Nicholas Bacon

My five year old travels under an alias, an assumed name.  He saves this alias for certain situations when adults ask him what his name is in the hospital or out in the community.  He saves this name for the best of times and the worst of times, and using this name is his little escape from reality.

One beautiful fall afternoon, Nick's bus pulled around our street, and I walk out to meet the bus. The bus driver motions for me to come closer to the bus.  I think, "ut oh, what happened?".  I notice he's a substitute bus driver.

"Sorry we're late", he says.

"Oh no worries.", I reply. "

"Well we're late because Nick told me his name is Nicholas Bacon."

"Oh".  We both erupt in laughter. 

"Your last name is so long and his first name doesn't fit on my sheet of riders." "I had to call the bus garage and ask if there was a "Nicholas Bacon." "To which they replied, no."

I asked Nick if he said his name was Nicholas Bacon. His response, "Yep." Me, "Why did you tell him your name is Nicholas Bacon, you need to tell him your real name"  All I got is a smile and a shrug, and that ended our conversation about the infamous "Nicholas Bacon".

I've had him go with a healthcare professional to get his weight or vitals, and I've had the healthcare professional say to me, "is his name really Bacon?"

Cheers to you "Nicholas Bacon", not related to Kevin Bacon but to Bacon Bacon. Cheers to you.

Bacon Forever,

Amy

"Hi Diya"

Every once and a while in this hectic rare disease life you get to witness someone else being incredibly beautiful. You witness a loving heart, a selfless individual.

One day on the Lurie Children's Hospital shuttle, Nick and I took our regular seats at the front of the bus. The back wheelchair ramp door opened, and we heard a lot of crying and moaning. I also heard a caregiver's voice say, "it's OK "Diya". We're going to get you help. Do you not feel good? It's OK we'll talk to the Doctor. I'll tell the doctor you don't feel good and what's going on". We exchanged smiles as they boarded. The caregiver, I believe was hired to take care of "Diya", and they were on their way to an appointment. The shuttle bus driver helped them take their seats and secure Diya's wheel chair. All while Diya's caregiver was kind and offering to help the driver however she could. I was looking forward but fixated on listening to her talk. She was not stressed at all by a sad patient, or should I say friend, and her glowing energy could be felt all over the bus.

During the very brief shuttle bus trip, Diya's caregiver talked to her the entire way. Sometimes there was laughing, crying or moaning coming from the back of the bus. She opened apps on her phone, Diya's favorite ones, and they sang along. The apps were meant to stimulate speech and interaction. She sang, "Hi Diya, Hi Diya, How are you?  How are you? Now your turn" She talked to Diya and said "see now we can talk, it's nice when we can talk." When Diya starting moaning, she asked her what was hurting her and told her she was going to make sure the doctor helped her. She sang songs about shoes, and always said now your turn. Diya laughed, and forgot her pain for a moment. The songs she sang will never leave my head, they were so happy and hopeful.

I stared forward and my throat started to tighten, and I could feel my eyes tearing up. I held Nick's hand because this was a reminder that even our attitudes effect their health and well being. I will never forget Diya's caregiver, ever. She was a sweet glowing bit of energy, and a reminder that you can love a person, you can love your job and the attitude you choose is the one you exude. Her job wasn't easy and she could have easily been put off by the crying and moaning but a literal glow came from this woman.  Thanks for the lesson that day, for the beautiful songs that will never leave my mind, and for witnessing humanity and the great ability to care so deeply for another being.

My fondest love and admiration,

Amy