Conversation for Change

What? That’s Not a Disability

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.

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.

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.

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

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.

Sorting the Pieces

Imagine a large granite table with four different puzzles on it. Each is 1,000 pieces, and every puzzle is unique. Your mission, should you choose to accept, is to complete the puzzles. There is ample time to finish the task, and you enjoy solving puzzles. You accept the challenge with excitement and enthusiasm.

As you sit down to get started, you realize something is not quite right. There are four puzzles, but there is only one box containing puzzle pieces. Ah, the catch. All the pieces to each puzzle are in the same box. There is only one box of pieces! How the heck is this going to work? You keep pulling out pieces, but you cannot figure it out. This seems impossible, and this is how I have been describing the past two weeks.

Todd and I want to camp with Emily. We want to utilize and enjoy the trailer we purchased last year. Our goal is to camp more as a family. Emily thrives when we are camping. She loves watching The Wiggles in the trailer. Her bed is cozy, comfortable, and most importantly, mom and dad are close to her at all times. The problem is we are having trouble lifting Emily into Todd’s truck. Getting her out of the truck is manageable, but loading her into the truck is a challenge. It is also something that cannot be done safely. We have been researching options to modify his truck. The best option would be to add an auto-access seat similar to the one in my Mercedes. (Shhh, we know my car is a Toyota Sienna van, but she doesn’t.)

Todd and I got an estimate to get the seat installed. This was easier to get than we thought it would be. The price, on the other hand, is a tough pill to swallow. We are working to get assistance with funding the seat. I was given a list of letters, records, and assessments that must be completed. I have spent hours working to get a denial of coverage letter from our medical insurance. I need medical records from each of Emily’s doctors and specialists. Emily must have a nurse evaluation through our regional center. The adaptation is not cheap, and due diligence must be done. I understand that. The main issue or obstacle is Emily’s new caseworker. While nice, he doesn’t seem to have a clue about what he is doing. He is new to this job and it shows. I am working on being patient, but patience doesn’t come naturally to me.

Emily will also age out of public school in June. Well, actually in August, but we have to find out if the district will allow her to attend ESY (Extended School Year), aka summer school. We must complete her EXIT IEP, and find an adult daycare program. I presumed we would just continue at AbilityFirst and did not think about the process. Her caseworker, the new and inexperienced one, gave me some options for three adult daycare programs. AbilityFirst was not on the list. My heart sank a bit. I began researching the choices provided. I made it clear to the caseworker that we wanted AbilityFirst as an option.

One of the programs is permanently closed. Shouldn’t he know this? The other two programs are for medically fragile adults. Have you seen Emily? She is a lot of things, but medically fragile is not one of them. Her teacher recently told me that Emily is the healthiest student she has encountered in her years working in special education. When Emily was in pre-school, she was the first student in Ms. Tracy’s class to ever get perfect attendance…I mean EVER. The entire process of coordinating the transition from school to an adult day program feels difficult and overwhelming. I keep thinking: it shouldn’t feel so hard. It should be easy. (Oh, the slippery slope of should.)

The remaining puzzles are a tale of insurance obstacles and authorizations for me and Emily. I had an EKG in January. Apparently, the lab results were lost, and now possibly found. EMRs (Electronic Medical Records) that the cardiologist states he sent to my PCP have not been received. My PCP doesn’t seem to have access to the EMR system. Now we wait for a fax or snail mail. I teased the nurse that I could die of a heart attack waiting for the results. I have found a keen sense of humor is a key skill to keep sharp and ready to practice.

Emily has authorizations for an ultrasound, lab work, and the geneticist. None of these appointments or labs have been done. Well, we tried the ultrasound and that was unsuccessful. A messy mix that included a squirming, non-cooperative patient, and a technician that was not experienced working with adults like Emily. Blood work has not been successful. Well, I have been too afraid to try after the epic disaster of the ultrasound visit. We are making progress on our referral to the geneticist. I decided I would wait for this appointment and then all lab requests could be attempted at the same time. There are more obstacles to clear, steer, and jump over, but I can see success on the horizon.

I hesitated to write this post. I questioned if there was value in sharing these struggles and my inability to cope with them with grace. I experienced a moment of clarity last Tuesday in the DBT (Dialectical Behavioral Therapy) class I am taking through We Are Brave Together. The therapist, Matt Metcalf, discussed that physical pain, among other things, can impact our ability to regulate our emotions. While trying to navigate all the obstacles over the past few weeks, I have been in physical discomfort. It has been cold here and my symptoms due to Raynaud’s Syndrome have increased. My hands, but mostly my feet, have been numb and uncomfortably cold. I just can’t seem to get or keep them warm. I have also had increased pain in my right foot due to other issues. My ability to regulate my emotions and walk the middle path has been tested, and I do not think I am passing.

The overwhelm I have been experiencing is real. I am not a unicorn. Parents caring for children with complex needs are used to fighting. They are used to fighting for services, procedures, equipment, and testing, along with a host of other things. Many parents struggle with their own physical pain and medical complications, while also caring for a child with disabilities. Most of the time we don’t talk about it. We don’t share the struggles. We endure in silence and that is unfortunate. In sharing our journey, the highs and the lows, we support others on a parallel path. They can be comforted that there are others out there that get it. Parents that understand. It is also a way to create conversations for change. When we know what the obstacles are, we can remove them for those that come behind us. Their path can be made a little straighter.

I had to take a moment this weekend to pause and step back. I told my accountability group that I was going to sit down with the box of puzzle pieces and start methodically sorting them. Once I have the pieces for each puzzle sorted, I can begin to put the puzzles together one at a time. There is time for these tasks to be completed and nothing is life-threatening. Things will happen at perfect timing and all things will work out. We will find a suitable program for Emily once she ages out of school. We will get an adaptive seat in Todd’s truck and travel as a family in the future. Eventually, both of our medical tests will happen. If we are meant to get answers, we will.

I am grateful that I have the skills to make the calls. I can complete the forms. The ability to be both persistent and kind is a skill I can activate. Generally, I communicate effectively. I am not patient, but I am developing the practice. Once I get the pieces sorted, I will confidently solve each puzzle.

Unexpected JOY in a Reluctant YES

This is going to be a weird weekend, I thought. There aren’t any football games this weekend. What will Emily and I do to occupy our day? For the past twenty-plus weeks, Emily and I have watched football. Saturdays have been a sprinkling of college games (this is the first year we have watched them). On Sundays, I began to plan our day around NFL games. We usually watch football, but not with the regularity and dedication of this last season. Why was this year different? Skin in the games? Possibly. I just know that we watched and now we are a little disappointed the season if over.

In August, my dear friend (and awesome accountability partner) invited me to join a football pool. I am not sure if it is called a pool, but let’s just use the term. (Please reach out to me to enlighten me on the correct terminology. I am a novice at all of this football stuff.) Koko needed at least 30 participants willing to give her $25 to create decent payouts. I thought 30 people seemed impossible to get.

“What do I have to do?” I asked.

Koko explained the basics of the game: “Each week, I will email out a list of all NFL games that will be played. There will also be five or six random college games included. You pick the winners of each game and guess the total points on a game as a tiebreaker. The top three each week get money. The amount will depend on the number of participants.” She added more information about the regular season and the playoffs. After she said we had to pick the winners of all NFL games and college games, I stopped listening. I had no intention of committing. This sounded overwhelming and complicated. We ended the conversation with me committed to thinking about it. Truth be told, in my mind, it was a no.

Why was I unwilling to give it a try? It wasn’t a substantial amount of money. There was a time in our lives when spending $25 on something nonessential would not even be a possibility. I can always quit if I get overwhelmed or it is too difficult to keep up. You are not a quitter anymore, remember? My inner chatter continued for a day or so, as I pondered committing to one more thing in my life.

It wasn’t long before Koko reached out to our accountability group. This time she expressed she was close to having enough people but needed a few more to commit. Just knowing she was close to reaching her goal pushed me to say yes. I, along with a couple others in our accountability group, decided to join. We invested our money and waited for instructions. By the end of that day, Koko not only met her initial number of 30 participants but exceeded it. By the time the games started, she had over 40.

I received email instructions for our first week picks. It outlined how much money the first, second, and third place winners would get each week. It highlighted the date and time our picks were due back. The details were all there. It included the games for the first week. It was an 8 x 10 sheet of paper of requests and decisions. My brain, once again, went into freak-out mode: This is a lot of games. This is going to take forever. Why did you commit to this? Where is Clemson? What the heck is a Razorback? What the hell were you thinking? You know nothing about football. This was a stupid idea. You do not have time for this.

My thoughts naturally lean toward “freak-out mode” with any decision I make (or don’t make). I am going out on a limb here, but I bet your mind goes to all the things that can go wrong. It throws shade at your choices and tries to deter you from trying something new or engaging in the unfamiliar. We are hardwired to stay in our comfort zone. Anything we pursue outside of the normal settings gets the mental chatter flowing and my chatter was in overdrive.

I would love to say I figured that it out like a boss and won first place, but that is not how it progressed. Next to the line that said “total points”, I put 1001. (I really did.) I also added a note in the margin, “I am supposed to guess the total number of points for all these games every week? This is ridiculous!” I scanned my answer sheet and emailed it back to Koko. A few minutes later, I got a phone call from Koko. (A text was not going to get the job done.) She explained that I was only guessing the total points for the Monday night game for the tiebreaker. Well, hell-o Operator. I told you that I knew nothing about football or this pool thing, but I managed to make it more difficult. I proceeded to give Koko a reasonable, yet highly unlikely, total number of points for the Monday night game.

The interesting thing was as the week’s progressed and each game was decided, my interest increased. It was exciting to watch the games. My energy and focus on what was happening increased. I started to learn some of the names of quarterbacks. I would complain about “bad calls” by the referees. Some of the calls would make me mad. I paid attention to news blurbs about players, team injuries, and that damn COVID thing. Who invited COVID to play anyway? I could not believe that I was enjoying this. Who am I?

I continued to add my commentaries and protests on each sheet I sent to Koko. I complained about not wanting to pick a winner for certain games. I spoke of decision fatigue or that I did not like the team I chose to win. I encouraged Koko and praised her for running this. It was hard work. She got my added chatter each week on my pick sheet. She got used to my added llama drama in the margins.

A few weeks into the season, Koko had to undergo emergency surgery. Justin and I agreed to collect and record the scores for one week. It took a lot of time and energy to coordinate and collect the data each week. (Full disclosure: Justin did all the heavy lifting. I merely hounded the crew to get their picks turned into us.) My appreciation for Koko’s skills at collecting and calculating everyone’s picks increased. I even started to keep my complaints and chatter inside of my head and not include it on my sheet. Koko had enough work and didn’t need my thoughts added to the mix.

I did not win “big money”. I did manage to get last place one week! I was proud of that win. I won 33 cents of the “last place buck”. Two others had done just a poorly at guessing as me. The truth is, we all were just guessing. Some of did educated guesses and others flipped a coin. When the final payouts were made, I collected close to $27. The investment and reward were about equal, but the real payoff was the amount of fun I had. Child-like fun. I enjoyed cheering on the team I picked each game. It was great to learn more about the game and the rules. I loved that there was a little friendly competition between my accountability group. I enjoyed the text threads we shared during the Sunday games. I loved these chats. Women talking football. My father-in-law started calling me during games to ask who I picked to win. Sometimes we were cheering for the same team and sometimes we weren’t. The short talks with him were a gift I never expected, and a memory I will have forever.

Saying YES to something I knew nothing about enriched my life. I gained both knowledge and appreciation for the game. Watching TV is something Emily and I do together. Football is something we both enjoy watching. That was a huge win. I loved that my boys would sometimes get caught up in the game, and we would all gather together in the living room. Those moments certainly made me happy. Football was also a way I could connect with my father-in-law. By saying yes, I created more JOY. I also added more connections to my life. Go ahead, say yes to something outside of your comfort zone. It may bring you more than you could ever imagine.

Added commentary: This post drops on Tuesday at 11:11 am. Tuesday is also 2/22/22, which is said to be lucky. It is also Koko’s birthday. Happy birthday Koko! May the day and year be full of joy and luck.

A Letter of Gratitude to The Wiggles

Emily mesmerized at The Wiggles Live 2012

This morning Todd and I were trying to reset Emily’s FireTV. Nothing we did seemed to restore YouTube. We worked at it for what felt like hours, but it was only ten minutes. What are we going to do if we cannot get this fixed? How will we survive without The Wiggles? Todd and I realized we said WE. You see, for the past 23 years, The Wiggles have been part of our family. Our family has weathered many seasons, and The Wiggles have been by our side. Over the years, our family has grown and transformed. The Wiggles have too. From low-budget sets and plain colored polo shirts to fancy sets and location shoots. The costumes, once generic and basic, now pop. Each displays their names boldly printed across the front. (The Short family was not too keen on the new shirts, but we rolled with it.)

The Wiggles were there from the beginning. Justin danced and sang Hot Potatoes as I nursed Emily. Each morning started with an episode of The Wiggles before we headed out on our daily adventures. Each day was normal. Each day was typical. When Emily was three months old, we knew something was off. Emily would not coo or smile. Emily could not seem to hold her head up. She was not gaining weight and threw up most of what she took in nursing. As we began our journey of a not-so-typical life, The Wiggles came along for the ride.

Anthony, Murray, Jeff, and Greg traveled with us via a portable DVD player to countless appointments and therapies. They were there when doctors thought Emily might have Cystic Fibrosis. They were there when she had MRIs, genetic testing, CAT scans, and blood draws. They were there when we were told that Emily probably has a genetic disorder, but we may never get a diagnosis. They came to each appointment and helped soothe Emily as she was poked and prodded. They calmed her when my love and touch were not enough. When Justin was restless and tired of spending many hours at appointments with his sister, they entertained and comforted him as well. Those dudes had my back.

When Emily began preschool, she would get easily overwhelmed. She would barely last an hour before I would get a call that she was inconsolable. Each day I would go pick her up. I planned each morning around the anticipation of that phone call. I did not dare try to go home. I traveled only a few miles from the school. I took a quick walk at Signal Hill Park or a fast Target or Trader Joe’s run. I never wandered far. When the call came (and it always did), I would go sweep her up and drive her home as she continued to scream the entire way. Once I got her into her room and played a Wiggles show, she would begin to relax. The repetitive music on a worn DVD was the only thing that would comfort her.

One day the principal asked what calmed Emily down. I told him that the only thing that seemed to work was a quiet space and The Wiggles. The next day the principal showed up with a Pack-N-Play his daughter had outgrown, a DVD player, and a Wiggles DVD. He set everything up in a small room (well closet) adjacent to the main class area. When Emily got overstimulated and overwhelmed, the teacher was instructed to take Emily to the adjacent room. She plopped Emily into the Pack-N-Play, dimmed the lights, and turned on The Wiggles DVD. Something magical happened that day. I did not get a call. I got four hours of respite. I cry just thinking about the extra effort that the principal made to comfort Emily and help her adapt to school.

Eventually, Emily would make it through the day without a quiet room and a Wiggles DVD. She still required The Wiggles when we were driving. We used a portable DVD for years. When I bought a car with a DVD player, it was easier to bring them along. Once we arrived home, The Wiggles returned. When it was time to go to bed, they were the lullaby music that lulled her sleep (and they still do). The Wiggles have always been the one thing that would calm Emily and bring her to a happier emotional state. They are the soundtrack of the Short home.

As she grew, they were her friends. Her only friends. She interacted with the characters on television like they were right there with her. She would dance and smile as Captain Feathersword would say, “blow me down”, and fall to the ground. She laughed at Jeff falling asleep and everyone calling for him to wake up. She would groove to Do the Monkey and Hot Potato again, and again, and again. When Justin was off to sleepovers and playdates with his real-life friends, Emily’s friends were the ones inside the glowing box.

In 2012, the original Wiggles planned their farewell tour. They were playing at The Wiltern in Los Angeles. I wanted to take Emily, but I was not sure she would tolerate the clapping, the lights, the noise. She does not do well indoors and is easily overstimulated. My mom encouraged me to take her and thought Emily would love it. I explained to my mom that we did not have the money to buy tickets. I told her it would be a waste of money if we purchased the tickets and Emily could not tolerate it. Mom disagreed. She proceeded to order two tickets for the show.

It was a Sunday afternoon show. I drove nervously to the venue with Emily dressed up and looking adorable in her best dress. We parked on a side street in a sketchy area because I didn’t have extra money to park in the lot close to the theater. We walked several blocks to the theater. I fed Emily along the way so she would not be hungry. We entered the ballroom and presented our tickets to the staff. The kind staff member escorted us to the front of the theater. This could not be right. We bought the cheapest seats available (with a Groupon no less). Because Emily was in a wheelchair, we could not access the assigned seats, so to the front, we went. A few minutes later, the staff returned with a fold-up chair for me. Next to us were 3 young adults in wheelchairs with their parents. The other kids were verbal and insisted each was The Wiggles’ biggest fan. I smiled in agreement, but I knew Emily was their biggest fan.

As the house lights dimmed, my anxiety increased. “What if she screams? What if she can’t handle it? This was a bad idea? She has never done anything like this? I was crazy to bring her. How are we going to leave when she freaks out?” As I concluded my mental beat down, I looked over at Emily. She was mesmerized. The music is playing. Kids are laughing and dancing. The curtain opens. Each of Emily’s friends begins to fill the stage. It was the most incredible thing to witness. She recognized each person as they appeared on stage. Her face expressed joy and delight. She did not exhibit fear or anxiety. Emily had watched The Wiggles on television for 12 years. Today she got to see them in person. Not only did they perform and captivate her attention for the full 90 minutes, but each one made their way to our section and introduced themselves and hugged Emily. They thanked her for coming to the show. My love for The Wiggles grew 10x seeing the love and kindness they showed my daughter that day. They saw her. The reality is not everyone does.

Almost ten years later, The Wiggles are still the soundtrack of our home. After Todd and I got the TV working this morning, the first video that came up on YouTube was The Wiggles Reunion concert from 2020. Todd and I both watched for a few minutes with Emily. The entire audience was Emily’s age. They were all dressed up as their favorite Wiggle. The crowd was going crazy and singing right along to every song. Truth be told, Todd and I were singing along as well. Todd said, “Look at the fans. They are all old. We should have been there. We are fans too.”

At that moment, I knew he was right. For all the crap I sling at The Wiggles, they have always had our backs. They have been there for Emily, but they have been there for me too. I have depended on them to always be there for Emily. They have been her friend, her comforter, her sitter. They have never let us down. They stayed up all night with me when Emily was sick. They traveled with me to difficult appointments. They have entertained Emily when I am exhausted. They have kept her company when I have chores to do around the house. In fact, she is sitting on the floor watching them as I write on the sofa.

I want to extend my gratitude to The Wiggles. I want to thank them for continuing to make music and new shows. They continue to delight children young and old with your catchy, corny songs, which I will never forget. Thank you for seeing my daughter and her diverse peers. Thank you for being a friend to my Emily. This mom is forever grateful for your support and companionship on this unexpected journey and she also might be your biggest fan.

Celebrating Consistency and Growth

A few weeks ago, I wrote that my feet are smoother and healthier than ever after a full year of consistent pedicures. An unusual topic, and yet I am writing about them again. Well, not my smooth, tiny feet, but about consistency and growth. This week marks the first anniversary of my blog posts. I am proud of myself for consistently showing up week after week. I have kept this commitment to myself. I used to be a woman that honored commitments I made to others, but not always herself. If someone else was depending on me, then I showed up. The old me would quit on herself with regularity.

No one read my post: Quit
Too tired to write: Quit
Emily is sick: Quit
I was ill: Quit
We are going on vacation: Quit
Nothing to write about: Quit
I don’t feel motivated: Quit

You get the idea. I used to be a quitter. Especially when the only one who I was accountable to was myself. I did not see anything wrong with that. I was only letting myself down, and no one would know or care. The change happened when I realized I would know, and it mattered. I matter. Because it was important to me, I would prioritize getting it published.

When I committed to writing a blog, I told myself I would do it each week no matter what. My thought process was simple. I told myself, “Billie, you are the boss. Your boss expects you to post a piece of work every Tuesday at 11:11 am. Period.” It may sound funny, but I knew if my boss told me I had to do a post every week or would lose my job, you are damned sure I would have it done. (I hope my real boss doesn’t get any ideas.)

I have posted some content every single week. Not all of my posts have been literary masterpieces. To be very clear, none of them are. They have been a way to share tools to help others grow and learn. There have been stories of gratitude for loved ones. Some are honoring loved ones who have passed, and some are important in my life today. I have written about the struggles of isolation and caring for my disabled daughter. I have written about fading friendships, invitations that didn’t come, and managing stress. I have posted pieces on self-care and tools to reduce stress. Keys to handling the holidays without regret. The topics are wide and varied.

When I started writing a year ago, I did not know where this adventure would lead. I was building a coaching business. I wanted to provide information to help other caregivers in the trenches. Women who may feel overwhelmed and lonely. Caregivers who are struggling. Some are barely hanging on by a thread. For many parents raising children (and adults) with disabilities, emotions vacillate between exhaustion and overwhelm. My intent was to reach these women and help show them how to care for themselves. Provide the reader with manageable, tiny action steps to add to their resource toolbox. I also wanted to share some of my experiences in the trenches. I want them to see there is light even in the darkest days. We, caregivers, are strong, valuable, capable, and tougher than our challenges and struggles.

I did not expect that a year of writing would teach me so much about myself. I discovered that I love to write. I forgot the joy that can be found in expressing my thoughts in written form. I uncovered memories of my parents and childhood that have been buried for years. I was delighted to share parts of my life. I was surprised and delighted at some of the memories that surfaced on this journey. I have overcome challenges in my marriage and raising a child with disabilities. As I recalled some things I have overcome, I realized I am a strong woman. I am sensitive, empathetic, and soft, but I am also a fighter, a fixer, and a problem solver.

In celebration of a year of posts, I decided to create two lists. The first list is the top five blog posts of the past year. The ones that had the most views, likes, comments, and even a re-post, or two:

As more people find my website and my posts, I have had more interactions. Most of these posts, except for Fasten Your Seatbelt are more recent posts. Fasten Your Seatbelt was my first repost on findingcoopersvoice.com. It was such an exciting thrill to have something I wrote posted to another site.

My top five have some overlaps:

My favorites, except Fasten Your Seatbelt, are also recent posts. It is not because these posts got more views than earlier posts. My recent posts reflect my growth as a writer. When I started this blog in 2021, I didn’t know what I was doing. I just decided to write. I wanted to keep writing short and bite-sized. They conveyed a short message that did not expand and explore thoughts or concepts. By writing consistently, week after week, my skill is developing. It is reflected in my work. By consistently writing, I am getting better at it. I am not J.K. Rawlings or Jodi Picoult, but I am not measuring against anyone else but me. As I learn and grow, I am excited to see where my writing takes me in 2022.

I would love to know which post was your favorite or topics you would like me to write about in future posts. I appreciate the caregivers, readers, and friends who read my writing. I am honored and grateful that you show up each week.