Conversation for Change

Creating a Moment of Care in the Chaos

Raising children is accompanied by a list of never-ending tasks. The to-do list is never finished. When our child (or adult) has complex developmental or intellectual disabilities, the list is long. We are expected to work a full-time job, maintain the home, transport our kids to countless therapy and medical appointments, along with school and homework, and make sure our family is fed at least one balanced meal. (One that doesn’t include someone asking if we would like fries with that.) Did I mention the laundry? Well, that never ends too. It is a lot. It can feel overwhelming and impossible. We then turn on the television or open our social media to catch a moment of normalcy, only to be bombarded with memes, commercials, and reels taunting the importance of self-care. Everyone is preaching to us to fill our cups first, and we must learn to manage our time better and ask others for help. We put a checkmark beside GUILT on our mental list of inadequacies as parents, employees, and partners.

How do we make it work? How can we take care of our partners, children, job requirements, our homes, and have anything left for us? How can we be expected to be our child’s therapist, nurse, parent, Lyft driver, maid, personal shopper, and take impeccable care of ourselves too? The truth is, we can’t. The pace is not sustainable, but how do we change things? Many of us do not have a network of support or respite workers. The supply of qualified care is short, and the demand is great. Some parents, especially in rural areas, do not have access to agencies and services to provide support. Many do not have money to pay for caregivers to provide respite.

The effort required to create time to care for ourselves can be taxing and exhausting, and we have no energy to even attempt it. Many parents give up even trying. I spend many hours procuring care for Emily and making plans for her. She gets so bored being with me. There are days when all she does is whine for hours. She protests in her own way being stuck with me. Those days are often the most difficult (and also why I keep a pair of noise-canceling headphones in my possession).

I am persistent enough to keep looking for caregivers to not only provide care for Emily but who are willing to entertain and engage with her. Emily loves having caregivers that are closer in age to her. She wants to engage in the typical activities of a young adult. Go out shopping and go out to eat. She wants to be on the go and out of the house. I get it. She is twenty-two and ready to groove. I am also flexible and know that sometimes caregivers will cancel or be unavailable when I need someone. I adjust accordingly and get creative.

I don’t let the difficulty of the task deter me from trying. My sanity depends on me getting breaks. Little breaks daily and longer breaks whenever possible. Caring for Emily 24/7 is exhausting and often not rewarding. I do it because I love her and want the best for her. I also want the best for me too.

Even when I cannot get away from caring for Emily physically, I can mentally. There is no excuse for me not to give myself some respite every day. Even if it means I daydream that I am on a beach in Greece, soaking up the sun while staring out the kitchen window as I wash dishes. It can be dancing around my living room with reckless abandon as Emily looks on with amusement and maybe even a giggle that makes my heart smile. Self-care can be seeking a moment of gratitude in the most challenging tasks. (These usually involve excrement of some sort. Oh, the joy!) I take a moment. I am lucky to have a washing machine and hot water. I am thankful for gloves and a handheld shower sprayer. I am grateful for sheets and diaper wipes. Oh, how many times I have expressed gratitude for diaper wipes! Someone told me once that even when you cannot take care of yourself physically, you can always care for yourself mentally. I find a way to nurture my mental well-being every single day.

Everyone around us is screaming for us to take care of ourselves. If we don’t, we will burn out. We feel guilty if we do it. We think caring for ourselves means we must stop caring for our loved ones. That can feel true. It is also true that we can find ways to nurture and care for our souls while we are caring for our loved ones. We can learn and practice escaping in our minds. Remember daydreaming? We take a break in our souls. We take a few minutes to pause, breathe, dream, and create the feeling of calm or joy we desire. It isn’t as hard as we make it. Think about someone or something that makes you smile. Picture a giggling baby, a kitten, a puppy that befriended a duckling (I just saw this and it made me feel happy), a loved one that made you feel loved and nurtured, or a bird singing outside your window. The sky’s the limit! As you picture something in your mind that makes you smile or feel good, notice a sense of calm creep in. It might be fleeting, and that is okay. Every time you take a minute to change your emotional state from the inside, it will begin to improve on the outside. I do not live a life where I can physically care for myself whenever I want, but I can always take a moment to find something to be grateful for in a moment of struggle. Sometimes, it might just be letting out a long exhale. Oh, the beauty and joy in the exhale.

The Gift Of Unlearning: Raising a Child with Intellectual Disabilities

I remember the day Emily was born. She came along twenty-two months after her brother, Justin. It was such an easy delivery. The doctor barely arrived in time to catch Emily as she emerged from the safety of my womb. I remember teasing the doctor that she shouldn’t get paid to come in just in time to catch my girl. We had a good laugh. We did not know with certainty that we were having a girl. (Justin was always certain he was getting a baby sister.) Dr. Schwartz asserted that she knew Emily was a girl because her hand was the first body part to emerge. “The girls always come out with their hand out first”, she said jokingly. This was the setting of my delivery. It was fun, laughing, joking, and calm. The vibe was high. The delivery was wicked fast. Emily was perfectly healthy.

Emily’s delivery was such a contrast to her older brother’s birth. Justin was in fetal distress. The umbilical cord wrapped not once, not twice, but three times around his neck. The delivery process was too far along to do a C-section. He was vacuum extracted, and he was not breathing. I was terrified. Todd wasn’t able to cut the umbilical cord, and the doctor apologized for this, but Todd didn’t care. He just wanted Justin to be okay. The doctor passed Justin to a team that was waiting. As I looked at his incubator, I could not see Justin. I only saw a sea of yellow blocking the view. Justin was surrounded by a medical team trying to get him breathing. I kept asking if he was okay. My mom and Todd kept telling me everything was fine, but I refused to believe them. As the doctor began stitching up the incisions she made to expedite Justin’s entry, all I could do was cry and pray he would breathe. When he finally let out a cry, I finally exhaled.

I have reflected on the tale of two deliveries for years. Justin, while having a challenging time coming into the world, was not impacted by it. He is brilliant and physically healthy. Emily’s birth, while easy and uneventful, was followed by challenges. She has both physical and intellectual disabilities. I remember when my healthy baby girl began to lose weight, and I sensed she had some physical delays. The fear of anything being wrong consumed my thoughts. When one of the specialists we saw thought that Emily might have Cystic Fibrosis, I was terrified, but I believed it was something I could handle.

With great clarity, I recall the conversation Todd and I had after Emily was tested for CF. As we shared our worries and fears, I distinctly remember telling Todd that I could handle anything that might impact Emily’s physical progress, but it would devastate me if she had cognitive delays. As long as Emily could talk, we would be okay. I believed that an inability to communicate with words, or read, or write would be the worst thing. I love conversation and I believed having a child that was unable to do that would be impossible to process. What kind of life would that be without words? I didn’t think I could handle Emily having an intellectual disability. Twenty-two years later, Emily’s intellectual disability hasn’t crushed or destroyed me. I was so wrong.

I understand the woman I was when Emily was born and the biases I had. My parents valued education. Intelligence was associated with your worth. My mom never gave a damn about looks or status, but she did care if you could conjugate verbs and articulate well. It wasn’t just my parents, but society values intelligence and education. Often individuals that are unable to speak to communicate and express themselves are looked down on. The intellectually disabled are often seen as “less than” by society. I am ashamed that I once shared this view to some extent.

Emily shined a bright light on my beliefs and helped me see just how flawed my views, the views of my parents, and the views of society are. She has challenged the validity of my thinking and proved that her intellectual disability is not something I could not handle. It did not need to be fixed. She has shown me that her gift and worth are equal to every other human on this planet. Her worthiness is not dependent on her IQ or ability to write an essay or recite a poem. She is worthy and whole exactly as she is. I am proud that Emily has taught me to see things differently. She has expanded my views and changed my perspective. I have learned to unlearn. It is my hope that Emily and others that walk a similar journey help others unlearn too. As we unlearn things we think are true, may we grow in our ability to accept each person fully and completely as they are.

Dancing in Disconnect

This past weekend, Todd and I decided to take the family camping for the long weekend. Justin wanted to stay home and have friends over, and he agreed to care for our senior poodle, Coco. We chose our location and planned our meals. I prepared all the things needed to take Emily on a road trip. We spent Thursday night loading up the trailer and finalizing the details.

I was up before the sun on Friday to prepare Emily’s food for the day and pack last-minute items. In the middle of this work, Coco vomited in the hall. As I was cleaning up the mess, she got sick again. She has always had a sensitive stomach, and while I was feeling bad for her, I also was annoyed because it was not on my list of things to get done to leave. Todd appeared soon after. I greeted him but my tone conveyed I was annoyed. He presumed I was mad at him, and things went downhill from there. I tried to explain that I was just frustrated and he had nothing to do with it, but my words were not registering.

The cloud of annoyance and frustration followed us to the campsite. Todd remained distant and curt, and I focused solely on Emily. This dance of discontent and distance proceeded for the next twenty-four hours. On Saturday evening, I demanded we have the campfire we had planned. (I didn’t care if it was the last thing either of us wanted to do.)

After I got Emily in bed, I poured a glass of wine and went to sit by the empty fire pit. My thoughts were racing. We are not on the same page, and this is frustrating me. We may not be on the planet at this point. I think we are in different solar systems! I just want to pack up and go home. We usually connect well when we camp. We get away from the noise, work, and responsibilities. What is going on? We have to talk about this and clear the air.

Todd, seeing me alone, decided to come outside. He silently went to work to build a beautiful fire. He made sure it was perfect. I knew this was his way of meeting me in the middle. He came and sat next to me and touched my hand. It’s now or never. Let’s open up and see what happens.

“We haven’t really been communicating well this weekend,” I said.

“You’re right. We haven’t,” Todd replied.

The simple act of naming and claiming it created an opening for a conversation. We created a space for each other. As we watched the sun begin to set and the stars started to grace us with their presence, we began to speak to each other, and more importantly, we listened. I thought about the past week and getting a diagnosis for Emily. It was big news for both of us, and while I was elated and overjoyed, I never stopped to ask Todd how he felt about it. I spoke to everyone else but not to him. I asked him about his thoughts and feelings. We shared openly about it. Todd is still processing having the diagnosis and what that means. I, on the other hand, am off to learn and connect.

As the stars enveloped us in a breathtaking display, I was humbled. I recognized my part in the disconnect and miscommunication. I understood that Todd and I did receive the same news, but how we might process it would be different. We mostly sat silently after the Emily diagnosis chat, but I felt closer to him. Todd and I were sitting together and holding hands. We shared a dazzling display of the new moon sky full of stars. The Milky Way was the backdrop to clearing the air and showing up for one another in connected silence.

Note: I am not, nor do I claim to be an expert on marriage. After 30 years, I consider myself a novice in the skills of marriage. I am grateful to my friend Amy, who is a licensed therapist. She recommends The Gottman Institute for free and valuable relationship resources.

Finally Diagnosed: A Twenty-Two-Year Journey

In 2020 I was a guest on the podcast Once Upon a Gene. The host and I had a long discussion about Emily’s undiagnosed journey. I was very clear with the host (and now friend), Effie Parks, that I was okay not having a diagnosis. I knew a diagnosis was not going to change Emily or “fix her” and our family has an amazing support system. Despite my contentment with Emily’s undiagnosed status, Effie encouraged me to get updated genetic testing for Emily. “Science has changed a lot in 20 years. Don’t settle for a BS cerebral palsy diagnosis if it doesn’t fit Emily,” she said.

After that conversation, I thought about what Effie had said. Emily had a typical and healthy birth. She had an Apgar score of 10. It was picture-perfect. Nothing about a cerebral palsy diagnosis ever made sense to me but I rolled with it. I decided that at Emily’s next neurologist appointment, I would discuss getting authorization for a geneticist. Dr. Dyes agreed it was time to see if science might now have an answer they didn’t have in 2001 and 2002. She put in the authorization. The process of authorization for testing took two years.

The cheek swabs were done in November of last year and sent to the laboratory for processing. In December 2022, I got an email that there were new results in Emily’s MyChart. I logged in only to find I could not see or access the results. I left messages with the geneticist’s office and emailed the geneticist. On January 9th, 2023, I got an email from the geneticist that someone would be calling me from genetics to set up an appointment to go over the testing. The call never came. More messages left and nothing.

Last week I reached out to the company that processed the DNA samples, GeneDX ,to request the results. The customer support team was phenomenal. They sent me some forms to complete to authorize the release of the reports. Less than a week later, the results arrived in my inbox. I printed out the reports and studied them. The report for Mitochondrial Disorders / Sequence Analysis and Deletion Testing of the Mitochondrial Genome: NEGATIVE. My heart sank. Then I saw a second email that followed. I opened it and this one read Diagnostic Testing / XomeDxPlus / Clinical Exome Sequence Analysis: POSITIVE. Did I read that correctly? It says positive? I read through the report a few times but did not fully understand what I was reading:

I emailed the report to a contact I made at the Global Genes Patient Advocacy Summit last year. (Dr. Shruti Mitkus was on the panel I spoke on regarding the undiagnosed journey.) Dr. Shruti Mitkus is the Director of General Education and Navigation at Global Genes. She confirmed that the testing did find some answers and offered to explain how to read the report. She spent almost 30 minutes explaining each column and defining each term used. She was kind and supportive. She did not give me any counseling or advice. Shruti just explained everything in simple terms I could understand. I am very grateful for her time and the support of the incredible organization she works with.

Emily has TBR1-related neurodevelopmental disorder. There are several different variants that are associated with the TBR1 Gene. Patients with the T532Rfs*144, which Emily has, seem to have the most severe intellectual and developmental delays. Now that I had a diagnosis and some information about the disorder, I searched Facebook for a TBR1 group. I found a group and requested to join. I introduced myself and Emily in the introduction thread. The group administrator asked me to share Emily’s variant and I did. Within minutes, she connected me with 9 parents in the group that have a child with the exact same variant. While this disorder is very rare, I was able to find others that have it. In just a few minutes I was making connections to other moms raising a child with the same genetic disorder as Emily.

I was surprised at the emotions that surfaced. I was overcome with a tremendous sense of gratitude that there are other parents that have traveled a similar journey. As I scrolled through photo after photo, I thought WOW! Genes don’t lie. I cried after reading a post about two moms that have daughters with the same variant as Emily. They traveled with their daughters to meet in person and shared a few photos from the meeting. There is a photo of the 6-year-old girl being carried with her legs dangling to mom’s knees, and the 29-year-old in her wheelchair with her mom behind her. Both girls have chewy necklaces in their mouths. Both girls have long, skinny hands and fingers. It was like looking at the past and the future in one square photo. (Emily is being carried on my hip at 6 and Emily is in her wheelchair with me in the near future.) It was clear by my reaction to the images and stories I read, that I desired an answer more than I realized. We all want to know we belong somewhere and that we are not alone. The diagnosis, while not going to change anything, gave me that for Emily. She is not alone and she belongs. There are others that share her rare genetic disorder.

I will be sharing more about TBR1 as I learn more. For now, I will bask in the joy and gratitude of finding a group that I can connect with about struggles, joy, symptoms, and concerns on our not-so-typical and NOW DIAGNOSED journey.

Experiencing a Heart Smile

What makes you smile? That was the question we pondered in our listening circle group today. It was an easy question for me. “The better question to ask me is what doesn’t make me smile? I smile all the time. I smile at puppies, kittens, babies, commercials, and my kids, and when I connect with others. I am a smiler.” Is smiler even a word? Well, it is now.

I smile often. I smile freely. Thinking of something that brings me joy makes me smile and smiling often makes me think of something that brings me joy. It goes both ways. Smiling is a universal language. It is a way to connect without saying a word. It requires no words and it expresses so much. My mom taught me there is a lot of power in a smile.

My wise and wonderful friend, Patti, shared a powerful encounter she witnessed that made her smile. She described witnessing an interaction between two strangers. She called this type of smile a “heart smile”. I wrote the term down right away and drank in what she shared. There is power in the smile we share as we pass a stranger. The physical exchange of energy without words or interaction. There is also a smile that emerges when we bear witness to a beautiful human connection or interaction. This is a smile that grows from the heart and erupts onto our faces. It warms us from the inside and we express the warmth in a smile or grin.

Things that make me HEART SMILE:

A babies giggle or smile.
When someone takes time to engage and interact with Emily, knowing she will not reciprocate in a way that is expected. They do it anyway.
The dentist that wants to ease Emily’s anxiety by doing the exam outside on the grass to make her more comfortable.
Justin reading his 3rd grade essay in front of the school about his love and admiration for his younger disabled sister.
Todd buying new plants for “my garden” and spends hours toiling in the soil on his only day off to bring me joy.
A half-day retreat with 30 We Are Brave Together women connecting, sharing, and giving their souls some much needed love and compassion.
Experiencing Emily’s laughter or smile. (Something she does less as she ages.)
My dogs’ energy and excitement when I walk into their presence. (Even if I was just there 30 seconds before.)
A text or a call from someone I haven’t talked to in a while to tell me they were thinking of me.
My husband getting Emily ready for bed so I can write, read, or rest.
Live music shared with strangers. Everyone is connected by sound and energy.
Justin cheering Emily on as she tries to get something that requires her to crawl.
When my friend sees that Emily’s scarf is getting tattered and makes a new one.
It is an unexpected card in the mail.
It’s a neighbor sharing the bounty from their lemon tree with those walking in the neighborhood.
It is the woman who lives a few blocks away that runs out to greet Emily and give her a hair clip or flower.

As I complete this sparse list of heart smile memories and moments, I am smiling. The feelings and energy of these experiences and exchanges are fresh in my mind, in my heart, and reflected in the mirror with a big ‘ole toothy smile.

What makes your heart smile?

Different Path and Different Journey

“Normality is a paved road: It’s comfortable to walk, but no flowers grow.”-Vincent Van Gogh

Cradled in her arms is her first grandchild. At two months of age, Wyatt craves the comfort of a warm embrace and the sway of arms that hold him while he sleeps. As I watch Patti gently rocking Wyatt to sleep, the memories of my children as infants emerge from the depths of my consciousness. Holding a precious, tiny, and vulnerable human is an incredible experience. The infant depends on another human to meet every need. We hold them knowing that this is just a temporary season. One day they will begin pulling away from us and demanding independence, freedom, and autonomy.

Someday they will be able to express their wants and needs. For now, we try to figure out what they cannot yet tell us. Are they hungry? Are they thirsty? Are they tired or overwhelmed? Do they need to be changed? Do they have gas or is their tummy upset? It’s a guessing game, until one day it isn’t. One day they reach for the bottle or cup on their own. One day they pick up the Cheerio or cracker and pop it into their mouth. They begin to see themselves as separate from you. They are no longer dependent on others and can begin to make decisions for themselves, or at least that is the natural progression for most children.

As the memories of both my kids as infants and toddlers surface, I am also reminded of the moment, or moments, when each of my children got to any fork in the road. One child always traveled the asphalt trail that was clear of obstacles. His path was easy. It was smooth, straight, and easy to walk. Justin began to drink from a cup and learned to fall asleep on his own. He began walking and talking. His problem-solving skills continually developed and his desire for independence emerged and grew with each success. It was a typical path with mile markers and clear signage to guide him on his journey.

Emily turned down the other road. This path, not well marked, was overgrown with bushes and trees. It required clearing the debris along the way in order to go any further. Many stops had to be taken to rest as the journey was hard, at times impossible. There weren’t any maps or guides to help her traverse the terrain. It was too difficult for her to travel alone. She was unable to walk the path and had to be carried every step. The trail requires maximum assistance to travel and some parts will never be experienced as the difficulty is too great even with help.

There are years that pass without seeing any signs or mile markers. She crossed mile marker two before ever drinking from a cup unassisted or sleeping through the night. She began to crawl somewhere between mile marker three and four. At mile marker 22, she still requires help to drink at times, someone must assist her to eat and she depends on medication to sleep. Now too large to be carried, she must be pushed in her wheelchair. She will never be able to travel this road solo and experience the freedom and independent travel others experience. Yet, this journey, this path, is never boring or mundane. It is always challenging, and exciting, and the scenery is unique.

The journey started the same with both of my kids. I remember holding them, rocking them in my arms, and counting their fingers and toes. The beauty of caring for them and assisting in meeting every need. It was beautiful and satisfying to watch Justin find his independence. But that was not the path for Emily. She will always need me (or someone) to assist her in meeting her needs. Her journey will never lead to her independence, and her path will often be challenging and difficult. We will continue to learn and grow as we travel with her. While this path is difficult, and the trail often treacherous, it is also beautiful. The flowers are fragrant and unique. The views often stunning. This trail has introduced us to guides, angels, opportunities, and lessons we would have missed had Emily traveled the easy, paved, and well-worn trail.

The Urban Farm Era Coming to a Close

Last week as I processed the pearl-sized loss of my goldfish I got hit with another small loss. On the anniversary of my dad’s passing, my sweet Tinkerbell was taken from the coop by raccoons. Tink was a beautiful bantam Buff Brahma that we acquired in June 2016. A result of a very cruel senior prank at Emily’s high school. The seniors thought it would be cute to release baby chicks, chickens, and other animals on the campus. I am not sure what happened to all the animals, but our family adopted two bantam chickens to add to our crew. Siouxsie, a Frizzle Cochin that had wild feathers that went every which way. She reminded me of a punk rocker from the 80s.

Many of you may not know that for years we ran a sort of urban farm in our backyard. Our yard, complete with a swimming pool and deck, also housed several chickens, a garden, and a compost station. I was not down for any of it, except the chickens. My friend was tired of being the only one in the family to care for her chickens, so she decided to rehome them. Todd and I jumped at the chance to have chickens. She gifted us with the coop, food, and 3 lovely hens. These chicks quickly changed the landscape of our yard. Todd continued to grow the space they could consume in the yard. He built a shed to store all the “stuff” that comes along with chickens, composting, and crops (well, a small garden of yumminess).

For years we had more eggs than we could ever use in various colors and hues. Our family shared eggs with anyone who would take them. (I wish we had an abundance of eggs today!) We had 7 hens at one point. That was the first time the raccoons got in. I came home from work to a massacre. Tink and Siouxsie were hiding in the nesting boxes and were safe. Two of the hens were gutted and I was devastated. As I went to access the situation, I saw one of the hens walking but she was bleeding from her neck. I was trying to assess her condition when my neighbor yelled over the fence for me to look out. On top of the chicken coop was a large raccoon on his back legs hissing at me. He was less than two feet away. I grabbed the only thing I could find (a broom) and drove him away.

Thankfully, Todd arrived home soon after and took over triage, and cleaned up the scene of the crime. He and a few neighbors also went on a hunt to avenge the death of my girls, but the raccoon was sly and got away. The following weekend Todd completely enclosed the chicken area so raccoons could not get back in again. That seemed to work until this past week. I think the raccoons opened the nesting box and snagged her based on the evidence left behind.

Several years ago we gave up on the composting endeavor. We gathered more critters than this city girl was ready to interact with. A couple of years ago the garden was replaced with my sauna, pomegranate tree, some herbs, and a tiny lavender field. We decided not to replace the hens as they passed. All that was left of the urban farm was Tinkerbell and another chicken that I could not even name after the raccoon massacre. Now I am caring for a solo senior hen that is probably lonely and sad without her frenemy, Tink.

This week brought back lots of memories that have been buried. I often share that I am grateful when a lost memory trickles up from the archives. It is comforting. I am also reminded that change is the only thing that is certain. Seasons change and our circumstances change. As the season of caring for a plethora of pets closes it opens the door to a new season in my life. I am excited to live my next adventure.

Pearl Sized Loss

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

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

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

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

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

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

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

Little Things We Take for Granted, are Big to Others

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

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

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

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

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

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

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

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

New Year, Recurring Fear

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

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

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

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

The New Year is here. It is a cool, wet, and dark day. The weather is gray and a bit dreary, and I am too. My body is aging and yours is too, but mine is slowing down and yours is still racing forward.

As I get older, I think about your future. What things will look like in years to come. How long will my body be able to be your hands and feet? How long will I have the mind to advocate on your behalf?

For over twenty-two years, I have lifted, carried, bathed, dressed, and moved you. It is my hope to continue to care for you until my last day on earth. I often dream that you will never know a time when I am not the one who is there for your care.

My caregiver fears are working overtime today AND that’s OKAY.

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

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