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

A Cup of Coffee and Greater Connection

According to worldpopulation.com, 50% of marriages in the United States end in divorce. That means for every wedding you have attended, half will end in divorce. If the couple has a child with a disability, the divorce rate jumps to 80%, and if the child is severely disabled, some figures show the rate as high as 87%. I knew the statistics were not great, but seeing the recent statistics was startling. This past weekend I attended a support group meeting for moms raising disabled children. Many of them expressed marital issues. Miscommunication, disconnect, lack of support, and lack of quality time with their significant other.

As I listened, I could relate. Raising and caring for Emily has impacted our relationship and ability to spend quality time together. Add our own mental and physical challenges, and the struggles increase. It is hard to create connection and intimacy when you are exhausted and not feeling well. You do not have the energy to invest in your spouse or significant other. It takes effort you do not have. The past two years have been full of things outside our control. We have faced surgeries, a pandemic, illness, job changes, and changes in Emily’s schedule and care. Todd and I have not done a great job of prioritizing our relationship. We have been like two ships passing in the night. 

I have been forthcoming about the struggles of maintaining our marriage under extraordinary circumstances. We have encountered financial trials, mental and physical health issues, and obstacles raising a child with severe disabilities. We have definitely not handled everything with grace and unity. Often we have been on opposite sides, refusing to work together and set in our own ways. Continuing to stay in the relationship is the hard thing. The work is taxing, and it seems it would be easy to throw in the towel and call it quits. Although, I predict this strategy is not as great as it sounds. I will add another divorce fact. Each subsequent marriage has a higher rate of divorce. The divorce rate for second marriages increases to 60%, and the divorce rate rises to 73% for a third marriage. A new partner isn’t going to fix things. Where you go, your baggage follows.

During times of struggle, it is best when Todd and I work together. Todd and I are an incredible team. But what happens when we are out of sync? What changes take place in our relationship that creates distance rather than connection? How do we fix it and get back on track?

After 37 years together, it is easy to take our relationship and each other for granted. We get busy with jobs, commitments, and caring for our family. We fail to create the time and space to connect with each other. The distance grows slowly. It doesn’t happen overnight. These seasons often feel like I am living with my best friend or a roommate, not the person I have committed to love and cherish for the rest of our lives.

How do you get unstuck? How do you regain the joy, intimacy, and connection you are missing? I do not have the answers, but I know it includes hard work, dedication, sweat, tears, and grit. The first step is recognizing the disconnect. We realized in January that we needed to make an effort to work on our relationship. We both wanted to create ways to prioritize, nurture, and support our relationship. Todd and I committed in January to do something together each month. We would go on a date night or an overnight trip. We did a great job of keeping this commitment until we became overwhelmed. In June, Todd’s parents were having health issues. A week into the madness of caring for Todd’s parents, followed by the Covid takeover of our home, I requested that we start the morning with each other. I asked Todd if we could enjoy a cup of coffee together (without glowing screens) before we hustled off to recover or care for others. This small action has been instrumental in closing the gap of disconnect. Just five to ten minutes at the beginning of the day has impacted our relationship positively. It is so easy to get lost in the day-to-day minutiae. It is easy to forget the things I love about my husband and to fall out of rhythm. Disconnection is easy but reconnecting is just as easy. A simple cup of coffee got us back on the same page and working as a team. Each cup of coffee together, I see characteristics and traits in Todd that made me fall in love with him in the first place. 

It takes more than a cup of coffee to maintain and grow our marriage together, but it is a starting point. The closeness I feel after this time creates a desire to spend more time together. This weekend we discussed working on a few projects in the yard. This led to us implementing the projects. We worked together outside for a few hours. We made dinner together. We went to a concert together. We build on the foundation and add other ways to connect. Connection creates a deeper connection. We know we are better as a team than we are alone. We go further and get there faster when we do it together. When we lose sight of that, it only takes a little recognition and course correction to get us back on the road and toward our destination together.

When It Rains, It Pours

I worked at Morton Salt for ten years. I have used their motto for years to describe times when it seems God is piling a lot onto my plate. “When it rains, it pours.” The motto was never meant to be used the way I use it, but that never stopped me. When it rains, salt clumps and gets hard. It will no longer flow. Morton Salt was the first salt company to add an anti-caking agent to the salt, so when it rained, it poured. 

Since my foot surgery in May, it has been pouring. A couple of weeks ago my mother-in-law started having issues. She was having balance issues and kept falling. She was also experiencing memory issues. My father-in-law needed some assistance. Todd and Justin went to Todd’s parent’s house daily to help them. A few days into the routine, Todd’s parents both tested positive for Covid. We knew there was a risk from Todd being there, but there was no one else to help. Todd continued going to his parents daily. The following Saturday, all four of us tested positive. Casa de Chaos was officially Casa de Enfermo.

Todd and Emily were down for a full week. Justin was asymptomatic. I am still testing positive and not feeling great. I just can’t seem to fight it. Our house is typical to others, we all pitch in and help, but as the mom, the majority falls on me. Everyone depends on me to take care of them, and that was no different with everyone having Covid in the house. The boys helped with Emily but the majority of her care was on me. I am certain I have not got the rest my body needs to recover. I have done the bare minimum to keep the home running. I have ordered groceries to be delivered. I do not have the energy to do much or do much well. 

It hasn’t been easy keeping my spirits up. I have been hard on myself for not being able to “rally” or do more. There is guilt about Emily being stuck in the house for a week, although I am sure the general population appreciates that. I am mad that my body is not recovering as well as the rest of the family. 

This past week I have been leaning on a quote from one of my prior articles, “gratitude is always available”. I have to keep reminding myself to look for the good. What am I grateful for in this season of pouring rain? 

  • Grocery delivery service. Seriously, bread and bananas delivered within an hour. Groceries were delivered to Todd’s parents when we were sick and couldn’t shop for them. 
  • The Wiggles. You all know I am forever grateful for them. Those dudes always have my back.
  • My job. I have the best bosses in the world. They have always worked around my crazy life and I am grateful.
  • My Seeing Goodness and Pause Breathe Reflect Communities. These peeps have called me. Texted me. Sent goodies (things I never knew I needed). They have sent me books, quotes, art, and poems to lift my spirits.
  • My mentor, Bobby Kountz, for sending me his art and quotes to encourage me.
  • My accountability groups cheer me on and call me out on my negative llama drama.
  • Streaming. When I have been up at 2 am sick and unable to sleep, I can find something to watch. Thank you Kathleen for sharing your son’s film, Love & Gelato. It was fun, cute, and just what the doctor ordered.
  • NyQuil. Did I mention that this old-school remedy still works to help me catch some zzz’s.
  • Fresh, delicious fruit (delivered to my door). Emily and I have eaten our body weight in cantaloupe, honeydews, watermelon, and pineapple.
  • Homemade soup.
  • Good books, mediocre books, and fantastic books. No matter the quality, I have been distracted from my misery and transported to new places through books.
  • Bleach, Lysol, and essential oils. All have been used with reckless abandon in our home. 
  • My home. It is not huge. It is not flashy. It is small but comfortable. It has everything I need.
  • Corry for bringing me more Covid test kits when we ran out!

Once I started looking for the good, I kept seeing goodness. I am grateful that I have learned to find things to be grateful for in a storm. While I do not always choose gratitude, I know gratitude is always available.

A special thank you to Connie, Kimberly, and Sharon for my packages that came three days in a row. I was grinning from ear to ear. The book is hilarious. Not exactly a doodle book but I am sure I will be seeing Butts on Things everywhere. 

Shout out to DripDrop ORS Dehydration Relief. These are the best things I have ever tried. Healthier than store bought energy drinks, they dissolve quickly and completely, convenient packaging, and they taste delicious. Emily and I are huge fans!

Disability, Communication, and Covid

This week we all tested positive for Covid. This has been challenging for our family. We usually work as a team. If one person is down, another can pick up the slack. (Think Brené Brown’s GAP plan.) Well, we are all down. This would be okay if we could all retreat to our corners and rest, but we can’t. We still have to care for Emily.

If Emily slept, that would also be helpful. We do not know what Emily’s disability is, but whatever she has impacts her sleep. She doesn’t do it. It takes lots of medication to get her to sleep, but nothing keeps her asleep. Someone must stay close by to supervise her and make sure she doesn’t get into trouble. She loves to knock over furniture and rearrange the tables. Her crawling has suddenly improved with Covid. (I am probably just slower.)

Emily’s activity that keeps me on my toes is not my biggest concern. I am worried about her. Her inability to communicate how she is feeling has always been my biggest concern. If she seems unwell, I feel fear and anxiety. I worry and watch. Today she is refusing food and liquids. I can only presume she has a sore throat, and it hurts to swallow. Then I worry she is not getting enough fluids to help her body heal. Rest and hydration are key to recovery, and she is not doing much of either. 

She takes pills with applesauce like a champ, so we give her the same medication we take to manage our symptoms. It is the best we got, but it feels inadequate. I hate the lack of communication more than anything else about her disability. It has always been difficult for me to accept. There are times I can see her frustration too. She knows what she wants (or doesn’t want) but cannot express it.

God willing, Covid will pass. We will all wake up one day and feel better, but Emily will still be unable to express her wants and needs. I am too sick to try to spin my thoughts. It sucks.

Caregiver for a Season, Part of Our Lives Forever

As we walked into the store, Emily let out a squeal or a scream. Well, it was a high-pitched reaction that vocalized extreme emotion. Emily doesn’t regulate her emotions the same way we do. She may go from a cry to a laugh in a millisecond. Her squeals told me she was experiencing an emotional moment. I looked up from Emily to see one of her old caregivers standing next to her. When Emily sees someone she recognizes, she is loud, expressive, and dramatic. I imagine her saying, “I am so excited to see you. I have missed you! Where the heck have you been?” Happy, sad, and accusatory all in one scream.

As I open my mouth to say hello and hug Janel, I am shocked by my reaction. I begin to cry. I am standing at the entrance of Vons crying. I am unable to contain my emotions. Janel hugs me, and I reign in my emotions. We talk for a few minutes as Emily continues expressing her feelings, then we say goodbye. They leave with their groceries. Emily and I begin our shopping.

I walked the aisles pushing Emily and discussed our encounter. I told her how happy I was to see Janel, and I bet she was too by her reaction. I reminded her of places they have gone together and nights she has stayed at our home so Todd and I could go away. Memories are flooding my mind. It amazes me that once our minds uncover one memory, it continues the process. Our mind reveals more and more. Our memories remind me of a Russian doll. You open one, and there is another one inside. I began to recall other wonderful caregivers we have had over the years. Each caregiver comes into our home with their own unique style.

When I think about these women, I get emotional. While they have provided care for Emily and respite for us, they have also been friends and confidants. They participate in family activities, conversations, and plans. They understand some of the challenges we face. They offer empathy and understanding. We learn about the people that are important to them. They share their dreams and hopes for the future. They don’t just care and connect with Emily, but the entire family. We get attached to each of them. We become invested in them. We cheer them on and they cheer us on. They work with us. They grow with us. One day, they move on from us.

Moving on is the goal for them. Caring for Emily is a step on the path to their future. They get a better job or the dream job. Some have gotten married, had babies, or moved away. The process is bittersweet (my unofficial word of the year). I cannot remember my word of the year, but the word I seem to use on the regular in 2022 is bittersweet. We are happy for them but sad for us. 

As Emily finishes her public school adventure, there is uncertainty about what our days will look like. I imagine they will be similar to the pandemic lockdown days. Emily and I will be spending a lot of time together. I will have to adapt my schedule to handle more day-to-day care. Life for Emily and me during the pandemic lockdown was difficult. The thought of the future paralleling that time feels heavy to me. 

Running into Janel reminded me how much I miss her and the other caregivers we have been blessed with over the years. I miss having others help bathe and care for Emily. I miss the friendships I have shared with them. I am hopeful that other caregivers will come along to help with Emily in the future. Most will travel alongside us for a season or cycle, but all will live in our hearts and memories for a lifetime.

Are You Really Just Fine?

Self-reliance is a characteristic that is admired in our culture. People that figure things out and get things done are respected, admired, and emulated. I have always taken pride in the fact that I am self-reliant. I wear the badge with honor. No matter the problem or obstacle comes my way, I will figure it out. No matter how much time, labor, or dedication it takes. You can bet I probably will not ask for help. If anyone thinks the load may be a bit much for me to carry and offers to help, they will probably get some version of No, I am fine. It’s fine. I can handle it. Thanks for asking.

I am not a unicorn. Most people, but especially caregivers, will not ask or even take help when offered. I love helping others. I get so much from being able to do something that makes it easier for someone else. It brings me joy. I am happier when my burdens are light, and yet I resist. I am complex, and I am working on this. Several conversations over the past week have highlighted this flaw of mine. Wait, didn’t I say it was a trait to be respected and admired? I am wishy-washy that way. While I admire my ability to rise from challenges, I recognize that this isn’t always the best or healthiest way.

When my children were toddlers, our family experienced one obstacle after another. It became clear when Emily turned one that she had a disability. We knew we needed to make changes to support her. I gave up working outside the home to manage the needs of her and Justin. I spent my days going to appointments, therapies, and on the phone dealing with insurance companies. Our once thriving plumbing business was struggling. Caring for Emily demanded a majority of our time and energy. Our business revenue plummeted. The bills and demands increased, as our finances and energy decreased. We were at a low point, but Todd and I knew that as long as we figured out how to keep a roof over our head, the kids dressed, and food on the table, we would be okay. 

I did what I always do. I pulled myself up by my bootstraps and got busy figuring out how to make less enough. I stretched our meals and money as far as possible while maintaining a smile. I collected newspapers from neighbors and clipped coupons for hours. In those days, you could use double coupons and get many things for free. I would stock up on free items, but they were not always what we NEEDED. I had a backstock of 409 that would make any pandemic prepper proud. Todd would roll his eyes every time I unloaded more free 409 bottles from my grocery trip. They were free, but not what we needed. I began to ask other couponing friends if they had too much of something and would want to trade. I would exchange my surplus of 409 for toothpaste, shampoo, and cereal. I got resourceful. Look at me, I am self-reliant.

As the holidays approached, we began receiving boxes with food on our doorstep. They included essentials: meat, peanut butter, eggs, bread, and milk. This was in the pre-Ring days. We do not know who provided us with these beautiful boxes. I suspect a friend in my coupon circle saw we could use some support. They wanted us to have more in our cupboards than 409. Someone at our church also added us to a list of families that could use some assistance during the holidays. Right before Thanksgiving, we received a box with a turkey coupon, dressing mix, cranberry sauce, potatoes, yams, gravy mix, and a grocery card to fill in the missing pieces. Another anonymous act we received from caring souls. 

The kindness of others made it easier for us during that season. It took some stress off of me. It gave me and Todd room to breathe. Having the resources to make a good meal and pay the utilities that month was comforting. I am so grateful for the kindness others showed us. Yet, we would have never asked for the help, or stated we had a need. Wouldn’t it have been easier to ask for help? If asked, tell the person what we need?

The impact of the support was incredible, and yet, I am not sure I would ask if I were in the situation again. I know I am growing and learning, but the habit of independence runs deeps. It will take time to unlearn my resistance to asking and accepting help from others. If you describe yourself as self-reliant (you know who you are), maybe you can join me taking the first step towards allowing others to help. The next time we are asked how we are doing, let’s make a choice to tell the truth.

Concert Connections

Dead & Company 2022

A group of people gathered together for the same reason…a concert. The one thing they all have in common is a connection to the group, ensemble, or artist they are all there to experience. If you have ever been to any live show or concert, you have experienced that feeling of connection and belonging. The experience unites us, if only for the length of the show.

There are many health and wellness benefits of attending a live show. Ethan Kross discusses the magic of gathering for shows in his book Chatter: The Voice in Our Head, Why it Matters, and How to Harness It. Kross explains that when we attend a live concert, we experience collective connectedness. He explains that concerts are beneficial for introverts and extroverts to experience a sense of connection. We attend separately but share a unique experience together. We crave and thrive on human connection, yet it is not always easy to attain, especially if you are shy or an introvert. I found this fascinating. Live shows deepen my sense of belonging and connection. It is easy to talk to strangers. The conversation generally flows without effort. Which band are you here to see? How many shows have you seen? What is your favorite song? The list goes on.

Beyond easy interaction with strangers, concerts are an incredible way for me and my husband to connect. I feel closer to him when we are at a show together. We do not share a lot of the same hobbies. He loves amateur radio (ham radio), astronomy, watching television, and off-roading. I enjoy dancing, reading, walking, and meditation. We do not have many overlapping interests. Concerts, movies, and camping are interests we share. Live music is at the top of our list for date nights. It increases our emotional connection to each other. We also get a break from the worry and responsibilities that are part of our daily life. A concert is a mini-vacation and reenergizing self-care.

Live events have been scarce over the past few years. There were opportunities to stream shows, but the energy just isn’t comparable. There is an energy that is present when we gather in person. The shared energy between the musicians and the audience is hard to describe. It is a magical experience. Sharing a concert experience together is beneficial to my relationship with my husband. It grounds us in the present. We are not thinking about the trash that needs to go out, work, bills, maintenance at home, dishes in the sink, or caring for Emily. We are immersed in the moment and our surroundings.

There are many compelling benefits to going to live music concerts. Here is a list of just a few:

  1. Reduces stress
  2. Boosts your mood
  3. Foster a feeling of togetherness 
  4. Improve your general sense of well-being
  5. Pain relief
  6. Meeting new people
  7. Connects us more deeply with humanity
  8. Dancing and singing are great exercises for the body and mind

As I was reading some of the benefits of music, it confirmed what I already knew. Attending a live concert reduces your stress because you get an opportunity to step out of the daily grind. We become immersed in the experience which releases our mind from worrying about things outside of the moment. We are present. It increases our joy, allows us to rest and recharge, and we are not focusing on things that may be creating stress in our lives. Concerts are the ultimate escape for our minds, body, and soul.

Pistol Annies
Keith Urban
Little Big Town

Going with the Flow

“I turn grass into wool”, said the sheep. “What is your superpower?” Gail Boenning asked this question in a recent 3musesmerge post. What a glorious question I thought. Her writing delights me and at the same time is educational and thought-provoking. It seems to be human nature to list the things we feel we are not good at. The “can’t do” list rolls from the tongue with ease. Telling others what we are good at is often difficult. I know for sure we all have at least one superpower, and I am willing to bet many more. 

If I was asked this question twenty-two years ago, I might have answered that my ability to manage and control things was my superpower. Oh, the wisdom that comes from age and raising a daughter with severe developmental disabilities. What Emily taught me is control is just an illusion. There are very few things we can control. We cannot predict our circumstances, but we can choose how we react and respond. 

Each parenting strategy I planned to use changed as Emily missed each milestone. What worked for other children did not work with her. All the books and manuals did not apply. The stories I had been told about parenting and raising children were useless. Throw all the What to Expect books out the window. Once these expectations were shattered and my life could no longer be compartmentalized and managed in a grid resembling a waffle, I developed new skills. My life was a big, messy bowl of spaghetti that didn’t fit in the waffle iron. I began to learn to adapt to the reality of my daily life and let go of the expectations. 

Over the years, things began to slowly change. I learned to let go of the illusion of control one situation at a time. Emily didn’t sleep through the night for years. It wasn’t until she began taking medications to aid in sleep that she (and I) slept through the night. Even with medication, a restful night’s sleep was never guaranteed. She is now in her twenties, and late-night shenanigans are still typical. Sleep deprivation is what first initiated my decision to release expectations. I gave up the expectation of sleeping through the night. I decided to start preparing as much as possible for the next day the night before. I did not depend on my ability to get everything ready in the morning, knowing I may be tired and less focused. I began to make a plan for the following day. I left white space on my calendar with nothing planned for things that might come up or for a power nap if required. 

Planning became a gift I gave myself each day. The more I planned and left the room to pivot, the smoother my days seemed to go. I was able to accomplish more and left space for the unexpected. My plans were an outline for my day, and if something changed, I could adapt. As I practiced flexibility, I became better at it. I built on the practice and figured out ways to add things to my schedule that bring me joy, calm, and comfort. In addition to work tasks, caregiving, and daily chores, I began scheduling self-care. I would include a 5-minute meditation, a 20-minute power nap, sending a card to a friend, time for a walk, reading a book, and anything else I thought would bring me joy or rest. 

Each time I practiced flexibility and releasing control, the more energy, time, and peace I experienced. I achieved more and didn’t let obstacles be a reason to conclude the day was shot to hell and give up. I found peace in accepting what each day would bring. I learned to pivot. I learned to adapt. A friend recently told me this is the process of beginning to flow like water. Each day is a river. Some days are calm and smooth. I am floating down the river in an inner tube sipping a cold beverage without spillage. On other days I am launched into a class 5 (and sometimes 6) rapid. My raft is being tossed about, and I am barely holding on. I can handle either because I have become a master at pivoting and adapting. These are just two of my superpowers. As I learn and grow, I will certainly develop and discover more.