Day 9: How Diagnosis Affected Pregnancy

Welcome to 31 Days of Spina Bifida Awareness: Day Nine!

Today I want to share a little of how that diagnosis of Spina bifida changed my pregnancy.  In the first month after diagnosis I was in a constant state of information overload.  We met with doctors, toured a children’s hospital and NICU, and tried to process things.  I researched things on the internet (something I really don’t recommend!) and thank heavens I stumbled across and international forum for those who have or are raising someone with Spina Bifida.  It was so encouraging to get real life information and see pictures of children who had SB.  That place is Spina Bifida Connection and I’m even more active there now that we’re living with SB in day to day life.

Here is some early journaling from that first month that shows another way diagnosis affected me during pregnancy:

“It's also been a great reminder of what matters most. So many times before during a pregnancy I've said "I don't care what the baby is, just so long as it's healthy." Admit it, you’ve said it too, haven’t you? Now that we're faced with a baby who is not healthy I see just how limited my view was. We're thrilled to have Mason and it doesn't matter that he'll be bringing health issues out of the womb. His life is precious, healthy, sick, or otherwise.”

It was a true perspective changer for me.  Mason was loved and valued because he was a child of God, as every baby should be loved and valued.  It did not make the worries go away, but everything was worth it for the sweet child growing as well as he could in my womb.

I wish I could go back and hug my hormonal, pregnant self who was worried about what was coming.  I would tell myself that the pregnancy is the hardest part.  I know that sounds backwards, that actually having a child with disabilities would be harder than the pregnancy.  During pregnancy all you can do is wait and pray and worry.  There are few answers beyond ‘wait and see’.  And that doesn’t really change once the baby is born, but there is one significant difference – you can finally see, touch, hold, and comfort your baby.  The worries do not magically disappear and in many ways life gets busier and more complicated once the baby is born.  But being able to touch Mason made everything easier.  Meeting him and getting to know his personality, seeing the joyful spirit he has, it made everything easier.

There is more to say about how diagnosis changed my pregnancy but I’ll stop here for today.  Come back tomorrow to learn more!