On Your Birthday

Dear Nicholas,

You are fantastic and fabulous! We love the brightness you bring to our lives, and the enrichment you bring to our family. Every day we're inspired by you. You're so young and little but so brave and somehow so tough at such a vulnerable, sweet age. We know that your battles are too much and are starting to take a toll on you. You are never alone. We are always here with you. We know that better treatments or a cure would be so much better than anything you face today. It's hard to face your sadness every week when you find out it's treatment day. We too wish better for you.

The boy who loves his grandma, friends, nurses, teachers and neighbors deserves so much better. It isn't uncommon for you to be sad over the weekend missing one of your friends, your teacher, your bus driver or wondering what he or she is doing at the exact moment you're thinking of the person. You're just so sweet like that and if Nick loves you, you certainly will know it. Your heart is so full of love. Love for everyone. That love will carry you through. We just know it. Someone who loves so deeply cannot always have tragedy or sadness, you can't, not with that much love and hope.

The gift you give all of us is love and hope. This year is your year. We know it will be your best. We have the gift of seeing, hearing, feeling all that you have to give for you still have your skills. We have you. Hunter Syndrome has not taken these things from you. The gift is that we know all of you, and this really is a gift.  We get to know your personality, hear your words and see you flourish. This is the gift you give us; your family, your friends, all who know you.

For now, tell us when you're sad, and let us wipe your tears but spend most of your time like the happy, little boy you have become. Sometimes there isn't enough bacon to make the sadness go away but you always find a way to make us smile. Better will come with time. That is our job to make better come true. This is your year. Have the best one for you.

We love you dearly, sweet Nick, dearly.

Love,

Your Family

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