The Beauty in A Pause

“Let’s just take a pause”, he said. As he finished the sentence, the floodgates opened. I began to cry. There I was sitting in the office of this man I had just met for the first time crying “the ugly cry”. There was something about what he said that released fear, anxiety, and frustration that I didn’t even realize I had been holding.

I have developed some health issues over the past few years. They could have been there all my life or maybe they are new. I have no idea and wonder if anyone really does. What I know is, the past few years have been filled with symptoms and the cause has not been determined. I have seen several doctors, including two neurologists, and three rheumatologists.  All of these doctors have used testing along with their expertise to determine what is causing issues. I have a list of diagnoses a page long on my chart. The reality is, no one really knows for certain and each doctor has a different opinion and course of action to take. It has been exhausting. 

As I sat in front of my latest rheumatologist, I thought, here we go again. Every specialist has tried to address the issues and has added medication to manage symptoms. I don’t think things are significantly better with these medications. This time the doctor suggested a different approach. He had read through my chart. He was informed about my prior treatments. The doctor knew about Emily and her disabilities. He had assessed everything and then said with firm conviction, “I think the best thing is…let’s take a pause. Let’s discontinue all medication the other doctors have prescribed and wait and see. We will wait six months and start fresh with labs and a new perspective.”

There was freedom in his words. This makes so much sense. Often, when things seem unclear, when the path is uncertain, it is good to take a pause. When stress and overwhelm creep into my day, a pause can change those emotions. When my thoughts are racing or anxiety takes hold, I take a pause. When I am driving and feel like I am way off course, I take a pause. When Emily is inconsolable or agitated, take a pause. When I feel buried in my job, my life, my responsibilities, then I take a pause. When I feel pain, either physical or emotional, I take a pause. A pause is always the first action toward a calmer state of being. 

I feel best when I pause, listen to my body, take in my surroundings and choose to be in the moment. I see everything more clearly, and the answers seem to come to me. There is much to be learned in the pause. There is comfort, security, clarity, and awareness in the pause. Later we can try more testing, search for answers, and experiment with other options, but for now, let’s take a pause.

Are You Experiencing Caregiver Burnout?

Photo by Anh Nguyen on Unsplash

Caregiver burnout is defined as a state of physical, emotional, and mental exhaustion. It may be accompanied by a change in attitude, from positive and caring to negative and unconcerned. Caregiver burnout can occur when caregivers are not receiving adequate support, or doing more than they are physically, emotionally, or financially able to accomplish.

Often caregivers feel guilty if they take time for themselves. They feel obligated to be there for their loved ones 24/7. Caregivers that are experiencing fatigue, stress, anxiety, and depression may be on the way to burning out.

What causes caregiver burnout? 

Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical, and spiritual health. The demands on the caregiver’s body, mind, and spirit can lead to overwhelm, fatigue, stress, depression, and ultimately burnout.

Other factors that can lead to caregiver burnout include:

  • Role confusion: Many people are confused when thrust into the role of caregiver. It can be difficult for people to separate their roles as caregivers from their roles as spouses, lovers, children, friends, or in other close relationships.
  • Lack of control: Many caregivers become frustrated by a lack of money, resources, and skills to effectively plan, manage, and organize their loved one’s care.
  • Unreasonable demands: Some caregivers place unreasonable burdens upon themselves. Many caregivers see providing care as their exclusive responsibility. Some family members, such as siblings, adult children, or the patient himself/herself may place unreasonable demands on the caregiver. They place the primary burden of care on the primary caregiver without offering much assistance or support.
  • Other factors: Many caregivers cannot recognize when they are suffering burnout and eventually get to the point where they cannot function effectively. They may even become sick themselves.

What are the signs you may be experiencing caregiver burnout?

  • Irritability
  • Impatient 
  • Fatigue
  • Buffering with excess food, alcohol, television, social media, shopping
  • Weight loss or weight gain
  • Loss of focus or concentration
  • Withdrawal from friends and family
  • Insomnia or sleep disturbances 
  • Getting sick more often
  • Feeling blue or apathetic 

This is just a partial list. Every individual is unique. You may experience other signs not included above. Maybe you are having difficulty making decisions. You feel like you cannot do or add “one more thing”. You wish someone would come in and take charge. I know for me, I had thoughts like:

  • I just cannot make one more decision
  • This is too hard
  • I am exhausted
  • I wish I could run away 
  • I need a vacation
  • I can’t keep going like this

These are warning signs that you may need a break. You may be on the road to burnout.

The best scenario is to develop tools and strategies to prevent burnout before you experience it. Below are some tools that can prevent caregiver burnout:

  1. Make plans and automate decisions (automate anything you can).
  2. Set alarms for medications and other care tasks so you don’t think/worry about them.
  3. Hire a coach. It can be helpful to get insight and input from a person that is outside of your bubble. We get tunnel vision and do not see options that are available.
  4. Hire a counselor or therapist. 
  5. Know your limitations. We cannot be superheroes every day.
  6. Seek respite and outside caregiver services. This is vital. I cannot believe how many caregivers think they can do it all by themselves. 
  7. Trust others to care for your loved one. They may do it differently. You may have to try out several to find a good fit (like a good pair of jeans), but it is worth the time.
  8. Share your feelings and your struggles. Do not try to suppress the challenges and the feelings. I always say you have to “feel the feels”. Being sad, angry, mad, frustrated, lonely, and isolated are all normal when caring for a disabled or ill loved one.
  9. Ask for help and be specific about how someone can support you. Example: “Emily has a prescription waiting at CVS. Would you please pick it up and drop it off? I will Venmo the money for it.”
  10. Take time each day to do something just for yourself. It may be just listening to a song that pumps you up and dancing around the living room. Maybe locking yourself in the bathroom for 5 minutes to do a quick meditation or box breathing.
  11. Call a friend.
  12. Lean into your partner if you have one. Share your struggles and be specific in how they can help.
  13. On that note: nurture your relationships with friends, family, and partners. Connection is vital.
  14. Drink water. Move your body. Establish a regular sleep routine.
  15. Join a support group. Meeting with others that “get it” helps you feel less isolated. You realize you are not alone.
  16. Don’t take yourself so seriously. Laugh. 
  17. Look for ways to create joy each day. Some days have “more suck” than others, but you can always find something to be grateful for. Don’t underestimate the power of gratitude.
  18. Schedule health and wellness visits for YOU, not just your loved ones. (I define this as boring self-care.)

If you feel like you are experiencing caregiver burnout, reach out for help. Talk to a loved one, a therapist, a counselor, a friend, or a spiritual leader. Seek resources through your community for added support/care for your loved one. Don’t be an island. Reach out and find connections, support, and resources. Getting help is a sign of strength, not weakness.

You do not have to go through this alone. 

Take the Caregiver Burnout Quiz to see where you are at right now.

The Power of a Kind Word and a Smile

“Remember that your smile alone can save a sad soul or heal a broken spirit.” -Unknown

My mom always smiled at strangers. (She usually talked to them too.) The example I was shown by mom was to always be kind. Long before we all had tees in our drawers to remind us to “be kind”, my mom was. She recognized the impact of seeing and acknowledging others and lived life doing just that.

As a tweenager, I was embarrassed by her openness with others. Her eagerness to strike up conversations with strangers was horrifying to witness as an insecure and easily embarrassed tween. It seemed weird and unnecessary.

One of her stranger encounters stands out in my mind. My brother and I went shopping with my mom. I was probably 11 or 12. We were waiting in line to check out. (There was always a line at the store when I was growing up.) Behind us was a man that was probably in his late twenties or early thirties. He was in a fitted black tee shirt, jeans, and boots. His arms were covered in tattoos, and his muscles bulged from under his tee. The man’s biceps were bigger than my head. He had a full beard and dark eyes. This man did not look like he was up for engaging conversation by his expression, yet, I knew his tough exterior would not be a deterrent for my mom. I was petrified that she was about to go in for the conversation. Please don’t. Please don’t. 

Then my mom did it. She initiated a conversation with the Brawny man behind us! My 4-foot-10 mom looked up at the tall and stoic man with her biggest smile. She proceeded to acknowledge his muscular physique. She admired the sleeve of colorful tattoos on his arm. She asked him questions. My mom was not being flirtatious. She spoke to him the same way she talked everyone with sincere interest and curiosity.

I will never forget the beautiful and bashful smile behind his gruff exterior. He was so receptive and also a bit surprised. I gathered that most people didn’t randomly strike up conversation with him. My mom put a crack in the armor he wore. A child-like giddiness emerged. I think that sixty-second interaction was something he needed. I witnessed the change in his misdemeanor instantly. It happened with a few kind words and a genuine smile.

As we walked to the car with our groceries, my brother and I made fun of my mom. There was no way we would miss the opportunity to taunt her. “Oh look at your arms. You have Popeye’s arms,” my brother said mockingly. I rolled my eyes. I did not need to add words.

My mom just told us to be quiet. She did not take the opportunity to chastise us for being disrespectful. (Though we clearly were.) Mom consistently showed us how to treat others. My mom was the most open, curious, accepting woman I knew. She approached everyone she met as an equal. She believed every human deserved to be treated with kindness. She knew the power of a smile too.

While we continued to tease and taunt mom for years about her unshakable need to engage in small talk with strangers, it seems the apples do not fall far from the tree. I seek opportunities to have conversations with people I am in line with. I talk to cashiers. I smile at everyone that passes Emily and me on our walks. I acknowledge people that I interact with daily.

In a world where we connect primarily through screens and devices, engaging in conversation and sharing a smile with strangers is beautiful. Also, are they really strangers? Perhaps, they are simply people we have yet to meet. A warm and genuine smile can change that.

Looking Through the Rearview Mirror

Photo by Jan Kopřiva on Unsplash

Have you ever looked through a rearview mirror and been surprised by what you see? You wonder how you didn’t notice a tree, a person, a plant, or a house as you passed it.  Sometimes our focus is on other things and we miss stuff. You also see things you would have never witnessed if you had not looked back. I have seen some pretty amazing sunsets and also dark storms when I look back. The rearview mirror is similar to obtaining perspective. Time often gives us clarity on circumstances and life events we could not comprehend and understand in the midst of them. After time passes, sometimes, we are just as perplexed as the day it happened.

Today I celebrate my 30th wedding anniversary with my husband, Todd. We have navigated life together since my dad passed away in 1985. Todd was my friend for years, but something shifted after my dad died. I saw a different side of Todd. He was there to comfort me, remind me of the beauty in the world, and often just listen. Todd is a great listener. Although Todd was there for me, he was struggling with his own issues. We were two young adults treading water in a stormy sea, when one went under, the other was there to pull us up.

We have created a vault of incredible, wonderful memories. We have not traveled the globe or lived a life of extravagance, but our life is full of simple and joyful moments. Kissing for the first time at the Westin Bonaventure. We were at a Beatles convention. Awkward teens without a clue just how wild our ride would be. Driving my Mazda 323 up the coast of California to Washington with a boombox on the floor playing tunes from FM Radio. We still laugh at the fact that I could afford either air conditioning or radio in that car. I picked air conditioning. The birth of our children. Buying our “starter” home, which is the place we still call home 26 years later. 

We have experienced more trials and tribulations than many couples, certainly ones that have stayed together through them. We have survived the loss of family, friends, and jobs. Our marriage has experienced mental and physical illnesses, trips to the hospital, and financial struggles to name a few. We have raised two children, one with developmental disabilities. (Most marriages do not survive when they either lose a child or have a child with a disability.) Emily is severely disabled and requires full care for all needs. This ups the ante on the divorce rate.

I remember reading an article a few years ago that discussed the correlation between families that camp together and closeness. The gist of the article was that families that encounter near-death experiences develop a strong bond. Bears invading the campsite, breaking into the car, or a flash flood warning where you are staying are bonding moments. Living to tell the tale and knowing you got through it together strengthens your bond. Our marriage is full of bonding moments.

Our relationship grew from friendship, hardships, and struggles. We leaned into one another through our struggles and love was the result. We grew to love one another. What keeps us together is knowing we are better as a unit than we are alone. We get further and faster. We have more resources. Our ability to overcome the obstacles that come our way is more bearable, manageable, and less fearful knowing we are in the trenches together. We are partners.

1992
2022

Short Lives-Impactful Dashes

Stephanie’s tattoo in honor of her Squishy Love

When we have children, our lives are forever changed. For some parents the changes are minor. The family grows, but the flow, friends, and routines are only slightly altered. When Justin was born, we were in this category. He was so easy. I could take him anywhere, and he just adapted. My routines, friends, and schedules were not disrupted. Emily was born, and she really shook things up. She turned our lives upside down. We were suddenly parents of a disabled child, and our world looked different. We became part of a club we never wanted to be in (or even knew existed). The club is full of people facing challenges, pain, grief, and sadness, but also joy, resilience, compassion, pride, and unconditional love.

A friend and I were talking last week. She mentioned that she has experienced very little loss in her lifetime. I thought she was fortunate, and I began to think of the journey I have traveled. I lost my dad and grandparents when I was a child. These losses were difficult to process, but they were predictable to my young mind. We are born, we grow old, and then we die. Death is the goal. The reality is that growing old is not always the journey for many of Emily’s peers.

Collin and Justin watching cars go by

Emily’s disability has shown us a life of loss. It is not rare but rather a regular occurrence in our community. Many of her peers have passed away over her lifetime. I grew up hearing that no one should outlive their children, yet we experience this regularly in our community. The community of chronic illness, disability, and rare diseases and disorders are one where many parents lose their child. Parents outlive their children and must figure out a way to go on. They are not brave and survivors by choice but because they have to be.

I have attended many services for children. The parents and family share the beauty, joy, and goodness their child, grandchild, sibling, or friend has contributed to the world in a short time. I have personally experienced it myself. They have taught others to slow down and appreciate the joy in small accomplishments. They have brought out the best in others and softened even the hardest of hearts. They have shown me and others what unconditional love looks like. These children do not care about your nationality, skin color, or how much money is in your bank account. They possess the best qualities of humans. These young lives have made a difference. Anyone who was blessed to meet and interact with them has been forever changed. They teach us to love unconditionally. They show those around them that there is joy in even the hardest journey. I have watched these children laugh and smile through physical pain and discomfort. 

It is said that in death, it is not the day you are born or the day you die that matters but what you did in the dash. The dash is everything. These young superheroes have done more with the dash than some people that live to be 100. They have loved fiercely, fought valiantly, and embraced the life they were given. They have taught the adults around them to continue to fight for others in their name after they are gone. Many of their parents have become some of the most impactful advocates for change. They raise money to find cures and start foundations to increase awareness. They preserve the memory of their child and use it as a catalyst for change.They fight for cures and change so that other parents may never have to worry about losing their children.

I remember speaking to one parent a few months after her son passed. I was curious how she was able to move forward after such a tremendous loss. Her response is something I have always remembered and fully embraced. She said, “All life is a gift from God. It is not a given. We do not know how long we will have the gift. Each day we must remember to cherish the gift because one day it will be gone.”

Colline Presley 7/4/2000-8/9/2012
Always Remembered
Steven Spurgeon 11/17/1998-11/21/2013

I Only Have 5-Minutes? That is Enough

photo by Ashlyn Ciara

I have learned the hard way the value of taking care of myself. I used to believe that self-care was going to the spa for a massage or a weekend away at a retreat. While I do believe these are wonderful ways to refuel and recharge, the result is short term. They will rejuvenate the soul and spirit for a short period but won’t do much to manage the day-to-day stress we all face. Truly caring for our emotional, physical, and mental well-being requires small consistent actions taken daily.

Caregivers will often say they do not have time to take care of themselves. I understand this obstacle. The job of caring for Emily is taxing and unpredictable. The intensity is often overwhelming and the stress, unless managed, can be debilitating. I learned quickly that the road to a healthier and less stressful life was not going to happen through an occasional spa visit or weekend away with my friends. I needed to create small daily habits that I could do quickly and fit into and around my schedule. My life is not set up to be at the gym working out daily or meditating for hours and the beautiful thing is I can improve my health without doing these things.

I started to incorporate small and frequent daily habits that would help reduce stress, move my body more, and increase my feeling of joy. Each can be done in 5-minutes or less. The more I can incorporate into my day the better, but even if I do just one a day, it is beneficial to my body. Short and frequent breaks can do wonders to calm the mind, body, and soul.

Here are just a few of my favorite ways to refuel in 5-minutes or less:

  • Enjoy a 5-minute meditation. (Try Calm, Insight Timer, Headspace)*
  • Take a quick walk around the block
  • Step outside and breathe in the fresh air and soak up the sun (or rain)
  • Have a dance party anywhere
  • Make a playlist of your favorite songs and listen throughout the day
  • Start your day with a brain dump (call it journaling, scribing, or a To-Do list) Write about anything that is on your mind
  • Take a minute to do focused breathing: “Take Six” (Six slow breaths is about a minute)
  • Do a 5-minute HIIT workout (YouTube has lots of short options)
  • Stretch (We forget how stiff we get just doing life)
  • Set a timer on your watch to remind you to stand or move each hour (get some blood flowing)
  • Take a power nap or visualize for a few minutes (Set a timer. Close your eyes. Rest.)
  • Grab a healthy snack and eat it without doing anything else (put down the phone)
  • Sit in silence
  • Invest in a pair of noise-canceling headphones (this investment alone has reduced my stress)
  • Read a chapter in a book
  • Flip through a magazine
  • Journal at the end of the day
  • Begin developing the skill of practicing gratitude. Write down three things you are grateful for each day and WHY. The WHY helps you connect and creates a more meaningful practice. You can grow your practice over time.

This list is enough to get you started. Think of creative ways to add more activity into your daily routines. It takes my daughter about 30 minutes to eat her morning oatmeal and applesauce. I stand while I feed her and I take steps or walk around between each bite. It often takes her 28-30 steps to chew and swallow one bite of food. Over 30 minutes I have racked up anywhere from 250-1,000 added steps into my day. I do not have take any time out of my day to do this. I am only switching up how I perform the task. It isn’t going to have a great impact on my cardiovascular wellness or build strength, but it is enough to get the blood flowing and increases the time my body is in action rather than inaction.

Beginning to notice times in your day where you can incorporate a short break will get your brain looking for more times and more ways to quickly recharge and utilize the time you have throughout the day. The most difficult challenge is overcoming the belief that a few minutes is not enough to do anything. Because that is just not true. A 5-minute consistent practice adds up to 1, 825 minutes per year. It is possible to change your life and improve your health 5 minutes at a time.

Photo by Kari Shea on Unsplash
Photo by Ana Tavares on Unsplash

*Michael O’Brien, founder of the Pause Breathe Reflect movement is launching a meditation app in the fall. I have be fortunate to be part of the beta test group and this app is a game changer. Reach out to Michael through his website to find out more.

Feeling It Helps You Heal It

Photo by Karolina Grabowska

Oh, there is such joy and beauty in laughter. When Emily was a toddler, she giggled and laughed all the time. Her smile and laugh could cheer me up on even the worst day. Laughter lifts our mood and the mood of those around us. It brings inner joy and happiness, but sometimes we do not feel like laughing (or smiling). When we are hurting, tired, sad, and angry, it can be beneficial to cry. Often we suppress negative emotions. We choose to swallow them down, and they get pushed aside. Emotions desire to be expressed. 

When we suppress our emotions, we usually end up doing more harm than good. We may overeat, overspend, over-drink, or binge-watch a show. We do anything not to feel the emotion that our body wants to release. The pain is still there, and unless we process the emotion, it will still be there. We may add extra weight, increase our debt, sacrifice sleep and our health, but the pain does not disappear. If you break your arm and ignore it, that will not solve the problem or resolve the pain.

Crying is an incredible way to release painful emotions. Once we acknowledge our emotions and give them space to be processed, they will slowly (or quickly) dissipate. Crying is therapeutic and healing. It is similar to addressing pain when your body aches. For instance, if you get a headache and stop to address it with pain medication or a natural remedy the pain usually goes away. If the pain is ignored, it will usually get louder until we take action to address it. Emotions are the gauges of our mental wellness, and pain is a gauge of our physical well-being. A quick way to help treat mental pain is to cry. It sounds so simple, and yet it is often difficult. There is science behind the benefits of shedding emotional tears.

Humans experience three types of tears. They are basil, reflex, and emotional tears. Each has a function and purpose. Basil tears maintain eye health and protect the cornea. Reflex tears flush the eyes of toxins. They help eliminate stray eyelashes, dust, smoke, or fumes. All species experience basil and reflex tears but only humans express emotional tears.

What is the purpose of emotional tears? They don’t maintain eye health, and they do not eliminate toxins, so what do they do? Here is just a partial list of the benefits of emotional tears:

  • They help release stress from the body.
  • Crying releases endorphins, and by doing so, boosts our mood.
  • They signal to others that we need support.
  •  Crying can also dull physical pain in the body.
  • Tears help restore emotional balance.
  • They can aid in sleep. Tears can help us rest better.

Did you know crying also helps babies to breathe? I think that is a wonderful reason for tears. Crying is important. Both laughing and crying serve a purpose. Go ahead and have a good laugh when you feel giddy or happy. Also, go ahead and have a good cry when your emotions are calling for one. Releasing emotion is good for your body and soul.

Can We Just Stop Pretending?

This weekend our family went to look at homes a few hours from where we currently live. We are exploring our possibilities after Todd retires in a few years. We scouted out a few areas where we found homes that looked promising for our family. We booked an Airbnb in the community to get a feel for it. Well, Airbnb was just as described. The home was as expected, which was a refreshing change. Everything we see: people, places, and homes for sale appear to be edited and photoshopped until some are unrecognizable. Where does it end? Does it ever?

I may edit a photo to enlarge or make it brighter, but I do not alter my home (or my face and body) for an image. I may try to use the best angle, but if I post something—what you see is what you get. When did our world become so fake? How do we make it stop? I get it. We want things to look nice. I work for a graphic design firm, and our company makes things look good. They make the product or website look pleasing. When the finished product is completely altered, far enough that you do not even recognize it when seen in reality, haven’t we gone too far?

I follow some people on social media that could walk up to me and say hello, and I would not recognize them. It bothers me. I know we want things and ourselves to be aesthetically pleasing, but to what degree and what is the cost? Do we smooth out every flaw and imperfection and put a perfect “Avatar” of ourselves into the world?

Last night when Todd and I reflected on the homes we visited, we were upset. Todd was angry that the homes we scoured on Zillow, and drove two hours to see, did not remotely reflect reality. I know home staging and photography are big businesses. It can help increase profit on a home. I understand the value, but I also know that Todd and I spent 48 hours looking at properties we never would have visited if they were represented honestly on the website. If the descriptions and photos closely represented reality. We laughed at the absurdity of the process. We came home feeling duped.

A world where everything is altered and made to look different must have a long-term impact on society. I began thinking about young girls going on social media only to find a world of women and young girls that are perfectly proportioned and flawless. Their makeup, hair, and body are all perfectly placed and have perfect proportions. Every freckle, wrinkle, and spot of cellulite is erased with the click of a computer key. It is not easy for adults to handle the perfection displayed on our screens. Destinations, locations, people, and places are all represented in flawlessly in videos and photos. We begin to feel insecure or less than. Even people with a strong sense of self can feel pressured to edit or alter what is posted on social media.

I refuse to do it. If you go to my social media, you will see the good, the bad, and the ugly. You will find a woman sometimes wearing a tee shirt, without makeup, and with cellulite. You will also see me in makeup and dressed for some occasions. You will see the real house. (I quit staging the pretend house, even when company is coming over years ago. I am a perfectionist in recovery since Emily was born.) There is often laundry, dog toys, Emily toys, and clutter in the background. Because this is real life. Real life has paint chipping from the house, dirt spots on the windows, and weeds to be pulled, and it also has cellulite, wrinkles, and sometimes bags under the eyes from lack of sleep. The sand is not always white, and the water is not always clear. Life is beautiful, and it is messy. There is no such thing as a perfect home, perfect body, or perfection in nature. Everything has imperfections. Don’t give up on improving yourself, your home, or your environment but be confident enough to display and show up as the real you. The unfiltered, imperfect, and yet totally perfect you.

1st bio pic: no makeup selfie

Caregivers Need Care Too

Photo by Etienne Girardet on Unsplash

I believe caregiving is the toughest job on the planet. I have had a lot of jobs, and nothing compares. The exhaustion I often feel at the end of the day is brutal. Caregivers often feel like they have no choice or other options. They could relinquish the care to someone else, but they want to do it themselves. While we know the job is difficult, it is also rewarding. We know we will care for our family well and meet their needs. We value our ability to provide impeccable care for our loved ones. But what about our care? Are we providing the same impeccable care to ourselves that we lavish on others freely? I would bet that most of us, myself included, would answer no.

Last year I began working with the group We Are Brave Together. This organization, founded by Jessica Patay, is on a mission to support moms caring for children with unique needs. We Are Brave Together wants to be a lifeline for moms to get the respite and support they desperately need. They provide opportunities through local support group meetings and weekend retreats. It is an honor to work with We Are Brave Together.

During my short time with this organization, I have witnessed firsthand the resistance and obstacles caregivers struggle with that prevent them from taking time for themselves. I have heard stories of health issues that went untreated because they did not have the support to care for their child. They are not only lacking time off, vacations, or spa days, but missing out on mammograms, dental check-ups, sleep, showers, doctor’s appointments, proper nutrition, and other basic human needs. Many ignore the care that is required to live a healthy life while making sure every need of loved ones are met. These women have been unable to sustain, create, or find the support they need.

Supporting caregivers is not easy because the obstacles and struggles seem impossible to overcome. Some of the reasons moms have given me for not being able to attend support group meetings or seeking support are:

  • I am the only one that can care for my child
  • I don’t want to be a burden to someone else.
  • I don’t have the money to pay for help.
  • I have no one to leave my child with so I can get a break.
  • It’s my job to care for my child.
  • Other parents do it alone. I should be able to as well.
  • I have no one I can lean on for help.
  • I don’t have time to take care of myself.
  • I don’t know how (or who) to ask for help.
  • Finding reliable (and affordable) care is a challenge.

I empathize with many of the challenges they face. Caregivers are tough, stubborn, and relentless. They are problem-solvers. They are protective. They put everyone else above themselves. They do it mostly without complaining or asking for help. This works well until it doesn’t. The reality is none of us are meant to do this alone. No one is equipped to handle the amount of stress that full-time caregivers experience. Often our children require more time and attention than one person can provide. We are not created to care for others all the time without taking time to rest and recharge. We think rest is optional, but the truth is rest is vital. 

When our cell phone’s battery charge is less than 10% we freak out. We panic to find a charging cable and a source of electricity. We worry about the battery dying and missing a call or something important. A dead cell phone is useless. Maybe if we start thinking of our bodies like our cell phones, it would trigger us to recharge them more often. We cannot continue to give without taking a moment each day to recharge. It is not sustainable. We will crash and burn. If that happens, and it will, then who will be there to take care of our loved ones that we fight for each day? 

Caregiving must start with us first. When we begin to take impeccable care of ourselves, our ability to care for our loved ones improves. When we are healthy, we are more productive. Caregivers cannot hear this message enough. It is imperative that we remind ourselves daily of the value we add to our family. Give yourself permission to take the time to charge your battery a little bit each day. Take one small action daily that will improve your mental or physical well-being. Caregivers are powerful when our batteries are low. Imagine the things we could accomplish if we were 100% charged. 

Disabled Children and Traveling Challenges

Photo by Patrick Rosenkranz on Unsplash

When Todd and I were married, we dreamed of all the places we would travel to and the adventure we would share. Before we had children, we would take trips. We mostly traveled the Pacific Northwest and a few trips to Mexico. We did not have the finances to travel overseas. One day, after the kids grow up, we will have the time and money to travel. This was our grand plan, and then plans changed. Life Changes by Thomas Rhett describes beautifully making plans and then life changes. We had Emily. The plans to travel once our kids grow up and move out were canceled. 

Emily is not a great traveler. She does okay in the car, but planes are a different story. When she was a baby (and toddler), we flew to Colorado to visit family a few times. I also took both kids to Washington when the kids were 4 and 5. It was a challenging trip to do solo. I may have bit off a bit much, but still, things were manageable. When Emily was eight, we flew to Colorado to spend Christmas with Todd’s family. It was awful. She vomited in the TSA line (it isn’t a trip until she does). Emily fussed the entire flight (people are not very kind when your 8-year-old is throwing a fit) and kicked the seat in front of her constantly (I still feel terrible for the tolerant women in front of us). My father-in-law was embarrassed by her behavior. I was so anxious and dreaded the flight home the entire stay. The low-level anxiety impacted the enjoyment of our time with family. I knew then we would never fly commercial again. I have no desire to be the headline on the six o’clock news, “family with disabled daughter kicked off plane for bad behavior.”

Travel is almost impossible for many families in a similar situation. Parents that have children with complex medical needs, intellectual and developmental disabilities, autism, and other disabilities, are often unable to travel and vacation more than a short distance from home. Boundaries are set that are difficult to traverse. Many cannot be far from the medical services that they depend on. The child may have rigid schedules and does not tolerate change well. There is a lack of appropriate housing, restrooms, transportation, and facilities to accommodate our kid’s unique needs. Often our children require equipment and supplies that add up to a lot of extra to bring along for the journey. There is fear and anxiety about dealing with behaviors, outbursts, and/or bodily fluid incidents. I am only touching the surface. There are many roadblocks to traveling.

Going on a trip without our children is not always an option either. Taking a family vacation without part of the family can induce sadness, guilt, and a plethora of other negative emotions. We worry about our children while we are gone. There is also a shortage of good, qualified caregivers to entrust with our children. The cost of such care can be prohibitive as well. The anticipation of the challenges often stops us from planning and executing a trip. Often one parent travels with the typical children while the other parent stays home with the disabled child. When Justin was seventeen we traveled to Disney World for a vacation. Todd stayed home with Emily. It is a world of divide and conquer. One parent usually feels like they got the short end of the stick. Again sadness and guilt come along for the ride. (For the record, Todd thought I got the short end of the stick that trip.)

There are many challenges, but the task is not impossible. We took two road trips last year with Emily. A three-week trip from California to Ohio. We visited so many beautiful places. Emily enjoyed the trip and rose to the occasion, but it was difficult. Todd and I will both tell you that it was not a restful vacation, but it was worth the effort. The entire family went camping and to Las Vegas last November. This trip was easier because we had Justin with us. He prepared our Thanksgiving meal. My friend (and accountability partner), Cheryl, was kind enough to host the family with open arms for Thanksgiving dinner. She is used to Emily’s noises and feistiness since we talk on Marco Polo daily. It was a safe and welcoming environment. Emily was also escorted out of two places by security because she is unable to comply with mask requirements on that trip. Just a bump in the road and a funny memory from that trip.

Last week I decided to renew my passport. It expired in 2020 with not a single stamp on it. The last time we traveled out of the United States was in 2008. Todd’s parents were still able to care for Emily. We took Justin to Costa Rica for a week. I would love to travel and explore new destinations. I am in a listening circle and we have been discussing a meet-up in the future. We are exploring destination ideas. I am not confident that I will be able to make a trip work, and Todd is less than thrilled at the idea of me traveling internationally without him. I am keeping myself open to the possibility. The possibility that quality caregivers will come into our lives and watch Emily for an extended time. Hoping that one day Todd and I will travel together and see new places. The possibility of meeting my friends in a fun or exotic destination. I told Todd this weekend that I am a dreamer. I visualize things that are difficult to imagine actually happening but are not impossible. Adults call this visualization but isn’t that daydreaming for adults? You never know. Because sometimes dreams do come true.

Photo by Rocio Ramirez on Unsplash