We are a blessed family. That I know.
My husband and I will celebrate 10 years of marriage this
fall. We have two beautiful little girls who are 18 months and 4 years old. Both
our parents are alive and well and have been married 35 and 40 years. We have
many siblings and a large extended family. Sure, there’s a lot of drama at
times, but we come from good stock!
That said, five years ago our world was shaken. We were a healthy,
young couple excitedly expecting our firstborn child. My pregnancy had been
great with very little sickness or nausea, so we felt only excitement at my
first ultrasound around 20 weeks – is baby a boy or girl? She is a girl. Yeah! But there was more… she
had spina bifida, a severe type known as myloemeningocele.
Yes, it is devastating to hear this. We knew nothing about
spina bifida, other than it being an “abnormality” or “birth defect” as it was
initially explained to us. (P.S. I don’t like those terms!) We soon learned
that it involves the incomplete formation of the spinal cord, very early in
pregnancy, and carries lifelong ramifications for our child such as possible paralysis
and incontinence. Oof!It did not matter though, I was blessed to have a baby girl growing inside me. She was our gift from God, and I couldn’t wait to meet her. We had no idea what the journey would hold and there are many unknowns for the future, but we will embrace it with our best and teach her to do the same.
Today our princess Adria is a happy, beautiful little girl
who will celebrate her fifth birthday in September!
Not long after the start of her journey, our family
encountered another life-altering health issue. My husband, who we’ll call
Daddy, had a series of three seizures within two weeks after Christmas 2009. It
was a crazy time and completely unexpected for this active 31 year old man.
However, after multiple medical tests came back normal and no other seizures
occurred for months, we thought it was a fluke.
We were wrong. Since then, these grand mal seizures have had
a major impact on Daddy and our family, and have dictated major life decisions.
Not to mention, they have given many a
scare with sudden falls at car dealerships, Starbucks and even an airport.
There have been many falls over the last few years for both
my husband and daughter – though for very different reasons. And they hurt us
all. Physically and emotionally. Sometimes to the point where it feels
impossible to get up again. Yet we do, with God’s help, we get back up again.
And now, I think I’m ready to share this journey, which
leads me to the purpose of this blog:
1.
To create greater awareness of spina bifida and
epilepsy – conditions that hundreds of thousands of Americans live with – and
to provide a resource for those who live with similar challenges.
2.
To assist us in our journey as I hope that this
can lead to dialogue where others can share their experiences, particularly
treatments and procedures that have succeeded or not.
3.
To share with friends and family who are
interested in learning more about our “normal.”
Comments and feedback are welcome. Thank you for caring and sharing with us!