ImproveCareNow Parents


Transitioning at Children's Mercy Hospital

When I was little, I had a lilac-purple colored bicycle. There were shiny streamers at the ends of the white handlebars, which would often catch the wind as I rode through a field near our house, my parents cheering and running behind me holding tight to the lip of the seat. Having gotten used to the stable comfort of riding my tricycle around our quiet suburban cul-de-sac, I remember feeling both terrified and thrilled at the expanse of the field and my ‘big girl’ two-wheeler. Learning to ride my bike – like most things in life – was a skill that required a lot of technical and emotional support from others, and a belief that I could do it.

 

A few months before I graduated high school at 17, I went to the hospital with my Mom for the so-called “transition appointment.” We had been sheltered and insulated in the pediatric world, full of pastel-colored murals, teddy bears, and bandages that were cut into heart shapes. The adult medical world was cryptic and distant – a new building, new doctors, new nurses, new everything. While everyone was perfectly polite, the transition appointment consisted of being told which adult doctor I was going to see and when/where I had to show up; there were no choices, no decisions, no questions. And there was no road-map for how to get from point A (pediatric care) to point B (adult care).

 

There are two important concepts that often get conflated: transition is the careful, premeditated, and inclusive process of educating and empowering an individual to be responsible for one’s health, while transfer is the physical change of moving to a new medical facility (e.g., pediatric to adult hospital). Transition is the meaningful process of gaining and growing skills like medical literacy, advocacy, adherence strategies, and so on. It requires a team of people (patient, parent, pediatric and adult doctors, nurses, etc.) working together to empower the patient. It’s the difference between learning to ride that little purple bike in a big field with lots of support versus just being given the bike with no guidance about how to use it.

 

According to Dr. Michele Maddux, a clinical psychologist at Children’s Mercy Hospital, who helped develop their transition program, Mercy’s efforts had previously involved transferring medical records and, “finding an adult provider, with significantly less focus on equipping adolescent patients with the tools and skills needed to successfully manage their health care needs.” Seeing this gap, Dr. Maddux and a dedicated transition task-force set out to create a holistic transition program that managed the clinical issues while taking lifestyle matters and family perspectives into account. They started by interviewing each of the pediatric gastroenterologists (GIs) on service to ensure physician engagement in the project and to capture their unique perspectives. They also created a GI roundtable and invited pediatric and adult GIs to have transparent conversations about transition. This resulted in a provider database and helped to dispel some of the myths that pediatric and adult GIs had about each other. The success of the roundtable and the transition task-force’s efforts culminated in the hiring of a transition coordinator and the development of a transition readiness screener for patients as well as educational materials for patients and families undergoing transition. The educational materials were vetted by Mercy’s general parent and teen advisory boards (i.e., not IBD specific) and by parents of children living with IBD.

 

Cue Jamie Hicks – a perfect fit into the role given her nursing background and a busy mom of three, including 10-year-old Colson who lives with Crohn’s. Prior to reviewing the transition materials, Jamie said, “[i]t simply wasn’t on my radar… I think of him growing up and how the disease will impact his future. But I never linked that to him taking over my ‘job’ as the manager of his health care.” Jamie praised the educational materials as “fantastic”, underscoring the importance of a defined direction and plan over guessing and uncertainty. Jamie’s main contributions were adjusting the material’s language, which she believes can have a large impact on how the information is received and understood by kids and families. According to Dr. Maddux, “Jamie brought a much needed patient/family voice to our materials that gave us a unique opportunity to craft our educational materials to meet the needs of families.”

 

Both Dr. Maddux and Jamie reiterate the vital importance of creating space for parents in research projects. Dr. Maddux pointed to the language and format changes as key edits that would have gone unaddressed without parent and patient engagement. Jamie addressed the critical role parents play as the people who most intimately understand their children beyond the clinic by helping to appropriately tailor educational materials and provide ‘behind the scenes’ information about children's motivations and worries. Similarly, they are both passionate about transition being relationship-based and starting as early as possible so the changes in medical responsibility are empowering and fitting for each child and familial situation.

 

We may not have a cure for IBD, but thanks to the insight and persistence of Dr. Maddux’s team and parents like Jamie, it is possible to implement a comprehensive, team-based transition program that prepares young patients with IBD to manage their own care. We can give our patients the encouragement, support, and information they need to ‘ride their bikes’ with strength and confidence.

 

After dozens of tries back in that field on my purple bicycle, I finally pushed off the ground, my feet finding the pedals and my eyes trained on the horizon, newly sturdy and sure of myself, and off I went pedaling across the field as my parents clapped and whistled. It hadn’t been easy, but I did it.

 

And together, we can make sure all of our kids can do it too.

 


This is not how it ends.

Thumbs up and thumbs down indicating conflicting opinions Image courtesy of Teerapun / FreeDigitalPhotos.net

My daughter asked me to write an honest retrospective on how she wasn't always like how she is now. The changes happened on her terms, in her time, on her own. And, as well as I know her, even I didn't see it coming. I view that as the “even better” part.

 

My daughter was diagnosed with IBD in early 2008. The following is just a snapshot of life then; a story about a high-schooler and her parent experiencing normal life, though ours was further complicated by a chronic illness. Our story might not make anyone's journey any easier, but I hope it will help everyone have a deep-breath moment and think (to quote a favorite song) - this is not how it ends. I hope other parents can relate to these experiences and know they're not alone.

 

Fall 2008: Six months post-diagnosis, I found out we knew someone else with IBD, right in her age group and right at our school. I couldn't wait to tell her when I picked her up at school, but she took the good news with silence. And then she said she knew! She knew? Apparently, he was in one of her classes and mentioned his IBD out loud in class, but she didn't want to "bother him." I eventually (well, maybe very eventually) let the subject drop as I often would during those years. I didn't want to upset her further. Several years later, after high school, the two former classmates connected and shared their experiences. I was very happy, but thought of the knowledge and support we could have gained earlier if not for my child's silence.

 

Note: Whenever I expressed that sentiment (of not upsetting her) out loud to her, it would backfire and she would get extremely upset, saying I was treating her differently now that she had a disease. I couldn't totally deny it, as I knew stress could exacerbate her disease, so I did watch myself. Thus, guilty as charged!

 

Late Winter 2009: She called me from a school bathroom, doubled over in pain. She sounded exhausted and scared, and sheepishly admitted she had been symptomatic for several weeks. She never told me - actually, she outright covered it up, as I asked her often about how she felt with very pointed and specific questions. Now, she sounded desperate. She wanted the blood to stop, as she had a math test the next period and had an A for winter trimester at that point. I gave her a few (extremely reasonable) options, but she rejected them all. She insisted she would get to the test somehow and not say anything to anyone. She hung up on me and was even more upset when I saw her later. Medically, she felt horrible. Academically, she had blown her A. Emotionally, she didn't want to deal with anything, including me questioning the cover-up, its wisdom (or lack thereof), etc.

 

Spring 2011: While completing her senior year internship, a requirement for high school graduation, a new flare. Her internship hours were set, but we needed to schedule a colonoscopy. She did not want to request an accommodation and miss any internship hours. I wasn't allowed to talk to the school either. Thus, the colonoscopy had to be the week after the internship ended - just a few days before graduation. Given her pediatric gastroenterologist's schedule, she did need to agree to have it the day of her internship report. She begrudgingly agreed to do her talk one day early, though two days early (when no other presentations were scheduled) would have been better. When I asked why, it was clear she chose the easy way to avoid discussing details with the school. This meant she had to present and come immediately out to me in the parking lot to start drinking the prep (a few hours late). The colonoscopy occurred as planned, but two nights later, she told me she couldn't even sit still for five minutes without pain – and had been in pain since the procedure! The graduation ceremony was the next morning. After talking to the pediatric gastroenterologist on call, he assured us it was just a difficult colonoscopy with lots of maneuvering; the pain was all muscular-skeletal. Graduation went smoothly, but her choices made that month so much more difficult.

 

Early Summer 2011: The colonoscopy showed nearly the best results we could have hoped for and her medication plan was fine, with one addition, enemas. I was so relieved. She was so upset. Back in the spring, her college had been wonderful when learning of her IBD and even offered a private room right in the freshman dorm. She had refused; she would not alter her freshman experience based on her disease - even now, with the enemas changing her routine up. I suggested she be open with her roommate, but she presented the same freshman experience argument. With downing thirteen pills a day and storing large boxes of enemas in a tiny dorm room, she was going to need to explain something to her roommate, but she just rolled her eyes at the thought. Thus, her nightly bedtime routine at home became a "dress rehearsal" of a strange technique - doing an enema in the bathroom and holding her butt together while shuffling back into bed (note: not an exact enactment of what was to come, as she couldn't practice ladder climbing - yes, she was going to elevate her dorm bed and yes, bed height was also part of the freshman experience that could not be altered. I had given up debating this freshman experience thing by this point!). Ultimately, I am not sure if she ever mentioned her IBD to her freshman roommate. My mom-sense did lead me to casually mention it to her roommate's mom, though.

 

Winter 2012: On the phone from college, she told me she wanted to volunteer as a counselor at Camp Oasis. I was shocked. I was not against the idea; quite the contrary, just stunned. I had begged her to attend as a camper for three years. Not once could I finish the sentence before she shut me down. I could go on about similar refusals regarding IBD learning conferences, IBD peer support events, etc. Although she did happily participate in CCFA walks and other fundraisers, I was still amazed at her insistence on volunteering at Oasis! She applied and was accepted as a counselor. She has been loving it every summer since and admits she wished she had experienced it as a camper. (I can't help but think those four words kids hate to hear from their parents - I. Told. You. So.)


Zip Line MisadventureMy daughter asked me to write this for all the parents and their kids facing the same types of challenges we did. It's not easy - but where you are now won't be where you end up - just like Sami and me.

With much Love to and Admiration for ICN, C3N, and Jennie and Sami, Always,

Sami’s Mom


Words Into Action

It was a Monday and I had a migraine.

The hospital room was grey and muted.  I was on my side with my eyes closed, trying to wish away the headache. A suave, slicked-hair doctor – the new GI for the week – strode into the room, the curtains whooshing slightly with his arrival, followed by his resident, and my mother stood up from her chair. They all stood at the foot on my bed, a semi-circle, as I pulled my legs closer to me and rolled onto my back.

Within minutes, I went from sleepy and calm to sobbing and furious. I could hear myself talk, I could hear the escalation of my voice and the rising tremor as I began to cry, but no one was listening. Everything I said was countered – I said, “I want to go home,” and the doctor would say, “Yes, but…” and I would say again, demanding this time, “I want to go home,” and the doctor would repeat, “Yes, but…” Finally I broke eye contact with him, my voice boiling higher and higher, and instructed him just to tell me what he wanted since I clearly was not making my point. “Do whatever you want,” I said, “You just make a decision for me and stop pretending like I have a say, because clearly I don’t. Just tell me what you want me to do.”

I am someone who believes in the patient voice, in working with doctors, in pushing for what you think is right, in being persistent. What had happened to that girl and who was this person, someone who just threw her hands up and willingly handed over her decision-making rights to a doctor she’d never met?

It is very easy to talk about change and use wonderful terms like “patient-centered care” and “shared decision-making.” It is easy, and often it is done with the best of intentions. It is much more difficult, however, to put these things into practice alongside busy lives and complicated patients. How do you achieve patient-centered care and shared decision-making with a patient such as myself, one with refractory disease who has ‘failed’ every traditional medication, has already undergone aggressive surgery, and who sits in front of you on her hospital bed, legs folded, eyes blurry with tears, asking you for the rest of her life, and all you can offer is another fluid bolus. What happens then?

In some ways, it was easier as a pediatric patient when I was not responsible for my care in full. And even though now I have legal rights as an adult patient, to decide what I think is best, in upsetting and frustrating situations I do notice myself defaulting to needing my parents. I find often my doctors are talking directly to my parents and forgetting that I am there. And, like that Monday, sometimes I feel like I have no power or ability to direct my care.

For me, there is an incredible and palpable dissonance between sentiments expressed about chronic illness care at ImproveCareNow Learning Sessions and in my own adult medical experiences. The system at play in many adult hospitals is, in various ways, broken and offbeat with patients – nevertheless, it functions ‘well enough’ that it’s left untouched, unchanged, unaffected by the gleaming and exciting collaborative thinkers just an arm’s length away. As someone who has been steeped in medical decision-making literature for the past several years, it feels appalling and shameful to admit that I hand over my care with such frustration and carelessness as I did that Monday. And yet, I’d also like to think that it exemplifies the sheer monstrosity of the challenges and barriers for patients who aspire to be involved in their care. Is that truly such a futuristic ideal? Is there really not room for me in my own care? As a young person with a chronic illness, I have found these types of encounters to be ineffably defeating and disenfranchising – to have to defend yourself, your beliefs, your values, and your preferences to every person in a white coat is offensive. It is as if the doctors claim ownership of your body, as if they can scrape your soul clean, fix your body, and then hand it back to you, as if a disease is your life versus a disease happening in the context of your life.

So what then am I saying about the young child in clinic, who will sit on your exam table, crinkling the thin paper as they climb up? What does all of this have to do with them? Firstly, it is your job – moreover, your responsibility – as clinicians and parents to empower that child in her medical care, to cheer her on, to apply an unwavering commitment and determination in helping her achieve her goals and ambitions. Even though a child does not have the legal ability to choose, there can always be small decisions for them to make (e.g., “Do you want the needle in your left arm or right arm?” or “Which bandage do you want?”). Secondly – and I wish I could say this to every person face-to-face who is reading to convey the seriousness and weight in this – young patients will grow up and will one day be adult patients. Two of the best strengths you can foster in these children are a conviction for medical advocacy and an unbreakable spirit to defend what they believe in. It may sound insignificant or small, but by always instilling a belief of ownership, we are opening the door to true participation in health care.

Because if we don’t tell them, who will?

Jennie

 


Why?

Why?

I ask myself this question as I cry at night.

Why is my child sick?  Why has he been diagnosed with this disease?  Why so young?

Why?   

I ask his doctor this question at his appointment.

Why does it not get better with treatment?  Why so many medicines? Why surgery?

Why?

I ask this question to God as I pray.

Why does this child suffer like this?  Why does he have this cross to carry? Why him?

Why?

No one will ever forget the day that their child was diagnosed with Crohn’s disease or Ulcerative colitis.  From that point on, everything becomes “before and after.”  When you have a sick child, all else seems to stop.  Your world, your life, your very being centers around helping him or her; all else falls to the side.  At least it did in our home when Jimmy was diagnosed.

My name is Liz.  My husband, Jason, and I have three sons.  Our youngest son, Jimmy, was diagnosed with UC in October of his kindergarten year.  We had a very rough year and a half trying to get him into remission.  Currently, he is a happy, healthy eight year old with the help of Humira.

Now our goal is to build up what was lost during those years of active disease.  We are checking off delayed milestones – riding a two wheeler, trying sports, as well as physical milestones like delayed growth and loss of those precious front teeth.  These diseases affect the whole person and the whole family in ways it is hard for those who have not lived it to comprehend.  It is our role as parents to help shift the focus off of why and onto how - how do we build up our children?

In October 2013 I attended my third ImproveCareNow Learning Session as the parent representative for Riley Hospital for Children.  It is the development of these “how’s” that inspired me to get involved with ImproveCareNow and with my care team at Riley.  Not only do we want to understand how these children get this disease and how to treat it, but I love that ImproveCareNow focuses on other how’s - like how to achieve a higher remission rate, how to increase adherence and how to transfer children successfully into adult care.

At the Fall 2013 Learning Session there were twenty parents in attendance.  As pre-work for the session, the parents were asked to answer two questions:

What is your vision of improved care?

What does pre-visit planning with your child mean for you?

Parents at the Fall 2013 ImproveCareNow Learning Session completed pre-workThe objective of asking parents to answer both these questions, and our attendance at the Learning Session, was to give perspective on the whole picture of these diseases.

[Editor’s Note: Liz D is the mom of a three boys.  Her youngest son was diagnosed with Ulcerative Colitis at age 5.  She volunteers her time as a parent representative on the Riley Hospital for Children Parent Mentor Group, where she is an advocate for all families with IBD receiving care at Riley.  A mechanical engineer by trade, Liz has “retired” and loves her role as a full time wife and mother.  This has also allowed her to pursue her love of all that is artistic and creative.  Over the past 12 years, she has taught both photography and memory preservation classes to both adults and kids.]


Tyler Moon for Empowered by Kids

Empowered by Kids Featured Patient Tyler MoonHave you ever felt like the Internet holds a vast amount of both the scariest and most wonderful information all at the same time?   Do you feel like when you’re searching for “good” news, hope or inspiration the only things you find are stories of darkness or bad news?  Well, there is a brand new place to share inspiration, hope and great stories from people just like you and me - who live with IBD.  This website also has a collection of trusted resources to visit for the most up-to-date information on Crohn’s disease and ulcerative colitis.

It’s called Empowered by Kids! Here is the link: http://empoweredbykids.com so you can check it out if you haven’t already. On it you’ll find stories and videos by kids and parents from around the country and the UK sharing their amazing IBD journeys (my story was just featured on December 8th). These  bring to light the many wonderful things these families have done to make a difference in the lives of others with IBD.  Empowered by Kids has given these patients and family members a place to share their voices, and to share the many ways we all can help make things better and easier for others with IBD.

Think of the number of people that could be impacted by each story! Wow, doesn’t that make you want to send your story in?  Wait, there's more!  Some of the stories on this site were collected and printed in a book especially for newly diagnosed IBD patients and families – to remind them that they are not alone. The Book of Hope is now being given out at ImproveCareNow centers. It’s all part of the amazing work happening within the ImproveCareNow Network. Together, we are making a difference for all patients and families impacted by IBD.

If you know someone who would like to share their story on Empowered by Kids, here’s the link to the online contact form http://empoweredbykids.com/our-mission/contacts. They can also send an email to info@empoweredbykids.com and share their story that way too.

[Editor's note: Tyler Moon is currently a C3N Project Patient Scholar and member of the ImproveCareNow Patient Advisory Council. He asked us to share this post on his behalf.]


Who is an advocate?

In honor of IBD Awareness Week, which wrapped up on Saturday, I thought I'd come back from my blogging hiatus and talk about what it means to be an advocate.

Over Thanksgiving break, I had a revealing conversation with my mom about my life in high school with ulcerative colitis. Her memories of how I coped with UC are not always how I remember myself coping. There were things that I heard from her perspective for the first time, and some of them were hard for me to revisit. I was reminded that I was once a vulnerable high-schooler - and while this is/was true for all of us, it was nevertheless hard for me to be faced with things from my past that I had unknowingly blocked for years.  I remember how much I once idolized many of the 'popular' IBD bloggers. I didn't really begin regularly reading IBD blogs until my senior year of high school, but once I did, they had a strong influence on me. One blogger ran a few opportunities for her readers to submit to group projects, and I emailed her a submission once. I remember just glowing when she responded. Of course, I realize now that she's just a normal young woman like me with IBD, but she was a celebrity to me then. It was around this time that I first started to imagine that just maybe I would one day be like her. That I could be an advocate, too.


Why is being part of my center's QI team important to me?

For many reasons. But one that comes to mind right away is that we didn't get to opt-in to this disease. We are in - all in. Over the course of this journey, we have had to learn to navigate many paths. We've experienced phone call processes, waiting rooms, treatments, and planning around a disease that at times consumes our thoughts and actions. We didn't navigate these paths for a higher purpose or with greatness in mind. We did it because we had to. And on some many occasions, the work of navigating was hard. We found ourselves exhausted by the tasks and fearful of the next step.

 

And then suddenly, there was this opportunity. One that I could choose. One that was organized around the idea of improvement.  A place to use my insight and experiences - what had become my expertise as a parent of a chronically ill child - to add value and depth.  Because, you see, I NEEDED to have a place to use this knowledge I now have. I desperately wanted my work of navigating and fighting to matter, not just for my son...but on a larger scale.

 

The first time someone on my team asked my opinion or my thoughts...the first time I came to a Learning Session and someone asked me to weigh in on a conversation, our journey became easier...because it was needed.


Three Stages of an Awesomely Gutsy Learning Session

Patient Advisory Council Members at the Fall 2012 Learning SessionAs Sami and I get super-duper-gutsy-psyched for the ImproveCareNow Fall Learning Session, we thought we’d put together quick snapshots of what an #ICNLS is like from our perspective. And voila, here they are, broken down into ‘Before,’ ‘During,’ and ‘After!

Before:


Sami: The excitement of planning and watching others plan. The Learning Session is a labor of love and - true to ICN's motto of "share seamlessly, steal shamelessly" - so much collaboration goes on behind the scenes in the weeks leading up to the LS. Despite the occasional stress, it's a blessing to be a part of such well-coordinated collaboration. My contributions to the LS are never just 'mine' - they've been shaped by a countless number of collaborators.

Jennie: Out of the mountains of emails and over-excited texts between Sami and I, everything was becoming real as plane tickets were booked and bags were packed. It’s kind of like coordinating a flash mob: dozens and dozens of people, all with the same passion for patient-centered care, group together from all corners of the country, lots of people doing one big dance. A lot of excitement, a smidge of nerves, and so very much gutsiness.

During:


Sami: Connecting with individuals representing all centers and roles within ICN. The PAC reps love meeting you - we want to know how we can best partner with you to meet your needs! I learn as much from casual hallway conversations and introductions at the LS as from the formal plenary and breakout sessions. One year ago, I didn't know my present PAC co-chair until I got off the plane in Chicago - so much can change in one year.
Tweeting, blogging, and sharing what I learn with you!! p.s. anyone can join the LS conversation real-time on Twitter using the hashtag #ICNLS.

Jennie: I remember my very first LS. It was as if I’d known everyone there forever – everyone was incredibly sweet and lovely and thrilled to have myself, Sami, and Jill (our amazing former PAC chair) there. I’ll never forget during the opening reception I was introduced to a few people, first names only, and it wasn’t until my head stopped spinning and I put two and two together that I realized I’d just met the biggest movers and groovers in ICN and the C3N Project. What struck me then was that they were just ordinary people who could hold conversations with me and I wasn’t stuck in some small ‘patient only’ box. The LS truly is an environment filled with excitement, respect, brilliance, compassion, and the unwavering attitude that we can all learn from one another (purposely ignoring the standard hierarchy of doctors versus patients/parents, it is doctors and patients/parents).

After:


Sami: Reconnecting and making plans for collaboration with those I've met over the weekend. The LS is "the charger" of ICN - it propels us through the next six months.
Working through the pages and pages of notes I'll leave the LS with - despite the work involved, the LS is magical because it allows you to come with scraps of ideas and gain the inspiration you need to transform those ideas into reality. Sleeping a little - and dreaming about the next Learning Session!

Jennie: There’s always too much excitement, too many possibilities, and so many new connections leaving the LS to get any sleep on the plane home! And that’s what’s so incredible and indescribable about the LS: we pass around and borrow ideas and fire from one another and there’s always so much to start doing! And importantly for patients and parents, we don’t become forgotten in the months between (we’re not simply a perfunctory part of the LS and then we’re dropped), if anything I’ve seen the commitment to meaningful patient engagement grow each time!



We can’t wait to update you after the LS!  But why wait? Learning Sessions have their own hashtag on Twitter so you can keep up with what's happening. Be sure to follow #ICNLS  – and we’ll be sure to tweet as often as we can!

J + S


27D

As the countdown to the ICN Strategic Planning Meeting dwindled, I began to pack my bag for my 30-hour trip to Washington DC. While I was truly excited to see my ICN family and my better half (cough cough, Sami), the summer heat pricked at my cheeks and I could already tell that I was worn out from working and my flare before my trip even began. But anyone who knows me will tell you that I’m incredibly (and sometimes stupidly) stubborn, and so I set my sights on Washington and boarded the plane.

 

Reuniting with Sami was wonderful! It did involve giving her the wrong directions to where I was standing at first – but we finally found one another in the airport and eventually made our way to the hotel. As an early birthday present, Sami had packed a ‘Twizzlers Party’ (note: my current flare leaves my diet restricted to only a few things, most notably Twizzlers and an assortment of candy). We dutifully ate the candy and caught up on life and all things gutsy - as good gutsy girls do.

 

Jennie with her bag of Twizzlers at the ImproveCareNow Strategic Planning Meeting Thursday morning found us up early, as the alarm went off playing a Taylor Swift melody (of course). We got ready and headed down to the beginning of the meeting, where a one pound bag of Twizzlers was waiting for us for a flare-friendly lunch (you know you’re loved when!). As always, Sami and I continued to be overcome with delight and excitement at how sincerely patients are considered and integrated into the strategic planning for the network. ICN truly wants to improve care this very moment for children and their families, but they know they need everyone’s input to do it. I think it’s fair to say that we’re all pretty thrilled with the exciting things that will continue to develop in the years to come.

 

But this post isn’t really about Washington DC or the ICN Strategic Planning meeting. It’s about being nearly 22, fresh out of college and into a ‘real person’ job, and very sick. It’s about my body not working the way I want it too and being simultaneously frustrated and determined. By the time I was ready to head back home, a mere 24ish hours after arriving, my body was throbbing with pain and the dryness of my mouth and quickened pace of my heartbeat informed me that I was quite dehydrated. The thought of the two plane rides home – getting into the airport at midnight and then having to get up early the next day for a doctor’s appointment and work – made me make my ‘this is ridiculous’ face. I just wanted to be home. Well, moreover, I just wanted to feel better.

 

On the flight from Toronto to Halifax, I found my aisle seat, 27D, where the window passenger was sitting with her multitude of bags. “Do you think there’s someone sitting in between us?” She asked, fumbling with her purse. I shrugged and offered a diplomatic response of uncertainty, suggesting she use an overhead bin to store some of her things. The pilot came over the PA to announce that the flight was totally full, every seat was taken, and to use space as wisely as possible. So much for some elbow room, I thought.

 

I sat and waited for the middle seat person to claim his or her seat. By this time the plane was largely full, and I was ready for every passing person to point to the seat and slither past me. And then she walked up to the row – she being Ellie Black, a Canadian Olympic gymnast who’s from Halifax. I sat up in my seat, suddenly my heart pounding not because of dehydration but because of my girl crush on this incredible athlete. She pointed to the seat and I jumped out of mine to let her in.

 

“I’m sorry,” I said. “But you are Ellie Black?” She nodded with a big smile. Of all of the Olympic athletes, I would recognize so few, but the fact that one sat next to me made me momentarily forget about my poorly working body and focus on her. She was kind and lovely and very sweet, happily chatting with me despite her 27+ hour plane journey home from Russia (where she’d been in a competition and taken home two medals). I sat there amazed, 1) that she was talking to me and 2) how incredibly resilient the body can be. It might not seem like it, given that I have no medals or Olympic memories of my own to share, but our bodies had something in common – they are super duper resilient. Hers might be able to do flips and turns while mine struggles with functioning, but ultimately both of our bodies can be pushed to do things most people don’t think is possible.Ellie Black the Olympic gymnast signed an autograph for Jennie David on her flight home to Halifax

 

When the plane finally touched down in Halifax, it was midnight and Ellie and I both blinked awake, having falling asleep mid-flight. I pulled out my agenda book and sheepishly asked her to autograph it, which she agreed to without hesitation, addressing it personally to me. In her script writing, she scrawled, ‘Dream Big’, and handed it back to me, smiling. I thanked her profusely and safely tucked the autograph back in my bag.

 

Maybe the airplane-gods thought I needed a little pick-me-up, or maybe it was just plain ol’ luck, but whatever it was, it reminded me that even if my body doesn’t work perfectly, I am still a champion, a fighter, and a resilient person. And now compliments of the heart-warming and inspirational words residing in the back of my planner, I can carry that message with me wherever I go.

 

Jennie


Take Steps and Super Heroes

Alex8799 and his take steps team pictureThis past week I took part in the Cincinnati Take Steps walk for the third year in a row. Each year we design a new shirt as a way to come together as a team. This year’s team shirts were superhero-themed; the team name merged with the superman symbol. Seeing the sea of purple at the walk and all those superhero shirts got me thinking about my heroes and how they have helped me cope with my disease.

 

What makes someone a hero in my eyes?  They need to inspire me.  They should make me think beyond what’s normal and make me challenge the status quo.  Heroes change the perspective. They do not let limitations stand between them and what they want to do.  One of my heroes is Alicia Lang; she lived most of her life with Cystic Fibrosis. She was in the hospital for weeks at a time and half of her lifetime. Yet she always had a smile on her face and did not let her disease stop her from helping others. I met her at the Cincinnati Children’s Hospital Patient Advisory Council. She would roll into our meetings every month and you could not help but feel her presence in the room. Now the PAC meetings feel emptier without her smile. She lost her battle with Cystic Fibrosis, but her influence lives on.  She taught me that the tough times are the best times; it is a time for kindness, a time to step it up a notch, a time to smile, and a time to be a hero.

 

Heroes also inspire.  Jennie David and Sami Kennedy are two other inspirational heroes.  They inspire others by spreading their story.  They help others through their own fight by sharing their experiences; sometimes this is with humor (sharing opinions on what toilet paper is the best), other times sharing their experiences while going to college.  They have set high expectations for themselves and have made a lifelong goal of helping others with IBD. They have taught me that I can talk about poop as much as I want to, and that no matter how high the goal I can achieve.  They have taught me that, despite my Crohn’s disease, going to medical school is not out of the question; and that I am not going to accept anything less than a life as a pediatric gastroenterologist.

 

So why this blog about my heroes? Heroes are everywhere. They can be your Mom or your Dad, they could be someone that helps you at school or someone that you meet through circumstances that bring you together to fight a common cause.  In this virtual world, they could be a person you’ve not met face to face, but you admire from afar. Heroes are people you can look up to and can help you get through any situation. For me, when times are tough, I just think about all the people I know, my heroes, and those who may have it worse than me. I think about their situations, the experiences that they have shared, and I am thankful and mindful that my situation could be a whole lot worse. Every night I go to bed listening to Zach Sobiech’s song, Clouds, and I think to myself how I can live the next day to the fullest. How can I be a hero?

 

Everyone needs a hero so go out and find one. The hero you have always been looking for could be right in front of you.


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