Conversation for Change

Hard Doesn’t Mean Don’t

As Todd and I pack and prepare for a three-week road trip anxiety and fear are joining the party. My mind is racing with all the things to prepare at home. I am having thoughts about forgetting to pay a bill or invoice for my day job. I am having thoughts about forgetting to pay a personal bill or forgetting an instruction for my family that is staying at the house with Justin. Plants need to be watered. The chickens, our dog, and the fish need to be cared for and fed. (My son does not even know the name of our fish, so the worry is warranted in my mind.)

My mind is thinking about what we must bring to make it more comfortable for Emily and meet her unique needs while we are away from home. I wonder if we will be able to fit everything in the van. I worry it will all be too much for her and she will be agitated and upset the entire time. My brain is creating all sorts of BS obstacles and making them extra theatrical for dramatic effect.

It isn’t all bad. I am visualizing great things happening on the trip. I can see her loving it and rising to the occasion. I visualize her enjoying the car ride and the people and all the action. I am excited for her to meet my accountability group in Dayton, Ohio. We will get to spend 48 hours together. I am excited to meet some of these women for the first time in person and also for them to meet Todd and Emily. They have listened to Emily for the last two years in my Marco Polo videos. I am happy they will meet her.

We will experience challenges. There are things that will not be easy. We will face obstacles of access with Emily and her wheelchair. We will be in places with restrooms that are not adequate to meet her needs. Lifting and transitioning Emily will be physically tough on us both. We will have to help her manage her anxiety and fear as we take her out of her routine and comfort zone. (Adapting to change is not one of Emily’s superpowers.) She is likely to be very loud and possibly throw some temper tantrums. There will likely be vomit and poop (welcome to the world of many special needs families).

I know Todd and I will grow through this trip. We will learn what works and what doesn’t. I know this adventure is going to be whatever we make it. If we see challenges as opportunities to learn and grow, we win no matter what happens. No matter what unfolds, we will make memories and have stories to tell for years to come.

Ripple the Ripple

This past week I started The 20 Ripple Challenge. I do most of the things that the challenge required, and daily random acts of kindness sounded great. How can that sound bad? While this is posting on day 8, and it is NOT too late to join. If you are interested in spreading some kindness and giving yourself some love and care, join the movement.

I found the Pause Breathe Reflect movement on the Clubhouse app. I was about ready to delete the app when I discovered The Miracle Morning Room. I was becoming disillusioned with the rooms on Clubhouse, and it was not serving me. This room got me curious and changed my thoughts. This room has expanded my circle of amazing, kind, and incredible humans that are changing the world. One of these people is Michael O’Brien. Michael is the founder of the Pause Breathe Reflect movement. If you do not know his story, I encourage you to check it out.

Here are the details of the challenge:

Dates: June 21 to July 11

Start your morning with a glass of water or celery juice
Reach out to someone and express why you’re grateful that they are in your peloton
Complete one random act of kindness per day
Move your body for at least twenty minutes per day (from walking to yoga to spin class and beyond)
Take one Pause Breathe Reflect Mindfulness Break via Clubhouse community or one on your own
Write out three wins for the day

If you want to know more, go to 20 Ripple Challenge

If you decide the challenge is not for you, I encourage you to think of a way you add joy to someone else today. Can you express love and support for a person that has influenced your life? Find easy ways to donate or ripple goodness into the world. It can be as simple as smiling at a stranger as you walk down the street. You can thank the clerk at the checkout. Put away your phone and connect when you are in a room with others. Give yourself a little love too. Move your body for a few minutes today. Go get a big glass of water and hydrate your body. After the past year, we can all benefit from deeper connections and love for ourselves and others. Go out and inspire. Go out and support. Go out and be the change.

Bumps in the Road and Holding Hands

All my husband wanted for Father’s Day was to go camping for the weekend. He planned the location and we got to prepare for the trip. We would have Emily with us so we decided to take the trailer. It was also going to be warm so having the AC inside the trailer would be nice. Planning and preparation for camping take time and energy. Camping with Emily adds additional prep time and challenges. I planned the meals. I shopped and packed everything we would need for 4 days “off the grid”.

I love this. Looks like an elephant to me

We planned to stay at a site in Alabama Hills. Somehow we missed the turn and kept driving up the road. The road got narrower and windier as we climbed. There was no place to turn around and we ended up at the base camp for Mount Whitney. We had no choice but to drive through the loop to get back in the right direction. Todd got the trailer through the loop safely to the dismay of hikers watching the madness. There were only a few inches between the back of the trailer and several trees. It was a scary and hair-raising 10 minutes. The drive took a toll on both the truck brakes and my nerves.

Thirty minutes later we made the correct turn into Alabama Hills. It is a beautiful place and I cannot wait to go back during cooler weather. The rock formations and surroundings are beautiful. Alabama Hills has been the setting for over 400 films including Gladiator, Django Unchained, Iron Man, and Man of Steel. The rock formations are incredible and it is easy to see why they would be the desired location for so many films.

We were all set up by sunset. We did not realize we needed a permit to cook outside until we got there. After our long drive, I was not up to getting back into the car to go get one. It was also too hot to cook inside. We ended up having a dinner that consisted of Triscuits and watermelon. Emily feasted on her favorite PBJ. Emily went to sleep easily which was great. Todd and I were tired and asleep by 10 pm.

We were awakened by a fellow camper at 1:30 am. That was jarring. He said there was a fire over the hill. Todd assessed and determined we were safe. We did not have any service so I could not reach out to anyone or check the news. Todd was able to go back to sleep with these circumstances. I was not. My mind was racing with “what if” thoughts. You know the ones. What if we should leave? What if we have to evacuate quickly and we have trouble getting Emily out? I worked at settling my mind as I watched lightning strike in stereo all around. I have never seen so many lightning strikes hit the ground. It was both scary and amazing to watch.

Emily was up at 5:30 and Todd got up so I could get a little sleep. At 8:30 am the sheriff came to tell us the area was under mandatory evacuation now. He told us we had 15 minutes. Todd explained we have a special needs child and we would never be ready that fast. He was receptive to Todd’s request. We packed up in record time and moved to a site a few miles down the road and across the 395. There was nothing pretty about our new site which was next to hills that are mined for dolomite. What is dolomite anyway? I will Google that later. It must require lots of heat to form because it was a good 10 to 15 degrees hotter at the new site.

We spent the next 48 hours mostly inside the trailer with the AC cranking watching Emily delight in doing nothing. She was a Happy Camper as they say. It reached 115 on Saturday afternoon and the wind was intense at times. We were safe in our bubble trying to will the trailer to cooler to maintain a temp lower than 85 degrees and praying the generator would keep chugging along.

Todd got what he wanted for Father’s Day. He got to camp. Was it the ideal trip? Not exactly, but it was an adventure. From taking our trailer where trailers are not supposed to go, to getting evacuated due to fires, we will not forget this trip. We made some memories as a family and isn’t that what life is all about anyway?

Saying Yes to Others is Saying No to Ourselves

I have always been good at showing up for others. Most caregivers are. Showing up for ourselves is another story. Why do we do that? Why do we put what everyone else needs and desires above our own? I was reflecting on this and had some thoughts:

If I say no, I will let someone down
They depend on me
I will feel terrible if I don’t help
I owe that to them
If I can do it, then I should do it
It’s selfish not to help others
I want them to like me
My daughter needs me
If I don’t do it, who will

These are just a few of the many reasons we say yes to others. The problem is when you say yes to one thing in your life, you are saying no to something else. This is how it works. If I agree to do something for someone at a time when I usually journal or exercise. I am taking the time away from doing those things. If I agree to stay up past my usual bedtime to go out, I am saying no to my sleep. We are putting others’ needs and wants before our own.

What if we flipped the script? What if we calendar our needs first and then fit other’s needs around our plans? What would happen? As you can see, I love asking questions. It is by changing how we look at being accountable that we can find a way to do it for ourselves.

What is accountability anyway? It is defined by Merriam-Webster as the quality or state of being accountable; especially: an obligation or willingness to accept responsibility or to account for one’s action.

You see we are responsible for our actions. We all have the same hours in the day to get things done. We get to decide how we use them. I do not HAVE to care for my daughter. I do not HAVE to show up to my job every day. I do not HAVE to cook dinner for the family. These are all choices that I make each day. The key is learning to show up for ourselves first and then for other people.

A little over two years ago, I decided that I was going to live by the Merriam-Webster definition of accountability. I was going to take action for my choices and not blame other people or my circumstances. I could no longer use other people as an excuse for not caring for my body, mind, and spirit. I designed how to make that work. I decided to get up earlier and go to bed earlier. I decided to sacrifice TV and wine time for sleep. I did not sleep until Emily woke up and called for me to get her out of bed. I started getting up hours before she usually does. I use the early morning hours to journal, plan my day, meditate and stretch. I use that time to visualize how I would love my day to go. I visualize what obstacles may come up. Every day is not perfect and things change. (Read my post My Superpower: Adapt and Pivot for more on.)

Something incredible happened when I showed up for myself first. I had more time for others. I was happier. I was calmer. I was thinner. I began to feel more joy and gratitude in caring for Emily rather than resentment. Yes, I had come to a point where I had placed everyone and everything above me and I felt resentful, hopeless, trapped, overwhelmed. It is hard to share that with others. I am not proud but I own it. I accept responsibility for how I was showing up. I am accountable for my actions in the past, in the present, and the future.

Relationship Built on Grace and Grit

I met my husband, Todd, when I was 14 years old. We went to school together and over time developed a friendship. When my dad died during my junior year, Todd was there for me. He never tried to fix anything and was there to listen. I was not interested in him as a boyfriend. I remember my sister saying, “Todd is really nice and cute. Why don’t you go out with him?” My response was, “if you think he is so nice and cute, why don’t you date him?”

In retrospect, she saw the person he was before I did. Todd was always sweet and kind but I never thought we would date. I am not sure to this day at what moment we went from friends to dating. We both love music and we attended many shows together in high school. These shared experiences led to us dating at some point. I remember our first date was a Beatles convention in Los Angeles.

Our relationship was built on a friendship first before there was an attraction. Maybe our friendship helped prepare us for the challenges of dating. We both brought our share of baggage to the relationship. I had issues from losing my dad at a young age. I had always been overweight and was insecure. Todd struggled with addiction and emotional issues. We were two young, inexperienced, troubled teens. Not the ideal starting foundation for a lasting relationship but I believe our combined struggles and adversities made us tough and tenacious.

Over the years we have grown together. We have grown apart at times. We have relied on the other to be strong when one of us is weak. It has not been easy. There were times I did not think our relationship would survive. We have faced financial, physical, mental, and emotional struggles. We have raised two children. Emily has a disability that has her dependent on us for her care.

Raising children is difficult for most couples. If one or more of those children has any disability, the task and challenges become greater. Most couples that have a child with a disability divorce. They do not survive the added challenges and obstacles. One parent always does more and it is never 50/50. The fact that we recognize this is key. We know that one of us is always contributing more than the other in some way. Todd works hard outside of the home providing for us financially. I spend more time inside the home which includes the majority of Emily’s care.

In the evening, we work together. We make a great team and our synchronicity is incredible in our care of Emily. We both help get Emily ready for bed and handle medications, teeth brushing, and other hygiene. As Emily has become an adult, her care is often a two-person job for many tasks.

What are the key things that I think have contributed to our marriage working? I would say the top few are:

Never quitting on our marriage. Even when one of us wants to throw in the towel or tap out, we keep fighting for our relationship.
Time apart from each other. There are times I just need a break from caring for Emily and being on call for her. Todd is great about understanding that and giving me the respite I require.
Date nights. Well, this area has been lacking during the 67 months of the pandemic. (I know it has only been 18 months but it feels like 67 to me so I am rolling with that.) We do make time to do things together. In February we went camping and last month we went to a concert for the first time since 2019. We both enjoy live shows. Attending concerts together is our favorite way to connect and recharge.
Giving each other space to pursue our interests. I do not demand, nor do I want to spend every moment with Todd. I enjoy trips with friends and Todd enjoys camping and hunting with friends.
Did I mention grace? We both afford the other LOTS of this. We both have bad days. We can both be moody at times. We both get tired. The emotions are real and that is okay.

Maintaining a relationship takes effort, hard work, and dedication. It is continuing to support each other through the highs and lows. I am not a relationship expert but I believe marriage takes more than love and trust to sustain it. Todd and I love and trust each other but it is grace and grit that has kept us together for over 30 years.

Crying is Good for Your Health

We often hear that laughter is the best medicine. Our culture recognizes the value of laughter. It is seen as cathartic and beneficial. We praise laughter for the health benefits. Crying on the other hand is often seen as a sign of weakness. Crying is often seen as negative. For most of my life, I held the belief that laughter and happiness are good while crying and being sad bad. Is that even true?

The last two years have been emotional for our family. We have experienced challenges and loss. As I have written often in prior posts, we have all experienced loss and disappointment in the past year. It was difficult to laugh when I wanted to cry. One day I decided to be curious and just cry. I started to find the release and comfort that came after a good cry. Was it all in my head or is there something therapeutic about crying? It turns out that crying is good for you. There are many benefits to crying. It is even backed by science.

Humans experience three types of tears. They are basil, reflex, and emotional tears. Each has a function and purpose. Basil tears maintain eye health and protect the cornea. Reflex tears flush the eyes of toxins. We get an eyelash, dust, smoke, or fumes in our eyes. All species experience basil and reflex tears but only humans express emotional tears.

What is the purpose of emotional tears? They don’t maintain eye health and they do not eliminate toxins, so what do they do? Here is just a partial list of the benefits of emotional tears:

They help release stress from the body
Crying releases endorphins and by doing so boosts our mood
Emotional tears are a sign that we need care. This signals others to rally around us and support us
Crying dulls physical pain in the body
Tears help restore emotional balance

Crying also helps babies breathe. That is an incredible reason to cry. Crying is important. Whether you drop a few tears or go full ugly cry, don’t be afraid to let the tears flow. Crying is just as important to our health as laughter. So go ahead and have a good laugh or a good cry. Both are good for the body and the soul.

Don’t Forget to Add the Grace

There are days when we respond to circumstances with abundant grace. We have things come at us and we adapt and pivot like a boss. I recently wrote that one of my superpowers was my ability to adapt and pivot. I think my superpowers were malfunctioning on Sunday.

Sunday was typical. I got up by 4:45 am and was able to catch my favorite live meditation on Clubhouse. One of my dear friends and accountability partners lives in New York and she was in the virtual room doing the meditation as well. I felt connected to her. My day was off to a great start.

My meditation was followed by weekly planning and journaling. I made a cup of tea and sat down to coach clients. Though I live in California, most of my clients live on the east coast so I am up early working with them. After coaching, I had a Zoom meeting with one of my accountability groups. I have several and each brings unique value, perspective, and friendship to my life. Many of these women I have never met in person, yet I consider them my closest friends. When things go south, they are the first people I reach out to.

By the time all the meditating, vibration plating, and zooming was done, Emily was up for the day. I had chosen to do self-care Sunday on Saturday this week so our day was free. We had breakfast and got ready for the day. I did some chores and got things prepared for the week. Emily and I also sat by the pool and watched it fill with water for a few hours.

Later Emily and I were sitting on the floor watching The Wiggles (Shocking and unexpected. Right?). I realized Emily needed to use the restroom. (Let’s just say that mom is potty trained after 20 years.) I tried to pick Emily up to walk her and she dropped her weight. I tried again and Emily dropped her weight. By the third time, I was a little less patient and anxious that I might get injured. She is well over 100 pounds and doesn’t assist. The third time, she stands and bears weight. I start walking her to the restroom and as we turn the corner into the hallway, she throws herself forward.

I just hear the sound of her body crashing into the wood floor. Justin hears and springs to the hall to check on her. My mind went straight to the worst case. I am certain she hit face first and I am going to lift her and find her nose broken, teeth missing, and covered in blood. She does not even think to put her arms out or do anything to brace for impact. She just falls forward. I have a vision of her playing the trust game and no one is there to catch her.

We scooped her off the floor and to my imagination’s dismay she was fine. She isn’t even crying. I was shaking and a mess. She didn’t have a mark on her. I continued to check on her for the next few hours. I was certain I missed some injury. I played the incident over and over in my head. I allowed my brain to spiral. It was not my best moment. The feelings of guilt and anxiety had me reactive all evening.

I chose to carry the guilt and anxiety with me all day Monday. I spent today still anxious and overwhelmed. I got up at 4:45 am. I meditated. I journaled. I exercised. I went through all the motions but I had not forgiven myself. I had not given myself grace. Emily was resilient. She was fine. It wasn’t until I sat down to write this after a day of stress and anxiety, that I decided to give myself grace. I released the anxiety. I centered myself. I reminded myself that old habits are hard to overcome. Sometimes I am not going to adapt. Sometimes I am not going to pivot. Sometimes I am going to wallow in my thoughts and that is okay. I just will not allow myself to stay there long. I can be resilient too. I can have a fall and get back up and shake it off. I may even stand up without any bumps, bruises or bloody noses like Emily did.

Question Your B.S. (Belief System)

I always state that I am a caregiver first. Most people think that means I care for everyone else except me. Three years ago that is exactly how I defined caregiver first. I put everyone’s desires, wants, and needs before my own. My family, boss, coworkers, teachers, bus drivers, the clerk at Vons. You get the idea. There are several reasons I put myself last. I think the biggest reason is that I had a belief that it was kind and noble to put other people ahead of me. It was required to let the world know I was good, kind, caring, dependable. My belief system was that sacrificing my needs for others was the right thing to do. It wasn’t because I had deep-rooted issues of self-hatred or any other baggage. I just grew up believing that is what you do.

I tell my clients that to change your life all that is required is changing your thoughts. Most do not believe me and will argue that this is not true. We have a set of values and beliefs that we are certain are correct. We hold these truths fiercely and many of us are not open to considering maybe we are wrong. We close our minds to the possibility that we are only one thought away from relief from pain, suffering, self-loathing. We have a choice. Our thoughts are a choice and maybe it is possible to change them.

Three years ago I decided to redefine what caregiver first means to me. My new definition of caregiver first means I care for myself first and then I care for others. I did not even change the words! I just changed how I defined them. One day I just decided I was a hot mess and wasn’t getting the care I needed and that wasn’t making me a better anything! I was always feeling exhausted, overwhelmed, and spinning my wheels. Caregiver first means I go to bed earlier and turn off the television and electronics by 8 pm most nights. It means I do not drink wine just because my day was long and my patience was short. Caregiver first means I include things that are important to me on the calendar and then I figure out how to make them happen. Figuring it out means saying no to some things and it also means relying on others to help. Asking for help is a way I can care for myself and my family but it was not easy to implement.

Sommer is Em’s beach, park, and shopping girlfriend

Reaching out and accepting help caring for Emily was difficult. Most moms of special needs children, if not all, have the thought that “no one can care for my child the way I can”. We hold onto that thought as if letting it go will be the demise of our child. Although it was difficult at first, it got easier with time. The help I needed turned out to be a beautiful gift for Emily too. It has expanded her world to others that look, think, act, and care for her differently than mom. Emily has been introduced to the world of vegan food, including donuts. Her caregivers take her to restaurants, movies, and the beach. They encourage her to flirt with the cute boy at the party, expose her to age-appropriate music, and dress her in clothing that the girls her age are wearing. (I need the emoji of the lady with her hand over her face right now.) They do not care for her as I would. Thank goodness!

Em made it to the high rollers table at camp

I challenge you to try a new way of looking at things. Dare to question your belief system. Decide if it is useful to keep. Embrace a new belief or redefine a word in your life. It could be the start of amazing discovery for you and those you love.

The Gift of Acceptance

This past Sunday was Mother’s Day. In my experience, holidays often come with unexpected or unwanted emotions. Grief and sadness are the two that show up on the regular. Holidays tend to highlight or magnify the loss I have experienced. They are a reminder that my parents are gone and not here to celebrate. They highlight Emily’s disability and missed milestones. If you have a child with a disability you get it. Your child is right there but not in the way you expected. It isn’t the way you thought it “would” or “should” be. Emily cannot tell me in words that she loves me or appreciates me. She doesn’t wake me up with a hug or bring me a card she picked out just for me. She is unable to do those things and that is okay. She is perfect in how she shows up, but that doesn’t mean I do not mourn the loss of what I thought it would be. This underlying and almost indescribable grief almost always strikes on Mother’s Day or birthdays. This Mother’s Day was not a unicorn. The grief arrives whether I want it to or not. Grief is funny like that, it is the uninvited guest that shows up when it wants.

Sunday started with me in a funk. The grief and sadness were real and wanted to be heard. They required space and time to be. I asked Todd if he would listen for Emily to wake while I did some meditation and journaling. He mentioned he had things to work on outside, but he did agree to get Emily up and take care of morning hygiene and medications. Knowing I had lots of emotions and limited time, I got to work. I put on a 5-minute meditation to silence my thoughts (or at least get them into some semblance of order). After that, I wrote with reckless abandon. I got all the sadness, grief, fear, bitterness, anger out of my head on paper. When I decided there was nothing else to get out, I let it go. I let go of the expectations and wishing things were different. I stopped arguing for what I thought should be and accepted what is.

I came out of my room with puffy eyes and a red face, but inside I felt good. I was ready to embrace my usual Sunday routine. I treated this Sunday like I do every Sunday. Emily and I both got our shower, shampoo, and shine on. I did laundry and got Emily’s medications set up for the week. Justin got up around 1 pm and made eggs Benedict for me. We had a lovely brunch of eggs and mimosas. Later in the day, Justin planned to head out and visit Nana (Todd’s Mom). Todd was done with his work and decided to go with the kids. I got a gift I did not expect. I received 3 unexpected hours to be at home alone. What a wonderful gift. I enjoyed every second of it. I rested and watched a silly romance movie. It was wonderful. The family brought me a chocolate malt from Baskin Robbins™ that I enjoyed for dinner. Yes, I had a milkshake for dinner and it was amazing!

I made a choice to process and accept my feelings, rather than rejecting them. Giving myself the gift of acceptance shifted my day. Acceptance allows us to be content when things are different than we thought they would be. Sunday I was reminded that acceptance applied not only to my circumstances but to my emotions. How I was feeling was real and accepting and allowing those feelings to be was a gift to me. There is a sense of peace that comes from allowing yourself to feel all of the feelings instead of trying to shame or suppress them.

Small Steps Lead to Big Results

Two years ago my “go-to” feelings were stressed, overwhelmed, and exhausted. I was not feeling much joy, calm, happiness. I regularly stayed up late watching television. I would eat and drink wine most nights. I would wake up feeling exhausted. I did not wake up feeling refreshed. I did not like who I was and what I was thinking and I would do anything to avoid being alone with my thoughts. I was starting to hate looking in the mirror because my body showed my pain and discomfort in myself.

Somewhere in the last 20 years, I lost the joy of learning. I lost the joy of discovery. I lost the joy of my own company. It was not caused by anyone else. I realized I was the source of my problems and I was the only one who could rescue me. I am crying as I type this because I have compassion and empathy for that grown-ass woman who was paddling upstream and drowning in sadness. I knew I needed to make a change but I did not know how to take action.

The journey started with losing weight. I thought that was my problem. If I lose weight, I will be happy. I will feel joy. I will love my body and my life. I lost 15 pounds at the beginning of 2019 and I was not feeling the joy I thought that would bring. I knew I needed to rediscover my love for myself that I have always had in the past, despite the number on the scale.

I decided that I would go to bed earlier. I knew sleep was imperative for mental and physical health and my Fitbit told me I was failing at sleep. This is where the change starts. It was that one, small change that was the catalyst for more change. In order to get more sleep, I turned off my notifications on my phone. I downloaded a meditation app and began meditating to help me go to sleep. Since I was in bed earlier, I wasn’t in consumption mode. I quit consuming news, food, and alcohol in the evenings.

As my sleep improved, I woke up rested. I was up earlier. I began incorporating morning routines. I had time to meditate in the morning too. This was a great way to start my day. I also had time to journal and get a podcast or some reading in. I added exercise. I started doing planks, sit-ups, and push-ups. Nothing crazy. Nothing life-changing. At least that is what I thought. Over the following months, I began to discover myself. I was excited to spend time with my thoughts. I loved the thoughts that came up. I was feeling more joy. I was less reactive during the day. I was able to adapt to challenges and circumstances rather than panic and freak out.

I am not the same person I was two years ago. I have completely changed. The changes did not happen overnight. It was one small actionable step at a time. I continue to grow. I continue to add things that bring me joy. I will continue to delete things that no longer serve me. My sense of self-love and self-worth has blossomed. I love the person I am becoming and look forward to creating the person I will be in the future.