Meet Lucy Kollar, our March Mighty Bee! Lucy was honored to participate in Hugo’s Hero at a recent Hornet’s game – take a look at this awesome video clip from her special evening with Hugo and the Hornets – thank you Charlotte Hornets for this amazing opportunity!

Let’s start from the beginning, can you tell us how you learned about the pregnancy and your initial reaction?

In utero, we were told that she had some mild hydrocephalus, but probably nothing super serious.  Then, on the 2nd day of life, they did an MRI that showed she had a severe brain malformation.  We did not get a truly proper diagnosis until she was almost 3 years old.

When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?

We knew that they wanted to observe her for a few days in the NICU, just in case something went wrong.  She was not pre-mature, and we had a C-section because her head was measuring really large.

Share what you are comfortable with about the NICU experience for your baby.

All the doctors and nurses were great.  That being said, it was incredibly difficult for us.  I remember the doctor handing us a paper with information about what they thought was wrong with her…they clearly had no experience with this condition because the paper that they gave us still had the web address on the bottom (they had Googled it and given us the printout), plus they could not answer any of our questions.  In addition, Kelly did not get to go down to the NICU and see Lucy for the first couple of days because of her C-section.

What was the biggest challenge that you had to face for Lucy since being home?

For us, the biggest challenge is balancing all of the therapies that we know will help Lucy with the fact that she is only 7-years old and deserves to be a kid too.  Also, it is hard to watch the academic demands of school increase and at the same time watch Lucy struggle to keep up.

When did you know that Lucy would need extra therapies?

Immediately after birth, we were hooked up with Early Intervention.  Lucy has basically been doing 3-4 days of therapy each week ever since!  Early Intervention was a huge blessing for us!

How did you hear about Bee Mighty?

I honestly don’t remember.  I THINK one of the hospital employees alerted us to the charity.  We are so thankful for y’all!

What does a typical day with Lucy look like now?

Lucy loves to be around her friends and family.  Even though she can’t talk, she loves to express her thoughts to people.  She enjoys coloring and painting, watching Princess movies, pretending to cook with Daddy, and laughing.  It is always easy to get a laugh out of her, which is GREAT!

Any advice you would give another family going through the process? Anything that really helped you get through the experience? 

This essay, an analogy for special needs parents, helped us A LOT:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

See Lucy at The Charlotte Hornets Game

Click to Watch