Conversation for Change

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

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:

Reduces stress
Boosts your mood
Foster a feeling of togetherness
Improve your general sense of well-being
Pain relief
Meeting new people
Connects us more deeply with humanity
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.

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.

Grief and Anniversaries

Grief cannot always be predicted and calculated. I have mentioned before that it comes in cycles and often comes to visit when you least expect it. May has been a month where I am experiencing a heaviness in my heart. I have been feeling sad, angry, and anxious. I have not slept well either.

I discovered significant dates in May that bring up sadness for me. First, mom passed away seven years ago on May 12th. Time has lessened the grief, but it still comes. I read that this feeling is called an anniversary reaction. The date reminds you of a person that has been important in your life. It does not mean you have unprocessed grief.

Second, Mother’s Day is in May. This holiday is an emotional box of chocolates, and my family never knows what they are going to get. This year I was sad and lonely. It was a few days before my foot surgery, and I was in quarantine at home. Todd slept in and did not hear Emily or the dogs. I was up at 5 am caring for the pets and a cranky princess. I spent a good part of the day sitting with my feelings. My ideal day is my family showering me with love and then leaving me alone. It also reminds me that my mom is not here to spoil and shower with love.

Finally, May 31st is Todd’s birthday. Three years ago, Todd was hospitalized due to his depression on his birthday. As the anniversary approaches, the anger, sadness, and pain is still very fresh. When Todd was admitted, I realized I was in survival mode. I was figuring out how to care for Emily alone. I was juggling caregiving, work, insurance authorizations, finances. I remember being stressed and overwhelmed. I realized that I have unprocessed grief to address. Now I will begin the work that needs to be done and extend grace to myself in the meantime.

Note: For more information on grief cycles and anniversaries, please check out this great article from the Mayo clinic. It includes a list of emotions to expect when grief returns, along with some great tools and suggestions to use when it does.

Joy Does Not Mean Happy

I have not been happy these last two weeks. I expected that I would bounce back from foot surgery. I mean, they only cut my toe. It should heal in no time. I had an ablation five years ago. The doctor gave me enough pain medication for two weeks, and I was fine in 24 hours. I filled a prescription for 10 pain pills for this surgery, so I thought it would be painless and easy. My expectations based on the prescription quantity led to my logical conclusion. I was not mentally prepared for the pain and immobilization that followed.

The day before the surgery, I got a library card. I haven’t had an active card since the kids were toddlers. I was excited to start scheduling my recovery reading list. When I began to feel better and was able to read more, I began reading Atlas of the Heart by Brené Brown. I was able to score a Kindle version early but only had 7 days to read it. The book is basically an encyclopedia of emotions. With years of research and study Brown and her expert team identified 80 of the most common emotions.

I was particularly intrigued by her discussion of the subtle difference in various emotions. I loved the discussion of happiness and joy. I am fascinated and obsessed with the feeling of JOY. I even bought myself a ring that says choose joy. I have worn it for two years, rarely taking it off. I did have to remove it for surgery, and then I misplaced it. I was going to add about my distress over losing it, and then, my ring magically appeared in the bottom of my purse today as I was searching for chapstick. (That brought me a moment of happiness AND added to my joy.)

Since the surgery, I would not describe my mood as happy. Happiness is an outward emotion. It is fickle and is easily altered by things outside of our control. I thought I had lost my ring, had foot surgery, and I have been in pain. I have been restless, tired, and disappointed. Happiness has not been coming up on my wheel of emotions. Despite these circumstances, I never lost the feeling of joy. I mean, joy is an internal feeling. Joy endures hardship, trials, and loss. We pursue or experience happiness, but we choose joy.

I was in the Clubhouse Seeing Goodness a few days after my surgery. The topic was JOY. I shared the difficulties of my week and expressed that while I have not been happy, I am joyful. I was in bed with my feet elevated, listening to the birds outside. I was watching hummingbirds enjoy their sunset snack of honeysuckle. I could hear the chickens calling for their evening scratch. Todd was caring for Emily in the other room. Ben and Coco were by my side. I define joy as a choice. I may feel terrible but choose to remain joyful.

Joy is often described in religious terms as a confident assurance of God’s power and presence. It is about something bigger than ourselves. No matter what is in our MUG (Mother Nature, The Universe, or God), the more we step outside ourselves and look for the beauty and gifts around us, the more we feed and fuel our inner feeling of joy.

Discovery in Recovery

I was excited to finally have surgery on my right foot. My toe has been causing me pain for over a year. I was grateful to schedule at a time when Todd was able to take off work and help care for Emily. I was encouraged that the recovery was not as long as other procedures we have discussed over the past few years. I spent the last month preparing for the down time, or at least I thought I had prepared.

As I lay in bed with my foot propped above my heart, I am finding it difficult to write. It is also difficult to concentrate. I did not prepare for how limited my days would be with my foot elevated for 23 hours a day. I thought I would read and write, watch some shows, listen to music, rest and sleep. Well, it hasn’t exactly been the great respite I imagined. Recovery is time consuming and rest is not always restful. Does that even make sense?

I have slept a lot, but getting comfortable has been a challenge. I ended up taking some of the pain medication because, well, my foot hurt. This led to discomfort in other ways. It was not easy to stay in bed and request that Justin or Todd bring me water or food. I definitely do not enjoy waiting for others to take care of my needs. I dislike it very much. I wonder if Emily dislikes her dependence on others. The only life she knows is one where she relies on others to meet her needs and I grieve a different life she will never know.

As the house buzzes with business and tasks, I lay here. I hear Emily’s calls that I know well. Her sounds tell me she is bored, hungry, thirsty, or that Ben is pestering her. I am unable to respond to her requests. Asking Justin and Todd to do it is annoying to them. They tell me they are handling it and get irritated by my interference. I am so quick to meet Emily’s needs and take care of her and myself. I hate the feeling of helplessness. If I am out of bed, one of them is chastising me or reciting how many minutes I have been vertical.

We are five days into this new routine (hopefully only two to go) and I can tell the boys are tired. Justin went out with friends last night to get out of the house. Todd is snapping and short-tempered. Emily had an accident in her bed this morning and Todd is dealing with it. Right now he is bathing her and washing her bedding. Ben chewed up a brand new bath rug during all the other things going on. Todd is not handling all the chaos well. He is used to dealing with one thing at a time. His mind does not know how to handle all this stuff coming at him. I have empathy for him. I remember being like this. For years, I would get angrier and angrier as each circumstance piled on the other as if the universe was out to get me.

As things calm down, I decide to prop my foot up in the living room for a bit and talk with Todd. He is not receptive. He insists Emily is more difficult for him than she is for me. I remind him that a lot of how Emily responds has to do with his energy. I remind him that he used to tell me that all the time when I would lose my patience with Emily. I am not sure he gets it and I understand. We want to hold onto the stories we tell ourselves. I expressed my gratitude and empathy for everything Todd has done this week. I also express disappointment that I did the surgery. I am not sure it will improve my ability to walk. What if it was a waste of time and I have added stress to Todd for no reason? That was a lot to offload on Todd when he is already struggling. So then, I add guilt to the roller coaster of emotions swirling in my 60,000 thoughts a day. I know this is temporary and that I will be up and on my feet soon. It just cannot be soon enough.

This week has been hard. Being on the sidelines is uncomfortable and unfamiliar. I have had a front-row seat to the life I live each day, but not participating in it. I discovered that I don’t like being sidelined. As difficult as it is to care for Emily, I love it and I am good at it. I have also learned over the years what I need and how to meet my own needs. I am not a great patient. I don’t like relying on others for anything. I am fiercely independent. None of these characteristics are great when you are expected to lean into other people.

This week has shown me the growth I have made over the last several years, and it has also highlighted the work that is left to be done. Each experience is an opportunity to learn and grow. As I continue to heal and recover, I am discovering more about myself and the work ahead.

Clean Teeth and Kindness

As I take Emily to the restroom to begin her evening routine, I engage in my mental routine to prepare. My inner chatter commences. You can do hard things. You were made for this. You are a caregiving badass. Tonight will go well. You have enough energy left to do this. You are doing this because you love Emily. Some version of this talk comes out in my thought bubbles as the routine leads to the most dreaded task of the day: teeth brushing.

Now that Emily is in her cozy PJs and everything else is complete, I lay her on the floor. I put one leg over her left arm and one over her right. Justin is on one side holding an arm and leg down. Todd is on the other doing the same. I work to get the brush in her mouth and the battle of teeth brushing vs. Emily the crocodile begins. The one to two-minute ordeal seems to last for hours. She bites on the brush and thrashes her head. Most nights, we are lucky to get one quadrant clean to my satisfaction.

Over the years, the task has become harder, and what used to be a one-person task has become a 3-person task. There are nights when I have nothing left to give, and the task is ignored. This is accompanied by a minor tinge of guilt that grips my chest. I worry that her teeth are going to get cavities or she is in pain from a mouth issue and cannot tell us.

I was recently on the We Are Brave Together Facebook page and there was a post about teeth brushing. Our family is not special. For many unique families, it is a struggle, challenge, and sometimes leaves us feeling inadequate. Many children with severe developmental disabilities require someone else to brush and care for their teeth. Along with comfort and support for the parents battling the task, the feed included a plethora of tricks and tools used to get the job accomplished. We have used every device suggested, except for one. It was a U-shaped brush made out of food-grade silicone. I figured it was probably a waste of money but clicked on the Amazon link and bought it.

The next day a package arrived with the odd contraption and special foaming strawberry flavored goop that the manufacturer recommended. After Emily was showered, shampooed, and shined, we decided to try the new brush. The boys and I held her down, and to our surprise, it was easier to get into her mouth than expected. She could bite down all she wanted, and the brush still moved freely in her mouth. It vibrated and automatically shut off after the cleaning cycle. I just moved it left to right as it did the work. We were pretty sure it wasn’t doing much, but we continued to use it.

Last week Emily had her first dental visit since February 2020. A world pandemic, illness, and fears prevented me from scheduling an appointment. I called and left a message with Dr. Worden that I was concerned her teeth were in terrible shape after two years without having a professional dental cleaning. I explained brushing her teeth had become extremely difficult, and even with three adults working on the task, we were not very effective. I thought we were at a point where she might need sedation to clean her teeth. I was concerned she had cavities or gum issues.

Dr. Worden texted me the next day. He said he understood my concerns but suggested I make the appointment. We could give it a try. (That was in January!) I did not call the office to make an appointment. I procrastinated. I didn’t want to deal with it. I finally made the appointment in May. The appointment was scheduled two days after I called his office. I did not have much time to worry or dwell on the dread swirling in my mind.

Todd took time off that day for the appointment, and Justin left class early to go with us. Teeth brushing and dentist appointments are all-hands-on-deck affairs. When we arrived at Dr. Worden’s office, the staff was prepared and waiting for Emily. Todd and Justin transferred Emily to the dental chair. Two hygienists stood at Emily’s head, and two others were on the side to help Todd and Justin hold Emily down. I did not have to help! I was elated and I snapped a few photos as they prepared to get down to business. Emily proved me wrong. While she did fight and protest, she was no match for six adults focused on getting her teeth cleaned. There was two additional staff on standby to assist with tools and instruments. The cleaning was more successful than I could have imagined. Her teeth were clean, and the hygienist was able to get fluoride on them for the first time.

After the team cleaned her teeth, Dr. Worden examined her mouth as I held my breath. I was sure he would find gum disease or cavities. To my shock and surprise, her teeth looked great. Her gums were healthier than usual, and her teeth did not appear to have any issues that needed attention. What?! I was over the moon. I was thankful for the Facebook group that led me to a new tool. Our family dedication, along with the new toothbrush, seems to be aiding in a cleaner mouth and healthier gums.

We thanked the staff for giving up part of their lunch. We thanked them for their incredible care and attention. I was overcome with emotion as I witnessed their compassion. As the staff worked quickly and efficiently cleaning her teeth, they praised Emily. They encouraged Emily and comforted her. They cheered her on. It is tough to express my gratitude. Dr. Worden and his staff have always gone above and beyond to keep Emily’s rarely seen smile sparkling. The staff worked in synchrony to clean her teeth. They also exhibited kindness, compassion, and goodness. Thank you for seeing my daughter and giving her amazing care.

NOTE: When Emily was small, we used to take her to a dentist that would administer chloral hydrate before each cleaning to sedate her. We were not allowed in the room while they cleaned her teeth. The sedation impacted the rest of our day. She was not steady, and she was irritated and moody. The alternative would be to put her under general sedation every six months to clean her teeth. While this made cleaning convenient for the dentist and staff, it was hard on Emily (and me). I decided there had to be a better alternative. I discovered Dr. Worden from a parent at Justin’s elementary school.

I remember the first time we went to see Dr. Worden. He had a no-nonsense approach. He was confident he could clean Emily’s teeth without anesthesia. I warned him that Emily often gagged until she threw up and that she may try to bite him. He assured me that he could handle it. He added, “If she throws up on me, it won’t be the first time…today.” We laughed. Todd and I held Emily’s arms and legs down in the exam chair as he cleaned and inspected her teeth. She screamed. She kicked. She fussed. As soon as he finished the cleaning, she stopped fussing and was fine. She was not traumatized by the experience. No grogginess. No balance issues. No big deal. We had found a new dentist.

Dogs, Beards, Emily, a Wedding, and God

Looking at all the incredible photographs from this past weekend fills me with gratitude and joy. My favorite nephew (please do not tell the others), Collin got married. The wedding was in Santa Barbara. The weekend included the rehearsal dinner on Friday followed by an incredible cocktail party on the rooftop of the Hotel Californian. Saturday was the BIG day. A spectacular, Christ-centered service outside officiated by the fathers of the bride and groom. Both put their trust in their dads to perform the nuptials, and they did so flawlessly. From the sound of nature and the beautiful band singing praise songs, to the scenic view from our seats, it was magical.

Anyone that has a child/adult with disabilities knows that a weekend away requires planning and preparation. For our family, the planning for this weekend seemed next level, and at times, a mission impossible. You would think finding caregivers for Emily would be the most difficult of the tasks to check off the list. Our family is fortunate to have wonderful people in our lives that stepped up and helped to make sure her needs were met so we could attend Collin and Saylor’s wedding weekend. Emily’s care was coordinated between two amazing caregivers and friends that covered the weekend. I scheduled caregivers the moment I received the “save the date” invitation in the mail. This was not an event I was going to miss.

Todd and I with brother and sister-in-love

Getting my boys on board with a black-tie event proved a bit more challenging. Todd and Justin are jeans, tees, and Carhartt men. I am fairly certain Todd hasn’t seen the inside of a tuxedo since 1992 (the year both Todd and I, AND his brother and sister-in-love wed). Times have changed, but I will say tuxedos have pretty much stayed the same. Once they had absorbed the shock that tuxedos were required, I let them know they must also wear suits for the rehearsal dinner and cocktail party. That had them teetering on the edge of the cliff. They recovered until I brought up beard trimming. Remember Duck Dynasty? (Todd could be Phil and Si’s brother and Justin could be Willie and Jase’s cousin.) We scheduled beard and hair appointments to make sure they looked appropriate for the festivities. It definitely took more effort to get the men camera-ready than it took me (and they say women are high maintenance)! After sorting out the details and some shopping, the men were handled.

Now, the dogs! Really, what the heck to do with them? I discussed with Todd that I thought it would be too much to leave the caregivers with our disabled daughter, blind and deaf 16-year-old poodle, and the unpredictable (and possibly bi-polar) rescue dog. We decided the safest thing was to kennel Coco. At 16, she has never been kenneled. I found a bougie dog hotel that offered private suites. I got all the requirements in order and handed over the credit card. We relegated Ben to the back half of the house when we left Friday afternoon. He would have to stay there until the second caregiver arrived around 8 or 9 pm. He did not seem to take to the first shift caregiver. We found out later that he tried to eat Sommer that evening when she went to give him free rein to roam. His fight response only lasted a short time and by Sunday morning they were friends, for now.

The wonderful village kept everyone alive and safe. The dogs survived, but they seemed slightly traumatized by the weekend, especially Coco. Emily was not feeling great on Saturday and Sommer had some extra work added. It is not fun to deal with Emily when she has digestive issues, so I am extra grateful. Sommer was kind enough to throw the fish some flake and give the chickens some scratch. (Collin was shocked to hear that Guacamole is alive 12 years after he suggested I get rid of him. Lucky for Guacamole, I have his back.) Sommer made sure Emily was showered, shampooed, and shined. She even organized Emily’s shirt drawers. I know Emily got the best care while we were gone. The dogs will recover, and the boys looked terrific.

I am having trouble describing the beauty of this weekend. I cannot remember the last time I experienced so much love in one place. It was a weekend of warmth, love, family, and fellowship. It was like a delicious cup of coffee on the deck watching the sun come up over the horizon. It was like the sun setting over the ocean in January. It was perfect. It was beautiful. It was painted in perfection and love. This weekend I felt the love of my family and friends, but I also felt God’s love. While I know God is always with me, sometimes I miss His whispers and forget to see the beauty He surrounds me in, but this weekend his presence was palpable in the sounds, in the setting, and in my soul.

Note: I wanted to include as many photographs as possible so please cut me some slack on placement and text. I know beards, dog, and bodily fluid text is not usually sandwiched between stunning wedding photos, but I roll a little differently (#adultingdifferently). Also, a special thank you to Tarah Reynolds at Salon Glam for always keeping our hair (and beards) on point when needed!

Thank you Guy and Stephanie for making sure our weekend was easy and wonderful. Thank you for making all the arrangements: from hotel rooms to transportation to events. We appreciate the love and support you have given us through the years. I could not imagine the Short Life without you and the kids in it. You have been my rock through some tough seasons. Thank you!

It’s Just a Tea Towel

I received snail mail this week that filled me with delight. I love to get things in the mail. I am not talking about the countless Amazon boxes, but handwritten notes or cards. Joy mail makes my heart sing. The package was from Zatuilla. She is a friend I have made through the Pause Breathe Reflect community.

Hmm, I wonder how she got my address? I sure wish I had the address for everyone in that community. No, I am not a crazy stalker. Sometimes, I just want to send a hand-written note or card. It seems more personal than a text or email. That makes me old-fashioned and quite possibly a relic. I mean, I do write in cursive.

Anyway, I open up the package and I become giddy with joy and excitement. Before I even read the included postcard, I was tearing up. Happy, happy tears.

My son, who loves to bring me back to Earth, says, “Mom, it is just a dishtowel. Why are you so excited?”

“First, it is not JUST a dish towel. It is called a tea towel and it is from Australia.”

He looked at me perplexed. Shook his head, and retreated to his room (and my office). Yes, we have small house issues. Ever seen the AirBNB commercial about our houses becoming gyms, conference rooms, yoga studios, restaurants, and a host of other things. Well, it appears a world pandemic gifted our home with all these extra services, but the 1,000 square foot floor plan was not expanded to accommodate (nor was there an increase in staff). As I often do—I digress.

Zatuilla recently lost both of her parents. They died unexpectedly within a few days of each other. A beautiful testament to their love for one another and also a tremendous loss for Zatuilla. Losing a parent is difficult. I have lost my parents but there were 30 years between each loss. Time to process one loss before experiencing another. Zatuilla has seemed to process her loss with grace, grit, and tenacity.

As she was sorting through her parent’s belongings, she found an unused dish towel from Australia that someone must have given her parents. She thought I might like it. You see, a few months ago we had a PBR room where everyone changed their profile picture to a place they love or would like to go. I changed mine to the Sydney Opera House in Australia. I have always wanted to go to Australia since I was a teenager. I had a pen-pal in Australia and became obsessed with visiting there one day. I have planned the trip in my mind many times. I shared in the room that Todd and I have talked about visiting Australia—someday. Someday when we have more money. Someday when we raise kids and become empty nesters. The birth of our daughter, Emily, altered our plans for the future. Someday looks a little different than it did before she was born. Emily’s significant disabilities mean she will always depend on others for her care. Todd and I plan to care for Emily in our home as long as we able. We will never be empty nesters, and this dream may not ever happen.

The postcard and towel evoked joy. It is a gift to be seen and heard. Zatuilla heard me that day. She remembered my desire to visit Australia. Her gift filled me with gratitude. My son was not wrong in his observation. It is just a novelty towel that one may get at a souvenir shop or airport, but it is the thought behind the gift that means the world to me.

Her gift also brought up memories of a dear friend in high school. Every summer my friend traveled the world with his grandma on wonderful adventures. For many years, these adventures included Australia. He knew about my love and obsession with all things from Down Under. He would return with magazines, trinkets, postcards, and even Vegemite.

Amid the emotional task of going through her parent’s belongings, Zatuilla thought of me. A marvelous act of kindness magnified by the joy it rekindled in old memories that resurfaced. It reminded me of hearing a song that takes you back to a different place and time. The tea towel was a song.

Days like today remind me there is so much kindness and goodness all around us. The challenge each day is to recognize it. Acknowledge the gifts that come our way each day. The gift may come in a song we hear on the radio, a smile from a stranger, someone holding the door for you, and sometimes in a simple tea towel tucked away in a drawer.

Disability is Diversity

I was honored when Jessica Patay invited me to be part of this year’s We Are Brave Together photo session. I started working with the organization last fall. They provide support, low-cost retreats, and resources for moms of children with unique needs. I believe in their mission. If you know me, then you also know I am passionate about caregivers taking care of themselves. This past weekend while relaxing in Vegas (I practice what I teach), I received a link to the photos from the shoot. Brooke Tobin Photography did an incredible job capturing not only the vision and mission of We Are Brave Together, but the diversity.

As I looked through the images, I thought, these look like perfect stock photos. Some of you may not know this, but I have worked at a graphic design firm for over 17 years. Actually over twenty, but I took a little hiatus from the workforce when we learned Emily had significant delays. It was tough to work and get her to appointments and therapies. Anyway, that is a story for another day. I am the Accounting Manager at JDA, Inc. and I handle HR, payables, receivables, etc. I do all things accounting and nothing creative. My creative skills are limited to Canva, and even then, my son usually has to save me. Although I work on the admin side of the company, I have heard many conversations with clients about what they want (and what they don’t want) on projects our company completes. Clients often request campaigns that include people of different shapes, sizes, and skin tones. They want diversity represented in what is presented. The women in We Are Brave Together are diverse. We are all moms to children with disabilities.

The Oxford Language site defines disability as a physical or mental condition that limits a person’s movements, senses, or activities. Having a disability does not discriminate. Disability impacts people of all races, religions, geographic regions, and economic statuses. According to a recent article in Forbes Magazine, 4 Reasons Why Businesses Should Care About Disability Issues, 61 million Americans have a disability. About 19% of the population has a mental or physical condition that limits them in some capacity.

For the past several years, diversity has been highlighted in the news, the media, and social media platforms. I personally believe that diversity is paramount. We learn and grow when we open ourselves to things that are different from us. We can learn from those whose religion, culture, and beliefs differ from ours. We can also learn from those living with disabilities. When we discuss diversity, we must include the disabled population. Omitting the disabled in the diversity conversation is a mistake. There is a long line of discrimination against those with disabilities. Until recently, children with severe disabilities would be put in institutions and removed from society. In many parts of the world, they still are. What a tragedy.

As we challenge our biases, let’s include a conversation about bias toward those with disabilities. Sometimes, we are scared of things we do not understand. Other times we do not see a need to make changes to accommodate or make our world accessible to a small percentage of the population. Often people with severe disabilities are discounted or discarded as if they have nothing to contribute. The issues are complicated and complex. I do not pretend to have the answers, and I have only my perspective to bring to the table. I firmly believe that if we do not adapt our world to include those with disabilities, we all lose. Emily may not be able to contribute by discovering a cure for cancer or ending our dependence on fossil fuels, but she can teach us to be more tolerant. She can show the world what it is to love unconditionally. She can show others how to slow down and be present. Every human has value and worth. Every person has something to offer. If the goal is diversity and inclusion, that must include the disabled community. In the words of my friend Effie Parks, “Disability is Diversity”.