Conversation for Change

The Caregiver Cancelled…Again

Remember a few years back when CANCELLED was heard regularly on social media and on the news? For one reason or another, it was like everyone was getting cancelled. Actors, hosts, comedians, and politicians were cancelled. It was raining cancellations! No one was immune, but in the world of disability and disability care, cancellations have always been prevalent. I often joke that there would be more commas in my bank account if I got paid every time a caregiver or plans were canceled. Cancellations come with great regularity in the rare and disabled community.

As a Connection Circle Leader at We Are Brave Together, I engage in several groups for moms that are the primary caregiver for their families. Many of these moms are caring for loved ones that are medically fragile or have intellectual or physical disabilities that require 1:1 care. Like Emily, many must be supervised 24/7. They require 24-hour care and constant supervision. In the past week, I have read several disheartening posts from stressed-out, burned-out, and overwhelmed moms excited to get some respite only to have the plans altered or changed because the caregiver they hired to watch their loved one had to cancel. I decided to share some of these stories.

“This weekend is my 18th anniversary. My husband and I had plans to spend the weekend in wine country, and the caregiver just cancelled on us. My husband often has to work weekends, and he was able to get the time off.”

“I can’t remember the last time my husband and I went on a date. We planned dinner and a movie for tonight. I was really looking forward to getting out of the house and getting a break. I miss my husband. He is my best friend, and I miss spending time with him. While I was running around to make sure everything was in order, the caregiver cancelled. I feel so much disappointment.”

“Our family planned an Alaskan cruise with extended family. I finally found a caregiver I trusted to come and stay with my son while we were gone. I just got a call that the caregiver is sick and has to cancel on us. I am devastated and heartbroken.”

“I have tickets for a concert tonight if anyone is interested. Our caregiver canceled so we won’t be able to go. I am not asking for money. I can transfer via Ticketmaster if you have an account. Sure it will be a great show.”

“I planned to get a pedicure today, and the caregiver didn’t show up.”

I could relate to all of these posts, as could most of the moms in the groups. I have so much empathy and compassion for these parents who just desperately need a break. They need a few moments off the hamster wheel. They need time to feed the soul and to pour into themselves. It is also frustrating that consistent, reliable care is hard to find. It is sad that we expect our plans to be cancelled. If the plans don’t get cancelled, we are surprised, overjoyed, and elated.

There are also seasons where cancellations are less frequent. I relish those periods. Right now, we are in a steady and balanced season for caregivers. This hasn’t happened accidentally. I have made it my mission to expand our care circle this year, and my plan is working. There are compromises to be made, and control to release when delegating care to caregivers. Right now, I have a wonderful person coming to do baths and walk Emily a few times a week. She is a bit spacey and scatterbrained at times. If a mess can be made, she and Emily will figure out a way to make it. If there is fun and laughter to be had, they are on that too. Sometimes, the loudness and chaos that ensues when they are together can get under my skin, but then I remind myself that she is reliable, caring, and Emily is happy and her needs are being met.

For all the moms that have posted about caregivers canceling, please do not give up. Keep your home and heart open to additional support. Finding caregivers isn’t easy, and yes, it can be disappointing when they do not work out or cancel, but it is worth the effort. Our minds, our bodies, and our souls need respite. We cannot be on deck 24/7. We must be able to tap out sometimes and let others in. It is healthy for us and our loved ones to expand the circle and never give up on the search for reliable and consistent support.

Grief, Loss, and Lots of Thoughts

I opened the Wordle game and typed in G.R.I.E.F. as my starting word. I usually start with the first word that comes to mind each day. Today, that word was GRIEF. I was thinking about the concept of grief and the rules about grief. Sometimes society seems to put loss into categories with corresponding grief scales. Loss gets ranked by magnitude. Loss of a pet is less than the loss of a family member. Losing a job lower than loss of a home. In my opinion, this process is crazy, flawed, and inaccurate. No one can rank or measure our individual loss or the process of our grieving.

It started on Saturday. Emily and I walked (well, I pushed Princess Emily) a virtual 5K to create awareness about The Dagny Foundation. This foundation supports families that are experiencing infant loss or crisis. It is something I have never personally experienced but I can only imagine the weight of the grief is heavy and unbearable. I began thinking about the many losses of children I have witnessed over the years as Emily’s mom. Raising a child with severe disabilities has exposed us to more loss than if our journey was typical. Several of Emily’s friends that have passed were never expected to live beyond infancy due to their disorder, syndrome, or complex medical issues. These parents have shared some of the journey, struggles, and joys of having their child overcome obstacles or meet milestones the medical professionals never thought they would reach. They cherished that extra time that they did not expect to receive. There is gratitude for every day they were able to hold their child beyond what they told was possible.

Yesterday, I decided to check in on Facebook before going to bed. The first post I see is from a colleague sharing that her daughter passed away unexpectedly. She was young, healthy, and a bright light. The news hit me harder than I expected. It felt heavy and unbearable. A crushing feeling of the cruelty and injustice of the loss emerged. I felt tremendous pain for my colleague and her family. How can anyone process and move on from such a tragic loss? The news was devastating to me. I didn’t sleep much last night as my mind raced. As my thoughts came and went, I began judging my thoughts.

The loss of a child is always devastating and terrible. Why is this hitting you harder than other losses? What is wrong with you? Who are you to decide one loss is more tragic than another? All loss is terrible. Let the judgmental chatter begin! I decided to be curious about why this loss hit me so hard and why it felt devastating. I really do not have a good answer. Maybe it is the unexpectedness of it all. It is hard to comprehend the passing of a physically healthy young adult. When my dad passed, it was sudden and unexpected. I know that loss was not easy for our family to process. I was only 16, but I remember thinking it would be difficult for my Granny. Losing a child is the worst thing I thought one could ever experience, and maybe I still hold that belief.

When my mom was diagnosed with stomach cancer that had spread throughout her body, we knew time was short, but we had that time. Nothing was left unsaid to my mom. We had the gift of time. I knew our time was short and didn’t want to waste any of it. I spent time with her. We chatted. I asked questions and took in all the love I could, knowing the end was imminent.

Is that the difference? Did this loss strike out of nowhere to someone who was young and healthy? If I had to guess, I think that is why this feels harder for me. I believe no one is ever truly ready or prepared to lose a child, and I also know that I do not have any answers. Grieving a loss is a personal and unique experience for each individual. No one shares the same experience.

Grief is something we will all experience, and I desire to support my friends, and family that are grieving. I want to show up for others. I don’t want to avoid connection or interaction out of fear of saying or doing the wrong thing. I want to learn how I can better support others that are grieving and stand by them in the process. I am always searching for resources and tools to increase my awareness and grow in knowledge and understanding.

Here are a few resources that may be helpful if you or someone you care about is experiencing a loss:

The Little Book of Grief, Grace, and Gratitude by Chris Palmore
It’s Okay That You Are Not Okay by Megan Devine
Good Grief Website
The Grief Coach
1095: Doing Better – A Conversation About Supporting Others with Suzie Barbour

Emily Goes to the Lizzo Show

For all of you who came back this week to get the Lizzo concert 411, I want to say THANK YOU. I appreciate the support I received via texts, calls, and posts prior to the event. The encouragement and cheerleading did not go unrecognized and were needed.

I barely slept on Thursday night. The anticipation of the show on Friday left me feeling anxious, and I spent hours reframing it to excitement. I meditated. I visualized myself remaining cool, calm and collected no matter what transpired. Emily has been very vocal and anxious this week. Her emotions have been BIG, and she has been the opposite of calm all week.

Up before the sun on Friday, I began packing and preparing for our drive, hotel stay, and show. I wanted to bring everything that would make Emily feel comfortable and supported. Emily and I planned to share a bed at the hotel, and I was concerned she might fall out of the bed.

Last week, I listened to Madeline Cheney’s The Rare Life podcast. Episode 125 was tips and tricks for traveling with disabled kids. I have traveled with Emily many times and did not think I would learn anything new, but I was wrong. One of Madeline’s listeners shared a link for blow-up bumpers to insert under the fitted sheet.* I ordered a set to pack in our suitcase and hoped that while Emily is much larger than a toddler, it may still work to keep her from falling out of bed.

The AbilityFirst staff fed and assisted Emily right before I was scheduled to pick her up. In addition, the staff French braided her hair! As we began our 2.5-hour drive to the desert, Emily was unusually quiet. I began to feel more optimistic that her anxious mood was dissipating. Nope. About an hour into the ride, she got LOUD. She fussed the entire way there. Justin sat beside her and tried to entertain her.

We did a drive-by of the concert venue before heading to our hotel. I just wanted to know where we were going and the layout. The Acrisure Arena was only a mile away from our hotel. We checked into the hotel and let Emily crawl around and chill for a bit before grabbing walking to grab dinner. She was loud at the restaurant and discontent. My excitement began to decrease, and my anxiety increased as her mood shifted. It was too late to turn back now and in it.

After dinner, we headed to the hotel to change Emily into her Lizzo tee shirt. The staff at the hotel recommended we get to the venue by 6 to avoid traffic issues. Justin dropped us off, and we walked around the venue. Emily enjoyed walking and was quiet and calm. She was happy to watch security and staff in action. She watched cars as they pulled in and loved watching all the people. The gates opened at 6:30, and the arena had a great outdoor area. I purchased water for Emily to put into an empty cup I had packed. Once the venue opened, staff escorted us in and showed us where our seats were. Everyone that worked there was attentive and kind to Emily.

Emily’s anxiety started the second Latto came on stage. Between the noise of the crowd, the music, and the lights, Emily did not handle it. She was almost hyperventilating. I walked out with her and went to guest services to get noise-canceling headphones. It was so crowded that I could not even make it through with Emily’s wheelchair. We went outside, and the staff kindly escorted us to guest services. We were given earplugs, and Celena began to search for headphones. Apparently, the headphones were either relocated (maybe in witness protection) or never returned from prior events. I decided to take Emily outside to the garden area and wait until Lizzo played to go back inside. Emily was content watching concert goers arrive. It was like a mini-Pride festival. Half-dressed men in orange leather jumpers. Women in bright-colored wigs and feather boas. Tight sequin dresses and pant suits. Bright colors, cool shirts, extravagant makeup, lashes, and bare skin steadily passed us. Many stopped to talk to Emily and compliment her hair and tee shirt. The energy was high.

As we quietly took in the atmosphere, Celena approached us with a pair of fancy headphones. She apologized that they were unable to find the noise-canceling headphones, but she had gone to the tech booth and borrowed a pair from there. I was overcome with gratitude. I spent a few minutes trying to get Emily to adapt to the headphones, but she was not having it. She kept pulling them off and trying to throw them. I knew they were expensive. I decided to return them before Emily accidentally broke them. Back to guest services, we go.

Iza, in guest services, was not giving up on Emily. The employees turned to huddle and said they were upgrading us to the premier level. The seats would not be as close as the ones we purchased, but it was less crowded and quieter on that level. Another employee escorted us to the back of the arena, through double doors where the ice rink was, and behind private suites to an elevator. We emerged two levels up and were shown to our new seats. It was now after 9 pm, and still no Lizzo. I thought it might be a good time to get a drink at the fancy bar on this level. Emily and I were in line, and when it was our turn, the women in front of us informed the bartender they were buying my drink, and my money was no good. Wow! I protested. They insisted. I hugged them, and I may have shed a tear or two.

I found another corner for Emily and me to wait for the music to start. People would come by and chat with Emily. She was getting lots of attention and enjoyed that. Tina Turner’s What’s Love Got to Do With It played through the arena sound system, and the crowd went crazy. The entire arena was singing along. It was pretty magical. As the song concluded, the lights dimmed. Emily and I worked our way to our seats as the staff enveloped the fans in black velvet curtains. Lizzo came out, and the crowd got louder. The lighting was epic. The fans were boisterous and unhinged. Lizzo was sequinned from top to bottom and brought it. She encouraged the crowd to sing, get wild, and get louder. The place was explosive, and Emily was having a full-blown panic attack. No one could hear her. She wasn’t bothering anyone, but I could tell she was losing it. I spent two more songs trying to calm and console her. I put pressure on her shoulders. I rubbed her back. I talked to her. I sang to her. Nothing was going to stop the anxiety except leaving the situation.

As soon as we left the velvet curtain, she began to relax. I asked the staff to show us to the elevator, and we went down to the lower level. I went back to a corner that had low tables and monitors. They were actually playing the concert on the small screens. I got Emily another water, and we watched the show on the glowing box. She was happy and content. After about 30 minutes, I was done. I texted Justin to pick us up.

I stopped at the family restroom on the way out. I was pleasantly surprised that the restroom was vacant. The restroom was huge, and it had an adult changing table. As a mom of a disabled adult, this may have been the highlight of my night! I took care of Emily, and we walked to the rideshare area.

Once we were back at the hotel, it took Emily hours to unwind and fall asleep. I was exhausted. It had been a long day of planning, packing, driving, and the show. I was a bit disappointed that Emily did not enjoy the concert but happy that she loved everything else about the experience. My heart was full of gratitude for everyone that worked hard to make it a great experience for Emily. The staff gave 110% and exceeded my expectations. Lizzo’s fans were incredible. Fun, feisty, spirited, kind, and inclusive. Everyone we interacted with engaged with Emily. They acknowledged her. They complimented her. They saw her.

I say the word that sums up the experience is BIG. From the energy of the fans, the kindness of the staff, Lizzo’s admiration towards her fans, the gratitude in my heart, AND Emily’s anxiety…It was all BIG.

*The bumpers were a winner. They stayed in place and worked great. Justin complained about having to blow it up, but I told him at least he only had to do one. They are very light weight and easy to pack too. Two thumbs up!

Hard is the Path to Memorable Moments

There are so many things that I would love to do with Emily. There are places I think she may enjoy experiencing. Sometimes, I contemplate taking her on adventures to do some of these things. I think about taking her to a movie, a show, or a concert. I am really good at talking myself out of these trips. I decide it will be difficult, hard, or a disaster. My worries, fears, and anxieties shut down any plans. Emily can be extremely loud, and her behavior is not always acceptable by society’s norms and standards. I worry that I won’t be able to find an accessible place to park and get Emily in and out of the car. I fear she will need personal assistance, and there will not be an appropriate restroom to care for her needs. I worry about inconveniencing others with her behaviors and sounds. I don’t want to waste money on an experience that Emily will not be able to tolerate. I resign myself to the idea that it is too hard, and won’t be easy, and I shouldn’t bother trying.

I have been listening to Elizabeth Benton’s Primal Potential podcast for the past few years. There is almost always a pearl to be found in each episode. Recently, I listened to episode 1087: WHY Do You Want It To Be Easy?! In this episode, EB discusses the value of doing things that are difficult or challenging. She shares her thoughts about Jesse Itzler and his drive to accomplish hard things. (Jesse Itzler is the husband of Spanx founder Sara Blakely.) Jesse is driven to take on seemingly impossible challenges and believes that the more difficult the challenge, the greater the reward when, not if, he succeeds. Tell him something is impossible, and Jesse is the guy who will prove you wrong.

As the episode concluded, I realized that some of the best things I have done with Emily have been scary and hard. Todd and I drove across the country with Emily in 2021. It was not easy to make the trip with Emily. We overcame many obstacles, and we came home from vacation exhausted. (I shared the journey and experience in weekly blog posts*.) I remember falling into bed at the end of each day mentally and physically spent. Each day we watched Emily light up with joy and embrace the journey. Watching her enjoy the adventure brought me joy and made the hard work worth it.

Most people know Emily loves The Wiggles, but they may not know how much music influences her life and our home. Emily and I love having music on in the house. We are almost always jamming to some tunes. I love country music, and Emily loves Rap, Pop, and HipHop. Her favorite artists are Meghan Trainor, Kendrick Lamar, and Lizzo. I saw that Lizzo would be performing at a new venue about 2 hours from home in June. I know Emily loves Lizzo, but taking her to a concert a few hours away would not be easy.

The chatter quickly ensued. Billie, didn’t you just listen to a podcast about this. Why does it have to be easy? She may hate it. It may be an epic fail but you won’t know if you don’t try. Okay. It won’t hurt to look at tickets. It is probably sold out anyway.

I opened my laptop and searched for Lizzo at The Acrisure Arena in Thousand Palms. I opened the website and searched for wheelchair seating. To my surprise, there were wheelchair and companion seats available, and the tickets were reasonable. I thought about asking Todd and Justin if they wanted to go, but I knew they would not want to attend. This is going to be a mom-and-daughter-only ~~experiment~~ experience. I took the plunge and purchased the ticket.

I decided to book a hotel room near the venue so I would not have to drive home late at night with Emily. Now, I am fully invested in this trip. There is no going back. I visited the ADA section of The Acrisure Arena website to get information about the services provided. The site notes that all restrooms are wheelchair accessible, and there are family restrooms. An adult changing table is available in the First Aid room on the same level as our seats.

They also have a drop-off area for those with limited mobility. This would be a great option if Emily could maneuver her own wheelchair and did not have intellectual disabilities. The reality is I can’t just drop Emily off at the curb and go park. I talked Justin into going on the trip with us. He will not attend the concert but agreed to be our chauffeur. He will drop Emily and me off at the venue, and be on standby to pick us up. I feel confident in having a plan for the BIG hurdles of parking and personal assistance.

The concert is now less than a week away, and I feel more excitement than I do fear. I have been telling friends and family that it will be an EPIC adventure. It will be an epic success or an epic failure. There is no way to predict how Emily will show up. She may be overwhelmed and overstimulated and Justin will be picking us up right away or she may be thrilled and have a great time. Come back next week to find out how it all plays out. No matter what happens, it will be memorable, and there will be more stories to share.

*Posts from our trip across the country: Hard Doesn’t Mean Don’t, Six Days on the Road…Fourteen to Go, Wonderful But Not Restful Trip

Celebrate Doing Less and Connecting More

Sunday, May 21st was World Meditation Day. I had planned to attend Michael O’Brien’s live class on his Pause Breathe Reflect app. I was looking forward to the meditation. There is something magical about meditating live with others and Michael has created an incredible space and community. The collective energy is indescribable. It is fuel for my soul. I was lazily enjoying a calm Sunday with Emily, the pups, and Todd, when I looked down at my watch. It was 10:08 am. Damn it! I missed the meditation. (I know. This is FANTASTIC self-talk before a meditation. Insert sigh.)

As I grab my phone to log into the application, I am still cursing myself in my head. This is ridiculous! I know, but yet my brain is very judgey at times. I log in and choose not to be on camera since we are all still in our pajamas. Just as the screen pops up, Michael welcomes me by name, and I realize I am not late. The app was experiencing technical difficulties, and I was right on time. God had my back. Everything is in His perfect timing, right? It was an incredible 20 minutes of meditation, silence, and conversation that I got to experience with my family.

I was calm and collected after the meditation–for about 5 minutes. Then my thought bubbles started coming at me in rapid succession. Why are you still in your pajamas? You have so much that you need to do. You haven’t even thought about writing your weekly blog. What is wrong with you? You are behind. You need to quit wasting time. You have to switch the laundry, and Emily’s medications aren’t ready for the week. What about a dentist appointment for her? You still haven’t found someone and got a date for that? What can I do about that on a Sunday anyway? Are you posting anything on your socials today? You should be posting more. You have been very disengaged online lately.

You get the picture. I was judging every action or inaction. While everything I was thinking was true, what else was true? Those thoughts only shared part of the story. We often only focus on what we haven’t accomplished or haven’t done and not on what we are doing.

The rest of the picture was that life has been challenging the last few weeks. We have had visits to the emergency room, family emergencies, illness, plumbing issues, work issues, and insurance issues. I have been in full putting-out-fire mode for weeks. Todd and I have not connected much in the past month, and I felt distant from him. He has fully recovered from strep throat, and spending a Sunday in my pajamas, resting, and connecting with my family is productive! It is all that was important. The meditation was a bonus. If I had missed it, then it wasn’t meant to be.

We get caught up in thinking we must always be doing, even when we know our bodies require downtime. Relaxation and refueling are critical, and connecting with those closest to me will always be a good use of my time. My weekend was fantastic. I got to spend quality time with Todd. We spent time laughing and watching dumb shows. We made plans for later in the month. We discussed plans for our home and our yard. The must-be-done list happened, and the rest did not.

I find myself comparing my productivity to others. I want to accomplish more than the boundaries of my life will allow. I keep comparing myself to what my friends and family accomplish each day. This isn’t a competition, and this does not serve me well.

I downplay how much I accomplish daily. I discount the value of caring for Emily. Isn’t providing her impeccable care the most important job I have? I work hard every day! When I get the opportunity to stay in my pajamas, drink coffee, and enjoy doing nothing with my family, I want to honor and celebrate the heck out of that. When I am gone, I want to be remembered as someone who brought joy and love to others. I cared for my friends and family. I gave them memories they hold onto after I am gone. Maybe one of those memories will be sitting in our pajamas, drinking coffee, and meditating together. Not a bad memory to have in the banks.

Disability and the Church: Our Family’s Story

When I was pregnant with Justin, I met a neighbor who was pregnant too. It turns out our children were due less than a week apart. We became fast friends. One week she invited us to attend her church. Todd and I had never attended church together in our marriage. I would go alone at times, but never a consistent practice. As Cindy shared about her church, I realized it was the same church a coworker attended and had invited me to in the past. I discussed it with Todd, and the following Sunday we decided to visit. We continued to go to church every Sunday after that.

While Todd and I rarely missed a service, we didn’t discuss our beliefs or faith. Todd knew I grew up going to church, but he did not. I vividly remember the Sunday morning we found out I was pregnant with Emily. I took a pregnancy test before church, and off we went. It was the first Sunday of the month, and Communion would be part of the service. Todd had never taken Communion, and I remember leaning over to him and reminding him what it would mean to take Communion. As the bread and juice were passed, he took both. In retrospect, it was a defining moment in solidifying my foundation in my faith. God knew that our family would need more than a good man, but a man of faith for the challenges we would endure. (And boy we have endured challenges.)

Our church family became an important part of our lives. When Emily was born, my church friends had my back. They supported us like no one else. Friends offered to help with Justin and take him on play dates. We had meals dropped by. I even remember friends coming to clean my house when I was struggling. They supported us through the loss of our business, financial struggles, mental health issues, and other monumental moments in our family. We had a place that was our home, and where we were welcomed with open arms.

As Emily aged, it became more challenging to take her to service. The nursery and preschool programs were on the ground level, but the programs for older children were on the second floor, and the church did not have an elevator. Since Emily depended on a wheelchair and was becoming too heavy to carry, the second floor was not an option. Emily was allowed to stay in the preschool class long past preschool age. As she got older, she became more distracting and disruptive in the preschool class.

I volunteered at the church on Monday mornings doing various office tasks while my kids were in school. One day I was approached by someone in leadership. She wanted me to know that at some point they would no longer be able to accommodate Emily. Due to the lack of accessibility and her disabilities (not her exact words), we would need to figure something else out for her. I felt like I had been punched in the gut. I held back tears as she explained the facts. She wasn’t unkind or cruel, but the hurt was almost unbearable. My heart was breaking inside, but I did not let it show. I was devastated.

When Todd came home from work, I shared the conversation we had. I could see the hurt and pain on his face. Often when my husband is hurt, it is expressed with anger, and this time was no different. Todd said that if they wouldn’t accommodate or accept Emily, we would not go back. And we didn’t. For almost ten years, Grace was our sanctuary. It was our second home, and overnight it was gone.

It still hurts to open this door and share the experience. God’s house is the one place where I thought Emily would always be accepted. Maybe I was naive. I remember my mom sharing a story about the day my Great-Grandfather left the Greek Orthodox Church. He was sitting in the service, and a baby started crying. The Priest asked the parents to leave the service with the crying baby. As they got up to leave, so did my Grandpa Nick. As he walked out, he said, “If crying babies are not allowed in God’s house, then I am not staying here either.” He never stepped into the church again.

I would love to say this was an isolated incident, and we found another place to worship that embraced ALL of Emily and our family 100 percent, but that is not how this story has gone. Todd and I have attended at least 5 other churches. They all welcomed us at first. Emily has sat in the main sanctuary with us at a Calvary church for weeks. She lasted through most of the service, and then I would walk her outside if she became too restless or disruptive. One Sunday, the Pastor greeted us after church. He mentions next Sunday is Easter and asks if we can sit in the room for nursing moms and watch the service on the screen. Our family did this, but then it was expected we would go there each week, and I refused to go back. I can watch a church service from the comfort of my home.

Other churches have special needs ministries for children but not older kids and adults. One church we attended had a ministry for disabled adults, but they were isolated from the congregation, and I could hear Emily’s vocalization from the main church. I was uncomfortable. We have not found any church that embraces Emily’s intellectual disabilities and behaviors completely and welcomes our family into the fold completely. After many attempts, we gave up, and I am content with that decision.

Our family hasn’t attended a church service together in over a decade. When Justin was in high school, he would sometimes get jobs playing the trumpet at a church. Todd or I would attend the service (one would stay with Emily). I never said that I was going to service. I would say that I was attending Justin’s gigs at the church.

Emily is almost 23, and church attendance is not a part of our lives or in our plans. For years I struggled with our reality, but now it is a loss I have grieved and moved on from. God is everywhere and I can find Him anywhere. There are no barriers or obstacles, and He knows my heart.

I pray one day established churches do better at meeting the needs of all believers. One day they will accommodate and embrace all of God’s children. They will fight for the rights of the born children as hard as they fight for them before birth. They will fight for children and adults that are challenged, disabled, and need others to care for them. They will make their buildings ADA compliant, not because the law requires it, but because it is the right thing. They will accept children and adults that are loud or even disruptive, because God has made them perfectly just as they are, and He accepts them. They will reflect God’s love for all of His people made in His image, including adults like Emily.

“The servant came back and reported this to his master. Then the owner of the house became angry and ordered his servant, ‘Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind, and the lame.’ – Luke 14:23

Intellectual Disability and the Dreaded Question: Is She in Pain?

Fear. Panic. Helplessness. Those are the feelings that swept over me as I lifted my daughter up from the toilet seat. There’s so much blood. I cleaned her up and washed my hands. I grabbed my cell phone, took a photo of the bowl (really), and sent it to Todd. He helped calm and ground me and explained that it was probably nothing to worry about but to call and make an appointment with her doctor. I called and left a message with his office and then contacted Dr. Google. I was reassured by Dr. Google that the bright red color was a good sign, but there were questions about pain levels. I cried because I had no idea if Emily was in pain.

The nurse returned my calls later in the day and said there weren’t any appointments available in our medical group and that I had to take Emily to Urgent Care. My heart sank, and I felt anxiety creep in. The severity of her cognitive delays makes any appointment challenging, but going to an Urgent Care is next level. I knew I had to put on my big girl combat boots and do what needed to be done. I packed everything I thought we might need for a long wait at Urgent Care and drove in silence to pick Emily up from AbilityFirst. I needed a few moments to process my feelings and reframe my thoughts about the situation. I can kick and scream my way through the next few hours or proceed from a place of acceptance. I decided the latter would serve not only me but Emily best.

We entered the Urgent Care, and to my surprise, the waiting area was empty. We arrived during lunch and we had to wait a bit, but we were first in the queue. This gave me peace of mind because Emily was not thrilled about our destination and was letting the staff know–loudly. The nurse called us in. He tried repeatedly to get Emily’s blood pressure. I asked him to stop because it seemed to be upsetting her. (I know how uncomfortable it is when the damn blood pressure machine doesn’t get a read.) He tried one more time and then conceded. He asked about pain levels, which I could not answer. He finally got her heart rate to register. It was elevated.

The nurse practitioner did a quick check for anemia and performed a physical exam, and could not conclude the cause of the blood in the stool. She was concerned about the elevated heart rate and that she was unable (after several more attempts) to get Emily’s blood pressure. She explained that elevated heart rates often coincide with blood loss, and she thought it was best for us to proceed to the ER. Fear of the unknown and lack of information began to take hold once again. As I waited for the nurse to bring the paperwork for the ER, it dawned on me that this was the first time either of my kids was ever going to the ER.

After a short wait, the nurse practitioner, not the nurse, returned with the paperwork. She sat next to me on the bench and gave me a hug. She said, “I wanted to tell you that I have been a nurse practitioner for almost 30 years, and I have seen everything, believe me. I just want you to know in case no one has told you that you are an incredible mom. I see you with your daughter, and I see it. Know you are doing everything you can for her, and I know it isn’t easy.” It was the kindest thing she could have said to me and strengthened me for the next leg of the journey. I barely held it together as I left the office. I cried all the way home.

Todd arrived at the house at the same time as Emily and me. We gave Emily a few minutes to rest and regroup before heading to the ER. We made sure she was dry and comfortable and let her crawl around for a bit. We turned on The Wiggles, and she was content to have a break. Todd and I loaded Emily and the additional gear into the van. Off to the ER, we went.

When we got to the security gate at the ER, the security guard informed us only one of us could go in. I tried to reason with him that Emily would need both of us for this visit, but he told me it was policy. Todd asked him to get a supervisor, and he refused, so Todd pushed Emily past him and went into the ER. This was great, except I was outside with all the paperwork and insurance information, and the security guard was not letting me pass. I was crying (again) and told him I had all of my daughter’s medical information. He states, quite rudely, that my husband made the decision as to who was going in, and it wasn’t me. I was trying to remain calm as I was wearing my blue Pause Breathe Reflect shirt (and the hoodie too). A moment later a nurse came outside and escorted me into the building. The security guard made some other comment under his breath, but I just walked past him and ignored it.

Things went better than expected inside. The ER was bursting at the seams with patients. We huddled into a corner, and staff came to check us in. We went to another corner of the ER where our nurse (the same nurse that freed me from security), Heather, began to take Emily’s vitals. She prompted Todd and me where to hold Emily’s arm and shoulder to reduce motion. She was kind and patient. She noted that Emily’s heart rate was elevated, and it was probably because she was pissed off that she kept trying to get her blood pressure, and she was uncomfortable. After a few adjustments, she got Emily’s blood pressure! I was thrilled and may have told her she had to go with us to every future medical appointment with our family. Her kindness and tolerance of Emily were above and beyond. As we discussed medications and history, she shared she has two adult sons with Autism. Oh, we were in the hands of someone who “gets it”.

The lab tech, Justin, came into the waiting area to draw blood and had zero issues. I think all the commotion in the waiting room and activity distracted Emily. She was in her wheelchair with Mom and Dad by her side, and the blood pressure cuff was out of sight. She barely made a peep, and her squirming was easy to minimize.

The doctor did another exam. My poor girl. She could not find any obvious issues. Emily’s labs looked good. She prescribed some steroid suppositories (oh joy) for the next 10 days and told us to follow up with the GI specialist for further diagnostic testing.

I dropped Emily and Todd off at the house and went to pick up the prescription that was not covered by insurance (even though it is generic and there is NO alternative). It was almost 9 pm, and I was just done. I handed the pharmacist my debit card with gratitude that we had the money to cover the cost.

For now, we treat the symptom and wait for answers. It is difficult to watch your child face a health issue and not be able to express what she is feeling. Is she in pain? We were asked that question many times today, and we cannot really answer the question, and that part sucks. I am grateful we have access to medical care, even if the system is screwed up. I am thankful that Todd was there to support me. I grieve because Emily is unable to communicate her pain and discomfort. I am grateful for Nurse Heather. I am disappointed that Emily’s medical care is not as good as it was when she was a child. I am grateful Emily has the support of a family that loves her and wants the best for her. I reside in grief and gratitude as I reflect on the past 24 hours.

Caregiving: A Group Project, Not a Solo Mission

During the pandemic lockdown, I shared the mental impact of isolation on our family. Emily was agitated, distraught, and angry. I was beginning to experience the taxation on my body, mentally and physically, as our family navigated the world with a limited supply of support and services. When schools reopened, and Emily’s after-school program resumed, it provided much needed relief. We settled into a new normal that offered more support outside of our home and an opportunity for Emily to interact with her peers and get out of the house. Emily had a great final year in public education, and our family began to feel supported. I had time each day to sit in stillness, catch my breath, and care for myself.

Man, did that year go fast! In August 2022, Emily aged out of the public school system and her after-school program. Some of the support and caregivers that came to our home during the pandemic went back to full-time jobs, changed careers, or moved out of the area. Support was once again an essential missing piece. It is possible for me to care for Emily 24/7, but the cost is my health suffers. It is often mentally and always physically exhausting work. I have said for years that it takes a village to care for my daughter. Meeting the needs of a child with severe physical and intellectual disabilities is not a solo job. I cannot do the job on my own forever and ever. It is not sustainable.

In January, I hosted a vision board workshop for local mothers that are part of We Are Brave Together. It was a wonderful way to set intentions for the year and create a visual representation of what I wanted for my family in 2023. As I thought about what I wanted in 2023, I realized I wanted more caregiver support. The last six months had felt like the pandemic years all over. I was beginning to count on old habits to address stress and fatigue. I knew staying up late watching television and eating and drinking were not viable solutions to manage stress and fatigue, however, these habits are easy to deploy and gave me a false sense of stress relief at the end of the day. I realized it was a train I needed to quit taking regularly. The answer to my problem is not found on Bravo or in popcorn and a glass of wine. The solution is creating more support to shoulder the load of caring for Emily.

The problem: I cannot sustain this level of care for Emily without my health deteriorating.

The solution: I need more caregivers for Emily. This is a group project. It is not a solo mission.

I spoke to Emily’s caseworker at Harbor Regional to inquire about getting more resources. I was offered some personal assistance hours to add to our monthly respite hours. While this was fantastic, I have yet to find a reliable assistant through the service provider. It is already April, and I have not been able to utilize the hours we received in January.

I included on my vision board caregiver support and outsource and delegate. I continue to look for a solution to the shortage of activities and care for Emily outside of the home. Emily attends the AbilityFirst Adult Day Program during the week for five hours. I am hopeful a full-day program will be offered in the future. (This was provided pre-pandemic but not since.) I recently found a caregiver who comes twice a week to bathe Emily. This has been a game changer for my physical well-being. I appreciate the support in this area. She will also take Emily for walks and on excursions.

This past weekend, Todd and I had the opportunity to stay at The Hotel Maya in Long Beach for the night. I found a caregiver willing to stay at our home for the night and care for Emily. She provided fantastic care, and Emily had a wonderful time. The gift of sleeping in at a hotel was beyond incredible. Todd and I got to sleep in and then enjoy brunch uninterrupted overlooking the Long Beach shoreline. It was magnificent and magical to have that 24 hours of time away from our responsibilities together. It was precisely what I needed for my mental and physical well-being.

I hope to create more opportunities for Emily to stay overnight with a caregiver in the future so that Todd and I can have extended respite together. It is important for our relationship to have time to connect outside of the home and without the responsibility of caring for Emily.

It is imperative that I stay vigilant in bringing my vision for more outside care and support for Emily to the forefront of my mind. I must not let myself get complacent and give up on searching for a network of caregivers that can support Emily and our family. Our family cannot rely on one caregiver to meet our needs, as I know from experience, one person cannot do it alone. Here’s to 2023 being the year of successfully creating external support for Emily, our family, and our increasing need for assistance.

Can Caregivers Win the Numbers Game?

Extreme caregivers have more days that can feel overwhelming, stressful, and exhausting than most people. We also know our mind wants to protect us, and it wants the path of least resistance. This can be a challenge. Challenging days are stressful, and our brain wants to relieve our suffering as quickly as possible. As I shared last week in my article, the fastest relief comes from things that will not serve us well long term. Repeatedly choosing to overeat, overdrink, and binge-watching shows in lieu of rest will negatively impact our health long-term. It becomes a vicious cycle that can be hard to escape.

Remember the Staples commercials with the easy button? When we react and press the easy button over and over, we do not teach ourselves to process stress in a healthy manner. Is there any hope for caregivers to manage caring for others and themselves? Is it even possible to care for our loved ones 24/7 and ourselves too? What actions can we take to lessen the impact of extreme caregiving on our overall well-being? I think we can spiral in the enormity and gravity of the problem, or we can look for small, actionable steps that we can take to lessen the feelings of overwhelm, stress, and exhaustion that have us reaching for the red button.

There are a few simple things I implement daily that improve my mental, physical, and spiritual well-being. Nothing takes time away from my family, and while they seem small and insignificant, they are actually the big things.

The first thing I do, when I wake up, is drink at least 16 ounces of water. Before I do anything else. If the rest of the day goes down in flames, I have started my day hydrated. Water is essential. Often, when we feel fatigued, hungry, anxiety, our body needs hydration.
I spend a few minutes each morning before I get out of bed or look at my phone, meditating or sitting in silence. I listen to the thoughts that come up. If my thoughts are shady or unkind, I gently counter them with loving-kindness. I meditate and set an intention on how I will show up and face the challenges that may come my way.
I reduce friction and decision fatigue by making a plan every day. I write down on a piece of paper what I will do. Yes, an old-school planner. I write my three top priorities for the day, and sometimes REST is the priority, so I write that down. There have been days where REST is the only thing I know must happen. I also roughly plan my meals and how I will move my body. I set simple movement goals that are attainable. (Ride the bike for 10 minutes. Stretch for 5 minutes. Walk around the block.)
At the end of the day, I write down moments of gratitude or things I am grateful for in my life. (At least three things.)
I set my phone to not disturb from 9 pm to 6 am daily, AND I put it a bit out of arm’s reach on my nightstand.
I remind myself each night how much better I will feel tomorrow IF I choose not to eat, drink, or stay up late watching shows. It is a gift to my tomorrow-self, to seize rest and relax tonight.

Creating simple morning and evening routines is a great way to win the numbers game. These strategies will not always work, but when they do, you decrease the number of times you let your impulses or urges be in charge of your actions. You take control of your wellness and care. You begin to apply the strategies you use to care for the ones you love to yourself as well.

Extreme Caregiving Can Influence Our Choices

I was recently described as an extreme caregiver. I was unfamiliar with the term and unsure if it was an accurate description. Anything that includes the word extreme is not something that I find relatable. I am moderate in most things. What is extreme caregiving, and does the label fit?

Lisa Freitag, the author of Extreme Caregiving: The Moral Work of Raising Children with Special Needs, says, “Extreme caregiving involves the taking on of professional medical roles by a nonprofessional parent. It differs from both ordinary parenting and professional caregiving in that it is done in the home, often without respite or foreseeable endpoint. Unlike professional caregiving, it involves an intensely personal relationship between parent and child.” When you say it like that Lisa, I think I may be an extreme caregiver.

What makes life more challenging for those of us caring for another human for the foreseeable future? Are we able to manage the struggles, even when we have the mindset and tools to cope? What sacrifices are we making to care for our loved ones? These are the first questions that popped into my mind as I contemplated this topic. I do not have the answers to these questions, but I have some thoughts.

Last night as I was getting Emily ready for bed, I realized I had changed 1,000s of diapers. I have been changing diapers for almost 25 years. I started doing the math in my head and lost count repeatedly. Most parents remember the first year of raising a child as being challenging. Infants cannot tell you what they need and interrupt your sleep. They need to be fed and changed every few hours. While parents may miss the baby stage, they are happy when they no longer require so much hands-on attention. The parents get more sleep and time to tend to our own needs. I cannot relate to that parenting experience, because it is not my reality. Emily didn’t sleep through the night until she was 8 or 9 and began taking sleep medications. She still depends on others to feed, change, bathe, and dress her at 22.

I consider myself skilled in managing and adapting to challenging situations. I have not only acquired many stress management tools, but I use them. I implement healthy practices each day that allow me to deal with stressful situations. I exercise regularly, get out into nature, walk, prepare healthy meals, meditate, journal, and practice managing my thoughts. Even with all the resources and knowledge, sometimes I just want to zone out with jelly beans or a glass of wine.

Many caregivers, myself included, have used food, alcohol, binge-watching TV, and other vices to cope with the stress of extreme caregiving. The reality is caring for someone that depends on you is difficult. The job is never-ending, the obstacles are many, and the pay is terrible. Sleep, balanced meals, exercise, and connection are often nonexistent. At the end of the day, when we finally tuck our special, demanding, and often overbearing loved one into bed, we exhale for the first time, and then–we may buffer.

Break out the cheese (or jelly beans). If you give a caregiver a slice of cheese, they may want a glass of wine to go with it. Cheese and wine go great with Netflix or Hulu. Maybe a romance novel or solitaire on our iPad. It feels innocent and luxurious. It has been earned! It fills a desire to escape or forget the heaviness from our day. It is a way to unwind and decompress after a long day of caregiving. We don’t get vacations, days off, or breaks, so we escape on the sofa. It requires no brain power and little effort. Serve. Pour. Hit play. Repeat.

We may use healthy stress management tools a majority of the time, but the number of situations where we are overwhelmed, exhausted, or stressed out is probably higher than the average person. I believe it is a numbers game. Extreme caregivers have more days that are exceptionally challenging. We are busy meeting needs that cannot be tabled until tomorrow (like feeding, sheltering, and clothing loved ones). We cannot take a break and leave tasks undone. We push through until we can take a moment to ourselves. Most days, rather than some days, are exhausting. Hence, more opportunities to decide how we will handle the heaviness, and we are not always going to choose well.