10 Tips to Travel like a Boss with Chronic Illness

10 Tips to Travel like a Boss with Chronic Illness

There is a not a moment of my life that isn’t filled with memories of travel. My very first flight was at 2 months old, and I haven’t stopped since. This world is full of so many fun places to see, cultures to explore, and things to do, and I don’t want to miss any of it. But the reality is, traveling hasn’t always been easy. In my early twenties, I received two autoimmune diagnoses amongst a plethora of other diagnoses related to the damage caused by my autoimmune issues, and it completely flipped my whole world upside down. Nothing was the same. My lifestyle changed immediately, the food I was eating; everything suddenly centered around the fact that I now had these illnesses and needed to learn to live with them while taking the best care of my body that I possibly could.

It was only a week after this overwhelming doctor’s appointment, that I was on a plane flying across the country to spend Thanksgiving with my family. I remember going to the grocery store with my dad and literally sitting down in one of the aisles in tears because I didn’t even know what I could eat. It all felt like so much to take on. Thankfully since that moment, not only have I learned how to take care of my body, but I’ve also learned how to travel with chronic illness like a boss!

Here are my top 10 tips for traveling with chronic illness:

1. Pre-search

Planning ahead and doing your research before leaving on your trip can be a life-saver! Look ahead at your destination so you’ll know where the grocery stores and restaurants are with the best food options that work for you. Tools like Yelp and Google Reviews have completely changed the “pre-search” game, and even allow you to search for places that accommodate your specific dietary needs. And nothing replaces a good old fashioned phone call to a restaurant to ask all your toughest dietary and allergen inquiries. I’m on a very specific food protocol, so it can be really stressful when I’m not in my own kitchen and in full control of what’s being made. Researching ahead of time takes the stress out of dining. Yes, it takes some time before you leave to prepare, but it’s so worth it!

If possible, pack your own food to bring as much as you can, and even have non- perishables shipped to your destination ahead of time so that you can eat them or cook with them in your travels. Did you know that you can ship things to hotels? Figure out what you can do ahead of time to minimize stress when it comes to food! Traveling with chronic illness all comes back to being prepared!

2. Hone in on Local Hotspots and Hospitals

In case of an emergency, being caught off guard will only make things worse, so know where the nearest urgent care, emergency room, or hospital is as a precaution. Or even if it's as simple as needing a medication refill while you’re away, know where you can get access to the things you need ahead of time so you aren’t caught in a bind. If nothing else your research ahead of time will buy you peace of mind while traveling!

3. Say Goodbye to Stress

Reducing stress as much as possible is a major tip to a successful trip! One of the worst things we can do for our bodies is get worked up and find ourselves overly stressed. And this includes the planning phase of your vacation too. Leave yourself margin while you plan to keep the whole process manageable and fun.

Make sure you know what your triggers are, and get creative about stress reduction! If doing yoga everyday is something that helps your body destress, then find a local studio where you’re going. It’ll be a fun experience in a new place! If journaling helps reduce your stress, find a picturesque park where you can sit and experience some quiet. Whatever it is that works for you, you just might find that in the process of reducing stress, you get to explore the places you’re going in ways that others usually don’t.

And repeat after me, “it’s okay to cancel plans.” Cancelling plans is hard anytime, but especially on a trip. If you have to cancel something because of stress levels, or anything else for that matter, that’s okay. Give yourself permission to take care of your body. It’s your first priority.

4. Create a Home Away from Home

Choosing where to stay once you reach your destination is key. Whether it’s a traditional hotel, or an unconventional spot through Airbnb, VRBO, or Home Away, you may prefer to stay where you'll have access to a kitchen along with other comforts of home. Making a good choice ahead of time gives you the freedom to prepare meals for yourself and follow your routine.

Let’s face it — sometimes a less-accomodating “temporary home” is unavoidable, which changes how you’re able to take care of yourself, especially when it comes to food. But most hotels will bring a mini fridge to your room if you let them know that you have allergies, medications, or an illness that requires it. And when in doubt, packing a cooler might be a last resort, but a workable option.

5. Stay in the Groove

Stick to routines as much as possible while traveling! If you like to start your day with meditation to help center yourself and reduce stress, don’t stop just because you’re somewhere else. Routines and consistency are so important to keeping our bodies functioning as optimally as they can. This also includes things like medications and supplements. Don’t get lazy while you’re away from home. Bring everything that you need to support your body and stay on top of your program.

And in case “vacation brain” causes you to relax to the point of forgetfulness, don’t be shy about setting alarms and reminders on your phone to drink water, take your medications or supplements, grab a quick rest break, or even get ready for bed. Do what it takes to preserve your groove!

6. Play Keep-Away with Contagions

In a world full of beautiful places to explore, the road to get there is often filled with toxins and viruses and germs (oh my!). Many of us have compromised immune systems and the thought of exposing our bodies to a world full of “ick” can be daunting. Whether it’s hand sanitizer or packing a pollution mask, don’t be ashamed to use the tools you need to keep your body well. Even bringing cleaning wipes can help — from the surfaces you’ll touch on an airplane to the TV remote at your hotel. Having what you need to fend off the “ick” might just help you let go of your worries and enjoy.

7. Plan for Downtime

When I travel, I tend to be a “go, go, go” kind of person! I don’t want to miss out on seeing anything or making a memory. But I’ve learned over the years that no downtime is a “no-go” for my body. It’s important, perhaps even more so while traveling, that you plan for downtime to give your body adequate rest. Even when we’re as prepared as we can possibly be, being somewhere new or out of our element can still increase our stress levels. I find that I am typically more tired when I’m away from home, and generally nap everyday on a trip because my body needs that extra rest. Don’t run your body ragged. It’s better to take frequent breaks than to have a “flare to remember” and end up totally out of commission during your vacation.

And this goes beyond just your travel plans! Once you get home, consider planning a recovery day to give your body a chance to recoup from your adventures. Travel can hard on our bodies, and factoring in that next day at home rather than making plans to jump back into your normal day-to-day life can really help you transition back with a little more ease.

8. Don’t Slack on Your Sleep

When it comes to counting sheep, don’t compromise! If you have a certain bedtime every night, keep that same bedtime while you’re away from home. I know it can be hard when visiting friends or family, or even when you’re simply out exploring somewhere new. You get caught up in the moment and want to take everything in! But if you compromise on your sleep, it will catch up to you eventually, whether it’s while you’re still on your trip or later when you get home. And make sure the conditions are right as well — temperature, the darkness of the room, etc. Even packing your favorite pillow can be a huge help. Running on little to no sleep is not fun for anyone, especially those of us who know the ups and downs of living with chronic illness!

9. Pack Your Favorite People

It’s all about the support system. Who you travel with makes all the difference in the world! Living day in and day out with chronic illness can be hard enough on its own, but when you’re traveling, there’s often more to plan for. If you’re traveling with others, make sure you have someone that’s supportive and understanding of your routines and health issues so they can be a support to you.

And remember, friends are fantastic, but they’re not mind-readers. It’s your job to help them understand your health needs, and keep them up-to-speed on how you’re doing throughout the trip. Do they know you have dietary restrictions? Can they help make sure you take breaks throughout the day? Your illness doesn’t need to dictate your adventures, but having your fellow travelers aware of the accommodations you’ll need along the way can really help set healthy expectations for everyone.

10. Factor in Some Fun

Get out and enjoy the local culture, especially if you’re traveling internationally. Just because we have limitations doesn’t mean we have to fully miss out on what’s around us during our travels. Whether the food is holding us back or our mobility, there are always ways to get around and interact with the local culture to enjoy the places we go. Our illnesses aren’t what define us. Have a blast! All the planning and preparedness ahead of time is so worth it to create lasting memories and have the trip of a lifetime!

I hope these tips help you prepare for your next trip! It took me awhile to figure out my rhythm when it came to traveling with chronic illness. In fact, there was a solid year after my diagnoses that I didn’t want to go anywhere at all because it just felt too overwhelming. But now nothing can stop me!

Bon voyage, fellow travelers! Your journey awaits! 


 

Written by: Kelly Halsch

Our world-traveler extraordinaire, Kelly Halsch was born and raised in New York, but now lives and represents the People Hope Tribe in Maryland. Her big dreams include things that many of us can relate to like going to a restaurant and ordering off the menu without making special requests or asking a thousand questions about allergens. Her dogs are her babies, she admits to watching too many episodes of Real Housewives, she’s terrified of ET (yes, from the fictional film), and she’s on a mission to try every local juice bar. But her heart is made alive when she writes, and is there anything more stunning than a woman who sets her mind on encouraging others? We think not. 


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My Dad: Champion of Hope

My Dad: Champion of Hope

Challenging times call for champions of character to rally beside us and wake our hope when it grows weary. Words like “determined” and “advocate” describe my dad well, and it has been his relentless hope that so often championed me through my most challenging seasons.

I had a beautiful childhood, complete with close friends, adventures with my brother, and sweet memories with my loving parents. I was a healthy child. The first obvious signs of illness didn't come until I was twelve years old. During my teenage years, my symptoms grew and accumulated. I still had the strength to attend school and participate in extracurricular activities, but medical emergencies were becoming more common. My family and I learned how to deal with each situation as it came, as well as how to press on with our lives once each emergency came to an end.

When I began to receive my diagnoses, my dad’s determination became my safety net.

When I began to receive my diagnoses, my dad’s determination became my safety net. This character trait developed over the course of his life. As a child, he dreamed of becoming a pilot, and he was willing to work hard to make that dream come true. He paid for flying lessons with the money he earned from odd jobs as a teenager. He earned a Bachelor's degree in Physics, entered the Air Force as an officer, and later earned two Masters degrees in the sciences during his 25 year military service.

His role as a Dad changed when my illness became more severe. He went from coaching me at home in the sports that I played and helping with homework to fighting for adequate healthcare and educating himself on medical terms. Instead of cheering me on from stadium bleachers and taking runs with me around the neighborhood, he cheered me on as I made progress in physical therapy.

Today, he cheers me on as I persevere to the end of my college degree and he pushes my wheelchair when I'm too weak to continue. There was even a time when he was my greatest advocate with my professors. When I was discouraged and ready to quit, he fought for me and helped to negotiate a clear path to finishing. He stayed in my college town, 7 hours from home, after a long hospital admission. He went with me to the library, took me to and from classes and tests, and helped me to wrap my mind around difficult concepts. He washed my hair when I couldn't do it myself, allowed me to lay on his shoulder and cry during hard moments, and made sure that I was given adequate nutrition and sleep. He gave me the perfect balance of gentleness, care and tough love. I was able to complete that semester with excellent grades because my dad wasn't ready to give up on me, even when I thought that I wasn't capable of finishing.

He has lifted me up during times of weakness, and spoken truth over the lies that clouded my mind. He has reached into the dark places and shed light on them. He has dared to dream for a brighter future for me, and inspired me to have more hope than I deemed "safe" to have. He whispers, "just a little further,” when I think I can no longer continue. He believes in me deeply, and reminds me of who I am when I forget my own worth or potential. He helps me to find my smile when I think that it's gone, he makes me laugh, and he holds my hand on the hardest days. He encourages me with thoughtful phone calls and voicemails when we're far apart. He helps me to live a little braver and stand a little taller.

He helped me to see that sickness does not have to be the end of my story, and that greater things are ahead.

Because of him, I pushed beyond my comfort zone and dared to have more faith, to pray bigger prayers and to believe God for more. He helped me to see that sickness does not have to be the end of my story, and that greater things are ahead. The Bible describes faith as, "confidence in what we hope for and assurance about what we do not see." My dad possesses the kind of faith that goes beyond the logic of my medical records and the doctor's prognosis. He trusts God, even in the midst of the pain that our current circumstance brings. He is a champion of hope in my daily battle, like a highly-motivating coach on the sidelines, cheering on his players and beaming with pride.

I believe that God looks at each of us in this way. I believe that He pays close attention to those who are sick, overlooked or forgotten. He knows your pain; he sees the tears that you shed. He saw you when you received sobering news in the doctor's office. He knows the courage that it takes to face each day, and He is proud of you for continuing to choose life in spite of the pain that you feel.

It breaks my dad’s heart to see me sick or hurting. If the hearts of parents break when they see their child suffer, how much more does God's heart break when he sees his children suffer? God, who describes himself as our Heavenly Father, loves each of us even more deeply than our parents are capable of loving us. God's heart breaks when He sees you suffering because He loves you. He isn't indifferently waiting, unaffected by the delay in your improvement, breakthrough or healing. When you hurt, He hurts. When your heart breaks, His does too. He hurts like a parent hurts for their child.

And God's love is unconditional. You are fully known, and you are fully loved by God. He is here during our lowest moments, our best moments and all of our in-between, ordinary moments. He doesn’t love us any more or less because of emotions that we have or mistakes that we’ve made. I often fool myself by thinking that I'm hiding a piece of my heart from God, but He sees it all and He loves me fully. Not only that, but He never leaves me. Appointments and procedures that were stress-provoking became peaceful when I learned to ask Him to come with me. Painful nights in my room all alone, became nights that I spent with Him, feeling loved. The pain didn't go away, but His presence came and it is so sweet. Psalm 34:18 says, "The Lord is near to the brokenhearted and saves those who are crushed in spirit." I personally know this to be true.

...you have a Father in Heaven who loves you. He is not disappointed in you. He is proud of you and wants to spend time with you.

I often thank God for giving me a Dad who reflects His character and love for me. It would be much harder to believe in a loving God without a loving father here in the world. I realize that I am in the minority when I talk about having a father who loves me and is present in my life. If you have a strained relationship with your dad, if your dad walked out on you or chose not to be a part of your life, or is no longer on this Earth, I'm incredibly sorry for your pain and loss. I want you to know that you have a Father in Heaven who loves you. He is not disappointed in you. He is proud of you and wants to spend time with you. He wants to hear about the details of your day, and He always has the time to listen. He wants to know you more, and He wants to show you more of who He is. He has a beautiful plan for your life. Your story is not over! There is so much hope for your future. I encourage you to grab your Father’s hand and let Him take you on the adventure of a lifetime!


Written by: Lauren Taylor

Lauren is one of our People Hope Tribe members living in Texas — the land where everything’s said to be bigger, and apparently that includes hope! She’s a boss on both our Connections and Support Teams, but she’s not too cool to admit that petting a giraffe is definitely on her bucket list. Between bites of chips and salsa and daydreams of traveling, you can find her studying to finish her Bachelor of Arts degree to become a Child Life Specialist. Yes, it’s clear to see that this special lady is already a world-changer. Now, if we can just find her a giraffe…

 

Photos of Lauren and her dad are courtesy of our friend SydneyBPhotography.

All rights reserved.


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Joy: The Unlikely Choice

Joy: The Unlikely Choice

I was staggering as I made my way to the car, disoriented and weak. Fumbling with my keys, I clicked unlock, opened the door and collapsed into the driver seat. I began to hyperventilate uncontrollably, each shaky breath becoming more and more erratic. Everything around me began to spin as I lost feeling in both my hands. 

My fingers began to curl into themselves, my face went limp and numb. In a frantic blitz of adrenaline, I jumped out of the car and spun around to see one of my friends standing there looking concerned. I slurred out in a long groaning voice, “I need to go to the hospital.”

There were several shouts across the parking lot calling for help, as people around me dug through my car for my travel bag containing my medical information. Focusing all my energy on staying lucid and conscious, I slung my bag over my shoulder with my arms seizing up to my elbows. They helped into the car and everything went numb. It was around 4:15 in the afternoon. May 9th, 2015.

That was the day I lost my independence.

Our lives are often marked by a few defining moments. Accomplishments, milestones and special days we will never forget.

Our lives are often marked by a few defining moments. Accomplishments, milestones and special days we will never forget. I like to describe my journey through chronic illness as before and after the seizure. It lasted close to an hour from the moment it started to the moment when the convulsing ceased. Even still I did not regain full motor skills and speech until I left the emergency room in the early hours of the morning almost 10 hours later. It took almost a week to regain strength enough to simply stand outside without feeling like passing out.

It may have been just one day, but even as I relive it to write this, I realize how much raw emotion I still carry from the events of that day. I remember being in the MRI room lying on the gurney. This machine surrounding me chirped and clanked as tears streamed down my neck thinking about my mom getting the phone call in the checkout aisle of Bath and Bodyworks. Running out the door and leaving a shopping cart full of things she was buying for herself. She never buys things for herself. And she wouldn’t that day either.

But the emotions I still carry today aren’t pinned up from an event that exists in a vacuum, they largely exist because of how that day impacted my life forever.

Just one day before I was working full time, living with a good friend of mine, physically active, riding over 100 miles a month on my distance long board, and making plans for marriage with my girlfriend. I was living my life the way I felt like I was supposed to. And even though the precursors of my sickness had been building for years, even after receiving my Lyme disease diagnosis two months prior, nothing was holding me back from the endless possibilities that life had before me…so I thought.

Just one day after the seizure I was living with my parents, making phone calls, and cancelling plans. I wasn’t allowed to drive or even be at home without supervision. I was losing hope. I was losing my mind. I was losing my life.

I did a lot of thinking that week after my seizure. As I handed over my hopes and plans one at a time to my new reality, I had to make a choice to not hand over my joy no matter what.

As I handed over my hopes and plans one at a time to my new reality, I had to make a choice to not hand over my joy no matter what.

A lot of people ask me how I am able to maintain my positive outlook on life despite my illness. I simply tell them, “If you don’t stay positive, you lose.” Losing just isn’t on my to-do list.

Back when I was “invincible” and “care-free” before my diagnosis, I was living my life with my whole future vividly before me as I marched towards my dreams. And while I miss having that outlook, I now find that outlook undesirable. In the same way that living in the past is a dangerous choice, I believe living in the future can be just as harmful. I have learned to live within the bounds of today; one day at a time.

Being broken doesn’t mean you ‘need fixing,’ it means you are in a position to grow, and that stretches out over the emotional, spiritual and mental parts of who we are.

As a Christian, I have had seasons of life that have challenged my faith and wellbeing. I, like many, thought that one day, I would hit this magical level of faith were I would be so fortified and steadfast that nothing would be able to challenge my faith. I would be rock solid like so many of the men that I look up to — men who appear to be wise and stable on the outside. But I came to realize that on the inside, we are all hurting, we are all broken. Being broken doesn’t mean you ‘need fixing,’ it means you are in a position to grow, and that stretches out over the emotional, spiritual and mental parts of who we are. The conditions of this life, our brokenness being one of them, limit us to live one day at a time.

When I live every day for itself, I am able to take on the challenges that life and Lyme throw at me. I am able to have joy even when happiness is nowhere to be found. Joy is not an emotion, a feeling, or anything subject to our circumstance. It’s a choice. 

Still, I catch myself wondering what would have been. Every day in fact. Literally.

These days, I am at a very odd threshold. I am a functioning “Lymie.” That means that I am healthy enough to carry on with normal life, but everything I do is in some way affected and limited by my illness, at times completely hindered. Everything I do is calculated, taken into consideration, and executed within limits.

By occupation, I am a youth pastor at a church. It’s a high energy, high responsibility and, at times, high stress position. But I wouldn’t trade it for anything. I don’t view it as a job; I see it as what I’m meant to do. But the constant reminders that I’m living with chronic illness are everywhere. There are many late nights when my head finally hits the pillow and wonder, “How much longer can I do this?” 

Joy is not an emotion, a feeling, or anything subject to our circumstance. It’s a choice. 

My hope extends beyond the thought of being healthy again. What gives me hope is knowing that, in this tiny blip of time that I have on this earth, I, like everyone reading this, have the capacity to make a difference.  We are all loved by the Creator who made us, who cares for us and endured pain and suffering like me and for me. He knows what it’s like to be scarred. He knows what it’s like to be in pain. He knows what it feels like to be rejected and completely alone. Yet he is all powerful and on our side and He wants to enable us to do more than sit in our sorrows as our bodies wage warfare over our illness. Now, more than ever in history of mankind, we are able to make a difference in the world even if our bodies keep us confined to our beds, phones, laptops and IV infusion rooms. We can choose joy, choose to reach out to others in our chronic illness communities and share that joy!

And while Lyme could someday take my life, I can choose joy because the suffering in my body cannot possibly compare to an eternity surrounded by love, without any pain, tears, fear, or sickness. I can choose joy because, even through my suffering, I can make a difference in someone’s life. I can choose joy because this life is worth living even when we are pushed to the brink of death.

Whether you’re in sickness or in good health, whether you’re rich or poor, whether your life is better or worse than it once was…choose to live today. 

Choose joy.


 

 

Written by: Matt Johnson

Matt is one of our People Hope Tribe members living that sunny California dream. Despite his ongoing battle with Lyme Disease, Matt has made waves and touched countless lives through his work as a youth pastor and as an advocate for other Lyme patients. His happy place is on a longboard, eating sushi, playing guitar or drums, but probably not all at once. 


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Mary

Preface: Few people are more invested or effected by our sicknesses than our mothers. The best of them journey with us, advocate for us, and comfort us. Our mothers have their own stories to tell, and I was immensely grateful when my mom agreed to share hers. Although we lived the same events, we view them through entirely different lenses, and neither of us walked away from this battle unscathed. We both now carry different but permanent scars of sorts, mine obvious and physical, but hers perhaps deeper still as only a mother can understand. I couldn’t be more humbled to share her voice and honor her story in the hopes that it will resonate, validate, and ultimately bring hope and comfort to so many other moms just like her, in the same way that she’s always brought hope and comfort to me.

— Anna Kowlessar, Founder of People Hope

From the moment a child is born, they are inexplicably knit to their mother’s heart. This doesn’t change, no matter how grown they become. Their joys are her joys. Their triumphs are her rejoicing. Their struggles are her reason to be on her knees. And their pain is her anguish.  Because when a child hurts, a mother bleeds. I was about to experience this on a whole new level.

...when a child hurts, a mother bleeds.

I had all but finished raising our youngest daughter, Anna. She was attending college a thousand miles from home, enjoying her new-found independence while I was constructing my now empty-nest reality. My husband Bill and I were proud of the woman our girl had become and were anxious to see the course her life would take. 

It was a mid-June afternoon. Bill and I were canoeing on Lake Superior when my cell phone rang. It was Anna. I quickly put my paddle down to answer the call and was immediately immersed in an all-too-familiar conversation about the strange and growing number of health problems she was experiencing. The onslaught of mysterious symptoms had started suddenly just a few months before. I thought she had developed food allergies. But, despite the dramatic changes to her diet, things were not improving. In fact, they were getting much worse. She and I talked and cried together for over an hour, as Bill prayed on the other end of the canoe. I had grown perplexed and frustrated by her persistent symptoms and felt completely helpless trying to problem-solve from such a distance. I needed to be with my girl and give her hands-on care. She agreed to the recommendation to return home, at least temporarily.  Four days later she was in my arms. Sick and exhausted, but at least she was home. I was certain now I could get her the help she needed.

I watched her eyes swell with tears as my sense of hope began to fill her tired places.

I remember sitting in a Barnes & Noble coffee shop with her, now with several doctor appointments already scheduled. I grabbed her hands, looked her squarely in the face and said with fierce conviction that we would get to the bottom of this thing. I watched her eyes swell with tears as my sense of hope began to fill her tired places. I was seeing a now 21-year-old woman on the threshold of her adult life. I was sure a few calculated medical tests would provide a diagnosis and treatment plan to get her well again quickly. There had to be a simple solution. I was wrong.  

Our first few visits to specialists proved to be our baptism into the sterile corridors and stuffy waiting rooms of the medical environment Anna and I would soon know like the back of our hands. The tests began to come back “normal,” one after another. So we looked deeper. Another hospital gown. Another paper-lined table and cold stethoscope. Another account of the baffling symptoms. Still no explanations. I felt a growing warrior mentality rising within me and solidifying my determination to to find a diagnosis.

I felt a growing warrior mentality rising within me and solidifying my determination to to find a diagnosis.

I watched my daughter become an unwitting professional patient of sorts, stoically sitting in one exam room after another. Never complaining, grateful for the opportunity to search for answers. But test results would teach her not to pin her hopes on a solid diagnosis. Often, she and I left appointments in complete silence, knowing that words would only give the disappointment more fire. Together we choked back despair and I tried to swallow her pain.  With every doctor visit I watched the hope drain from her spirit. It shattered my heart and galvanized my resolve to make her well. 

I tried everything I could think of. Doctors, specialists, chiropractors, physical therapists, wholistic and functional medicine. Blood tests, allergy tests, muscle tests, hormone tests.  Scans, ultra sounds, CT’s, MRI’s…you name it. I threw everything I had into this battle, desperate to give my girl a healthy future - wishing I could take on her illness myself.

The first time I rushed my daughter to the ER I saw her in excruciating pain I had never witnessed before. Her body writhed in agony while her face bore the weight of utter distress. I rubbed her back, her arms, her legs and offered words of calm reassurance. It was all I had to give. I instinctively assumed the role of her advocate and firmly pleaded with the medics to relieve her pain. Inwardly I screamed in desperation of my own. It wasn’t until we finally returned home that I removed my armor and let the experience flood my senses. It was powerful and overwhelming. I suddenly realized I was emotionally hemorrhaging from places I never knew existed. The image of my daughter in unspeakable pain, now forever etched in my memory, is still nearly too much to bear.

I was emotionally hemorrhaging from places I never knew existed.

Moms are supposed to guard their children from harm and shield them from pain and patch their wounds and love them so deeply that they cannot help but be strong and whole and ready to thrive. I had poured decades of my life nurturing her every step, celebrating each achievement, nudging her to new heights. This was the time she was supposed to be finding her wings. And I was not able to help her, nor able to make her painful reality less invisible to the medical world. I was powerless and in desperate need of strength and wisdom beyond myself. Day by day, and sometimes moment by moment, my empty hands reached out to God for the encouragement I needed…

“Do not fear, I am with you.  Do not be afraid; I am your God.  I will help you, I will strengthen you.  I will uphold you with my victorious right hand.” - Isaiah 41:10

I was powerless and in desperate need of strength and wisdom beyond myself.

During the months that followed, I resolved to take on any role that might prove helpful. I was only too happy to be the cheerleader, the midnight nurse, the appointment keeper, the listener, the researcher, the prayer warrior. When countless doctor visits, tests, and procedures gave us no diagnosis or treatment plan, I developed broader shoulders to bear the looks of sympathy and those of disbelief. Above all else I became the torch bearer of hope, beating off the darkness of discouragement and the encroaching boundaries of chronic illness.  

At the time, I rarely allowed myself to think about how I was feeling. It was my daughter, after all, that was suffering. She was my sole focus. Even now it is difficult to shine a spotlight on my own experience. But, in all honesty, I know I suffered right along side my girl. It was a suffering of the heart and it was real.

Few people understood what we were going through. How could they, really, unless they had gone through it themselves? But the lack of understanding was isolating at times. Sure, well-meaning people offered medical tips and suggestions, many of which we had thought of or tried months earlier. Most challenging, however, were fellow Christians that sneered with judgement when my daughter was not miraculously healed following prayer. That cut me to the quick.

Of course I had prayed. Every day since the ordeal began. I prayed for healing. I prayed for insight and wisdom. I prayed for revelation. I prayed for a miracle. And I knew all the while I was praying to the God that had the power to provide all of it. Without so much as a full breath, my God could make my girl healthy once again. Yet, in His Sovereignty, He chose not to. At least not yet. This was hardest on Anna. I watched the knees of her faith buckle at times as she wrestled with this reality and asked the question, “Why? At the same time, God reinforced my faith with an understanding that as much as I loved my daughter, He loved her even more and she was always and forever on His mind. I would need to walk in total trust and faith…enough to carry me and enough to uplift Anna as well.  

And so she and I walked. One foot in front of the other. We walked through days with ups and downs and began to settle into what would become Anna’s new normal. Not the life I had dreamed of for my little girl, but the one that God was carefully laying before her. The one He was equipping her for. The one that I would continue to trust was in His faithful hands.  

Years have passed since Anna’s illness began. She has since stepped into a life on her own with a faith that is more tenacious than I ever dreamed possible. She has developed methods of dealing with most of her symptoms and she continues to learn ways to cope as new health issues arise.  She has poured out her life, her experiences at the feet of Jesus and He is using her in remarkable ways to touch the lives of others in need. That alone is enough to fill my heart with joy and immense gratitude.  

I am no longer Anna’s primary health advocate. I passed that baton to her loving husband, Randy, when they married last year. It was hard to let go though, having gripped it so tightly for so long. But I am comforted to know there is someone with my girl when she has a need - someone I trust completely to hold her hand and reassure her when symptoms flare.  

 Wedding Photos courtesy of  Geneoh Photography .

Wedding Photos courtesy of Geneoh Photography.

My main task now is to pray. And prayer, I’ve learned, is no small thing. Every time I pray, God listens with intensity. Although He hasn’t healed my daughter yet, He’s far from finished writing her story. So my prayers continue and my hope is held high.

I feel so privileged to have been at my daughter’s side through some of the darkest days of her life. It deepened my relationship with her and greatly enriched my faith. God has been my lifeline of hope through every trial and disappointment. He has given me peace every time my circumstances gave me turmoil. I don’t fear for the future. God has patiently taught me to trust Him with the days ahead, even those that will undoubtedly be hard.

God has been my lifeline of hope through every trial and disappointment.

I have also learned that motherhood is a life-long journey of the heart. Though painful at times, it can be one of the greatest gifts on earth. For those who mother a child with chronic illness the venture is not easy. But with God, a mother is never alone. And with His faithfulness and promises to stand on, there will always and forever be hope. 


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Josiah

You see the core of who somebody is in their toughest moments.

What happens when you wrestle with illness from a young age? How does battling chronic illness challenge you specifically as a man? Josiah gives us an honest look at the things he's learned along his own journey. Through his experiences and an unwavering vulnerability, Josiah's story boldly challenges us with his perspective on who we're becoming throughout the process.

When you get frustrated with something,
you have a choice of how to respond.
This isn’t an end. This is a new beginning.
This is a new opportunity for you to live your life in a way that compels people more than maybe you could have before.

Want to see more stories like this?

People Hope is 100% donor-funded by people just like you, and we need your help to keep publishing hope-giving resources like this one! You can make a gift right now, or even sign up to join our Core Team of monthly supporters for as little as $10/month!