No one really expects it, but in the back of your head you know there is always a chance. 

After all, we have always seen those parents on TV, who immediately count the number of fingers and toes when their child is born.

My son has ten fingers and ten toes...but also has spina bifida and hydrocephalus. 

Usually the first phase of receiving a diagnosis, at least for me, was dark and lonely. 

It all started with a routine blood test. 

Being my first pregnancy, I took all the recommended tests, no matter the statistics for false-positives. 

During my second trimester screening, I received the call that my test had come back positive for a possible neutral tube defect. 

I scrambled to jot the numbers given by my doctor for high risk OBGYNS. 

I immediately called the first number on my list, scheduling an appointment for a level II ultrasound. 

I remember calling my mother and Aaron, my son's father, to tell them of the news. 

Both shocked, reassured me that it was probably wrong. 

How could we be 18 weeks along, and not once noticed anything wrong on the ultrasounds? 

Turns out the signs were clearly there all along. 

At twenty weeks, we had our diagnosis confirmed, along with others added.  

I hardly remember getting back to my car after that appointment. 

I do remember being let out the back door of the office because I was crying so hard.  

I guess so I didn't scare the other mothers who were impatiently waiting in the same seat I was not too long ago. 

I went home and cried. 

And cried. 

And cried...

All the ugly questions were thought, and all the ugly feelings were felt. 

I looked at my sister, who was also pregnant and due any day, with envy.  

I basically buried myself in a deep, ugly, dark hole.  

I knew it wasn't healthy to stay in this situation, and I eventually knew I couldn't feel sorry for myself nor for my boy.  

I had to learn to be strong.  

And eventually that phase came. 

Day by day, I grew stronger and more excited for his birth. 

Sure if I found myself alone, those ugly thoughts would show their ugly face, but I avoided that as much as possible.  

My son is now 16 months and I'm like the advocate for spina bifida!  

When he was born, all I could see was perfection. 

As he learned to roll over, all I could see was ambition. 

When he gave me his first kiss, all I could see was love! 

I knew I had to spread awareness for something I felt so dark and ugly about. 

Although it took me being directly affected, it was something I felt I could proudly support for my son. 

I started a page for him, and soon had followers from all over! 

Little did I know, there was so many people who had Oliver's back and loved seeing his updates. 

Because of my page and sharing, more individuals now know of this diagnosis. 

I no longer have any ugly thoughts paying visits, and I continue to march on, alongside my son with nothing but positivity.  

We attend events, share his story, and continually update our page, so others know what life with spina bifida is like. 

I can tell you firsthand, it is beautiful, tough at times, and just... normal!  

Going through a diagnosis doesn't start easy. 

It's normal to go through the phases. 

Everyone I have met though, comes out the other side advocating and supporting their child and his or her diagnosis. 

More like this please...

Browse Firefly's Store...

Things you might like

Other articles you might enjoy...

Survey icon

Public Opinion…

Does your local park include accessible play equipment?