To the Mother Who Just Received Her Child's Spina Bifida Diagnosis


I was you. I am you. I will forever be you. I wish with all my might I could take you by the hand and guide you into your future and show you the beauty of life that is about to begin.

On the two year anniversary of my daughter’s diagnosis of spina bifida, I am able to reflect on the experience in a positive manner, wishing I could have had the mentality I do now compared to when I was sitting in the doctor’s office, crying and mourning the loss of a healthy child. Reading back on my reflection written on the one year anniversary of our d-day (diagnosis day), I referred to the day as unequivocally the worst day of my life. Today, with a new mindset and a beautiful 19-month-old daughter, I see our d-day as the day my life was given a purpose. The purpose of raising the most fundamentally astounding daughter, advocating for spina bifida awareness, forming support groups for parents of children with disabilities, and volunteering at our children’s hospital to provide families with a sense of hope and perseverance.

As you listen to the doctor tell you statistics about your child’s condition, understand these are only numbers. Your child is not a number nor a statistic. With you by their side, the world is filled with endless possibilities.

As you scramble to feverishly take notes on how your child’s life may play out, know that no one, not even a doctor, can predict the future. Your child will inherit your strength, your love, you dedication, and your advocacy and will grow to be to a powerful miracle of life.

As you grapple with your emotions and try to come up with questions to ask the doctor — but can barely think as you are overcome with grief and sadness — know that your answers lie in the hands of people you have never met. Find your people; find families who have experienced your d-day. They are the experts, they know your questions before you can even ask them. Network with them, meet them and their child. Here is where you will find your strength and desire to go forth.

Lastly, as you think of how your life will be different as a parent of a child with disabilities, do not fret on it as a loss. You are about to embark on the most extraordinary journey imaginable. You will learn to take nothing for granted and the tiniest of milestones will bring you to your knees in tears of pride and joy. You will share a bond with your family that will unite you in unprecedented ways. You will feel the love and exuberance of your child who will give you the resilience you need to overcome the challenges that lie ahead.

To the mother reading this, you are me and I am you. Your life will forever be changed; embrace it and take with you the love of all parents of kids with disabilities as you commence on the journey of raising a child with a disability.

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