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Parents

My Son's Rare Disease Was A Blessing In Disguise

My son has learned a deep empathy I have never seen in another human.

Almost five years ago ― Dec. 14, 2011 to be exact ― my son was diagnosed with a rare blood condition known as Autoimmune Hemolytic Anemia.

Every year when December rolls around, it brings me right back to that day in December. I remember the sound in my husband’s voice when he called me at work, saying, “Shelby you need to come right now. We are going to Arnold Palmer Children’s Hospital.” I heard a fear I had never heard before. I remember flying down I-4, not knowing what I would be facing when I got to there.

It can’t be that bad. Right? Why was Scott scared?

I remember it all. Every second. (If you want to read more about the story of Parker’s diagnosis, you can read more here: Parker’s story.)

I remember every face. Every corner I hid in to hide my crying. Every beep of the monitor. Everything. Pain. Fear. Anger. Frustration. Helplessness. I felt it all.

But five years later, I look back and see something far more important.

People often ask me, “Where does he get his big heart?”

I always laugh and reply, “No idea! I got kind of lucky getting such a great kid.”

But I believe he learned it at Arnold Palmer. He learned it when we held the hand of the young boy in the playroom who was too weak to sing because of his latest chemo treatment. He learned it in watching amazing doctors and nurses creating an environment of happiness and hope.

He learned it in the kindness he was shown by total strangers, coming to devote time and donate gifts to the children who couldn’t be home for the holidays. He learned it through the compassion and understanding shown by the volunteers who went out of their way to make him smile.

Parker’s time spent over those years have given me such a blessing. My son has learned a deep empathy I have never seen in another human. He cares deeply about others. He is a protector. He is a fixer. He wants to make everyone around him happy.

Today, while me and Parker sat quietly, doing our normal “just us” routine ― him eating his cereal, me working a few minutes on my computer before the day starts.

Then I came across a picture of him from five years ago, with his tubes and blood transfusions and swollen face in the hospital bed, as I backed up some pictures. He glanced at it and got quiet.

I asked him, “Parker, what is wrong? It’s almost Christmas! No frowns!”

He said to me, “Mom, that picture makes my heart hurt. I am lucky to be all better. I am lucky I get to be home for Christmas. Are there going to be kids that are sick in the hospital like I was this Christmas?”

As I explained to him the sad truth, he stopped me and said,

“Well, Mom, we need to do something like those nice people did for me. Can we do something?”

“What do you want to do Parker? We live far away now.”

“I want to send them something that will make them happy. Can I send them some of my gifts from Santa? I don’t mind sharing. And I want to send a card to Gladys.”

“Parker, do you remember Gladys? “

“Yes! She was the nice lady who when I got pokeys she made me smile and made it not hurt so much. I should tell her thank you.”

Why do I tell you this story? Because I won’t make Parker give his Santa gifts away. With his heart so big he deserves every present under the tree this year.

So I decided to help Parker give back.

We are attempting to raise funds to buy toys and goods for the same wonderful people that helped us through that difficult holiday season 5 years ago ― Arnold Palmer Children’s Hospital Hematology/Oncology Floor.

If you are fortunate enough to be able to help, Parker would be greatly thankful. Can’t contribute money but have a toy or gift or something you want us to give? Email me. I will be glad to help pay for shipping to get it to them.

All funds raised will be donated in the form of toys, goods or monetary donation made directly to APCH.

My favorite memory of our time at Arnold Palmer.