The Power of a Full Charge

Photo by Steve Johnson 

Caregiving is the most difficult job I have ever done. This is my answer after 37 years of working in the real world. (Longer if you count the babysitting I did when I was still in elementary school. Oh, yes. Times were different in the ’70s.) When I was 20, the answer would have been dispatching or customer service. I am not sure which job was harder. If forced, I would pick dispatching (truck drivers at one company and medical imaging technicians at another) would edge out customer service by a fraction. Directing and managing grown-ass adults that behave like toddlers is not easy. With that said, no other job has been more challenging (or fulfilling) than being a Caregiver.

We deliver our children. After a few days, they send us home with them and expect us to figure it out. We read books that map out typical behavior and/or milestones. It is not easy to raise a child that seems to follow the manual. If our child misses milestones or has health issues, then what? WTF now? Some are medically fragile and require multiple procedures or assistance for feeding, communicating, moving. Some children look “fine” or “typical” but have issues not visible. This further muddies the murky water. 

We are thrown into a world of acronyms: OT, PT, IEP, GAIT trainer, NG tube, MR, MS, GD (Globally Delayed or God Damn depending on the day), DD, VI, SI. to name a few. Dr. Google is suddenly our new BFF and late-night call (and not the good kind). When I started on this journey, I had Yahoo to help me with my searches. There were no Facebook groups or support networks. It felt isolated. 21 years later, it still feels isolating at times.

This year I began working with the group We Are Brave Together. This organization, founded by Jessica Patay, is on a mission to support parents caring for children with unique needs. Whether a parent is new to this world, or a few decades in, We Are Brave Together wants to be a lifeline and safe place to land for them. I am excited to facilitate a support group in my area. As I raise awareness for our first in-person meeting later this month, I am met with some resistance. There are a variety of reasons caregivers do not take the time to step away from the job they do every day.

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 or ask for support.

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 we miss the call or the thing. 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 #boringselfcare. 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 are pretty powerful on a low charge. Imagine the things we could do if we were 100% charged.

To find out more about We Are Brave Together and get connected with other caregivers virtually and in-person, go to:

Just Don’t Quit

I decided tonight was a great evening to go out in the backyard for my evening meditation. The sun was beginning its descent, and the temperature was perfect. It was warm, but not hot. The hummingbirds and butterflies were dancing around the honeysuckle plants. It was a beautiful meditation, but as it concluded my legs began to itch.

I was only outside for a few minutes. In that short time, my legs were attacked by mosquitoes. I came inside to assess the damage and apply cortisone cream on each welt that was forming. As the bites continued to swell, I knew I was going to have to take Benadryl. 

Todd left for a fishing trip today and will be back about the time this post is published on my site. I hesitate to take medication, especially if it will make me drowsy when I am home alone with Emily. I am vigilant and want to be alert and sober if there is an emergency. Fortunately, Justin arrived home not long after my brutal bug attack. I got Emily ready for bed and proceeded to take two Benadryl.

As I sit here trying not to scratch the plethora of bites on my legs, a memory from our honeymoon popped into my mind.

Twenty-nine years ago Todd and I got married. My dad passed away when I was in high school and his birthday was September 6th. Todd’s dad was a barber at the time and did not ever call out sick or miss work for any reason. We looked at the calendar. My dad’s birthday in 1992 fell on a Sunday. We took that as a sign that Sunday, September 6th, was the perfect day. We would honor my dad’s day with a wedding, and Todd’s dad would attend. Win. Win.

We had an unusual ceremony at a jazz club. We were married by a Wiccan warlock (not sure if that is the correct term of 2021). Our wedding party was quite diverse, both ethnically and religiously. Our vows were to love each other as long as our love shall last. We had a lot of fun with those vows over the years.

The next day we flew to Cancun for our honeymoon. That September was extra hot, humid, and full of mosquitoes. The first night we had dinner on the beach. By the time our beautiful sunset meal ended, my legs began to swell. I was covered in bites on every exposed inch of my legs and arms. I did not travel with Benadryl back then, and I honestly did not know that was a solution to reduce the swelling.

Todd was sweet. He made a vow that he would find medication to treat the bites. He was not going back to the hotel until we found someone to help. Eventually, we found a drug store. We purchased a bottle of calamine lotion and then back to our hotel. 

It was late when we got back to our hotel. I ran a cool bath to sit to get the swelling down. Afterward, Todd helped dab the disgusting lotion on each bite while I cried. I thought I had ruined our entire honeymoon. I kept apologizing for messing up our trip. Todd just comforted, consoled, and calamined me. 

We have been together for 36 years and married 29. It is funny that we sometimes forget the very qualities that attracted us to each other. Todd is compassionate and loving. 

The years have not all been easy. I keep a card from Todd taped to my computer screen. It reads:

I know it has been a rough few months, or year, or maybe even decades,

but you will always be my Valentine. I love you very     much…Your Husband, Todd

That sums it up. We have had our share of rough years and decades. Maybe more than some. I think very few marriages could survive the challenges we have faced. There have been times when we want to throw in the towel and quit. I think what makes a marriage work is not quitting.

I read this recently on social media (full disclosure I am posting this myself today on mine).:

“A perfect marriage is just two imperfect people who refuse to give up on each other.”

How have we made it work? How has our relationship lasted for 36+ years? There is no magic or secret sauce. The answer is simply not giving up on each other.

We both have just refused to quit. Again and again and again.

The Suck In Being Stuck Together

I have shared before that the COVID lockdowns and isolation have been extremely difficult for Emily. Her agitation, anxiety, and anger increased. Medication has mitigated some of the increase, but the remaining appears to be behavioral. Eighteen months later and things are still complex.

In the past month, the opportunities for Emily to go out have increased. We have been able to access outside services a few times a week. The caregivers report back that Emily was happy, delightful, quiet, and calm. I am grateful Emily is behaving well for others, but there is an undercurrent of resentment that percolates below the surface.

Before I even pull into the driveway at our house, her protests begin. She is angry, agitated, anxious, and LOUD. Loud is in all caps but does not capture the magnitude of her volume. (I downloaded a decibel meter for entertainment and curiosity purposes only. Emily’s squeals range between “construction site” and “rock concert”.)

I have posted photos on social media of Emily in the community looking calm, smiling, and happy. These images bring me great joy with a side of sadness. I want her to be content at home with me. I want to be around the woman I see in those photos.

One of her caregivers made the comment that it appears being at home triggers her agitation. I was discussing this with a friend that I met online. This woman has never met us in person but made a similar observation. She noted that Emily seemed content and happy in photos where she is out in the community and not with Mom (ouch). Her thoughts, while a bit painful to hear, are one hundred percent accurate.

Emily and I have been stuck with each other for a year and ½. We have coexisted in our 1,000 square foot home. I am working hard to make things work. All Emily wants is to get out of Dodge. (What does get out of Dodge even mean? Should I Google that before I post? Probably. If Dodge has been canceled, please let me know.)

While the family is fighting for bandwidth (literally), Emily is stuck watching hours of television or listening to music. Even Emily tires of watching The Wiggles and music videos. How many times can we find Emma’s bow? In case you are curious, the answer is right under her nose.

If someone else in the house wants to watch TV, Emily will protest. Her voice will increase in volume to a decibel that has yet to be discovered in the human species. Have you the movie Splash? Next level, window shattering, screams!

Visitors get the loud protesting calls as well. “Let’s get out of here. Save me from this place. My mom is driving me crazy. I want out of this house.” Her eye-gazes and voice are definitely saying something to that effect. (I am fluent in Emily.)

From the moment she wakes up, she wants to leave the house. She will eye-gaze from the wheelchair to the front door and back again. The eye-gazing is in time with the squeals and yells. I communicate that we cannot go outside right now. This increases her anger and volume.

I am doing the best I can. It is important to remind myself of that. I am keeping Emily safe, clean, fed, and entertained to the best of my ability. I am also working from home. There are bills to be paid. Appointments to be scheduled. There is cleaning, laundry, grocery shopping, and cooking to be done. I get outside with her as much as possible, but she does not want to go out with me. She has seen my face day in and day out. She is over it.

I get it. I understand. When I graduated from high school, I moved out of the house. Most adults, not all, do not want to hang out with mom 24/7. I have memories of my mom telling me she always loves me, but sometimes she does not how I act. I can relate to my mom. I think Emily feels this way about me too.

Today Emily is going back to school. She is scheduled to go five days a week AND from school to her adult program. She will be away from the house from 9-5 each day. I am cautiously optimistic that the extended time away from home will be positive. It will give us the separation we need from each other right now.

I beg, pray, and hope to God, the universe, the C.D.C., (and any other entity with control) that schools and programs stay open. I just do not know how much more concentrated togetherness Emily and I can handle. We have reached our limit of lockdown. We are done with home life being our only life.

Emily needs a life outside of the house with her peers. She needs people other than mom interacting with her. At the end of the day, I want us to delight in being around each other. I want to not only love each other, but like each other again. I want to find the end of suck in the stuck together spiral we have been swirling in for months.

Grief Within the Beauty

Photo by Liza Summer

One thing I enjoy after a long day of caregiving is watching a little television. I have been a fan of most of the Bravo Real Housewives series for years. My favorite has always been the Real Housewives of Beverly Hills. I could call it a guilty pleasure, but I have no guilt watching it.

As I watched the story of Tom and Erika Girardi unfold this season, it stirred up emotions of sadness. Erika Girardi always appeared on the show with confidence and a fire in her soul. This season the camera captured a woman who is struggling. She seemed lost and abandoned.

I could empathize with the woman I saw on the show. She was invited to lots of parties and had an amazing social life. She had lots of friends and invitations to all the events. A circumstance came along that caused things to change. Overnight many of her friends quit calling and texting. The invitations no longer were coming in the mail (or inbox). Her circle of friends began to shrink.

Maybe you are curious about what Erika Girardi and I have in common. No, I was part of the A-list crowd and suddenly B (or C-listed) due to my husband’s alleged crimes. I am raising a child with physical and developmental delays.

I gave birth to two beautiful and incredible children. I had a close circle of friends that had kids at the same time. We did everything together. There were pool parties and sleepovers. We would plan vacations and weekends away together with the kids and without. We shared the struggles and joys of being moms. Our children played together and got along. These moms were my rock. They listened to me and loved me through the early years of tears, testing, therapies, and doctor’s appointments. They were the people I could call at any time. These women had my back.

When Emily turned 7, there was a shift. You could call it the 7-year itch (or perhaps the complexity of raising a child with physical and intellectual disabilities). The gap in ability between Emily and her peers widened as the kids grew older. She was unable to communicate her needs like her friends and would express herself loudly. She was unable to participate in the same activities as her typical friends. Her behaviors did not comply with “normal standards” of what is appropriate.

As her differences grew, our circle of friends shrunk. The invitations to parties quit coming. There were no more sleepovers.

I never discussed my pain with these women. I pretended I was good. My husband would hold me while I cried about missing a party or not being included. He could not understand my pain.

In retrospect, I realize I was grieving. I was sad for milestones that Emily would never reach. I was excluded from celebrating the milestones of kids I cared about. I was also grieving the loss of friendships that faded as Emily grew.

I did not set out to share this experience openly. Over the last several months, I have been able to find the words. They have been inside for years and longed to be expressed. I decided it was important to share my experiences as a guide or comfort to other moms just starting the journey of raising a child with physical or mental challenges.

Grief is a part of this journey. You can be grateful for the child you are blessed with and grieve things that will never be. There is beauty beyond the grief and grief within the beauty.

Celebration Minus Expectation

Today is a big day in the Short house. We are celebrating Emily’s 21st birthday. My Mom always made a big deal about birthdays. She always went above and beyond to help us kids feel special on our day. When I had kids, I wanted to do the same. It was a tradition I wanted to continue. I wish I could say I have done it gracefully and seamlessly.

As Emily grew and missed the age-appropriate milestones, I struggled. Each year that passed was a reminder of what she could not do and that she was different. I would be sad on her birthday and go to a dark place in my head about them. I did not approach the day she was born with joy and gratitude.

As Emily got older and her behaviors were not as easy to manage in social situations, invitations to parties from her peers dwindled. I took it personally. First, her developmental delays stole the joy of her birthday celebration. Now, I was no longer able to celebrate her typical peers’ birthdays either. In my mind, it was big, emotional, and full of drama.

Family and friends showered Justin with gifts, cards, and phone calls to recognize his birthday. Those same people did not take the time to do the same for Emily. My heart would hurt for her. I made it mean they did not value her or care. Wow, talk about adding a dose of optional suffering into some busted thoughts!

Emily does not comprehend the concept of her birthday. She is not counting cards, calls, or texts. The drama had nothing to do with Emily and everything to do with me. Over the last few years, I have learned to release my expectations of other people. I threw away the manual on milestones and expectations for Emily’s progress and achievements. I started to practice acceptance and release control. Once I did that, I was able to create more joy every day and extra on birthdays.

As she turns 21, we plan to celebrate as big as she will tolerate. Emily will have cake (my Mom insisted cake was mandatory). Emily will be showered with extra love and attention. She will be seen, loved, and heard. I will not shower her with gifts because that is not Emily’s thing. Emily is a Diva, but she is not a material girl.

Emily’s 8th birthday complete with cake

I can expect moments of sadness to come this week, but they no longer drown out the joy of celebrating Emily’s day. I appreciate the beauty in her growth as well as my own. That is a beautiful thing to celebrate every day.

Glass Children, Mom Guilt, and GRACE

Recently I was introduced to the concept of a glass child. Glass child is a term used to describe the sibling of a person with a disability. The word glass reflects that often others see right through the typical sibling and focus only on the person with the disability. The word glass denotes that these children are more fragile than they appear and breakable.

The first emotion that came up when I read about glass children was no surprise. It was guilt. I do not remember many resources available to Todd and me to help Justin adjust to our unique home life and having a sister that required so much attention. Did we even have Google in 2000? (I need to Google that to find out.)

Photo by Thiago Matos 

Justin was always an easy kid (even before his sister came along). When he was an infant, we often took him to the movies. Justin would rarely cry or throw a fit. We flew with him to Louisiana when he was a toddler. He did great. We drove across the country when I was pregnant with Emily. He was a great traveler. He was always easy to entertain. When we were at a restaurant with our friends and other toddlers, Justin would sit at the table and behave. He never got up and ran around the restaurant.

I never questioned as he got older that his sister played a role in his mild-mannered personality. He had a mild temperament before Emily was born. I was an easy-going kid. I attributed his personality traits had more to do with genetics than exposure.

We always tried to make sure Justin had time with us away from Emily. Todd and I took turns taking Justin to his activities. We encouraged Justin to pursue chess club, music, and other activities there were just about him. Todd and I were leaders when he was a Boy Scout. I volunteered in his classrooms when Emily was at her early intervention programs for a few hours a week.

When Emily was old enough to participate in the after-school program provided by AbilityFirst, we took advantage of this invaluable resource. The services allowed us time after school to do things with Justin. We were able to support Justin and actively participate in some of his functions.

Justin spent many hours during his early years going to medical appointments and therapy with his sister. I know this is not typical for most preschool kids. I am sure he has early memories of listening to doctors and therapists assess and dissect his sister and her progress/delays. During these appointments, he was expected to be quiet, content, and entertain himself.

I hope that he remembers other things too. The time he dyed Easter eggs on the kitchen floor. Mom let him and his friends get messy and dirty. Mom remembers because she got to clean up afterward. I hope he remembers me dancing around the house and singing silly songs. (Let’s be clear, I still do this.) Learning to ride his bike in a church parking lot. The camping trip that Dad took him on in the snow. There were also countless trips to Disneyland back when a SoCal pass was under $100 per person. If you added parking, it was $129.

There were train tracks! Lots of train tracks. Our small home usually looked more like the Township of Sodor than a home. Train tracks and trains ran through every room in our small home, except the bathroom. (Even Thomas and his friends need limits.)

As I was writing this article, I asked Justin about his childhood. He only had positive things to say. If you think he is responding politely to spare my feelings, then you do not know Justin. He is not one to mince words or frame things delicately to soften the blow. He has a gift of punching you in the gut with his tongue if he feels the situation demands it.

Raising humans is a tough job. No one does it perfectly. I could beat myself up for the way I did things when my kids were little. I am not sure how that helps me. Instead, I am choosing to give my younger self grace. I will not hold a grudge for things she did or did not do as she navigated raising two children. She showed up the best she could with the knowledge and resources she had.

Don’t Tell Her She’s Just a Van

Did you ever dream about the “perfect car”? A car that makes your heart skip a beat when you see it or think about driving in it. The one you may have even added to your vision board if you make one (which I highly recommend). I have a dream car in my mind and on my vision board. I would love to own a Mercedes. A four-door, sleek, matte-colored, leather interior, with all the bells and whistles possible. I have always wanted a Mercedes. The actual style and color have changed but the desire has remained. 

When I was pregnant with Justin, we bought our first minivan. It was a 1998 forest green Ford Windstar. I did not love that car but I did love the color at the time. (Don’t judge, it was a popular color back in the day.) There are two things I remember about that car:

  1. The hubcaps (or center caps) fell off that car often. I remember a police officer pulling me over to return a hubcap that fell off when I made a right turn.
  2. I was thrilled to replace it with an SUV after 9 years of driving a minivan.

I swore I would never own a minivan again. I never wanted to be in the minivan club and I was thrilled to escape it. Have you ever heard the phrase, “We make our plans and we hear God laughing”? God had other plans for me.  

The reality is I am the primary caregiver to my daughter and she depends on me to drive her everywhere. It is not easy to get Emily in and out of vehicles. She is almost as tall as I am and she does not assist in the process. It is like loading and unloading a 100# bag of cement each time. The bag of cement must conform to the seat and wear a seatbelt too.

When it was time for me to get a new vehicle a few years ago, Todd begged me not to get a minivan. He knew it was not a car I wanted to drive. I thought it was sweet of him to plead on behalf of my dreams. I told him I was getting a minivan with a lift chair because it was the best decision for my health and Emily. It is not just about my dreams but I need to be practical. Emily is not getting any smaller and I am not getting any younger.

When I am driving my van, I love it. She has all the bells and whistles. It is the first car I have owned with a backup camera and “dummy lights” so I don’t go into a lane with a car already there. It has a great stereo for me to listen to SiriusXM or the latest episode of a favorite podcast. When she is zipping along the highway or making U-turns on a dime, I forget she is a van.

A fellow coach and I were discussing our rides. She drives a Jeep and I have a Toyota Sienna. She said her Jeep reminds her of a Transformer on the outside and my minivan is a Transformer on the inside. I agree. When I am driving my minivan (that has the chassis of a Tacoma), I am driving a car with power and muscle. She has pep in her step. She is equipped with the features of a luxury vehicle. She provides comfort, convenience, and dependability. I describe my van as “my midlife Mercedes”. She has heard me say this enough that she believes it. (The power of thought work.) My van thinks she is my Mercedes and I love that about her. She has never let me down and she reminds me it is what is on the inside that matters most.

PS: Just in case you ever get a chance to meet her, please don’t tell her she is just a van. She believes she is so much more.

Wonderful But Not Restful Trip

We returned home on Thursday evening. I really thought I prepared myself for re-entry after the road trip. I had someone come to the house to give it a deep cleaning while we were gone. The house has not been cleaned from top to bottom during the last year. The family has been here 24/7 for over a year. Someone is usually taking a shower, cooking, working on projects, and making messes. Emily loves to go room to room and throw anything she can get her hands on. I recruited Justin to go shopping the day we returned to get staples for Emily and some bagged salad for me. I had worked long hours at my day job before leaving to make sure everything I could think of was handled and processed to limit issues while we were gone. I felt confident about my pre-trip actions.

As we unpacked the car and began to pile it all into the house, it hit me that all my preparation was not enough to suppress the anxiety that overcame me as the house filled. I got 2.5 weeks of work mail dropped off at my house that evening by my wonderful co-worker. She had everything sorted and ready for me but the stack added to my anxiety. Justin had gone camping while we were gone and the contents of his car were in the living room. Emily began fussing as soon as we got home. I was anxious and I felt overwhelmed. What do you do when you are in a state of overwhelm? Take action.

I started by sorting all the laundry and got to unpacking. I started the washer and unloaded the suitcases and crates. I gave Emily a thorough bath and got her ready for bed. She was having trouble going to sleep. I had to sit with her for a long time. She got used to mom and dad being with her every night to help her fall asleep.

Friday morning came too soon. I woke up exhausted. Emily was to go to school on the bus. I knew there was a 50/50 chance the bus would not show up and it did not. I loaded everything into my car and off to school we drove. I started crying on the way. I was tired and had reached a point of breaking down. At that moment, I realized that the trip had been fun, but it was also a lot of work. Todd and I had cared for Emily for the past 18 days with no help. She had trouble sleeping. She had panic attacks during every aspect of hygiene from bathing to toileting. She refused to help with transitional walking. My hips and body were sore and stiff from long hours sitting in the car and sharing a bed with Emily. My self-care had taken a back seat during the trip and I was feeling the results.

Todd and I both agree the trip was worth the work. Emily enjoyed the active days and being seen and heard. We got to see so much and go to states we have never visited. The trip was incredible and we would do it again. It was worth the work and I came back exhausted. That is okay.

I am giving myself grace. I am treating this week as a transition week. My focus is on my day job. Once I am caught up on my tasks there, I will schedule appointments for myself. I will schedule appointments for my care from physical therapy to my eye exam. Self-care will be back in the driver’s seat and my body will be rested.

My mind is already planning another trip. A vacation without Emily. I love her dearly but this trip helped me see how much Todd and I are in need of respite. A break from caregiver duties for a few precious days.

Friendship and Accountability

Losing weight was always easy but keeping it off and maintaining the loss was the difficult part. It took me time to learn the secret to keeping off the weight. The first was learning to accept my emotions and allowing them instead of trying to stifle or suppress them. The second was learning that I cannot do it alone. We do not attain anything without help. While doing the work is on us, we need others to support, challenge and encourage us as we go.

Early on in my journey of learning to love myself and my life, I met my supporters. I met a group of women from all over the country on a NoBS Weight Loss Program facebook page. We were all working on losing weight and created an accountability group to support each other. All of us were in different stages of our journey. Some just starting and some at goal and maintaining. Our daily accountability was a tool to keep us on track.

Until this road trip, I had only met a couple of these women IRL (in real life). My husband could not understand having friends you talk to and share things with that you have never met. He thinks I am a bit nuts. Last year I flew to meet a few of my accountability partners. I told him I was flying to Illinois and meeting one of my accountability partners at the airport and then another was picking us up and we were staying at her house. Todd was not happy. I met another friend in Las Vegas for my birthday.

This past week Todd, Emily, and I met five of these ladies in Dayton. I cannot begin to express the joy I felt being with these ladies in person. We spent less than 48 hours together laughing, talking, and finding covered bridges (because I wanted to see some). If you saw us together you would think we have been friends for a lifetime. They also embraced Todd and Emily as family. 

Emily has seen and heard them all on video and she was happy to be with them. At first, she was so excited that she got a bit overstimulated and had trouble regulating her emotions. After the first night, she was calm and happy. She acted like the princess she is with lots of moms watching out for her and smothering her with attention. I just love when people see, hear, and acknowledge Emily. These women not only have my back but my daughter’s too and that is everything.

Though our visit was short, it was sweet. I cried as we said our goodbyes yet I know we will see each other again. Until then we will continue to lift each other up. Support each other and encourage each other. We will call each other out on our BS and grow forward as we work on our goals. This is what accountability partners do and I am lucky to have some of the best.

Six Days On The Road…Fourteen to Go

We are six days into a three-week road trip across more states than I have been able to calculate. I did purchase a scratch-off map from Etsy to track but I have not had the energy at the end of the day to plot. The days have been long for Emily. She is happy to get to our final stop at the end of the day but seems to thoroughly enjoy the journey as well. Todd and I feel the same.

The highs so far:

  • Daisy the deer licking Emily clean at Bear World
  • The buffalo (or is it bison?) that casually walked behind Emily at Old Faithful
  • Old Faithful Geyser (WOW!)
  • The luck we have had at finding amazing parking at peak season in Yellowstone. 
  • Bear World in Rexburg, Idaho. It was worth the price of admission
  • Emily adjusting to a different sleeping location each night with the same ease (or lack of) as Mom and Dad

The lows so far:

  • Emily refusing to sleep on the air mattress and having some panic attacks.
  • Princess Emily depending on Mom or Dad to sleep with her (both a high and low because she has never been one to cuddle but Mom and Dad are not getting great sleep).
  • Adequate bathrooms along the way. (This is a hot button for most families having to help with hygiene for their adult loved ones.) Our disabled adults and seniors deserve better. 
  • Two-lane roads.