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Archive for the ‘Birthdays’ Category

In the depth of winter, I finally learned that within me there lay an invincible summer. ~Albert Camus

Sometimes those of us with chronic illness get so caught up in the can’ts. The shouldn’ts. The mustn’ts. I decided to focus this summer on the things I can do. From embracing the lives of loved ones lost to adventures in lands (not-so-)faraway. So we celebrated, joined, conquered, ventured, traveled, laughed, cried, and smiled. And we experienced life. It didn’t matter that I did most of it hooked up to at least 3-4 tubes at a time. It mattered that I did it.

Now that the summer comes to a close (thank you, labor day), I thought I’d go through the tradition of writing the back-to-school essay “What I did this summer.” Then I rethought. And decided I’d show you.

What I did this summer:

{And wished her Happy Birthday}

{At the 2011 UMDF Symposium in Chicago}

{With my Great Aunt Arden at the Sears Willis Tower}

{Lab safety is a must while tutoring}

{Sisters Day Out – Southwick Zoo}

{First time at Niagara Falls – Maid of the Mist}

{Seneca Falls, NY – With two of my most influential people – On the bridge from one of my favorite movies, It’s a Wonderful Life}

{For the first time since my license was revoked for seizure activity}

{TPN bag, enteral tubes, and all!}

{White Mountains in NH with my favorite in-laws}

{Haven’t attempted this since I was a gymnast – take that mito!}

{At the 2011 Mighty Matthew Benefit in Plattsburgh, NY}

{We love you, Princess Eithene!}

{So blessed to live in Boston, the Medical Mecca of the World!}

{With 4 adults, 2 kiddos, 2 dogs, and a partridge in a pear tree}

{Disappointing from the weather standpoint, but fun nonetheless}

{With a grand closing to a grand summer!}

And no one can say I didn’t do. Because I did. I really did.

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12 days ago our world lost a princess. 10 days ago we bid her farewell. 5 days ago she was laid to rest. And today? We still struggle to comprehend what has transpired.

Eithene was just short of her 5th birthday when she passed. We take solace in the knowledge that she is no longer in pain. No longer struggling to breathe. No longer hooked up to the myriad of tubies and machines that kept her with us. Eithene is free.

Ultimately, the pain comes not from the loss of Eithene – we are happy for her newfound peace – but from the chasm left in the hearts of those who loved her. Although it may offer little alleviation, we offer our hearts and love to mom Jessica, dad Sean, brother Gabriel, aunt Jill, and the entire Shriver-Hilliard clan. We further keep her best friend 6 ½-year-old Matthew in our hearts as he struggles with the loss of his nearly-lifetime companion.

In order to lessen their current ache, friends of the Hilliard family have taken up a collection of Visa giftcards in order to support the family during this difficult time. If you are interested in contributing, contact me at cnhertzog@gmail.com and I’ll direct you to the proper outlet. You can also make a direct PayPal donation here.

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One year ago, a very special little girl came into our lives. Eithene (pronounced Eth – eh – nee) Rose was a 4-year-old beautiful ball of spunk who, like me, lived with a combination of Mitochondrial Disease (an neurometabolic disorder) and Ehlers-Danlos Syndrome (a connective tissue defect). She was also born with numerous birth defects which are together known as VACTERL Association.

Over the last year, Keith and I have visited with Eithene and her family (mom Jessica, dad Sean, brother Gabriel, and Aunt Jill) whenever we were in Boston. We have grown to love them. We couldn’t leave a single store without Keith seeing something that reminded him of Eithene or one of the other mito kids we regularly visit. Eithene’s story, however, is somewhat unique. Over the time that we’ve known the family, Eithene has only left the hospital for about five days last July. Other than that, she’s mostly been in a room on the ICP (Intermediate Care Program, a step-down of the ICU) at Children’s Hospital Boston. We’ve visited through numerous infections and medical crises and seen the strength she exhibits on a daily basis. Her mother’s love and faith have been unwavering and inspiring. Not only that, but mom Jessica has helped me through a large number of my own medical crises.

Saying "hi" to True

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I’d like to introduce my good friend Matthew. Matthew is a happy 6-1/2-year-old who loves singing, dancing, and drawing. For my birthday, he drew me a beautiful card:

Matthew's Card

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Author’s note: This is a journal entry I wrote the day after my 26th birthday. While much has changed since then, the core of this entry has not. Therefore, I decided to share it again, the day after my 27th birthday, because it still rings true.

Of all the people that I admire – and there are many – three repeatedly come to mind:
1. Gandhi, because he said, “be the change you wish to see in the world”;
2. Ang, our angel, who lived that change for each of her 22 years;
and
3. My mother, because she reminded me of the belief I shared with Ang and Gandhi.

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I have a dog. Her name is True. We call her “Trooper,” “Boo boo,” “Truby,” and “True Blue”. Because she is. She’s a True-blue friend. She is a service dog and helps me with everyday tasks.

Yesterday was True’s 6th birthday. That makes her middle-aged in dog years. We are so blessed to have True in our lives so we celebrate doggie birthdays just like we do human birthdays.

For this birthday, I made cupcakes on Saturday night. They were dairy-free, egg-free, chocolate-free, and baked with agave nectar in place of processed sugar (because processed sugar is bad for doggie tummies). And because of this, they were doggie-edible.

We got up early Sunday morning to run errands (something True loves). First on our list was Petsmart. Petsmart is one of the few places we go that we let True be “just a dog.” We leave her service dog jacket in the car and take off her gentle leader. She’s allowed to sniff and greet other dogs and get pets and cookies from people she meets. She loves it. We picked up some new nail clippers for her (our old ones got lost in the move) and some specialty frosted cookies and bones for her birthday. She was in heaven.

Next, we were off to Costco. [For my pharmaceutical-dependent friends out there, Costco Pharmacy ROCKS. They charge at-cost so if your insurance doesn’t completely cover something (for me, Zofran), it’s not that expensive!] Costco was a short trip aimed at picking up a few staples in our home.

Then we were off to Beast’s house. Beast is True’s boyfriend. He’s a 10-month-old, yellow lab service dog. They are best friends:

Beast and True, ready for work


They are hilarious together. They chew on opposite sides of the same bone, swim together, cuddle, and work together. Beast even brings True toys and forces them in her mouth. They are certainly good pals. So was there any better way to celebrate her birthday than by letting her celebrate with her favorite four-legged pal?

After letting True and Beast enjoy the evening together, we headed home so that True could enjoy her allergen-free, puppy-safe cupcakes.

Thank you, True, for being there for me when I need you! Here’s to many more happy birthdays in the future!

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Today, I had my pre-op consult with the surgical team for my muscle biopsy. It seems like such an ordeal for such a small operation. I found out that the procedure is only done with general anesthesia so even after begging for local it was a no-go. But we were able to set a date for the soonest available day: September 16th. We’re looking forward to getting some more firm answers at this point. Wish us luck!

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First, my apologies for the huge gap between updates. Last week was, well, “one of those weeks.” Between work, sleep, and the multitude of birthdays, I nearly forgot to breathe and did forget to regulate my temperature.

Let’s start out with the birthdays! I want to wish a HUGE happy birthday to my friends and family:
My Daddy (August 15)
Cousin Lindsay (August 16)
Former Roomie Dorothy (August 16)
My Mama (August 18)
My “niece” Sasha (August 20)
My Uncle Mark (August 20)
My Gammy (August 21)
My other “niece” Alexis (August 21)

You guys make my world and I’m so blessed that you’ve been in my life for another year. I wish I could have been closer to all of you to help you celebrate your special days. Unfortunately, the birthday honorees live in five different states from Massachusetts to Texas to California so it was, alas, impossible. I do hope you all celebrated in the style worthy of your awesomeness.

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