What would you do if you had a dying child but there was a chance to save him?

Guest Blog by Allison Muedder

To see him running on the playground and to hear his belly laugh as he makes his way down the slide, you would never know it. You would never know he’s dying – not yet. It’s happening slowly, and we’re racing against the clock. My little guy has Hunter Syndrome, meaning his body is missing an enzyme responsible for recycling cellular waste. Overtime, the build-up will lead to progressive physical and neurological damage. The disease is ruthless, taking children’s ability to walk, talk and eat, and then taking their lives before their teen years.

Not long after my son Finn’s diagnosis, we connected with families collaborating with researchers through Project Alive. The goal was simple: to keep kids with Hunter Syndrome alive. After learning how close the researchers were — a new gene therapy drug is ready and approved for the first human clinical trial — and funding was the only obstacle, we took action. Our family dove headfirst into raising that money. We have been furiously trying to raise the money for the gene therapy clinical trial that could save our son’s life. Most days it feels hopeful and purposeful. Enough money was raised last year to begin making the clinical trial drug, which will be ready in July. If the remaining funds are raised, we can start the trial and give Finn a shot at life. It’s so tangible and yet so maddening that money is standing in the way of turning research into treatment.

For as grateful as I am for this hope, it’s also exhausting and all-consuming. I wake up at 3 a.m. reaching for my phone to jot down an idea for a social media post, a person to contact, or the next sentence in a grant cover letter. My mind never seems to stop thinking about how we can raise the money needed. And underneath it all, I wrestle with this nagging question: “Are my children suffering now because I’m trying so hard to preserve the future?”

I wonder if the pace at which we’re running to raise money for a cure is detrimental to his own development right now and to my girls’ well-being. This exhausted, often short-tempered mama feels like I’m handing my children anything but my “first fruits” when it comes to time and intentional motherhood. Meal planning has become obsolete and laundry piles are the new decorating trend in our home. Some days it feels like the perfect storm of anger, disappointment and discouragement as I think about the quality of my motherhood journey.

I feel guilty for time I spend on the computer or phone (or both simultaneously!). I feel guilty responding to emails, managing social media, or coordinating fundraising events instead of playing, reading books, or riding bikes. I feel guilty by the amount of time I leave my girls to take my son to appointments, therapies, and hospital stays.

I never expected motherhood to look this way. I’m not only living a story I never imagined, but I’m shocked with the overwhelming mommy guilt associated with caring for a child with special needs and fighting to save his life. Regardless of the story, I think most of us are living a different version of what we probably first imagined motherhood to look like.

We can become paralyzed by the disappointment and easily fall into the guilt trap by believing the lie that we should be able to do it all.  Or, we can shift and ask ourselves – what does “winning look like in this season and how do I adapt?”  Once I accepted this season was not going to be filled with Pinterest-inspired activities and new recipes, I adopted a few habits and boundaries to preserve snippets of the intentional mothering I craved:

  • Set specific one-on-one time with each child.
    • For example, I have arranged help for my youngest two children to keep a consistent “Friday mommy date” with my oldest daughter. After several months of the routine, it’s apparent she looks forward to this time the same day and time each week. In our hectic life, this has become a constant touchpoint for us.
  • Mark specific times during the week to unplug from phone and computer.
    • I mark it on my planner as “mommy time.” This helps me release the guilt of those other time periods where I may be “distracted mommy” knowing that I’ve got the time set aside to turn my phone on silent and place my laptop in the other room. Even if it’s an hour or two, I can sense my kids “buckets” are being filled and it can carry us through those days when I must be more split-focused and distracted.
  • Do simple activities they enjoy.
    • It’s easy to get carried away with this notion of creating new activities for our kids. Some of my sweetest moments lately have been spent coloring or baking banana bread.
  • Snuggle!
    • The power of bedtime snuggles — never underestimate them.

It’s not easy grieving and accepting parts of our story that are different than we expected. It’s not easy not knowing the ending to our difficult journeys. But I’m convinced we can thrive if we realign expectations and release the guilt. I’ve come to accept my children are more adaptable than I imagined and more gracious than I deserve.

What did you read in 2017?

Hiking Through by Paul Stutzman

As the year ends, I always stop and read the lists of best books. I see if I’ve read any of them and take note of those books I have not read or even heard of yet. I try to always have a book going. I find reading calming. It is both an escape and an enrichment exercise. This year I enjoyed some great new books, some old books and some completely different genres.

What is interesting to me about what I’ve been reading lately is that only about half the books I read are ones I’ve selected. I’m in a book club and so I read the selection of the month. That has stretched me in ways no book choices of my own could have. I’ve read books I would have never picked up and I’ve loved them. I’ve read genres I would not normally be attracted to and I’ve grown as a reader.

I’m always looking for new ideas, so let me know what you’ve read and liked this year (or what you didn’t like and I should steer clear of).

Here is my list of what I enjoyed reading in 2017:

Hiking Through by Paul Stutzman

I just recently finished this book and that could be a factor in why I’m talking about it first. But I also really enjoyed it. The book is Paul Stutzman’s account of the months he spent hiking the Appalachian Trail a year after his wife died. I was given the book by a friend who read the book and ended up meeting the author.  It was the right way for me to end my own year’s journey by tagging along on someone else’s trip.

When I started reading the book, I was not sure if I would like the spiritual aspects of the book because I tend to shy away from that in my casual reading. But I didn’t mind his stories about conversations with God and his accounts of growing closer to God while he was on the trail. I’ve always felt closest to God in nature and so I related easily to his message. I also decided that I would read this book one chapter a day so as to sort of “hike” with Stutzman each morning before I started my day.  I started to look forward to reading Stutzman’s account of his day on the trail before I got out of bed each morning. I felt transported. I also felt like dropping everything and heading to the Appalachian Trail on more than one occassion while reading the book.

Stutzman details each day similarly. He writes about where he slept, how many miles he hiked, the terrain, the surroundings, the weather,  the flowers he ate, etc., but I didn’t get tired of reading these accounts. I found the repetition comforting and the story kept me engaged and reading. I was sorry Stutzman finished the trail and I finished the book because I lost my morning hike through the pages. He’s also written a book about hiking the Camino de Santiago in Spain. That hike is on my bucket list, so I’ve got Stuck in the Weeds, Stutzman’s account of that journey and time on the Mississippi River, on my list to read in 2018.

Finally, I just wanted to share a little story. I read a short devotion each morning and have being doing that for a couple of years. So when I was reading Hiking Through each morning, I read my devotion first, then a chapter in the book. On Dec. 20, my devotion in the monthly reader I use called Living Faith was titled, “All Shall Be Well.” I finished the devotion and picked up Hiking Through to read the next chapter about Stutzman finally reaching Maine (he began his hike in Georgia 2,200 miles from it’s ending point in Maine). As I read the last sentence of the chapter, I saw the last three words, “all was well.” Maybe somebody was trying to tell me something? Or maybe it was just a happy coincidence, but it added to how much I enjoyed this read.

Three books I read this year that I’ve already written about:

  • Being Mortal by Atul Gawande – This is a book I would have not found on my own. It was a book club selection and I did judge this book too early thinking I was not going to get through it because it was written by a doctor about end-of-life issues. Boy was I wrong. I loved this book and have recommended it repeatedly since I finished it. I wrote about it in another blog along with Option B by Sheryl Sandberg. Read more here.
  • What do you do with an idea? by Kobi Yamada, illustrated by Mae Besom – This is a children’s story book that I’ve written an entire blog about, too. I continue to give it as a gift to both children and adults. Read my blog on the book and take five minutes to read this story book if you haven’t already. It could spark a little fire inside you like it did for me.

Back to the other books I enjoyed this year. One is Hillbilly Elegy by JD Vance. My book club read this book in March 2017 and the timing was perfect. A few months into the new presidential administration it was fascinating to read JD Vance’s account of his life and his explanation of why there is such a deep division in this country. I believe Vance finished the book well before the election but it is so interesting to read now, in today’s political atmosphere. Having said that, the book is not about politics. It is about JD Vance’s life growing up poor in Middletown, Ohio, and the Appalachian town of Jackson, Kentucky.  The subtitle, “A Memoir of a Family and Culture in Crisis” sheds more light on the real meat of the story.

This year I finally read Handmaid’s Tale by Margaret Atwood. It was published when I was in high school but finally made it to my bedside table this year. And it scared the **** out of me. If you have not read this novel, it is worth your time. So much has been written about it I am not sure what else to say about Atwood’s book. Read it before you watch the new TV series. The books are always better.

This year I read my first graphic novel, March, Book 3 by John Lewis and Andrew Aydin, illustrated by Nate Powell. The book is about the civil rights struggle in the 1960s. I did not read comic books when I was young and it took me a few pages to figure out even how to read a graphic novel. Once I figured it out, though, I found it a statisfying way to read a story. I am hoping my teenager reads this one in 2018.

I love to read fiction based on historical events. This year that book for me was Women in the Castle by Jessica Shattuck. What I loved about this story is the perspective. I’ve read many fiction books set in World War II (I think my all-time favorite is All the Light We Cannot See, which I read in 2016) but this was the first one I’ve read from the perspective of German citizens living through a war they did not support either privately or as a part of the resistance. I found a few of the characters unsympathetic but I enjoyed the view other characters gave me through the story.

After listing to an NPR interview with Jay-Z, I decided to read Decoded, his book about hip-hop, his life and his music. I don’t love hip-hop and usually can only take one or two songs before  I asked my daugther to change the channel or switch the song. Jay-Z’s book gave me a little more appreciation for the genre. I still don’t listen to hip-hop but I can appreciate the music and the stories being told much more now.

One of the things I love about reading is talking about books and sharing books with others. Just the other night I was meeting with a friend and client. Like so many other conversations, we ended up talking about the books we are reading. I jotted down the name of three books she recommended and she was scribbling down some of the titles I shared.

Reading is solitary and personal. But it is also universal and unifying. I’m workign on my list of books to read for 2018. The first one on my list is Finish, Give Yourself the Gift of Done by Jon Acuff. I saw him speak earlier this month and thought this would be a good way to start the new year.

My daughter will begin a new semester course this month on military literature. The first book in the course guide is Band of Brothers by Stephen Ambrose. I was lucky enough to take a class with Stephen Ambrose when I was a student at the University of New Orleans. He taught a large WWII lecture class maybe every third semester. I had read the book, Rise to Globalism, as a part of a history class my senior year in high school. Three years later when I was scheduling classes, I saw his name and scrambled to get into the class. It was, hands down, the best class I took in all of college and since. I can’t even begin to tell you how excited I am that my daughter is reading one of his books now.

I’ve read Pegasus Bridge, Panzer Commander and Eisenhower, so I’m planning to grab Band of Brothers as soon as she is finished with it.

Here’s to many more good reads in 2018.

No words necessary, just hope and possibility

Achilles Nashville's first race in 2014.

EDITOR’S NOTE: This blog was originally published Wednesday, May 14, 2014 on the Overbrook School Blog. It was written when I was serving as director of communications for Overbrook School and campus host facilitator for the first Achilles Hope & Possibility race in Nashville.  The race continues this weekend, Oct. 21, 2017, on The Dominican Campus. Join me there again this year. 

St. Francis of Assisi said, “Preach the Gospel at all times. If necessary, use words.” For those involved with Achilles International Nashville Hope and Possibility race, words were not necessary. The gospel was living, breathing and, in hundreds of cases, running a five miler.

Melanie Yappen was one of the original founders of the Achilles International Nashville chapter, an organization that pairs able-bodied athletes with disabled athletes for weekly runs and road races, and the first race thre years ago. Mrs. Yappen said nearly 700 runners ran the first race with 10% being disabled. The disabled runners ranged from blind runners to amputees. Some completed the race in wheel chairs and on hand-pedal bikes while still others were pushed.

“It was truly an inspirational celebration of running by athletes of all abilities,” said Mrs. Yappen, that first year as she stood at the finish line cheering on all athletes and giving out as many hugs and high-fives as she did medals. “We hope on a broader scope that our community-unifying event will paint a brighter horizon for healthier lifestyles for people with disabilities and an increased acceptance of people with disabilities.”

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Value responsiveness

Do you value responsiveness?

Do you consider responsiveness a value?

Is it important to you that someone with whom you have a personal or business connection is “quick to respond or react appropriately or sympathetically”?

It may seem out of line with values such as integrity, respect, honesty and responsibility but responsiveness is a tremendously important value that seems to be slipping away from many in both the personal and business world. Responsiveness may be corroding, in part, because of the technology that on the surface seems to help us stay better connected. However, the blame cannot be all technology’s because responsiveness is a human value not an algorithm.

We all get emails, texts and (sometimes) letters and phone calls daily. They can pile up, especially if you’re running a business or a school or an organization large or small. However, not responding to these messages sends a message whether you intend it to or not.

“If someone walked up to you and asked you a question, would you turn around and walk away from them without responding? Would you ever do that to someone?” asked Shana Rossi, director of admissions at Padua Academy and consultant with Partners in Mission. Yet, not responding to emails, texts and phone calls does essentially that. It turns around and walks away from someone without a word.

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Camille, Betsy, Katrina, Harvey & Irma

Recommended reading about Katrina.

It was Sunday morning and I woke up early, maybe 6 a.m., because I couldn’t sleep. I went downstairs and turned on the TV and there it was staring at me from the radar, eating up most of the Gulf of Mexico. Hurricane Katrina.

Heart racing, I grabbed the phone and called my parents, who lived in New Orleans. My mother answered, groggy.

“Mom, get up! What are you doing? You need to evacuate now.”

“We’re staying,” she said. She always said that.

Everyone did before Katrina. I grew up in a suburb of New Orleans and my whole life I heard stories about Camille (1969) and Betsy (1965), like they were family members who were always getting into trouble. I think maybe my Uncle Kenny lost his camp in Betsy? And maybe it was Camille that my mother told me she sat in her house and watched the trees bend half way to the ground in the howling wind, never breaking, just bending with the storm? I have one vivid memory of sleeping in a hallway when I was young – not even six – with a mattress leaning against the wall making a tent of sorts for me and my sister. I don’t remember which hurricane it was. But I was gone by the time Katrina hit. I woke up in Tennessee that Sunday.

Continue reading “Camille, Betsy, Katrina, Harvey & Irma”

Far is near

Welcome to America

Maybe a year and a half ago my daughter came to the dinner table one night and asked, “How much does it cost to send candy to the Netherlands?”

“What? Why do you ask?” we responded.

“I want to send some candy to the Netherlands,” she replied nonchalantly.

“To who?”

“To my friend. She is sending me some candy from the Netherlands and I’m sending her candy from America.”

Whoa. Wait. What?

“Did you give someone from the internet our address?”

Continue reading “Far is near”

Language lessons

Ms. Hollahan's students

Amy Wieck Hollahan taught for 17 years before she found her calling as a teacher.

This week she met a new group of students, most of whom don’t speak English. She can’t stop smiling when she talks about these children who come into her classroom each fall having just been torn from their former lives and “placed” here in Nashville. She will help them learn English this year, teach them about classroom rules and even get in some math lessons. But they have taught her so much more.

Hollahan spent 15 years teaching in a private Catholic school before she decided to move to Metro. Her daughter was teaching at Haywood Elementary and she decided to apply. She taught fourth grade for two years at Haywood before she was asked to get her English Language endorsement and teach English Language Learners (ELL), or as they are also called, SIFE (Students with Interrupted Formal Education).  The first year she taught she had 19 children in her class from seven different countries.

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Summer reading, option B

What did you read this summer?

I’ve read two non-fiction books recently and I seem to be recommending them to everyone. The first I would have never picked up on my own, but it was the monthly read for my book club: Being Mortal by Atul Gawande. The second book I had been waiting to read since I first saw Sheryl Sandberg in an interview talking about it: Option B by Sandberg and Adam Grant.

Being Mortal’s subtitle, Medicine and What Matters in the End, gives a hint at the subject matter but not the depth and care that Gawande gives the material. Gawande’s writing mixes medical science, journalistic storytelling and personal sharing. I never felt overwhelmed with the medical subject matter; rather, I found the book engaging and meaningful.

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I have an idea!

What Do You Do With An Idea by Kobi Yamada

My friend Caroline is a librarian. I like librarians. You can talk books.

Plus, Caroline is also an Anglophile, so we can chat about dodgy things happening across the pond. She’s funny, too. And I like to sing, “Sweet Caroline,” to her.

But one of my favorite things about Caroline is she gave me an idea. Actually, it was a book she showed me about an idea, “What Do You Do With An Idea?” by Kobi Yamada.

I read the book and instantly connected to its message. Though presented as a child’s story, the book spoke straight to the heart of this adult. I love its illustrations by Mae Besom. Each depicts an idea as a living, breathing thing that grows and becomes more colorful in the process. Sketches of tan and gray slowly become infused with brighter yellows and blues, greens and eventually even reds as you turn the pages.

Yamada’s story takes readers through a familiar journey, a journey that begins with a small thought. The thought or idea continues to pop into your head and try as you may, you cannot stop thinking about it. I think we’ve all experienced this phenomenon. Yamada encourages the reader to gently reconsider ignoring that idea.

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Caution: sign ahead

Communicating through pictures —  and, more specifically, signs — can be a powerful way to send a message.

My daughter commented the other day that on our rural street there are not many signs. No bent arrows indicating sharp curves ahead. No speed limit indicators. Nothing telling you to “keep right” or “yield.” There is, however, a sign with a picture of a cow. Below it is another sign that reads “loose gravel.”

Loose gravel and cows ahead

Clearly there could be cows ahead, and the road is covered with loose gravel instead of smooth pavement. I live on this road and it makes for interesting travel (and running), but I digress.

I’ve started to notice these types of signs popping up in more locations. Using just color and a simple black silhouette picture, the signs communicate a message. They also tell a story.

In my commute from country to city, two signs I pass tell the story of a journey. There is this:

Tractor warning

And then this, about 35 miles away:

Fore!

Continue reading “Caution: sign ahead”