I can see the pregnancy glow you emit, but behind that glow I can see a fear. A fear that women before our generation never had to experience. A fear of the Zika virus–a virus spread by infected mosquitoes throughout South America and southern parts of the USA. A virus that can be spread from a pregnant woman to her fetus which could cause a brain defect. A brain defect that would impact your precious baby in a way that is life changing.
When a woman is pregnant she prays for a healthy child and expects that tiny newborn to be exactly that upon his or her arrival. Will he have his daddy’s eyes? Will she have my personality? During one’s pregnancy she envisions what her future is going to look like … sleepless nights, chasing a toddler, t-ball practice, piano lessons, hours of homework, first school dances, high school graduation, then it’s off to college. She plans out life with her little one perfectly, and most of the time the plan goes accordingly. But sometimes the plan flies out the window…
I read your comment, then read it again to be sure I read it correctly. My heart stung and a knot formed in my throat. My eyes filled with tears as I looked at my precious nine-year-old son happily playing with his favorite stuffed animal. In a way your comment felt like a slap to his face. While I am fairly certain you know nothing about raising a child with a brain defect or disability and I know you had no ill intent, I couldn’t help but feel the need to explain that having a child born with a brain defect is far from “the worst”.
You see nine years ago, long before I had ever heard the term “Zika,” I delivered a beautiful baby boy. My plan lasted all of 30 minutes before my dreams for my son crashed. Soon after my son was whisked away by a team of medical professionals we were given the news that he was the sickest baby in the hospital and had a brain defect. Time stood still.
My tiny boy was born with a rare brain malformation and the life that he would lead would be much different than what I had planned and I grieved. I recounted every food I ate, medicine I took, activity I participated in. I had to find the reason why he was born this way, but I couldn’t. There was no explanation. I grieved the life he was “supposed” to live until I could cry no more. When the tears dried I looked down at the same feet that kicked within me and listened to the same heartbeat I fell in love with and I picked up my broken dreams and became the mom he needed me to be.
Raising a child with a brain defect is challenging. My son has needs that require care for every aspect of his life and it’s exhausting. He experiences things that I cannot imagine enduring myself and I worry about him constantly. He lives a life that revolves around doctor and therapy appointments. He cannot speak, walk, or eat by mouth. He’s spent half of his life in a hospital, a hospital that we call our home away from home.
However, his life here with our family is beautiful. His diagnoses are nothing more than words on a paper. He is so much more than those words too. He is the light of our life, providing a joy in our hearts with his contagious smile and laughter. His life has taught me countless lessons that I would have never learned without him. He enjoys listening to his brothers play with him, he loves being outside with his daddy as he raises his hand to feel the wind, and he yearns to snuggle in my arms after everyone else has fallen asleep. His life is worthy and meaningful just like all other children.
He’s the absolute best part of me. If I somehow had the choice and could go back in time, I would still choose him-a thousand times again I’d choose him.
I understand your fear and respect your opinion because no one can feel the feelings you do. After almost 10 years of raising a child with a brain anomaly I know there are worse things in life. I think raising a child to believe they are superior to children like my son is far worse than the latter. It is imperative for us as parents to talk to our kids about those who are different and the importance of including them in all aspects of our lives so we can understand them better. Our children will grow into adults one day and we want them to know that people with disabilities have dignity and can lead a meaningful life with the appropriate resources. And I hope they will not fear that having a child with a brain defect is the worst thing imaginable because they’ll know otherwise.
I know this won’t erase your fear or worries of the unknown because we all certainly hope our child is born healthy, but I pray that you can try to understand my point of view as the mother of a child who is wonderfully differently abled.
The life of a child with a brain defect requires complete support and takes a different path down the road we travel. This path will give you new perspectives and will change you for the better if you allow it. Although the path is bumpy it’s not the worst; it’s an incredible ride that you’ll never want to end.
Beautifully written!! <3
Thank you for writing this. My second son is 3 months old and was diagnosed with having a substantial stroke in the hours before birth. We are getting through it- and perhaps even coming out of the worst of it now, but I still find myself grieving what should have been. I cry for the life I wanted him to have, for the picture I had in my head that has changed drastically, and for the uncertain future that lays ahead. I wouldn’t change him for anything in the world, he is the sweetest baby, but I do wonder when the guilt and grieving stops. Thanks for shining a light on the life of a mother to a special needs child. The picture may be different, but it is still beautiful. ?
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