Spina Bifida Awareness month: Update on Berkley

By tch-main Wellness

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For as long as I can remember October has always been my favorite month. In our family October is about birthdays, celebrations and the start of the holiday season. A time of light, love and family.

Almost five years ago, October took on a new meaning for us. Looking back, five years ago this month, I remember being pregnant during my 23rd birthday celebration.As I blew out my candles that year my only wish, my only prayer, was for my unborn baby to be healthy. I think a part of me knew that wouldn’t be the case, and God was gently preparing my heart for the months and years to come.

In November 2012, my husband and I were told that our unborn baby girl had the most severe form of spina bifida. There are no words that adequately describe the feelings of devastation, helplessness and heartbreak you feel as a parent hearing those words. The words themselves are nothing more than a meek representation of the searing pain a diagnosis can give.

After a battery of tests and doctors’ appointments, my husband and I decided that fetal surgery was the best option for our family and our girl. Berkley and I underwent fetal surgery to repair her neural tube defect on Dec. 13, 2012 and she was born again on March 14, 2013.

We were blessed with THE BEST doctors in the business. They not only offered medical expertise, but also hope during the storm. Prayer, modern medicine and complete trust in God’s perfect plan for our life have given us a beautiful family and a deeper appreciation for each other. When you are first given such a daunting diagnosis it is hard to look past the heartbreak, but I am here to tell you the future holds so much more. Hope. Peace. Beauty. And more love than you can imagine.

image3 (1) Fast forward five years and we are BEYOND blessed with a 4.5-year-old little lady who is spunky, sweet, loving, smart and brave. She is SO brave. Berkley does not have hydrocephalus, does not have the need for a shunt, is walking independently and is potty trained without the need for medical intervention!

Being a parent and receiving the laundry list of possible complications that a child with spina bifida can have is crippling. But, that’s just it. A possibly is not a certainty. Spina bifida is known as the snowflake diagnosis because no two cases are the same, and just because something can happen doesn’t mean that it will.

October is Spina Bifida Awareness month. It is now not only about birthdays and holiday celebrations for us, but so much more. It is about hope, strength, bravery, determination, love and promise. No matter what the future holds, no diagnosis or complication can change who our daughter is. She will always be our witty perfectionist with a little extra spunk. She is beautiful and strong; so much more than her diagnosis.