We have been coming to St. Jude for 7.5 years now. Katie was diagnosed with RB (Retinoblastoma) at 6 months old.

Our story is not unlike others (you can read about it here). It was a whirlwind of emotions that leaves me raw thinking about it, even now.

As our visits to St. Jude have moved further apart (now only twice a year) we have become more removed from the community of fellow patients. Our visits feel more and more like we are on the outside looking in rather then active participants.

On our 5 year anniversary visit I was beaming. Holding my miracle in my lap I shared with a roomful my ecstatic joy. We could finally say CANCER FREE.

I did not say it to be hurtful. And I know the responses only came from a place of pain. My joy was quickly tempered by “That’s nice. My baby will never be able to say the same.” Since that day our visits have not been the same.

We’ve lost track of friends, our schedules shifted out of sync and never realigned. We haven’t seen Dwayne at the ice cream counter in two years, but Katie still asks for him every time we come. He moved on. Children have died. Katie has grown.

One visit a family was pointed out to me. I was encouraged to befriend them. Their story was similar to ours. She was a Chili’s employ like John had been. Their son had a rare disease like Katie. They were from Arkansas, near us. Unlike Katie their son was given a timeline of only a few months to live.

I stepped onto the elevator with them. They did not know me but I already knew their story. Their son was Ian’s age and wearing the same pajamas Ian wore nearly every night. I opened my mouth to introduce myself and words did not come. Uncontrollable sobbing took over. She began to offer me words of comfort and I ducked my head and rushed for my room.

This trip we joined in the festivities at the Ronald McDonald House. There were crafts, a magician, dinner and birthday cake. We made our way outside to enjoy the coolness of Memphis after the rain. Katie said she felt overwhelmed by the noise inside. As we sat alone on the damp chairs she began to share how sad she felt. She’s been coming her whole life and today she became aware. She grew up a little more. She asked why if she was cancer free we continued to come. And in the midst of her sadness for the children around her, children we were discovering were relapsing, I had to explain to her that yes your cancer returning is a possibility.

I am raw, broken inside when I leave here. All of the emotions I felt on our very first visit — the fear, anxiety and sadness — flood back. And yet I know we are so blessed to be a part of St. Jude and the young lives we meet here.

My children have been shaped into caring curious individuals. Handicaps of others do not deter them from making friends or asking questions. They do not shy away from those who are different. Katie wants to be a doctor to make a difference in the lives of other children with cancer.

How can I feel broken and blessed all at once?

My heart aches for the suffering of these children and the heartache of their families. It is full of guilt at the joy I have when I look at my own daughter.

Come back tomorrow when I talk about survivors guilt and what to do with it.