Conversation for Change

Pearl Sized Loss

It’s just a damn goldfish. Pull yourself together. I go to the cupboard and retrieve the net. Tears are streaming down my face, and I muffle my cries. Guacamole is lying at the bottom of the tank. I scoop his lifeless body from the bottom of the tank and take him to the compost bin. “Go create energy,” I say as I place him delicately on the garden clippings. His death was not a surprise. I had a feeling when I went to sleep the night before that he probably wouldn’t make it through the night, but the surge of sadness was a surprise to me. The grief was unexpected, but grief tends to enjoy emerging when we least expect it.

I remember the day I picked Emily up from AbilityFirst. The staff informed me Emily had won a goldfish at the carnival. (You know the game where you throw a ball into a fish bowl. Emily has a good arm. I sort of believed them.) They handed me a plastic bag full of more air than water. He was so tiny that I could barely see him. When I got home, I found a large fish bowl vase that would be his temporary home. He looked like a little pearl bobbing in the bowl.

That evening I could be found Googling all things “goldfish”. All things are possible with God, and Google(Or YouTube and Yoda), I thought. I made a list of all the items I would need to procure at the pet store the next day. Along with a larger tank, filter, gravel, and food, I purchased the tiniest goldfish I could find in the store to add to the tank. I had read that goldfish are social and that you should have at least two in the aquarium to keep each other company.

Emily watched as I set up the new tank. I felt accomplished that I did this on my own. Over the next few days, Emily and I watched as the fish acclimated to the tank and each other. That was at least nine years ago. The other fish passed away a couple years ago, and I cannot even remember his name. He never had the personality that Guac did. Each day as I entered the kitchen, Guacamole would greet me. He followed me as I moved around the kitchen. He would come to the corner of the tank, surface, and say feed me (well, that’s what I heard). The boys passed him without notice. (I wrote about this in Throw a Fish Some Flake.)

I always said Guacamole was a special needs fish. He was so tiny when we got him that he got caught in the filter the first week we had him. I was sure he would not make it after that episode. He made it, but one of his eyes did not. Guacamole was virtually colorless, and you could see his organs. He was not handsome, but what he lacked in looks, he made up for with his personality and social prowess.

Two months ago, I bought his final tank. I knew he was slowing down, but he has always been resilient, and I was optimistic he might rebound as he has done in the past. Guacamole had overcome so much. He continued to decline in his new zen tank, complete with a Buddha statue and his newest companion, a zebra snail.

Like Guacamole, I am resilient and no stranger to loss. This week will mark the 38th anniversary of my dad passing. The loss of my dad was monumental. A loss that still strikes me with waves of grief. The loss of Guacamole, like his size the day he became a part of our family, is pearl sized.

Little Things We Take for Granted, are Big to Others

One of the greatest gifts I have received from having a child with developmental and physical delays is that I no longer take things for granted. During my pregnancy with Justin, I devoured the What to Expect books like Crème Brûlée. They were treasured maps and guides. When Justin not only met but exceeded what I was to expect, I was full of pride. As though his development were a direct reflection of me. In my naivety, I believed all my children would ace every developmental benchmark. I took for granted that Justin was neurotypical.

Emily came along and forced me to throw out the manuals and books. She did not meet any of the what-to-expect milestones. Years went by before she did. I recently shared that Emily finally learned to drink from a new cup at twenty-two. This week, while doing some new year cleaning, I found a Polaroid of Emily drinking from her cup for the first time. It reminded me that Emily has always done things on her timeline and in her own way.

We take for granted that our kids will walk, talk, read, and write. We believe they will grow into adulthood and make their own decisions. They will live independently. Until Emily was born, this was my belief. Emily has opened my eyes and shown me that each human has a unique path and route to travel, and sometimes there aren’t any books that can help you.

When most adults need routine medical checkups and lab work, it is not a big deal. We pull up our sleeves for the blood draw. We follow directions as we are probed and prodded to get valuable information that will give us information to improve the quality of our lives. If we are low on Vitamin D, we know we need more sun and maybe a supplement. When our iron levels are low, it directs our providers to the next step in our care to optimal health. We take for granted how lucky we are to be able to access this vital health data. At least, I know, I did.

I cannot remember the last time Emily had routine labs. Most of the time, even getting Emily’s blood pressure is unsuccessful. It has been years since she has been weighed at a medical appointment because not a single doctor’s office has a scale for wheelchairs that is easily accessible. When she was young, mom and Emily both got weighed. I weighed first and then held Emily and got back on the scale. The nurse then did the math. I can no longer do this. (Now Todd or Justin perform this task at home.) As she has aged, her physical and cognitive delays have compromised the quality of medical care Emily receives.

In December, we found out Emily has a wisdom tooth coming in and that it will create issues. Before the procedure is scheduled, Emily will need lab work. I was on the phone with her primary care office and began to cry as I requested a physical and blood work. The nurse was caring and empathetic. She asked follow-up questions. I explained that the labs Dr. Hertel had ordered at her last physical exam never happened. The technicians were unable to get a blood draw. In my meltdown, I expressed that there has to be a better way and that my daughter was not getting the preventative care she deserved. And, if that wasn’t enough I added that I was failing as her mom. (Ah, the poor nurse.) Nancy made the appointment for the physical exam and kindly jotted down notes to relay to the doctor.

Later that day, Nancy called to inform me the doctor was going to put in authorization for a mobile service to do the blood draw for the lab orders at home. I was relieved but also angry. I had to have a mini-breakdown on the phone before anyone offered an alternative.

The obstacles to providing Emily with routine medical care are challenging. I prepared myself for barriers to entry for Emily with her delays and inability to walk, but I never expected her medical care to have some of the highest ones. I will fight to continue monitoring her health in any way she will tolerate and allow. I will fight for changes to make it easier for her (and me too). I am grateful that I can fight for her, but disappointed that I must do it. Maybe one day the inequities in her care compared to a neurotypical adult will not exist. I hope that day comes in my lifetime. If it does, you can bet that I won’t take it for granted.

New Year, Recurring Fear

There is something beautiful about starting a new year. Each year is a recurring clean slate. The past year is behind us, and a new year is ahead. I was extra excited that January 1st fell on a Sunday this year. I love to plan my week on Sunday mornings. I time block my week, meal plan, reflect on what went well the past week, and how I would like the new week to look. BUT…as I sat down to plan, I felt a bit overwhelmed. I wasn’t ready to plan an entire year! I put down my planner and decided to take my hand-written list of books I read in 2022 and type them up in a Google document. This felt much more productive then planning a new year. I then listened to a workshop I signed up to attend.

Emily woke up late on Sunday. Her nose was dripping like a leaking faucet and her voice was hoarse. I tested her Covid, which was negative. I laughed that every time anyone is sick now, we automatically test for Covid. This was not even a thing three years ago, and now it was the first step in the illness protocol. Relieved that it was negative, but Covid or no Covid, she is not feeling well.

I had wanted to take her for a nice walk to start the new year, but the weather was dreary and cold AND she is sick. My plans must pivot and adapt to this new circumstance. Emily is not feeling well. I rolled with it. I fired up all the diffusers in the house, started a fresh warm bath for Emily, and got ready for a cozy day in. As I cared for Emily, we watched some football, and The Wiggles were in the background, and my mind began to wander. Each time I sat down to plan, fearful thoughts crept in and interrupted my flow.

I decided to open my iPad and write them down. I know that journaling is the fastest way to release the thoughts that my mind just won’t let go of easily. Writing them down seems to free my mind. After I wrote them, I decided the bold move was to share them. I knew this would be hard but I published it on my Medium account for others (or no one to see). Here is what I wrote:

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 are working overtime today AND that’s OKAY.

My thoughts were not surprising to me. They pop up often and unannounced. I think everyone that anyone caring for someone who requires complex care has similar thoughts. I am proud of myself for not trying to push them away. I am grateful that I am willing to embrace (and release) the thoughts. I do not allow them to paralyze me in fear and keep me from moving forward. As soon as I typed out the thoughts, I felt immediate release and freedom. No longer fearful of what the future holds, I was grounded back in the present moment.

I proceeded to plan my week, not my year. I am just not ready for that…yet.

Advocacy Her Way

Learning has always been something I enjoyed. I was the kid that could not wait to go to school. I loved the discovery and excitement in each new day. I continue to study, learn, grow, and be curious.

Throughout my educational journey, I have had some pretty wonderful (and not-so-wonderful) teachers, but my greatest teacher has been Emily. Her developmental and physical disabilities threw me into uncharted waters. I’ve had to figure out how to meet her needs to the best of my ability. Her limited communication skills add additional challenges. I have watched, analyzed, and studied her for twenty-two years. Her gestures, mannerisms, sounds, and movements. I look for clues, messages, and meaning in every move or action.

I wonder what is going on in her mind. I ponder what she would say if she could use words or signs. I watch how she communicates through noises that seem to all sound the same, but if you are paying attention, she is telling you something. My keen observation has made me an expert in Emily, or so I thought. Once I have a good grasp of her skill levels, language, or limitations, the manual changes.

If you follow me on Instagram, you may have seen the reel of her drinking out of her new cups. (Totally worth the watch because I was super proud of her learning new things at 22.) Well, she really doesn’t like the new cups, and she resists drinking from them. The problem is the Rubbermaid juice box cups have become increasingly difficult to acquire. She also ~~passes~~ throws her cups across the room as if she is Aaron Rodgers throwing a “Hail Mary” pass for a big win. Needless to say, she is tough on her cups.

This past weekend, Emily was home for an extended period. Her adult day program was closed Friday and Monday for the holiday weekend, and Emily decided it was a perfect time to school me. She decided to advocate for herself. I was working in the kitchen, and Emily crawled in there. She went straight for the heavy, tall spice drawer where I keep her supplies, and she opened it! She grabbed the handle, pulled it, retrieved a hidden Rubbermaid juice box cup, and handed it to me! I was blown away.

Last week I listened to Episode 123 of Brave Together. What struck me was hearing Angie Robinson’s son, Giancarlo, share that his mom has taught him to advocate for himself. I cried the ugly cry. I was overcome with grief that my daughter can’t advocate for herself. She depends on others to advocate for her, I thought.

It is funny how hearing a beautiful story of another unique journey can stir up grief in your own journey. It is all about perspective. Emily cannot stand up for herself with words and actions the same way Giancarlo can. I am reminded that comparison is the thief of joy. While Emily cannot speak up for herself and express her needs and desires in the same way as others, she does find ways to stand up for herself in her own way. It’s NOT consistent or perfect, AND that is okay. I was blessed this weekend when Emily advocated to get her old cup back, darn it!

After the shock wore off, I quickly rewarded her by filling her favorite old cup with water and the new “loathed” cup with apple juice. While I love her tenacity, determination, and self-advocacy, I must also prepare her for the future and help her adapt to change.

Thank you Emily. You continue to teach me. While your communication skills are not the same as others, you can advocate for yourself in your own way. You continue to advocate for yourself in your way, and I will fill in the gaps.

Recovering Puddle Jumper

I went from whimsy to woeful and back again in the past several weeks. I appreciate those of you that have come along for the wild emotional ride. Amid life being Lifey, I have neglected to celebrate some wins. Noteworthy things happened in the past few weeks, but I have minimized them. This is common and most of us have played that game. We diminish the hurdles we have overcome or downplay our successes. In Coach Jennie’s book Hilda, she refers to this as puddle jumping. When we accomplish a goal, it suddenly becomes no big deal, but when others do it, we celebrate their success.

Let’s share some of the cool things that are going on in my life and the lives of a few of my friends as well.

My friend, Elaine Pardi, had a wonderful interview published in Authority Magazine. The interview discusses five self-care practices that improve mental wellness. I was honored to be included in the article. Elaine shared the creative ways I steal self-care, 5 minutes at a time. I hope you check it out, leave a comment or two, and give it a clap.

Episode 123 of The Special Needs Mom podcast with Kara Ryska dropped this past week. Kara and I went deep into the disappointment and challenges on this journey. We also discussed tools that help us through disappointing times. You know our discussion included some gratitude talk.

“Gratitude reminds me that the sun is still up there. I may not be able to see the sun. I may not believe it’s still up there, but I know it is…when I cling onto gratitude.”

This podcast episode is a great listen for anyone, not just special needs moms.

I was invited to work on an episode of a new series created by Daniel DeFabio and Bo Bigelow for The Disorder Channel. (If you have Roku you can sign up for the channel from this page. It’s FREE!) The series, Pain Points was set to release on Festivus (December 22nd in case you were wondering) but it is streaming NOW. Pain Points takes serious obstacles and annoyances that impact the disabled and rare disease community and creates awareness in a fun and lighthearted format. It was such a fun project to work on and I am proud that I said yes. You can access The Disorder Channel through your Roku or FireTV device. A gift you can give me that doesn’t cost a thing is to subscribe to The Disorder Channel and commit to learn more about rare disorders and diseases in 2023. Rare is only rare because others do not know about it. The collective group of rare is over 30 million Americans.

A quote from last week’s post was shared as part of the GratitudeSpace daily text messages:

“Traveling with gratitude by my side has helped me survive the darkest storms. I feel a little lighter when I remind myself of something I am grateful for having in my life. It forces me to look beyond the immediate challenges and struggles. Gratitude gives me perspective, clarity, and hope.”

If you are interested in getting daily texts that include stories, quotes, and meditations all designed to build and strengthen your gratitude practice, text the word “Grateful” to 502-289-6799 or click on the link at Gratitude Space website to join.

Finally, just a couple of things that created a feeling of joy in my week:

My friend (and everyday hero), Julie, shared that her adult son, who has autism, was over the moon when he noticed a wrapped gift with his name on it under the tree. She pointed out that adults with unique needs often maintain that joy and jingle bells of the holidays. (Don’t tell her son the gift is clothes.) The childhood excitement around the holidays doesn’t stop for many of our unique adults. Isn’t that JOYFUL? Some of our kids never outgrow Santa, lights, Christmas music, the anticipation of presents with ribbons and bow. This is one of the big pluses in our unique journey. They never lose childlike wonder. What a gift.

Two fun songs I listened to this week that brought me peace and contentment. What I Have by Kelsea Ballerini. It is a beautiful song about counting the blessings we have. The other one is Count on Me by Bruno Mars.

That is all for this week. I appreciate you celebrating the wins and sharing the joys in the journey.

Gratitude Can Cut Through the Darkness

Storms will always be a part of life. There isn’t any way to avoid them. We pray they will pass quickly, but we are at their mercy. How do we ride out the inevitable storms? What strategies can we use to weather them with less damage? How do we come through the season of bad weather stronger and more resilient?

For me, the answer is practicing gratitude.

There are times when the clouds are dark and thick. The air is heavy and weighs us down. The darkness blocks out the sun. Is the sun still there? We may have been in the dark for so long that we forget how it feels and looks. The more we can find gratitude in anything during the storm, the more we are reminded of the warmth and comfort of the sun. As our gratitude expands, we can rise above the storm and maybe get a glimpse of the sun. Gratitude can cut through the darkness. Gratitude is powerful.

The past few months have been stormy. When I become confident the storm will pass, it dumps more rain and wind. The strategy I am using to cut through the turbulence is gratitude. This week I have decided to go all in on GRATITUDE. Well, gratitude from A to Z to be exact! (Thanks Chris Palmore for sharing this gratitude tool.) I am pretty sure this hefty lift will have me feeling a little lighter once it is completed.

A- Aunts: We all have one that made life better at some point (blood or honorary)
B- Ben my four-legged Boo
C- Caregivers: All those who have supported my family and others in the past and future
D- Daughter: Emily has given me more than I could ever give you
E- Energy (Everything is energy)
F- Files (for nails, projects, records…any file is fine)
G- Gravy (biscuits and gravy on a cold Sunday morning..YUM)
H- Home and Heart (where family, love, and connection reside)
I- Injections (the ones that save lives from the flu, illness, and cancer)
J- Justin (of course)
K- Kindness (given or received it’s pretty cool, and it’s FREE)
L- Laughter. Love. Life. Learning.
M- Music and Meditation (I couldn’t pick one)
N- Novels and EQUALLY Noise-Cancelling Headphones
O- Opera (memories of my mom, Pat)
P- Pats (all the Pats: My mom Pat, Patt my second mom, Patty my boss, my dear friend Patti)
Q- Quiet (Something that brings me JOY)
R- Rest and Respite
S- Smiles
T- Time
U- Utilities: electricity, gas, water, internet, cell phone
V- Van because it provides Emily a way to explore and takes us on adventures.
W- Wipes…My life has lots of messes, and wipes make clean-up easier.
X- Xanax (Not for me. I am grateful this tool helps with Emily’s anxiety, if only a bit)
Y- You: Each of you read what I write. You share your struggles and joys. You make a difference in my life.
Z- Zebras: The official symbol for rare disease in the United States. (Show your stripes for rare)

Traveling with gratitude by my side has helped me survive the darkest storms. I feel a little lighter when I remind myself of something I am grateful for having in my life. It forces me to look beyond the immediate challenges and struggles. Gratitude gives me perspective, clarity, and hope.

This exhaustive list definitely boosted my spirits. I hope something on the list lifts your spirit or brings a smile to your face. If you are new to practicing gratitude, it may seem silly, futile, or too difficult, but give it some time. Try making a short list. (Baby steps.) Keep practicing because the more you practice gratitude, the better you get at it. One day, it may become the best tool to add a little sunshine and warmth to your cold, dark days.

I See a Little Whimsy on the Horizon

What a difference a day makes, I thought. Today I feel like I can breathe again. There is hope on the horizon. No, nothing has really changed, except maybe my attitude. I chose to stay in the trenches for the past few weeks without trying to climb out. I felt isolated, sad, and overwhelmed. Embracing these emotions and never trying to shift them.

When I woke up on Monday, I challenged myself to begin working on a solution rather than moping about my problems and what seemed “wrong” with everything. I know my thoughts create my emotions, and I also know that while November was a tough month, I fueled the fire by meeting it with reactivity. The storm would have been easier to ride without adding optional pain and suffering. While I know this, I do not always do it. Once again, I disprove Oprah’s interpretation of Maya Angelou’s quote, “When we know better, we do better.”

How am I showing up differently this week?

I connected with the Nine Extraordinary Humans (The Cabin Crew) for a Zoom call on Monday night. The positive energy of each person comforts my soul.
I made time to connect with good friends on the phone (thank you Gail and Patti for your time to chat. Also, for your concern.)
I had a new caregiver come on Monday afternoon as well. She doesn’t drive, which is a bummer, but she is young, vibrant, and energetic. She took Emily for a walk to the nature center and was willing to come back on Wednesday too. On that trip, they walked to eat and shop. The caregiver reported that they only toppled 2 displays with Emily’s wheelchair, and Emily loved it. (She may be perfect for Emily.)
A couple Todd and I have not connected with much over the past few years invited us to dinner. We said YES instead of our usual NO to anything during the week.
I made sure to give myself quiet time each morning and evening. Just a few minutes to read, write, or daydream. I read the daily passage in Simple Abundance and made time to journal also. This was my most impactful action of the week.
I left my house. Twice this week, I ran an errand for a few minutes and left Todd with Emily.

I also made a decision to bring on the joy. I would consciously seek joy, create joy, and choose joy. Pause Breathe Reflect started 31 days of JOY on December 1st. The timing’s perfect! I committed to playing this week and laughing more and crying less. Emily and I have been playing music in the morning that is fun and silly.

Care and support for Emily have been a challenge since Covid, and it has not improved significantly, but I will stay positive. Leaning into the possibility that new caregivers are on the horizon, and that full-day adult programs will be available. The future will not always look like this. Things will change. Emily will find people and places to fill her day in the future. She will not be home with me 80% of the time, and I will get more time for myself. I am clinging to that hope and possibility.

As I write this in my cacophonous surroundings, my feathers are not ruffled, and no nerves have been hit.

When I began reading 3musesmerge earlier this year, one of Gail’s love letters was defining cacophony and challenged her readers to use it in a sentence. Of course, I accepted the challenge. I recently told her that since reading that post almost every book I have read has used the word. I am beginning to wonder if they had read her love letter too. That thought created joy. I feel my joy bubble beginning to fill again!

May this week be full of whimsy, wonder, wander, and wellness.

Not the Sanctuary of My Dreams

Why isn’t the joy bubble refilling faster? I thought we were writing something whimsical and fun this week? What is wrong with you? Snap out of it. (The A side of my chatter) Give yourself a break. November is already a weird month for you. You often get the blues around this time of the year. You are allowed to be woeful for as long as you need. (The B track.)

The week was long. Emily did not bounce back quickly from her cold bug. (She was too sick for her adult program but well enough to be extra spicy and saucy.) She made it clear she was not happy being trapped in the house for a week. I get it Emily—I totally get it. The cough, the teeth grinding, and rhythmic sounds seemed to bounce off the walls of our home and grate on my nerves. The earbuds I often wear that dull the noises did not seem to do the job. The earbuds are not to blame but rather my inability to not be reactive to her noises. I was feeling isolated. Todd was camping, and Justin had been in his room all weekend because he was sick too. I was caring for Emily solo. Thanksgiving dinner was thwarted due to illness. I was having a bit of a pity party of one. (This is not a state of mind to encourage or coddle.) Late Saturday night, after I tucked Emily into bed, I decided to watch a movie. It was between a new Hallmark movie I had recorded and a documentary about caregiving. I decided to watch the documentary Unseen: How We Are Failing Caregivers & Why It Matters. (Probably not the best choice considering my woeful state. I may have been encouraging my woe a bit.)

A parent in the movie says something to the effect that our home is supposed to be a sanctuary. For a parent with a severely disabled child, it often feels like a tomb. A tomb is at least quiet, I thought but realized his words hit a nerve. There was definitely something in his words that I felt at my core. It resonated with thoughts and feelings that were below the surface. I have always desired for my home to be a sanctuary. I wanted a home that was safe, quiet and an escape. A place to want to be above anywhere else.

When I was young, I could not wait to leave the house. I hated being at home for many reasons. While my brother and sister found comfort there, I did not. Our house was cluttered and disorganized. It was less than 500 square feet, and I could not escape the noise. The television was always on, and our dogs were usually barking. My parents had friends drop by regularly. It was the antithesis of the home I wanted to create and live in one day. My ideal sanctuary would be calm and quiet. The furnishings would be comfortable and stylish. Beautiful candles would be burning, and essential oils would billow out of diffusers. My home would be a quiet place where I could read and write. It would be a refuge and escape from the outside world.

For years I have strived to create that environment in my home. Before children, I think I succeeded to some extent. Once Justin and Emily were born, not so much. As Emily gets older, I seem to be failing miserably at creating the home environment of my dreams. The television is always on. It is either on The Wiggles to keep Emily comforted or on volume 11 to drown out Emily’s vocal protest of watching something other than her shows. Emily is rarely quiet. She is in constant motion. She crawls around the house, at lightning speed, throwing things off tables and counters. Emily throws everything. She opens the drawers and removes the contents. The dogs are generally barking at something or another. There is comfortable furniture underneath dog toys and blankets, but burning candles is rare (and unsafe) with Emily around. It is similar to the house of my youth. The home I escaped from as often as possible.

Isn’t it funny what we bury below the surface? This film sheds a light on the fact that caregivers are crushing under the pressures of caring for their loved ones. It shatters the illusion that caregivers like to pretend they are doing it all and doing it well. It highlights the lack of services, especially for our children as they get older or those that require personal hygiene assistance. It discusses the need for more respite and qualified caregivers to fill the damn-sized gaps in our care plans. None of this was news to me or shocking to see. What surprised me was that as the movie ended, I realized I was mourning the lost dream of living in the home I always wanted. It is not the sanctuary of quiet and comfort I dreamed it would be. My home is not the place I want to run to for safety and comfort. I must mourn and grieve the loss of this unmet expectation, and come to a place of acceptance for my reality. Once again, I conclude, I have some work to do.

Note: I recommend that anyone in the trenches of caring for a loved one watch Unseen: How We Are Failing Caregivers & Why It Matters. Those who want to understand or support a caregiver definitely should run to watch this film. I know what needs to change to make our caregiver lives better, but I do not have the time, energy, or resources to battle the problem head on. My opinion is that we caregivers need an army of caring individuals to step up and fight the battle for support and resources on the frontlines while we continue to care for our loved ones with all we have. We are barely able to manage the immensity of daily challenges and obstacles.

Whimsy to Woeful

It’s quickly approaching 1 am. I am sitting on the floor in the living room, surrounded by a sea of towels. A stack of clean. A stack of dirty and a stack of—I am not even sure at this point. Emily is leaning her head on my chest, and we are covered in a big towel. The sound of the washer and dryer faintly hums in the background. The Wiggles project from the television in Emily’s line of vision. Todd and Justin tapped out hours ago. Even Ben has exited the scene to snuggle on the sofa with Coco. I am exhausted and frustrated. It isn’t supposed to be like this, is the useless thought swirling through my mind.

The weekend was full of fun and friends. I reunited with The Country Kickers on Saturday night. (I bet you didn’t know I am a retired dancer?) In 2007, on my quest to make new friends (more on that: Grief Within the Beauty), I discovered line dancing again. I experienced a long pause from hobbies for several years after the kids were born. It was great to get out and do something for me after so many years. This new hobby introduced me to the world of dancing for an audience. The Country Kickers danced at the local summer fairs, and we also performed for veterans, seniors, and children. I made new lifelong friends. They accept, support, and encourage me, and they embrace Emily completely. They have become my extended family.

On Sunday, Todd and Emily had backyard projects to begin. I was heading to meet up with a large group of We Are Brave Together moms. Our first Friendsgiving celebration was about to go down. The sun was bright, and my mood was light. I relished an afternoon of fellowship and delighted in the community of moms that understand the struggles and joy in this crazy, unexpected journey.

I arrived back home to a quiet house. Todd and Emily were on a mission to Home Depot to get extra supplies. The ones you never know you are going to need the first (or second) time you go to the store. I seized the opportunity to just relax on the sofa with the pups and play a little Word Crush. I began planning my weekly writing. I think I will do something light and whimsical. I was feeling young and carefree after a weekend of laughter, good food, games, and even a gratitude circle—Yes, our group of We Are Brave Together moms wrote gratitude cards. We placed our gratitude notes in a jar. The best part was pulling out the cards and reading them aloud.

Did I mention I got a book in the mail today from a friend? Receiving mail on a Sunday was unexpected. The gift from a friend capped off a perfect weekend. The book entitled Watering the Soul is full of poetry and prose by Courtney Peppernell. My joy cup was not only filled to the tippy top but spilling over the edges a bit.

As I got Emily ready for bed, I noticed her nose was runny, and she was beginning to sound a little hoarse. I figured the Santa Ana winds were aggravating her allergies. I put her to bed and texted the new caregiver that was planning to start on Monday. I wanted to confirm and answer any questions. By the time I hit send, the coughing had started. It was loud, violent, and unrelenting. Oh no! Todd and I bolt into the bedroom to find Emily vomiting. Her bed, bears, and hair were covered. And so it begins…

As I lower my sleepy, sick baby girl into the tub, I begin to feel my mood sink. I hold back tears. My grand plan of moving Self-care Sunday to Saturday this weekend to adapt did not go as I imagined did it? I comb out the chunks of vomit from Emily’s long locks as I comfort her. Todd begins stripping the bed and assessing the damage. Justin is on the hunt for another waterproof pad for the bed. The washer starts chirping, and the dogs are pacing.

The bed is ready once Emily’s tummy calms down, but I know it will be hours before she is ready to rest and relax. More laundry and outfit changes will follow. The washer will be working overtime. I did manage to secure Emily’s hair to prevent it from getting caught in the crossfire of the episodes that followed. A small victory on a dark night. Emily and I sit on the floor, surrounded by the smell of eucalyptus and lavender that is emerging from all of the diffusers. I text the new caregiver to cancel and make a mental note of other things to cancel in the morning. In the darkness, listening to noises all around me, my joy bubble bursts.

As darkness falls on the day, and I write before the sun comes up, I reflect on the unpredictable journey. I planned to write all things whimsical this week, and now my thoughts are woeful. There is no whimsy in sight. I know the woes will soon pass. I will rise up grateful for another day. I will water my soul (thank you Kimberly) and begin to refill my joy bubble, but first, sleep.

Choosing Guilt Improved My Mental Health

Ever since I was a child, I prioritized the needs of others over my own needs. I never wanted to let others down. My desire to meet the needs of family, friends, and even strangers generally came before my willingness to recognize and care for my needs. On the rare occasion that I did something for myself, I hated the guilt that came along for the ride. I avoided the feeling of guilt at all costs.

There was a consequence to my guilt avoidance. I developed an intimate relationship with resentment. When I chose to meet the expectations of others at the expense of my desires, I resented my choice. Resentment is defined as bitter indignation at having been treated unfairly. Who was treating me unfairly? No one was forcing me to choose them over myself. I was the one acting unfairly toward myself, and I was the one that was suffering the consequences of my resentment.

Forty-plus years of regularly choosing resentment over guilt negatively impacted my mental and physical well-being. I held the resentment tightly. I did not let it go or express it, and the result was misdirected anger and bitterness toward those I cared about. This was unhealthy for me and unfair to my family and friends. It wasn’t until the side effects became hard to ignore that I began to see the downside of coddling and cradling the resentment. I experienced increased anxiety, mood swings, and disturbed sleep.

The negative impact of holding and suppressing negative emotions, like resentment, can lead to:

Anxiety
Depression,
Mood disorders
High blood pressure
Sleep issues
Emotional Dysregulation
Burnout (This is a BIG one for caregivers)

(Learn more about the effects of resentment on the mind, body, and soul in this informative article at verywellmind.com.)

As I learned the importance of caring for myself, I began to do more things that made me feel guilty. The emotion of guilt was not a fun feeling to have. It was uncomfortable and unpleasant, but I felt better. It felt lighter than feeling resentment. The guilty feeling began to dissipate faster as I practiced accepting the emotion rather than trying to judge (or avoid) it. I was able to process the guilt more quickly. I believe that as I learned how to love and care for myself, the feeling of guilt was replaced with self-compassion.

When we give ourselves compassion and empathy first, we have more to give to others. We are built to be empathetic and compassionate, and it starts with us. Practicing self-compassion requires us to listen to the internal voice inside each of us. We are curious about our desires and wants. We consider our needs when we make a decision or choice. I am not a therapist, but I have experienced the positive impact of self-compassion on my mental health. Each time I make a decision that benefits my mental and physical wellness, I feel better. I am lighter. I have more energy to care for others. My empathy and compassion expand. Dr. Gábor Maté (a physician specializing in trauma and addiction) says, “The next time you are struggling to make a decision, recognize the feeling that comes up. If your decision comes down to feeling guilty or resentful–choose guilt.”

Note: I highly recommend a recent Mindfulness Exercises podcast episode that shares an interview with Dr. Gábor Maté. This is a powerful interview. Maté discusses how practicing self-compassion expands our empathy and compassion for others. There is a lot of goodness packed in this short episode.