Conversation for Change

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.

Retreat or Workshop? Nope. It Was Magic

Did I agree to attend a workshop or a retreat? This thought came up less than a week before I would be flying across the country to spend 3 days in a cabin in the woods with nine perfect strangers I had never met in person. Didn’t I read a book like this by Liane Moriarty? Things didn’t exactly go well in the book, did they? You are being ridiculous. You always say that strangers are just people you haven’t met yet. If this is a workshop, I am not sure what I really have to offer. I can share a story. I am not a presenter. Why did I say yes? Welcome to the humor and judgment of my inner chatter.

I am glad I said YES before my thoughts could talk me out of it—thank you Shonda Rhimes.

I did not let my fear or insecurity sway me. I got on the plane and headed to St. Paul, Minnesota. After a long day of travel, I was retrieved from the airport by Jean. She greeted me with a huge hug and I dropped my luggage into the back of the car. We set off on a 2.5-hour drive to the cabin on the lake in Hayward, Wisconsin. Jean and I both hear song lyrics in every conversation. Our conversation (and singing) flowed with ease and any lingering fears dissipated.

It was almost 11 pm when we arrived at Elaine’s cabin. Bobby, DJ, Karen, and Elaine were drinking coffee and tea at the table. There was laughter (and magic tricks). At that moment, it felt like I had just arrived at a family gathering. Any remaining doubt left my body. My roommate, Sharon, was already asleep. I crept into the room quietly. I retrieved my pajamas and toothbrush. I got ready for bed and I crashed hard.

In the morning, I met Chris and Sharon. The entire group drank coffee on the dock of the lake watching the sunrise. As the day progressed, Amy and Gail joined the Cabin Crew. Each person presented an activity, presentation, or talk.

From the raw conversations and openness of each individual, to the unique gifts each brought to the table for us to feast upon, it was an incredible experience. The eclectic and electric energy was palpable. The immense joy and gratitude I experienced were overwhelming. Emotions swelled up from within and rolled out of me in tears. Crying and smiling are constant companions in my world. When I am happy, I cry. When I am sad, I cry. When I finally reach a real person when I call the insurance company, I cry—-I am a crier. I shed a lot of tears.

The weekend was filled with incredible food that was all prepared from scratch by our master chef, Sharon. There was carpool karaoke during trips to the store to grab just one more missing thing. There was magic, art, nature walks, personal shares, exploring words, communication styles, planning, tech talk, gratitude practices, listening circles, sunsets, campfire, meditation, morning altars, great food, laughter, and fun.

There is no way I can adequately describe each person in a short blog. Let me introduce the cast of Nine Extraordinary Humans:

Elaine Pardi: The Communication Stylist, nurse, cofounder of Animals Connect Everyone, and our workshop/retreat hostess. Her CARE Assessment program is exceptional.

D.J. Elhert: Creator of Portfolio of Power (POP), magician, tech guru, and the man to call to fix anything (including a light fixture Sharon and I managed to break in our room—Lucy and Ethel were here.)

Bobby Kountz: Author of The Someday Solution, mentor, speaker, artist, writer, and TheEarthHeARTist. A mentor, cheerleader, and friend.

Jean Caples: Cofounder of the nonprofit Animals Connect Everyone, nurse, caregiver, and best chauffeur ever. She sings and dances too.

Sharon Buckler: Writer, gardener, chef, and more. She grows the food and makes it taste delicious. Farm to table master and a great roommate. (When we aren’t breaking things.)

Amy Graham: Licensed counselor at Cityscape Counseling. She is a registered expressive art therapist. She is also the gifter of heart-shaped rocks she finds on her beach walks.

Gail Boenning: Author of Wandering Words and others. She publishes several love letters each week at 3musesmerge. After I read her daily letter, I will ponder, wonder, or wander, depending on the day.

Karen Hoffman: Creator of Living on Purpose. She has created card decks for adults, children, and women in the process of fertility treatments.

Chris Palmore: Creator of Gratitudespace. He has authored several books on gratitude, including The Mechanics of Gratitude, which I have written about in a previous blog.

It was a fabulous weekend of creating, collaboration, and connection. It was magic. It was magical.

Special Gratitude Note: I want to acknowledge and thank the person who started the chain of events that brought these extraordinary humans together, Michael O’Brien. Without his daily group meditations, we may have never connected. My meditation and gratitude practice has expanded and blossomed since I met Michael. He is the starting point for many relationships that have crossed my path in the past two years. Michael has quietly encouraged me and others to share our voices and ripple them out into the world. I am immensely grateful for his encouragement to unmute and let my voice be heard.

Caregivers Require Care Too

Caregiving is the most stressful and difficult job there is. I remember when my son was born. I delivered him and 24 hours later, my husband and I were sent home to care for this precious human on our own. Our doctor and friends referred us to reference books to guide us. The manuals were overwhelming and confusing and our son was healthy and typical. Emily was born less than 2 years later. The manuals I had were utterly useless, except for kindling on a fire. They were not going to guide my husband and I through the uncharted territory we found ourselves sinking into. Each child is unique. Some are medically fragile and require multiple procedures or assistance for feeding, communicating, or moving. Some children look “fine/typical” but have issues not visible on the exterior. This further muddies the murky water.

Having a child that has severe developmental delays, or a rare disorder is daunting. We are thrown into a world of acronyms: OT, PT, IEP, GAIT trainer, NG tube, MR, MS, GD (Globally Delayed or maybe a word that would have you throwing coins into the curse word jar, depending on the day), DD, VI, SI. to name a few. Dr. Google is suddenly our new BFF and late-night call. When I started on this journey, I had Yahoo to help me with my searches. There were no Facebook groups or support networks. I felt isolated. 22 years later, it still feels isolating at times.

Supporting caregivers is not easy. Many will not ask or seek support or help. Caregivers have all the excuses:

No one will understand my situation.
My child is healthy except for ________.
I don’t have time to get support.
I don’t want to be a burden to someone else.
I don’t want to bring others down.
If I start talking about this, I will just cry and never stop.
My child is alive, so I should be happy. I am luckier than other parents. (Isn’t that one a doozy?)
I have no one to leave my child with so I can get a break.
It’s my job to care for my child.
My son/daughter “just has” or “only has”: ___________.
Other parents do it alone. I should be able to as well.

These are just a few of the excuses we use to not accept, seek, or ask for the support we desperately need. Caregivers are tough, stubborn, relentless. They are problem-solvers. They are protective. They put everyone else above themselves. They do it mostly without complaining or asking for help.

This works well until it doesn’t. The reality is none of us are meant to do this alone. No one is equipped to handle the amount of stress we put on ourselves. Often our children require more time and attention than one person can provide. We are not created to care for others all the time without taking time to rest and recharge. We think rest is optional, but the truth is rest is vital.

When working with a client on the importance of rest, I often use our cell phone as an example. If our cell phone is down to 10% battery life, we freak out. We panic to find a charging cable and a source of electricity. We worry about the battery dying and missing something important. A dead cell phone is useless. We need to think of ourselves as cell phones. We cannot continue to give without taking a moment each day to recharge. It is not sustainable. We will crash and burn. If that happens, and it will, then who will be there to take care of our loved ones that we fight for each day?

I am a caregiver first. This is how I define myself. In order to maintain this title for years to come, I had to redefine the meaning. Caregiver first means I care for me FIRST. It is the only way I can continue to care for the family I love.

My self-care is rarely spa-inspired or glamorous. I drink more water and less wine. I schedule well-checks for myself. I ask others for assistance without feeling guilty. I refuse to beat myself up or feel guilty for putting me on the list. I no longer suppress my emotions. I release my anger and sadness along with my joy and happiness.

I take time to charge my battery a little each day. By doing this, I have become a better caregiver. I am more productive, powerful, and positive. It is my mission to help caregivers discover the magic of self-care. Caregivers caring for someone with a rare disorder or disability are a force when the battery is low. Imagine the collective power on a full charge.

Consistency: Built From Baby Steps

I was recently asked to share how I have consistently shown up for myself and the strategies or techniques I practice to create new habits. It hasn’t been a quick process. I only add (or subtract) one thing at a time. I have implemented change by practicing one small habit consistently. For example, getting up and drinking a glass of water before I do anything else. As one change became more habitual and required less redirection, I added another small change. When I begin a new routine, I strategize ways to make it as easy as possible. It is normal to resist change. We love routine. Our minds are happiest when we do not surprise them. There are simple ways to make it easier and attain great success.

There are five ideas or principles that have aided me on the journey.

Take it SLOW. My meditation teacher, Michael O’Brien, often says that slow is fast. It sounds counter-intuitive, but it has been critical in successful changes for me. When we try to change something quickly or go all in, often our brains throw a fit and resist. It becomes too hard to sustain, and we quit. Slow progress creates an environment that fosters the success of change over time. We can keep pace. We can easily add an extra glass of water without much resistance from the brain. We take one small action and build upon it slowly. Over time, we get farther faster. Slow is smooth, and smooth is fast.
Our excuses are our reasons. All the excuses we make not to eat healthily, work out, or go to bed at a reasonable hour are ALSO all the reasons we would benefit. Think about that. I talk about this principle in detail in Exchange Excuses for Reasons. For example, claiming you are too overwhelmed and stressed out to take care of yourself is the reason why taking care of yourself is critical.
Have clarity and specificity in what you would like to accomplish. Our brains do not like vague statements or plans. There is too much room for interpretation and justification. If I say I want to improve my relationship with Todd, it is important to create actionable steps to make it happen. I need a map. One actionable step could be starting each day with a cup of coffee and a few minutes of conversation to connect. This step is tangible and measurable. It is an actionable first step that can be built on with other actions.
Motivation is not mandatory. That’s right, we can do things and not be motivated. I get up in the middle of the night to let my dog out to use the restroom. I show up to work when I am scheduled. I drop off my daughter at her day program. I stop at the red light. I am not motivated to do most of these things EVER, but I still do them. Lack of motivation is not a problem and there is nothing wrong with you if you are not motivated. As we begin to practice new habits, we are not going to want to do them. It is uncomfortable and unfamiliar. Resistance is what change feels like. Expect headwinds and embrace that they are a sign you are on the right path.
Building integrity with ourselves. Self-accountability is another tool that is paramount in showing up consistently and attaining our goals. Self-accountability is not an easy tool to develop. It might be best to start out in a group that helps hold you accountable. We tend to show up for others more consistently than we show up for ourselves, but over time we want to teach ourselves the gift of integrity. Like any skill, the more you practice self-accountability, the better you will get at it.

Consistency is built one day at a time. It is not a linear path. Falling back on well-established habits is normal. Sometimes you will get off course, but the faster you come back to your practices, the faster you will be back on track. Soon you develop habits that make the new path smoother. Slow is fast and fast is smooth.