Friday, June 10, 2016

Bike MS 2016 - Stand By You

“Did that hurt, Daddy?”
“Yeah, that one hurt a bit.”
I stated a fact there was no possibility of hiding, as I was already outed by the grimacing look on my face.

“I’m sorry” was Ellie’s subdued response as she slowly withdrew the syringe from my leg.
“It’s not your fault at all, Sweetie! Some just shots hurt more than others. It’s how the needle goes in through the skin, that’s all. What you did was perfect! You did another awesome job.”

“Cause I’m your little nursemaid!”

I watched how Ellie wanted to reach in for a hug so badly and I marveled at her restraint. She knows, no hugs yet, not until she’s finished. Clip and dispose of the needle. Put a bandage on my leg. Clean up all trash. Break down and put away the injector kit. One final sweep of the area. Wash hands. Then hugs!

My little nursemaid has assumed a new title in our home: caregiver.

Curiosity comes in steady streams for any six-year-old. Children of the chronically ill add another dimension to a world of already fascinating wonderments to see: medication. Early on, my goal was to relieve Ellie’s curiosity and subdue any impulse to explore my medications on her own. I welcomed her anytime I filled medicine bins or took my shots, explaining in as much detail as I could articulate and answering every question as honestly as possible.

“Why do you have so much medicine?”
“Well, I have a lot of different needs.”
I went on to explain the purpose of each medicine and supplement, the dosing differences, and the tracking I use throughout the day.

“Will they get you better?”
“Right now, there isn’t anything that will make me better. Some, like this one here, help ease my symptoms so I can walk and move a bit better. But, no, there’s yet nothing to completely heal me. That’s why Mommy and Daddy do all that stuff to support more research.”

“Like Bike MS?”
“That’s right, like Bike MS.”

“Will you die without your medicine?”
“I could get worse if I don’t take them, or if I take the wrong amounts. I need to be careful. That’s a big reason why you have your medicines and I have mine. We never take each other’s medicine, and we only take the amounts the doctor tells us to.”
Ellie remembers every lesson. She’s eager to ‘educate’ others with her vast knowledge of medicine’s efficacy and safety protocols.

My objective was successful: Ellie understands the diligence needed around medication. She’s not curious about touching or tasting any of them, and she knows the dangers associated with all drugs. Eleanor developed understanding and a strong respect for my medications.

But My Little Love soon developed an even greater quality: compassion.

She wanted to help me fill my pill dispensers, so we do it together. I count out the weekly dosing, Ellie fills the bins. Two of the big yellow pills in every bin; two of the little pink ones in the evenings; one of the little round ones in the mornings; and so on. Eventually, colors and shapes gave way to names and dosages.

“Why is the fish oil a 1,000 milligram pill but the Baclofen only 10 milligrams? They’re just about the same size?”
“The dosage just tells you how much medicine is in there. Some just have more filler, to help help you digest them easier.”

Curiosity was the precursor to her desire to “help make Daddy better”. We still do everything together, but her “helping me out” quickly gave way to actually helping me out! Her dexterous fingers work so much quicker than my numb,   feeble digits. With so many combinations of pills, two sets of eyes are always better than one. Every week, in every way, Ellie helps make me better.

I have been self-injecting medicines since my diagnosis in 1999, with my shot total now in the thousands. When I was first diagnosed, I was approved to remain stationed overseas in Korea. The Army ordered my medicine. When it arrived at the Yongsan Army Garrison hospital in Seoul, I took a 3-hour drive from my base camp. There, the medical team gave me a 6-month supply of Avonex and a videotape on how to inject myself. From Day 1 (December 3, 1999) until May 8, 2016 no one but me has ever given me one of my injections. Together, we slowly we broke that barrier.

Ellie started by watching my give my injection, always curious.

“Why do you wipe your leg like that?”
“It’s an antiseptic wipe, to clean any germs off my leg that could cause an infection.”

“What do you do with that thingy?”
“It’s an injector gun. It’s makes it easier and less painful to take the shot by pushing the needle in straight and swift. It still hurts, but not as much or for as long.”

 “Can I wipe your leg?”

After weeks of careful observation, Ellie jumped into the caregiver role. Over the next few injections, that role increased.

“Can I charge the gun?”

 “Do you always take the shot in your leg?”
“No. You just need to take it in a large muscle area. Sometimes I take it in my butt.”
“You said butt!”
We both chuckled a bit on that one. Butt.

Ellie’s diligence and care grew with every injection, taking on more and more responsibility with each new shot.

“Can I press the button (on the injector)?” ~May 8th

 “Can I clip the needle?”
For safety and convenience, my used needles are disposed of using a eedle lipping & storage device.

Eleanor is truly a caregiver in every sense of the term:
* From her tracking of my regimen: “Daddy, today is shot day.”
* To her management of my medicines: “Daddy, you are almost out of your Ampyra. You need to get more.”
* To her assistance: “Daddy, I can do that. Just let me get a band aid first, then I will clean it all up.”
* To her emotional support: “Daddy, I love you and I want you to get healthy. Thank you for taking your medicine!“

Caregivers play a role of immeasurable value, often at a personal cost best described as “not fair”. The VA healthcare system recognizes the value Family Caregivers provide to veterans (, compiling information on a variety of topics related to being a caregiver, as well the support and assistance they need to care for their loved one and themselves. I may have to push for an amendment there, as recognition and reward of the littlest caregivers desperately needs to be added to the list!

There are a lot of emotions surfacing as I write this story.  Thanks is at the forefront of them all. Thanks for having a daughter who holds such an amazing capacity for compassion, care, safety, and focus. I don’t know what Brie and I did to deserve such a treasure, but we sure do value our gift! Emotions of pride, wonderment, entertainment, and appreciation fill me every time we share our special moments.

My greatest moment of pride and appreciation came on a day when I did nothing at all.
“Daddy, is today shot day?”
“Yes, it is.”
“Can I get the shot for you?”
“Ellie, how about this. How about you do everything today?”
Eyes wide open, “Everything? Yeah. I can do that.”
“Daddy, I’m ready. Where are you taking the shot today?”
“In the butt”
“Hee Hee! You said ‘in the butt’!”

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR
* Inspiration: Rachel Platten, “Stand By You”, Columbia, 2015
I'll be your eyes 'til yours can shine
And I'll be your arms, I'll be your steady satellite
And when you can't rise, well, I'll crawl with you on hands and knees
'Cause I... I'm gonna stand by you

For the full selection of Ellie's 2016 BikeMS mix, go to:

Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.

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