Clean Teeth and Kindness

Dental Cleaning Commences

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.

Some of Dr. Worden’s AMAZING Staff
Dr. Worden, DDS

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

Couple Communion with Family

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.

stunning roses everywhere
my niece Kinzie
Perfect setting for a wedding

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.

Mr. and Mrs. Collin and Saylor Short
Before the ceremony

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.

God’s Beauty All Around

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

Photo by Brook Tobin Photography

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”.

What? That’s Not a Disability

My Disabled Daughter, Emily and Ben

Don’t do it. Don’t do it. My mind recalls a reel on Instagram, “Girl, don’t do it!” You don’t share your thoughts on these things. It is better to let it go. If I don’t say something about this, who will? What are you afraid of? Being controversial? Making someone upset? Remember that thing we heard: “If you’re not pissing someone off, you aren’t creating change.” I may have screwed that up, but doesn’t that make it MY quote now? You have the authority to speak on this. As the mom and primary caregiver of a disabled person, you have credibility. Advocating for people with disabilities is something you believe in. You do not need validation or permission. If you make someone mad, that is not your problem. You are only stating your opinion. Everyone has opinions and we don’t always agree. Isn’t that part of what makes the world awesome? Diversity in our thoughts is amazing. Okay, let’s do it.

Isn’t the crazy inside my head awesome? I wasn’t planning to write about this topic today (or ever). I was reading an article about diversity for a post (now next week’s post) when I saw a headline that captured my attention. I immediately clicked on the link and began to read. The further I got, the angrier I became. I wanted to respond to the article and add my two cents. As I finished the article, I received a text from a friend sharing a link to a YouTube video, So, you want to be a writer?  It was written by Charles Bukowski. It was exactly what I needed to hear. In it, he says, “unless it comes out of your soul like a rocket, don’t do it.” Well, thank you Charles Bukowski for the push. My thoughts began to emerge. They were coming out faster than I could get them onto paper. Words shooting out of me like a rocket!

The title of the article in Forbes Magazine: Ricky Gervais’ Dismissive Alopecia Remarks Sparks Debate on Disability Definition by Gus Alexiou stirred up strong emotions. As I read this article, I began to fume inside. I rarely get angered by anything outside my control. Maybe it was the topic of disability. Possibly it struck me because of the fierce love and protectiveness I hold for my disabled daughter. I invite you to read the article for yourself and form your own opinions. The article discussed comments Ricky Gervais made about the Will Smith and Chris Rock incident at the Oscars. (I would have never known the Oscars had happened without all the drama that followed.) Ricky Gervais called out people that said Chris Rock was making fun of Jaden Smith’s disability. WHAT!?! Disability? What disability? Oh, alopecia? Oh, sorry Ms. Smith and those toting that thought, that is a hard NO. Alopecia is a terrible condition. I have empathy for her and others that suffer from it, but to call it a disability is a joke. On that, and maybe only that, Ricky Gervais and I agree. It does not meet the legal definition of a disability and it does not meet my personal definition of a disability. It is a figurative slap in the face to millions of Americans that live with chronic illness, rare disorders, and physical and cognitive issues that significantly impact their lives daily. 

This is how the ADA website defines disability: An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.

Apparently, there are people out there that perceive alopecia as an impairment and I take issue with that. Alopecia does not substantially limit Jaden Smith’s life. She can go to work every day. She is capable of buying, preparing, and consuming her meals without help. She doesn’t require the assistance of other people to perform daily tasks for her. She has the cognitive ability to make choices and decisions. Ms. Smith can live her life without outside assistance or help. It may impact her self-esteem, but newsflash, we all suffer from things that may dent or bruise our self-esteem. Alopecia is a condition and not a disability.

Can you tell I am riled up? I do not like labels. I was angered when my son was experiencing some anxiety and depression in his teen years and doctors were quick to slap a label on him. Recently I have experienced health issues and I refuse to accept the label they want to stick on me. Labels have repercussions. Generally, labels do not help us. Except, when they do. Emily has a disability that significantly impacts her ability to care for herself. She cannot hold a job or communicate her needs. She is unable to prepare her own food or manage her hygiene. She cannot live independently. She is dependent on others to support her physically and financially. Being labeled as disabled allows her access to services and programs to assist her financially and assist in her care. If we broaden the definition of disability to a point where anyone and everyone can find something to call a disability, it diminishes the term. It marginalizes Emily and could impact her ability to access services that are vital to Emily’s care.

Gus Alexiou stated is perfectly in his article, “An additional inherent danger in having too broad a definition of disability is that the term may end up becoming trivialized by incorporating medical conditions that are usually viewed as more minor, or primarily cosmetic in nature, with less pronounced functional deficits. This could lead to a more complacent attitude across wider society towards those with more serious illnesses and impairments who are in genuine need of special consideration and tailored assistance.”

I don’t want the term disability to be watered down. I do not want my daughter’s significant mental and physical delays to be trivialized. I am not cold-hearted or callous to those that suffer from alopecia and any other condition. I sometimes get breakouts of eczema. While these breakouts can be uncomfortable and evoke insecurity in me, I am not disabled. I have a condition. A condition by itself is not a disability. I want the net of disability to be wide enough to allow those that need supportive services to get them, but not so wide that there are not enough resources to provide to those that are vulnerable and dependent on them. Calling alopecia, eczema, and other conditions a disability can create a slippery slope.

R&R Vegas Style

I used to run myself ragged trying to do everything by myself. Running on empty and in a chronic state of overwhelm. I didn’t know how to ask for help. I believed it was not only my job to care for my children exclusively but my duty. No one could do it like me. My home was organized, and nothing was ever out of place. I cooked, cleaned, and cared for everyone. Everyone except myself. I remember Sunday mornings, I would get up early and get the family ready for church. I would make sure everyone was showered and shined. The family was polished and primed. I, on the other hand, was a mess. I went to church without taking a shower or putting on make-up, and nine times out of ten, I had spit-up or food somewhere on my clothing. I was run-down and resentful.

This Sunday, I am by a pool at the Red Rock Resort spa. I am alone with my thoughts. I am surrounded by the sound of relaxing music, water flowing, and birds singing in beautiful harmony. It took me many years, but I have learned the value of taking time for myself. The opportunities I take to do things that bring me joy make me a better caregiver, wife, and mother. They fill my cup and my heart with gratitude.

Venetian by Tomie Skramstad
Photo by Tomie Skramstad

I traveled to Vegas for the weekend to spend time with three women who have been with me on my self-love journey for the last two years. We met in an online accountability group. All of us training for a run in Nashville in May of 2020. Well, you probably predicted how that went. The run never happened, but the friendship we built carried us through the last two tumultuous years. Having the four of us in one place, in person, for an extended period of time has been magical. We have shared laughter, tears, and maybe bickered once or twice like old friends do. It has been a pleasure to explore the city with them. The icing on the cake was the only person I had to take care of was me. I have enjoyed a reprieve from changing diapers. Preparing food. Listening to Emily’s music. Watching her shows (The Wiggles, duh). Getting a break from providing care for Emily on self-care Sunday. This weekend, self-care Sunday is about me.

Love @ The Mirage by Tomie Skramstad

Today I am indulging in a long overdue massage. I am enjoying all the amenities the spa has to offer. I will drink what I want and eat what I want. I can write without the sounds of Casa de Chaos in the background. What an incredible gift for me. Letting go and releasing control is freeing. Taking time for myself makes me better. I know this. I probably knew it years ago, but I never asked for help. I never gave myself permission to do things that were important and exciting to me.

My boys are at home caring for Emily, Coco, Ben, the chickens, and hopefully, they are throwing the fish some flake. They are definitely doing things differently than me. I am sure Emily is not happy that Dad does not blast Lizzo or Kendrick Lamar while she bathes. I bet she misses the songs I make up as I dance around the house being silly. Dad has his own way of caring for Emily. And she probably loves that Dad will sit on the floor with her and protect her from Ben stealing her toys. Todd will play ball with Emily and feed her food that I do not give her. Todd will take her outside and let her watch The Wiggles in his garage as he tinkers on something or another. Justin will watch YouTube in the living room and keep her company. He will take her on a Starbucks run. Dad will not subject her to nail trimming and other “torturous” acts of self-care that mom puts her through, and Emily is definitely glad about that.

Red Rock Canyon by Tomie Skramstad

I have relished this time to connect with girlfriends while Emily is in the care of her dad and brother. I don’t feel guilty about choosing to do something for myself. It has been a wonderful gift. My wish is that every caregiver gives themselves permission to relax. Find a way to create space just for them without guilt or fear. Seize the opportunity to receive respite. It will help rejuvenate the mind, body, and soul.

Note: One of the women I met in person for the first time, Tomie Skramstad, is an amazing photographer. I wanted to include every photo she took. I am blessed to have incredible, talented, smart, and amazing women that I admire and love to learn from.

Anger With a Side of Guilt

Todd woke up this morning and could not put weight on his left foot. He has worked a lot of extra hours this past week and was on his feet more than usual. He emerged from the bedroom with a boot on his foot. He proceeded to tell me that Emily had an accident in her bed. Well, he is in a boot and not able to help, so off I went to handle it. I would love to say that I proceeded with gratitude and joy, but I did not. As much as I loathe the word trigger, it is the only word that seems to describe what happened. When Todd walked out of the bedroom in that damned walking boot, I was overcome with anger. I tried unsuccessfully to suppress it, but it would not be silenced.

In 2018, Todd and I took a trip to Nashville to celebrate my 50th birthday and our 26th anniversary. I was so excited about this trip. I rented an affordable and lovely Airbnb just outside of Nashville. I planned all the details and was looking forward to it for months. We had tickets to go to the Opry and museums. I couldn’t wait to see some bands at the bars on lower Broadway. I made arrangements for Emily’s care. One of Emily’s favorite humans agreed to stay at our house for 8 days with Emily. Angelique agreed to care for Emily and the dogs. Every detail was planned and I was excited. They say planning a vacation is a great way to boost your mood and increase your joy. It definitely did that for me. 

A few months prior to the trip, Todd seemed to be struggling. His moods were unpredictable and he was experiencing some anxiety. He was under a lot of pressure at work and did not seem to be managing it well. I started getting nervous about the trip. I asked if he would rather I go with someone else. Todd insisted he was fine and wanted to go. I believed him and we continued with our plans. On the way to the airport, I could tell he was agitated. He doesn’t love driving with his dad and he was vocal about this as his dad drove us to the airport. I knew then we had a bumpy trip ahead of us. Todd’s mood swings were up and down. At one point on the trip, he asked me to take him directly to the airport. He wanted to go back home. This was on our anniversary and we had plans to go to Graceland. I convinced him to stay. I was probably in denial about how “off” he was.

Our anniversary was on the 6th and we were scheduled to fly home on the 12th. We created a lot of amazing memories on that trip. Luke Bryan performed a free concert on lower Broadway. Todd made sure I was in the front row. We took a tour of Sun Records which was incredible. We feasted on some amazing cuisine. One of the highlights was seeing Lee Greenwood perform Proud to Be an American live at the Grand Ole Opry. While the highs on the trip were wonderful, the lows were difficult. They extinguished some of the joy of the experience. Living with someone who struggles with anxiety and depression can often be a roller coaster ride and I am not a fan of thrill rides. I have kept most of the details of that trip to myself, but almost everyone knows how it ended.

A few hours before our flight, we decided to walk around Centennial Park. I wanted to see the replica of The Parthenon. We walked to the top of The Parthenon. As I struggled to walk down the tall concrete steps, Todd decided to bypass the stairs. He jumped from the top. It was not a choice made by someone in a stable place. Before he landed on the grass below, I knew he was injured. The trip went from bad to worse at that moment. He was in terrible pain and unable to walk. The next couple of hours consisted of finding crutches and deciding to go to the hospital there or wait until we got home. We made the decision to take our scheduled flight and deal with the foot when we arrived home. I had to drive, carry all the luggage, and handle every aspect of getting us home. He was now angry and in pain. I have no idea what else was swirling in his brain, but it was not pleasant to be around him. We arrived home after dark and asked the caregiver to stay longer while we went to the emergency room. Todd had broken his heel and was in a cast and boot for weeks.

That was the beginning of a very difficult season in our marriage. One that I do not like to revisit. We have come a long way over the past few years. However, when Todd walked out in the boot this morning, it triggered something in me that I did not realize was still there. A buried surge of anger emerged that I have been unable to shake it today. Todd’s story is not mine to tell and I make every effort to honor that. Most of the time I do, but on days like today, I just needed to share this. When someone you love goes through physical or mental illness, it doesn’t just impact their life. It also affects the people that love them. 

I know my emotions are valid and I have learned to accept my emotions —the positive and the negative. Today I was angry and resentful. No matter how hard I tried to write about something else, this is the story that spilled out of me. I love my husband and I am not angry with him. I am angry that an invisible illness has a way of creeping into our lives and not always with great timing. It has been an uninvited guest in our marriage off and on for years. I am angry that I do not feel I can share freely without guilt coming along for the ride. Guilt is side dish that enjoys traveling with my anger. Emotions are temporary and anger will leave and take guilt with it. Another emotion will take its place until anger returns to visit, when I least expect it.

Curiosity to Connection

Have you ever been drawn to someone? There is something about their energy that is attracting you to them. I am taking a course that meets via Zoom on Saturday mornings. The first week I logged in, I was filled with nervous excitement. As I stared at the Brady Bunch squares, I was drawn to one of the participants. She was soft-spoken, and her demeanor was reserved. Her mannerisms displayed a subtle coolness. Our personalities seemed very different. I am quick to jump into the conversation, and I generally say what is on my mind without thinking or filtering. (It is a blessing and a curse.) This woman, on the other hand, was observant. She took a pause before speaking. The thoughts she did express were magical and complex. Wow, I think I may have a crush. The words of Little Big Town’s Girl Crush begin to play in my head. I was captivated by her ability to quietly observe and then with precise timing drop words of wisdom. This woman had qualities I wanted to possess. I had to meet her and get to know more about her. 

As the class concluded, I discovered she was an author. She has three published books. Curious about her writing, I opened my Kindle and downloaded Flourishing Fiction: Possibilities from A to Z by Gail Boenning. As I began reading, my fascination grew.  Gail writes with passion, curiosity, and wonder. Her short essays were a delightful surprise. This isn’t the type of writing I am usually drawn to. Typically, I vacillate between self-development books that teach me something and contemporary fiction that entertains me. Her writing was opening my mind to possibility and wonder. It evoked my imagination. It sparked a desire in me to write something fun, creative, and thought-provoking. 

This past year, I discovered joy in writing. The process of writing a weekly blog has brought me pleasure. An unexpected surprise came from the weekly task. I mostly write about things going on in our home. My struggles and triumphs in my unique world raising and caring for a child with disabilities. I write about my truth, challenges, discoveries. The gratitude in the journey and lessons learned. Sharing techniques I practice to maintain my calm in the chaos and stay mostly Zen in the zoo. Writing has been a useful tool for expressing my thoughts about caregiving and giving others a little insight into my not-so-typical life.

After reading Gail’s book in one sitting, I went to Instagram to see if she had an account. She did, and I immediately followed her. As I absorbed her posts, I was drawn to the characters she has created. She calls them her muses. She posted a quote from one of her books, and I commented on it. I had the urge to send Gail a direct message and request a phone conversation or meet up. I allowed my nerves to stop me. My mind provided a plethora of reasons not to reach out: I am sure she is a very busy woman. Writing books takes time and concentration. I bet she has people that set up her appointments. She is busy creating beautiful essays that are captivating the world. I am just a caregiver who writes a blog. Oh, the cruel inner chatter. I chose to crawl back into my shell. 

The beautiful thing is, she reached out to me! She asked to set up a Zoom call to chat. This is amazing, I thought.  I was over the moon. Then I thought, I wonder why she wants to talk to me? I bet she is selling something. Maybe she is starting a course or coaching thing and wants me to join. She wouldn’t just want to get to know me. I kicked around these thoughts in my head until we met on Tuesday. Like a child on Christmas morning, I sat in front of my computer waiting for 6 am to arrive. I clicked on the meeting link and suddenly we were face-to-face. As we broke the ice with basic information about each other, something happened. I realized we were not all that different. We had a lot in common. Our energies, though each unique, fit well together. It felt like I was chatting with a life-long friend over coffee. We committed to another call. 

Since that call, life has thrown a few curve balls our way. Honestly, mostly Gail’s way. I consider myself strong, tough, and resilient but watching her navigate her challenges with humor and grace is inspiring. She shares a little piece of her experience each day through the eyes of her muses. Each morning when I awake, I anticipate the moment I will be able to sit down and drink in her writing. It is a wonderful experience to read her journey through the voices of her endearing muses. I get to laugh, cry, and celebrate with them. 

I believe things happen for a reason, and meeting Gail is no exception. In a short time, she has helped me learn more about myself. We text throughout the week and meet on Zoom weekly to connect. I am challenging myself to explore more and write more. It is exciting to anticipate where my writing and our friendship will take us. While our destination is TBD, I do know that since our paths have crossed, my joy has increased. Isn’t that a wonderful gift to receive?

Have you ever considered that whatever comes your way most likely has a relationship with what you’re putting out? – Gail Boenning, Wandering Words A Walk from A to Z

Time Lies

Photo by Tima Miroshnichenko

It’s only an hour, I thought. How can an hour be so disruptive? I was on a Zoom call with Bobby Kountz this weekend and he was discussing Timelines and said Time “lies”. He was discussing how we often take time for granted. We postpone things until something happens or changes. We tend to kick the can down the road:

  • Someday I will learn to (dance, paint, write, sing, ___).
  • I will work out tomorrow.
  • When the kids grow up, we will get new furniture.
  • When I lose weight, I will go to the beach with my kids.
  • When we have more money, we can take a vacation.
  • I will start eating better on Monday. I don’t want to start on the weekend.
  • After I (know, learn, do) more, I will ______.

You get the idea. What I heard when he said, “time lies” is: Daylight Saving (DST) is coming!

There are usually 24 hours in a day, but today there are only 23. You can argue with me about my perception. My husband enjoys challenging my perspective with facts, science, and logic. I do not care if anyone chooses to challenge my thinking because my truth is I am losing an hour this weekend. It is one less hour to prepare for the week. One less hour before I go back to work and juggle working from home with caring for my family. I know that eventually, we get the hour back, but I live in the now. For now, we lose an hour. I have less time to accomplish the same tasks.

While change is hard for me to process, it is more difficult for Emily. Her developmental and intellectual disabilities make changes in routine more challenging. Tomorrow, 6:30 am will come an hour earlier. The sun will barely be making an appearance, and Emily’s rhythm will be out of sync. We maintain a regulated schedule. This allows Emily to anticipate what is coming next. It is based on consistent repetition, not her thought process, which is limited due to cognitive delays. Emily’s mind does not understand it is time to get up earlier because the clock has changed. Her body is conditioned to her current routine and I anticipate it being a challenging morning. I can put her to bed earlier (when the sun is still up), but she will not adjust in a single night.

It takes Emily time to wake up. Sometimes her brain and body do not communicate with each other. There is a disconnect in the communication and it seems to be more pronounced first thing in the morning. I take time to massage her feet, legs, and hips to “wake them up”. She also has low muscle tone. I do not request that she springs out of bed on any day. Now I am expecting her to engage earlier than her body is used to. It sounds like no big deal. We all do it. The first day is usually not as easy as subsequent days. While that is also true for Emily, it will take her longer to process the new expectations.

I am just dreading the first week of the new normal. If it were up to me, I would keep the time the same year-round. I recently read that DST time started as a federal mandate during WWI. DST ended after the war. It was reinstated during WWII, but this time it was not revoked at the end of that war. Artificially-lighted homes were still a novelty in the 1940s. It was very expensive. It was thought that by giving Americans an extra hour at the end of the day, they would be less reliant on “artificial light” and save money. I don’t suspect the culture at the time was concerned about the impact on those that are disabled and unable to understand or adapt to it. Maybe as we grow and learn more, the benefits of keeping time the same year-round will be adopted again. I know my chickens follow the sunrise and sunset. They are not swayed by the time on a clock, but I digress. Since I am not one to argue with reality, I will end my post here. With fewer hours in my day to prepare and play, I will keep this short and sweet.

The Dog I Never Knew I Needed

Our dog, Lucky, was diagnosed with lymphoma about the same time I started my weekly blog post. Lucky was taking steroids and other medications to reduce the size of his lymph nodes and provide him comfort. Some days he was full of energy. There would be a pep in his step. The medications extended his time with us by 3 months. Our family cherished that extra time. We showered him with love and all the treats his heart desired. He had the full run of the house and let me be perfectly honest, the rules did not apply to him. 

The week after Lucky passed, I shared how he became part of our family. He left an imprint on my heart that will last forever. Last week was the one year anniversary of his passing. I decided to share this post again in honor of my faithful and loyal friend. Well, I changed it a bit, but my love and gratitude for Lucky remain intact:

One afternoon, I got a call from Todd. He told me he was bringing a guest home for dinner. This brought on a mini panic attack. Our house was not “company ready”, and I didn’t have anything prepared to serve for dinner. Todd told me not to worry about anything. When Todd arrived home that night, he brought a Pitbull puppy along with him. Todd also unloaded a dog crate filled with all the things a puppy needs. He also handed me the receipt for a hefty vet bill. I may have lost my cool. (I did not have thought-work back in the day.) I could not believe he would bring a Pitbull to our home. Lucky, as he called him, had been hit by a car on the streets of South Los Angeles. Todd said he could not leave him there. He scooped Lucky up and took him to the vet for assessment. Lucky was very thin and had open wounds on his back. The injuries were sustained when he was hit by the car. He was lucky to be alive, get medical care, and have Todd bring him home.

My mind went straight to doom and gloom. I was already caring for a puppy, Coco. We also had a Red-tail boa constrictor. Oh, and two young children. This is crazy, I thought. I told Todd, “You have to choose between the snake and the Pitbull. I will not have two things that can eat my children in this house!” Pitbulls are not often painted in a good light, and most stories I heard were not good. Lucky had already stolen Todd’s heart in a way that the snake never would. The next day, Todd went to a pet store with the snake and got her re-homed. I was so happy. I never liked having a snake in the house. YES! I might like this dog after all.

The first year was tough. I was concerned about Emily being safe. Emily does not walk and gets around by crawling on the floor. I worried Lucky may see her as a threat and harm her. I also had concerns about Lucky hurting Coco. Both were concerns that never came to pass. Lucky, a gentle giant, quickly learned that Coco was the boss in this house. She was the Alpha, and she let him know. Over the years, she took a chunk out of each of his ears. Not once, but twice. It was a bloody mess both times, but Lucky never fought back. He was never aggressive with any of us. He was always gentle and loving.

For 14 years, Lucky added joy and love to our home. He was never a one-person dog but loved being around everyone in his pack, even Coco. Lucky enjoyed his bath and would climb into the tub for me without any resistance. He was not a fan of being alone and let everyone know. Separation from us, even if only by a door, would upset him. If none of us were home by sunset, Lucky would cry until we arrived. That boy was a big, sensitive baby. He had a gift for reading my emotions. If he thought I was down, he would stay close to me. If anyone in the house raised their voice, he would become protective. Lucky gave me comfort and support. I felt safe and secure when he was with me. He supported me emotionally during a difficult season in my life. I am full of gratitude that he was there for me. You see, it is me and not him, that was the lucky one.

In December 2020, Lucky was diagnosed with lymphoma. Lucky took his last breath on February 28, 2021. He was at home and surrounded by his pack. It has been one year since he passed, and I still miss him tremendously. I always say, “Lucky was the dog I never knew I needed.” Thankfully, God knew differently.