If you give a caregiver a break, she may add a pause If you give a caregiver a pause, she may take a hiatus. If you give a caregiver a hiatus, she may just go MIA.
billie short
I am still here caring for Emily.
I am still here working my day job.
I am still here assisting my in-laws as health challenges have emerged.
I have not been contributing new articles to my blog page.
I have not been keeping up on my social media pages.
I have not been great at reaching out to friends and connections.
There is much I want to share. There are many things I would love to write about and talk about and yet, I have been conflicted about putting it out there. I also wasn’t sure anyone wanted to hear it.
Many of you have reached out and expressed missing my words and presence. It means the world to me. I have missed sharing part of this wild and crazy caregiving journey with all of you too. Your encouragement, support, and kind words are giving me the courage I need to get back in here and share. In the coming weeks, I will share what has been going on in our world. There will be joy. There will be challenges. There will be discomfort. I am ready to embrace the discomfort and write from my heart.
PS-In the spirit of my friend Gail Boenning, who writes a beautiful daily love letter, I would like to leave a link to a song that resonated with me as a caregiver. I have been listening to it often since Emily broke the family’s “special day” plate on her 23rd birthday. Grateful to my friend, Maya, that shared it with me. Maybe, it will resonate with some of you. It has become a favorite: The Mother by Brandi Carlile.
It was January 2022. I was sitting on a Zoom call and interacting with nine perfect strangers. We were on a Quest led by Bobby Kountz to discover more about ourselves, our purpose, and how we could use our unique gifts to impact the lives of others. Some had a clear vision and purpose and how they planned to share it with the world. Others began to paint the picture and execute the vision each week. As each week progressed, I realized I was living my purpose each day caring for my daughter and family. Sharing the joy and struggles of the journey in my writing is the icing on the cake.
My experience in Quest also reinforced that I value people and connection over material possessions. Human interaction is more valuable to me than gold or silver. Every connection is a precious, one-of-a-kind gemstone, and boy, did I collect some gems through my experience. One of these Gems goes by the name Gail. It was Gail’s quiet confidence that attracted me. She was so different from me, and I wanted access to her energy. I had a girl crush! (To get the full scoop, I recommend checking out Curiosity to Connection.)
Gail reached out to me. She invited me to connect on a Zoom call to chat and get to know each other better. I was thrilled and so excited. I got up early that morning to shower, shampoo, and shine for our 6 a.m. call. We quickly broke the ice and learned a bit more about each other before she had to hop off the call. She was having a mammogram. I didn’t think much about it other than having empathy for her. Mammograms are not on my list of pleasant experiences.
Our call was on February 8, 2022. On February 11th, Gail got the news that she had breast cancer. When I heard the news, I was sad, and there was a feeling of discomfort. We weren’t friends. Heck, we were barely acquaintances at this point. While our connection was new, I remember thinking the timing of our call had to mean something. There was a reason we connected at this exact moment, but now what? How do you support someone appropriately that you barely know? Do I acknowledge the cancer diagnosis? Do I engage? Do I retreat? I really wasn’t sure.
We continued to chat on the phone weekly through most of her cancer treatment. Sometimes, the conversations were a bit awkward because I was afraid to say the wrong thing or cross a boundary I had no business crossing. Gail has a gift for asking questions and pulling quotes out of thin air like a magician pulling a rabbit out of a hat. Her gifts were a catalyst for me to push through my hesitations and fears. Through our sessions, our friendship began to blossom.
As I wrestled with my thoughts about supporting her, I thought about what helps me when I need support. The answer is MUSIC. When I am feeling down, there is a song for that. When I want to feel sad, there is a song for that. When I am in gratitude, there is a song for that. When I want to rejoice or celebrate, there is a song for that. Some people lean into poems or affirmations. Others have prayers or quotes that help them. Music has been the salve that heals my wounds, comforts my soul, and brings me joy. Maybe that is a gift I could share with her?
As we texted or chatted, I would listen and try to get a sense of her energy. Later I would share a song that I hoped may be supportive at that moment. I would bet money that most missed the mark. Some may have her questioning my mental state. Others were on the ready for another day. But I knew some would be received at the right moment because music is magical that way. I didn’t send songs about cancer. I didn’t send I’m Gonna Love You Through It or I Run for Life. These are great songs, but not the message I wanted to convey. I selected songs that I hoped would give her a feeling of empowerment, gratitude, or peace. While I certainly planned to love her through it, and I have and will continue to run (well, walk) for life, they were not the right ones for the job.
Last week, Gail Boenning published her fourth novel, Poise: Facing Cancer with Grace and Resilience. I couldn’t download the book on Kindle or order a hard copy on Amazon because I did not have access to good internet on my trip. (I was disconnected in a good way.) I returned home in the wee hours Thursday and discovered that damned Covid stowed away in my luggage. Day one at home was a Code Red day. My primary backup caregiver injured her knee on the last day of my trip and was down for the count. I was in full crisis mode in my head. How was I going to care for Emily without getting her sick? I have so much work waiting for me at my day job. God, cut me some slack. Figuring out caregiving was the top priority, followed by my work. Then time to rest and heal.
I have made it to the rest and healing portion of my journey. I get to read and write again. My blog space has been neglected for the past few weeks, and I finally have a chance to sit down and write. BUT…I have nothing to say. As I ponder the blank page, it hits me that I am in a funk. I shouldn’thave gone on this trip. Things always go wrong when I am away. Why can’t I catch a break? Todd has to be exhausted from caring for Emily, and now he has to do it longer. This is the tamer chatter spiraling in my mind. Well, Billie, what do we do when we can’t write (or leave the house or the bedroom except for double-masked bleach-infused trips to the loo)? We read. Let’s finally download Gail’s book and settle in for the ride.
I was hooked from the beginning of the book (as I knew I would be). This book is a sharp contrast from Gail’s prior work. Gail shares a level of intimacy and vulnerability that won’t be found in her other books. It captures snippets of her stay in the land of Cancer. Each vignette opens up a bit of the picture. Gail answers many of the questions I never dared to ask. As the story unfolds with each vignette and comes into focus, I discover it isn’t about cancer at all. Cancer is one of the characters, but Gail refuses to give it the bulk of her attention. Gail paints a picture of love, gratitude, and awareness for the care team that helped her navigate through Cancer. It is a beautifully written love letter to her caretakers. It shines a light on the people that cared for her, supported her, and gave her the resilience to step into their light while she “vanquished the invaders”. Take that cancer! You don’t even get a capital C anymore.
Gail, thank you for this full-length love letter. I received a gift of love as a caregiver. I felt the appreciation you openly shared about each individual that lifted you up. Often, caregivers are not acknowledged for the work they do each day. I hope each of your caretakers feel the love and receive the gift with open arms.
P.S. In the spirit of cliffhangers, if you are wondering which songs hit the mark, if any, you must read the book to find out. Also, get the book because it is a great read.
Rarely do my days flow without any hiccups. Challenges and obstacles are more the rule than the exception. It is easy to go down the rabbit hole of negativity. The martyrdom life is not a hard sell for extreme caregivers. Because it is easy to complain and wallow in self-pity, I make it a practice to look for the good in each day. It isn’t always easy, but I can always find something (or three) to express my gratitude for in my life.
In the spirit of gratitude, I decided it was time to create a caregiver list of gratitude from A to Z. This list includes things that make our journey easier. It is only a few of the many resources, programs, skills, traits, and people that I am grateful for on my caregiver journey.
A is for adapting equipment from AAC devices and leg braces to wheelchairs and tomato seats.
C is for chewy necklaces. My daughter is constantly chewing on something, and this is a safe way for her to do that. (Bonus: I can find them easily in every color to match almost any outfit.)
D is for Diapers.
E is for EEG studies. (Not for the study itself, which is not always easy for our kids, but for the data it provides families and the care team.)
F is for friends and family who support us. The ones that bring the ladder when you are stuck in the trenches.
G is for granola. When life is hectic, I love that having a little granola fuels my body and makes me feel like I am making a good choice.
H is for hospitals and emergency medical care. You hope and pray you never need them, but are grateful it is there when you do.
I is for insurance. As much as I complain about the process, I am thankful we have it.
J is for juggling. All the juggling caregivers do each day to make the important things happen.
K is for kindness. It is free and abundant, yet, it can be rare.
L is for this beautiful, wild, and crazy life.
M is for medication. Emily relies on medication to sleep and control allergies and anxiety. I am grateful they have improved her quality of life. (As well as the lives of those she is around.)
N is for noise-canceling headphones. These are definitely a must-have.
O is for orthotics that help Emily to do transitional walking and align her feet properly.
P is for physical therapy. Emily doesn’t go to PT anymore but I am grateful for years of PT that helped her meet her full potential.
Q is for quiet moments.
R is for respite and rest. I cannot do this job 24/7 without taking breaks to recharge.
S is for science. This year, thanks to advances in genetics, Emily got a diagnosis at 22.
T is for technology. Thanks to technology I have connected with caregivers around the world. What a freaking awesome gift!
U is for unlearning. I have unlearned as much as I have learned on this journey, and I am grateful.
V is for velcro.
W is for wipes.
X is for Xanax. A medication that helps regulate Emily’s anxiety.
Y is for yogurt. Yogurt and applesauce are the conduits to getting medication into Emily’s body. I am grateful for these soft, easy-to-hide pills in food choices.
Z is for zebras. Did you know the zebra was chosen to represent a rare disease? It is based on a quote from Dr. Theodore Woodward: “When you hear hoofbeats, think horses, not zebras. When you hear hoofbeats behind you, don’t expect to see a zebra.”
My level of joy and contentment increased as I created this list. It is a powerful exercise. I want to thank Jay Armstrong for his unique gratitude list he shared in the Gratitude Journey Volume 3. It inspired me to write my own. I definitely recommend this book to help grow your gratitude practice. Gratitude definitely creates more joy in the journey. I cannot wait to hear other caregivers weigh in with their list.
I often hear it said that the days go slow, but the years go fast. Those words are hitting me hard today. Emily will be twenty-three this week. I can’t help but reflect on how fast the time has passed. It is hard to believe we have been on this journey for so long. I would love to say that I never worry about her future, but that would be a lie. My anxiety increases as Emily ages. Her age is a reminder that I am aging too. Who will be there when I can no longer meet her daily needs and keep her safe? Her birthday is a subtle reminder that I am aging too.
In January, I published a short article on Medium that captured the melancholy of my mood:
The New Year is here. It is a cool, wet, and dark day. The weather is gray and a bit dreary, and I am too. My body is aging and yours is too but mine is slowing down and yours is still racing forward.
As I get older, I think about your future. What things will look like in years to come? How long will my body be able to be your hands and feet? How long will I have the mind to advocate on your behalf?
For over twenty-two years, I have lifted, carried, bathed, dressed, and moved you. It is my hope to continue to care for you until my last day on earth. I often dream that you will never know a time when I am not the one who is there for your care.
My caregiver fears working overtime today AND that’s OKAY.
While I carry anxiety and fear, joy and gratitude will cut in front of them as we celebrate the birth of my beautiful girl. I will wrap presents for her that I will open. There will be cake that I will feed her. There will be love that I will express to and for her. I will receive, with open arms, the gift of another year that I am able to be Emily’s hands and feet.
Happy birthday to you, Emily. May you continue to grow and thrive and be a vessel of unconditional love to everyone you encounter today, tomorrow, and for years to come.
Why is everything getting harder as Emily gets older? I thought things would get easier. Why is finding caregivers harder? Why is finding medical providers harder? Why is finding a dentist harder? These are the recurring thoughts that cycle through my head. I have loudly shared the long saga of trying to get a new wheelchair for Emily. (She has yet to receive it as of this writing.) I have been silent in the parallel journey to find a new dentist and get Emily’s teeth cared for.
Emily had her teeth cleaned last November. The pediatric dentist we have seen for years (and love) informed us that Emily had at least one wisdom tooth emerging, and we would need to seek a new dentist to address the issues. I remember calling my husband on the way home in shock. “Of all the things that I worried about us dealing with as Emily aged, wisdom teeth were not even on my radar!” We work hard to care for Emily’s teeth the best we can. As she has aged, teeth care has gotten harder too. Why is everything harder?!?
Her pediatric dentist referred us to a dentist that sees patients with intellectual disabilities. We made an appointment and saw her in January. She was great and was willing to do the work, but for some reason, her office was unable to coordinate the anesthesiologist. We kept going back and forth, and then the office quit responding to my emails or calls. (I think I was ghosted.) I was pretty bummed because this dentist seemed fantastic, and her bedside manner with Emily was incredible.
I discussed the issue with Emily’s PCP in January, and he gave us authorization for a dentist that insurance would cover. Because Emily would need anesthesia, we must use the dentist they authorize for coverage. I reached out to the dentist, and he would not see Emily. Okay, now what? I began my search for a dentist. Every time I mentioned Emily has intellectual and physical disabilities, we would hit an impasse. If they were willing to see her, they wanted X-rays first. Well, we cannot get those without sedating her. We were repeatedly referred to teaching hospitals. I called Loma Linda, UCI, UCLA, and St. Joseph. All had a 2+ year waiting list and were not even taking patients.
After 26 rejections, I found Dr. Daryn Nishikawa’s Family Dentistry in a Google search. (Did I mention it was now June?) It had been 7 months since Dr. Worden informed us that she needed X-rays and work done. I picked up my phone and called his office. I was prepared for rejection. My search had been fruitless, and my frustration and disappointment were hard to mask. Veronica answered the phone and listened to our needs, and then she said that Dr. Nishikawa would see Emily. She mentioned they even had an opening in August with the anesthesiologist if we could get everything processed in time.
The following week, Justin, Emily, and I drove to Torrance to meet with Dr. Nishikawa. He listened to our concerns. He even knew the dentist I hoped would do Emily’s work. (Before her staff ghosted me.) Because I had Emily’s labs, physical, and paperwork ready, Dr. Nishikawa scheduled Emily for August 2nd. Because Veronica helped me get everything in order, Emily got the first appointment of the day.
We arrived bright and early at the office. The dentist, anesthesiologist, and staff were ready for us. The anesthesiologist was gentle with Emily. When she protested the IV, he decided to use the mask to give her calming medication orally before starting the IV. This was not his first choice, but he adapted to make Emily more comfortable. Once the IV was started and Emily was sedated, the staff took a full set of X-rays. It looked like only one wisdom tooth would need to be removed. Dr. Nishikawa removed the tooth, packed it with collagen, and stitched her gums. He cleaned her teeth and then noticed a part of another wisdom tooth was catching. He shaved that one down. (There are fancy terms for all these procedures, but I cannot remember much.) Close to 4 hours later, we left the office with a cavity-free and groggy girl.
It has been a few days since the work was done, and Emily is recovering nicely. The swelling was the worst on day 3, and icing it was challenging. Emily has an aversion to being touched and fought us each time we got the ice near her cheek. She couldn’t gargle with salt water, and applying heat was not successful either. We have just rolled with Emily because fighting her increases her agitation and anxiety.
Next week we will go back for a follow-up, and the dentist will let us know if she is healing properly. I am grateful that Veronica said yes after so many other offices said no. I am thankful that Emily saw an incredible dentist. While we waited for Emily’s procedure, we read articles posted in the waiting room. Dr. Nishikawa has been part of the dental team for several sports teams, including the United States Olympic and Paralympic Committee, and the MLS Los Angeles Football Club. His credentials are impressive, but what impressed us the most was he treated Emily with dignity, compassion, and respect.
There is much we can find each day to complain about. These past few weeks, I have had some bones to pick and axes to grind over so many issues. Health insurance, parking, ADA awareness, and accessibility, just to name a few. Often, when a conversation starts about politics or the government, there are axes and bones to go around for days. This week I want to share some kudos and compliments. This week I bring you a positive and uplifting experience. It gives me hope for the future of accessibility for families that include someone with a disability and who is a wheelchair user.
Thanks to a great friend, Todd, Emily, and I were able to camp at Pismo Beach this past weekend. We stayed at a California State campground. We arrived at North Beach Campground on Thursday afternoon to a beautiful message my friend’s family left us in chalk as we drove into our site. The message said, “It’s a good day to have a great day”. My heart smiled. Michael O’Brien, my favorite meditation teacher, says this often. What a thoughtful and welcoming gesture. They also left us an EZ up, water, soap, and a tablecloth. Apparently, other campers needed those items more than us. They did leave the chalk-adorned rock the grandkids had used to hold down the tablecloth. It was all good. The rock and message gave us more than those material things would.
The site, while not an ADA site, was very easily accessible with Emily’s wheelchair. The campground was large, and kids were riding bikes and scooters on the road that meandered throughout the grounds at all hours. Emily enjoyed walks on the asphalt, watching the kids at play, dogs on walks, and people enjoying the outdoors. The restrooms were all large enough to accommodate the wheelchair and fully supplied. They all had large bins to dispose of diapers, pads, and wipes. The rooms were large enough for the entire family, including Ben.
Pismo Beach had so much to offer. The campground offered evening programs at 8 pm each night in a completely accessible amphitheater. There were also two accessible hikes/walks we were able to take Emily on with her wheelchair. One was The Monarch Butterfly Grove. While it was a bit early for the onslaught of Monarch butterflies that descend in this area annually, we did see some, and the walk was calming and peaceful. After our short walk along the butterfly trail, we asked the staff if the trail that went off in another direction was accessible with a wheelchair. She exclaimed with pride that it was fully accessible and was parallel to the ocean. We enjoyed the mile-long walk along the ocean, passing strollers, joggers, and dogs. Emily loved the sound her wheels made as they crossed each wooden slat.
The City of Pismo Beach website states they have beach wheelchairs free for use. (Other cities we have been to claim to have them, but we have never been able to procure one to use.) They are kept at The Sandcastle Inn by the beach. I called the property and spoke with James. He was very kind and gave me all the details. He seemed thrilled that we were going to come and use them. He asked that we call first to verify one was available. On Saturday, we decided to take Emily for a walk on the beach. Emily has not been on the sand since she was 8 or 9. (Once she got too big for a backpack or to be carried.) When we arrived at the Inn, we were instructed to park in the ADA parking near the hotel registration. The ADA space was available, and easy to get Emily out of the vehicle. We transferred her from her wheelchair into the beach chair. Nicole graciously offered to store her chair safely in the back office.
Todd was in charge of pushing the chair down the ramp and onto the sand. I was nervous at first, but I began to relax. Emily enjoyed the action. The people. The birds. The waves. She loved everything, but the wind. Since Todd was wearing jeans and sneakers, I walked her in the water. I got teary-eyed and a bit choked up during our adventure. We were doing what people do when they vacation by the water, but it was a rare treat for us. The City of Pismo Beach made sure our family had a wonderful experience, and we created joyous memories.
We ended our weekend with dinner at Guiseppe’s in Pismo. This was a fantastic way to end our trip. It was recommended by my good friend, Patti, and it did not disappoint. They open for dinner at 4 pm. We arrived at 3:50 pm. It took one loop around the area to find an ADA spot that had space to lower Emily in and out of Todd’s truck. After parking, we got into a line that was forming around the building. The doors opened promptly at 4, and the restaurant was at full capacity within ten minutes. I ordered butternut squash ravioli for Emily in hopes she would share it with me. She loved it and was stingy. Todd ordered the Fritto Misto. It included fresh sand dabs, octopus, prawns, calamari steak, and scallops that were flash fried. I decided to also order a Margherita pizza. The pizza oven was beautiful and in the main dining area. It was entertaining to watch each pizza being handmade with care.
Our weekend also included a ride on the sand in Todd’s truck. Emily loved watching the ATVs riding the sand dunes. Watching people get stuck in the sand and get towed out was also entertaining. Emily seemed to think tires spinning with sand spewing out the back was hilarious. I reminded her it is not funny if you are the one that is stuck. Luckily, Todd has 40 years of experience off-roading in these conditions. There was zero percent chance we would get stuck. Todd and I loved hadn’t been here since we were in our twenties. The beach was packed end to end with cars, ATVs, trucks, and RVs. It was funny that we remember driving his truck on the sand all those years ago and only saw a few cars and a couple horses.
Our trailer and the added auto access seat installed last year have opened up more opportunities for Emily. It is beautiful when we go somewhere and access doesn’t stop at the truck and trailer. The City of Pismo Beach provided access, opportunity, and hospitality everywhere we visited. They embraced Emily. There was never an issue finding an ADA parking place with the cross-hatches that were open and available. The staff at the campgrounds were kind and kept the restrooms in good order with supplies. The community seems to understand that accessibility is key to a diverse community. After all, disability is diversity, right?
The wheels on the wheelchair go squeak, squawk, squeal. As I am walking Emily, the sound of her tires gets louder. They are completely bald. There isn’t any tread left. Huge gashes and complete chunks are missing. As we continue our walk, I begin to wonder if something bad could happen from pushing her on these tires. Could she get hurt? Will the wheels spontaneously combust? I have no experience with this.
I curse the insurance company, vendor, and wheelchair supplier under my breath as I walk Emily. My husband and I have been fighting for a new chair since this chair was only a year old. It was a lemon from the beginning. The seating ripped within the first six months, and Emily weighed about 80 pounds. (It has a weight limit of 150 pounds.). Then the break fell off. Literally fell off. The frame was never straight, which caused the wheels to wear unevenly. Every time we took it in for service, we were without a chair for 4-6 weeks. The first couple of times, the vendor gave us a loaner chair. In the third incident, they did not have one available. We needed one with a transit option since Emily was taking both the school and city bus. After leaving the vendor on a Friday without a wheelchair, I panicked. I reached out to one of Emily’s classmate’s parents, and they loaned us their son’s old chair until we could figure something out.
My hunt on eBay and other online selling platforms began. I finally found a used chair with transit tie-downs. It was smaller than her current chair, but beggars can’t be choosers as Mom used to say. I threw my credit card at the problem and expressed gratitude that we had $300+ to shell out on a temporary solution and a chair in the mail. The purple chair arrived, and it seemed tiny next to her current chair. Emily fit in it okay, but her hips were a little tight. It was hardly ideal.
Every year, the wheelchair required brake, wheel, or seating repairs. Each time, Emily would be compressed into an uncomfortable chair. This was the only way she could keep her independence and have access to anything beyond our home. She can only transition walk with maximum assistance for short periods.
In January, after a decade with this crummy lemon wheelchair, the doctor finally submitted an authorization for a new chair. Todd and I have always picked a medical insurance plan with the plushest durable medical equipment coverage available. The wheelchair would be covered in full with our insurance, BUT because she has Medi-Cal as secondary insurance, they had to approve the authorization too to move forward. What the actual….? I was livid and knew this would add months to the approval process. (Emily is still waiting for Medi-Cal to cover her first wheelchair from when she was 3. We ended up side-stepping this by getting better insurance!)
Four months into the authorization process, all the insurance powers that be approved a new chair. I may have seen a unicorn jumping over a rainbow that day, or I may have just been in shock. I was thrilled that a chair was coming soon. The vendor confirmed the supplier estimated they would receive it on May 4th. (May the fourth be with us.) Well, May came and went. No chair. The delivery would happen in June. I mentioned the wheels are falling apart on her chair, and we need the new chair ASAP or repairs on this chair because it is unsafe. (I don’t know if ripped, bald tires are unsafe, but I threw out the safety card.) The insurance will NOT cover repairs on the current chair because they approved a new chair.
Well, we are now in July, and the chair is still back-ordered, backlogged, or backed in a corner. It is back somewhere and not here. Now a new problem is here. The authorization is about to expire. Are you freakin’ kidding me? I called the vendor on June 30th to remind them the authorization is expiring and needed to be extended. I called back on July 5th, and it has not been extended, nor is the chair here. They updated delivery to July 14th. Well, I am writing this on July 16th, and guess what? No chair!
All of this is wrong on every level. First, insurance is supposed to cover things. I have said to agents (more than once), “I thought you are supposed to be an insurance provider, not an insurance preventer.” Second, Emily’s wheelchair is basically her legs. When our legs need service, they don’t take them away for 4-6 weeks with a good luck and peace out attitude. She relies on the chair to do anything and everything. Finally, my daughter and others with disabilities deserve better. I am experiencing this in many areas, and as she gets older, I feel more defeated and disappointed by what we are providing (or rather, not providing) to our disabled adult population.
I am looking for the good and positives in this situation, as I always do. Here you go. First, I am grateful that Todd and I were cleaning the garage yesterday and found an old set of tires I requested to keep the last time Emily’s wheels were replaced. Second, I am grateful that Richard, the tech, let us keep them. Third, I am so thankful my husband is handy and changed out the tires in less than five minutes, and Emily is wheeling a little better today than yesterday. Fourth, I am grateful that our family has excellent insurance to complain about. (I know if this is excellent, we are all screwed.) Finally, I am thankful that I can share the good, bad, and ugly in caring for a person with severe disabilities. Hopefully, as we create more awareness, things will change. The world will one day be better for the disabled population.
As a young adult, I remember listening to Earl Pitts every morning on my way to work as he ranted about what was ticking him off that day. It was funny and sometimes offensive, and I laughed at something he said daily. This week, watch out! I’m about to go Earl up in here!
Do you know what makes me sick? Do you know what makes me so angry that I want to hit the gas on my sexy gray minivan and ram it into the back of the little black Nissan next to me? Do you know what makes me so mad there is exhaust coming out of my ears? It is a lack of respect and courtesy to leave the ADA spaces for people that need them and the morons that park in the stripes between ADA spaces. I cannot understand the entitlement of some individuals. This is a serious problem. I am not one to rant and rave, but I am frustrated. In the past two weeks, I have personally witnessed three incidents of blatant disregard for the ADA spaces, and the cross-hatches. I am just one person in one van. I presume the problem is an epidemic and one that needs to be addressed.
I am adamant that there is not enough awareness about ADA parking and the needs of the disabled community that make these spots crucial. If people knew better, maybe they would be like Oprah, and do better. Earlier this year, I recorded an episode ofPain Points for The Disorder Channel called Don’t Block the Lines. In the episode, Daniel DeFabio and I take a comic approach to this serious matter. My guess is that about 100 people have seen it. We need to change that to 100 million people. Is there a way we can get this message seen by the masses? Maybe Paramount, Netflix, Amazon, and other streaming services can stream Pain Points as a Public Service Announcement? It could be used as a PSA between each episode of Yellowstone, Jack Ryan, or whatever binge-worthy show is blowing up each week. In order to continue the binge, you must watch the PSA.
When I was with the family in Las Vegas, we went to The Wynn to see the water show they offer each evening. As we drove through the parking structure, we noted there were very few ADA spaces. Maybe casinos are not required to have more than 2 spaces on each level. I have no idea, but there were zero available. In addition, a black Kia was parked in the striped cross-hatches between two other vehicles. The vehicle did not have an ADA placard displayed or ADA license plates. The person just decided they could park wherever they wanted without concern for the cars on either side. Fortunately, Justin was with us, and he was able to lift Emily in and out of the vehicle without the lift seat being deployed. (His gym membership pays off.) If my son was not with us, we would not have been able to visit the hotel and would have left without seeing the water show. Justin and I snapped a photo and reported the vehicle to security. When we left two hours later, the car was still there. I guess security didn’t seem to think it was an issue.
Yesterday, I was on a mission to find Emily her favorite snack (Nutter Butter Cookie Bites). Word on the street is that Dollar Tree had some. I drove to the store, and as I was parking, the car next to me pulled through the ADA spot. The driver did not park in the ADA spot completely, but she did block half the space. I did not have Emily with me and was in a regular parking spot. I gave the lady my what the heck are you thinking look. She got out of her vehicle, looked at how she was parked, and then she walked away. She was satisfied and thought my look and eye roll was an overreaction. I threw my hands up.
There are times I have left the mall because I couldn’t find a place to park that had the access needed to get Emily out of the vehicle. I cannot just drop her off in front of the store, mall, stadium, or restaurant while I go find a place to park. This is not an option unless I have another adult with me that can stay with Emily. These are real issues when traveling with a person that depends on a wheelchair and is also intellectually disabled. The misuse of ADA parking is not a victimless crime. It is impacting others, even if you can’t see that it is.
I would be grateful, if you could share this message with others. Take a moment to clear a shopping cart from the ADA spaces if you see one (or 10 there). Be considerate of the ADA parking and make others in your circle aware. Awareness is where change starts. We do not know what we do not know (and some people just don’t care). I will continue to advocate, educate, and promote ADA awareness. Let us all work together to create a community of respect and simple kindness for the disabled by reserving the ADA parking for them and making accessibility…accessible.
Isn’t it funny that we all see things differently? We all have our own stories about any situation. As I planned to write about the week in Vegas with Corry, Justin, and Emily, I was filled with joy as I reflected on the trip. There were bumps in the road. Emily was A LOT on the car ride there, and she tested my patience. I was sick and got worse as the trip progressed. We didn’t get to do everything we planned, but I had a great time. I thought it was a successful trip. I was also so proud watching Justin and Emily together. They have a special relationship that is joyful to witness. I was proud of how Emily showed up.
Well, Justin did not see it that way. Justin was quite short with me this morning, and when I pressured him for some clarification, he let me have it. He expressed that he had a terrible trip in Las Vegas and hated it. He is “still recovering from the trip and how awful it was!” WOW!!! His words were a punch in my gut, and my heart broke a little. I have been shedding a lot of tears.
My friend and I tried to get him to go out and do something without us. We left two nights open for him to go and see and do what he wanted. He did not take the opportunity. I was careful not to rely on him to help with his sister. I did most of the wheelchair pushing and all the care. Justin offered to stay in with Emily after she went to bed one night while Corry and I went out. I paid him well for his time and paid for everything on the trip. I can imagine at 24 that your idea of a great vacation is not spending time with your mom and her friend (and your sister) but he signed up for the adventure with enthusiasm.
I respect his feelings and his opinions, and it still hurts. My heart is sad today, and that is also okay and understandable. I couldn’t wait to write about our trip and share the highs and lows. Now, I feel deflated and have no desire to write at all. I will get over it.
My perspective is different. I loved experiencing hotels never seen before. I loved all the fresh flowers and beautiful glasswork that adorned the lobbies of various hotels and casinos. The Pinball Hall of Fame took me back to my childhood. Emily and I had a blast whacking alligators and playing Skeeball. We played for an hour with a handful of quarters. It was a great bang for a very little buck. We enjoyed a cocktail and waited to watch the water show at The Wynn Hotel. The conversation was lovely. The drink was good. The show was not, but it gave us lots to laugh about. I was grateful that Justin volunteered to stay in one night so Corry and I could go to dinner and see KA at MGM. My friend and mentor, Bobby Kountz, was able to meet my kids, and we enjoyed some over-the-top doughnuts and lovely conversation. Also, Emily was so exhausted she was quiet all the way home. The weather was also bearable, which is unusual for this time of year. With the temps below 100, we enjoyed walking outside. Everyone won a little money on the slots, but me. Emily, Corry, and Justin all hit free games and doubled or tripled their investment in the Buffalo Slots.
I lost a few bucks in Vegas, but it was a win for me and Emily. Although Justin won the money, he felt like a loser overall. My hurt feelings will be forgotten, and the memories from the trip with Corry and my kids will remain.
“Are you really taking Emily to Las Vegas for the week?” asked Todd. His tone is full of dismay. Is he married to a crazy person about to do something insane? Well, I guess the answer is yes, and I might just be a little crazy, but I will never tell him that. I will not admit this seemed like a better idea last month than it does tonight as I pack.
After taking Emily to the desert for the weekend to see Lizzo in concert, I decided to book another trip. This time a trip to Las Vegas. I wanted to book a timeshare that Justin loved and go for a few days while he’s on summer break. I wasn’t able to get a reservation at the timeshare that our family really liked. I ended up settling on the mediocre and slightly run-downed timeshare that does boast a great location. We are within walking distance of many casinos we enjoy on The Strip, but the place is less than pristine. Since Emily still crawls at twenty-two, she will definitely let us know if the carpets are clean. (I place my bet on NO for $5.00.)
Todd wasn’t able to get the time off work (or at least that’s his story and he’s sticking to it). I was able to enlist a wonderful friend to be my partner in crime on this adventure. My dear friend, Corry, is brave enough (and kind enough) to make the journey with us. I am grateful and thankful Corry is willing to roll with whatever will be and fly away with me, Justin, and Emily to Vegas. Well, drive with us in the car for almost 5 hours because not even I am brave enough to fly with Emily. It is highly likely that Emily will fuss and vocalize otherworldly sounds for much of the journey. I was talking with Corry yesterday and warned her (again) that Emily will probably be loud and the ride will not be pleasant. She was not phased by the prospect. She said, “Oh well. Emily is going to be Emily. It will be fine.” I may have got a little teary-eyed.
We cannot predict what will happen this week. I cannot begin to know if Emily will rise up and embrace the adventure or if she will be overwhelmed and anxious. Probably a little of everything. I will work on being present, planning for hiccups and obstacles, and going with the flow. Any trip with Emily is filled with lots of baggage, real baggage, and because of that, this post is short and sweet because I have a lot more packing to do. I will practice my Tetris skills to fit it all in the minivan. Will everything fit in the van? You can place your bets on YES.
Conversation for Change 