parenting a disabled child

Invisible Grief: The Unspoken Side of Disability Parenting

~ Elaine Keswick ~ Leave a comment

About a week before Christmas my aunt called with questions about gifts for Coral. “I saw this music piano at Ross, but you know the age is for like..,” she hesitated. Knowing what she was going to say, I jumped in, “A lot of the toys Coral likes are listed for very young kids.”

“Okay, yeah, it’s like baby ages, so I just didn’t know if I should get it,” my aunt replied.

I reassured her that no offense would be taken at the age listed on the packaging. Coral would be thrilled to get a gift she enjoyed, rather than an “age-appropriate” gift she couldn’t care less about.

After I hung up, I realized that this year I didn’t grieve when buying Coral the gifts I knew she’d like—music and lights toys often sold to parents with babies and toddlers.  I didn’t find myself comparing my Christmas shopping list to what friends were buying—or more specifically not buying—for their neurotypical 8 year old girls.

Was my grief over Coral’s diagnosis, her life, and my parenting path completely gone?  Of course not.  It had merely evolved, as I had.

When I received Coral’s diagnosis of Dup15q syndrome 8 years ago, the grief was all-consuming—a forever night in a starless sky.  Fear exponentially multiplied in those dark days of grief, becoming a deeply embedded anxiety over how I would ever parent on a path that was so different from what I expected.  But that level of grief did not persist, nor did the grief completely vanish.

These days grief resurfaces at varied times—invisible to others and often to my own surprise. I watch as my friends with similar aged kids move onto new stages of parenting. No longer immersed in the physical parenting of the infant and toddler years, they embark on novel adventures and partake in different activities with their increasingly independent kids. While watching this, I can’t help but feel suspended in the same stage with Coral—played out day after day and year after year—of diapers, dressing, feeding and watching her vigilantly to maintain her safety. As I see my friends’ families live with more flexibility, I often catch grief poking its head out, reminding me that it will never be forgotten. 

The other day when I was leaving Trader Joe’s I saw a family with three kids, similar in age to ours, walk over to their car, load their groceries, and hop in to leave. The doors opened, the kids and parents got in, and they left. Just like that. My heart stopped—caught in a flutter of momentary grief—as I imagined transitioning Coral out of the store with that type of ease. After leaving a store with Coral I get her out of her adaptive stroller, possibly change her diaper, lift her up and buckle her into her car seat (sometimes a challenging endeavor if she is persistently grabbing for the buckles), unload the special toys I brought to (hopefully) keep her calm and regulated in the store, and finally fold and load her large adaptive stroller into the car.  Every time. Every day. What is an ordinary moment for another family—leaving the grocery store—is a reminder of what will never be easy or ordinary for our family. 

Tom and I often “divide and conquer,” the phrase we use to describe splitting up to take Tate and Cruz to participate in activities and events that are not accessible for Coral. While pragmatic and necessary at times, this strategy can serve as a painful reminder of what our family cannot do altogether.  We will never have whole family movie or game nights, even entire family meals are challenging.  Holiday events and birthday parties are often spent apart from each other.  When we attempt to attend an event altogether it takes detailed planning and packing to meet Coral’s needs. Even then, attending something as a family often feels like a Hail Mary pass—we hope it will work but it may not.  

When it is evident that Coral is unwell, but she can’t communicate—with words or otherwise—what hurts, there is grief. The other day Coral became so distressed—for a reason unknown to us—that we had to quickly intervene before she banged her head repeatedly against the concrete sidewalk. This is not what I wish for Coral. 

My grief is not a result of who Coral is as a person. Coral is our humming, spinning, jumping, and cuddle-loving girl who is often content to walk around with a music toy in her hand.  She is vibrantly full of life in the most authentic way someone can be—fully present in the moment to those who take the time to be present for her.  She is deserving of the attention and care she needs in order to live her life; requiring this level of care is not an appraisal of her life’s value. This is all unequivocally true and I can still grieve at times—over her life and mine.

While pregnant with Coral, my mind got lost in daydreams common to pregnant mothers: imagining her life, the person she’d become, the fun times our family would have, and the relationships she’d develop with her siblings. After Coral received her diagnosis of Dup15q syndrome at 3 weeks old, those daydreams became a chimera; Coral had not physically died, but my idea of Coral did.  Within the fabric of our new lives, various losses collected: our parenting expectations that previously aligned with society’s norms, a general feeling of comfort and normalcy, an ease in accessing community outings, and the flexibility and predictability we once had.  As our lives began to look very different from most parents’ lives around us, the weight of these ambiguous losses—a term coined by psychotherapist Pauline Boss—felt heavy.   

There was a time when I believed that acknowledging any grief around the feeling of loss I experienced was admitting to my established biases, specifically those around disability and what makes a life valuable. If I was grieving Coral’s diagnoses and her related disabilities, I felt there must be something wrong with me as a mother. I cloaked my grief in guilt, thinking that if I could make the grief—that was so often invisible to others—invisible to myself, too, then the grief may carry less weight. 

Over time I recognized that not acknowledging my grief had the opposite effect—it overshadowed more of my life, giving grief greater power.  Now I see that it’s not about preventing grief from arising but rather about becoming increasingly comfortable with grief when it does arrive, often unexpectedly. In shifting my approach to grief, what once felt very rigid, is now more flexible. I know grief will arise at different times. I see it. I feel it. And I know it will pass.  Where the grief was once like an eternal night, it now more closely resembles passing clouds on a sunny day. 

Holding grief lightly, also helps me to see it more fully.  Because of the darkness of grief, I see light in ways I probably never would have—reflecting and illuminating new perspectives that may have otherwise remained hidden. I am privy to viewing life and parenting through a unique lens—one that has helped me to become more compassionate, empathetic, grateful, and patient.

This is not to say that I wouldn’t make learning and life easier for Coral and other individuals with Dup15q syndrome if I could; that’s one reason I raise awareness and fundraise for the Dup15q Alliance. While I work for change for Coral, I also accept Coral exactly as she is—curious, determined, joyful, and silly. Contrary to popular belief, acceptance of this life and all of Coral’s perfectly imperfect 47 chromosomes does not mean that grief disappears. 

Instead of believing that I’m not living fully until my grief is gone, I see that every part of this life can be exactly as it is—my love and my grief, interwoven with the complexities of caring for Coral in a society that is still figuring out what it means to be inclusive of all human beings. These are muddy parenting waters.

Each day I can choose to either play a game of whack-a-mole with uncomfortable emotions, like grief—trying to keep them hidden from myself or others—or I can sit courageously in my awareness of them. There are too many bright lights in this life—one being Coral—to choose to miss it all by covering myself in the darkness of grief’s eternal night.

So, on the cloudy days I’ve decided to be a sky gazer, looking closely at the types of clouds that are obscuring the sun—wispy, hazy, or dark and foreboding. They’re all a part of this path.  But now I know that even on the darkest of days, the sun will come out again. 

The Stories We Tell: Flying Macaroni and Snowless Mountains

~ Elaine Keswick ~ Leave a comment

Last January, upon returning home from our short trip to the local mountains, I knew my friends would ask me at school drop off how the trip went. I wasn’t quite sure what I should say.

There’s the general story, “Yeah it went okay.” But there are also the many nuanced stories — those I create from my judgments about my different experiences on the trip. Was it pleasant or unpleasant? Fun or disappointing? These questions could only be answered by the stories I chose to tell —both to myself and others — about our trip.

After packing up (an extensive process when taking Coral on a trip) and driving up the mountain, we realized our plan to play in the snow while we waited for our cabin was not going to work. The January southern California heat wave had melted all the snow, except where resorts made snow. After some time in limbo (agitating everyone), we could finally check-in to our cabin. Tom unloaded the car and then took the boys outside to explore and play.

I began to unpack the cooler food and prepare food for Coral. My tasks were punctuated by consistent interruptions to maintain Coral’s safety or to protect the material parts of the cabin — responding to Coral knocking over the bench for the table (repeatedly), grabbing and pulling on the blinds, climbing up onto the TV and banging it with her hand and running over to lick the hot wall furnace. It felt like each time I returned to the kitchen I was pulled outside of it to respond to Coral’s next curiosity. 

By the time her food was ready, I felt my capacity for patience reaching its end. I brought the bowl of macaroni and cheese to the table and sat down next to her. Many foods (macaroni being one of them) are hard for her to eat with a spoon; she often tilts the spoon at a certain angle that makes the food fall off of it before it reaches her mouth, and she tends to overstuff her mouth. Once she gets full she usually starts to use the macaroni as sensory play — squishing it between her fingers and smearing it onto surfaces — which is not desirable in someone else’s home (or ours). 

Shortly after I brought her the bowl of macaroni, she spilled some and then pushed some toys off of the table. In an instant, my capacity for patience (which had been stretched thin) snapped. My mind exploded with fireworks of thoughts about disability, parenting, the future and the present — a powerful collision between my expectations for this trip and the current reality. I slammed my fists down onto the thin, rickety table. The bowl of macaroni went flying in the air, spilling all over the carpet. And then I started to cry. I called for Tom to help and went to the carpet to pick up the macaroni. As I was picking up the macaroni, my cries turned to sobs. I stopped picking up the pieces and just sat there, sobbing.

Following my calls for help, Tom entered the cabin with the boys.  Tate and Cruz immediately sat down next to me, rubbing my back. “It’s okay Mom,” they repeated. Tate picked up all of the macaroni, as I sat there with occasional tears.

This event on our trip was the basis for one story I might tell myself. It would be the story about how I fell short of my aspiration to be present with and accepting of whatever is happening in the moment — to be patient and flexible. How could I lose my patience in such a robust way? How could I think everything I thought in that moment? 

Or I could see this event as the story of Tate and Cruz (at only 9 and 3 years old) being fully in the moment when I struggled to be. They supported me with their words and calming presence, just as I had done for them so many times before. It was a story of their compassion helping me to find my self-compassion. 

After the flying macaroni incident, Tom suggested I take the boys to the park down the street. While walking down to the park, I could sense my disappointment at their not being snow, at things being different from what I had hoped. Arriving at the park, I quickly saw that the park had unique and fun play equipment — a zip line, a newer version of a merry go round, a teeter totter and a tire swing. The boys ran with excitement over to play. 

“Mom, if there was snow, we may not have found this cool park. This is awesome!” Tate shouted. 

Playing at the park was the story of disappointment over unmet expectations about snow just as much as it was about joy in the curiosity of things being different than expected. It was a story about possibilities.

Once we returned to the cabin we knew we needed to get some food for dinner.  Eating out is something we rarely do because the loud and often crowded restaurant environment can be challenging for Coral.  Because we all were very hungry, we searched for a restaurant where Coral would eat something.  Rice and beans is one of her favorite foods, so we decided on a Mexican restaurant. We arrived and hoped for the best.  

As we sat down and ordered our food, I noticed that things were going okay.  Coral was happily playing with a toy in her adaptive stroller, and the boys were entertained by the kids’ menu.  This could have been the story of having a typical family outing to a restaurant.  But as I sipped from a margarita that arrived in a much larger cup than I expected, I listened as Coral’s vocalizations (high shrills that were her happy sounds) transcended what may have been an ordinary moment into a moment of awe. I sat there with immense gratitude that we were ALL sitting together at a restaurant. Sure, some kids stared at Coral  as she vocalized, but Coral and our family comfortably enjoyed our meal together.  This was the story of seeing the incredible in the common — when trying something different led to a surprisingly beautiful moment as a family.     

The next day we paid to take the kids down a tubing hill, since the snowless hills around the town were not inviting for kids with sleds. Cruz and Coral each did one run with us, preferring to play in the snow at the bottom of the run. Coral didn’t actually play in the snow but preferred to lie face-down licking the snow, made dirty by the numerous snow tubers who walked back and forth on that path.  Tom and I each tried to take a few runs with Tate, who seemed to be the only one interested in the actual tubing.  This was a story of my frustration with Coral not wanting to participate in any typical snow activity the way I thought she should, as much as it was a story of remembering to release my expectations in order to let Coral be Coral (relocated to a cleaner spot to lick snow). 

In the end, I opted to tell my friends, “Yeah, it was good. You know…we did it.”  Because on this parenting path, sometimes it is about trying something different.  It is about gently stretching my capacity when possible and being open to the stories that come.  These stories aren’t actually good or bad — they just are exactly what they are.  

They are stories of heartache and grief, as much as they are stories of resilience and joy. They are stories about patience lost, perspective gained and trying again another day. 

They are the stories that many other parents struggle to imagine as their own reality. They are stories that bring new perspectives to life — that remind us of the impermanence of all things.

They are the stories I tell about the tomorrows that may or may not come. The stories about future days that will probably arrive with stories I could never imagine or predict.

It is remembering that stories are stories, and this moment is all there really is.  And as many times as I forget this truth, I hope I also remember it.

It is my story. It is Coral’s story. It is the interweaving of our stories throughout this one precious life. Flying macaroni. Snowless mountains. And the many stories still left to be told. 

Finding Hope: The Corals, Kates and Sarahs of the World

~ Elaine Keswick ~ Leave a comment

When Coral’s teacher told me at pick up, “There’s a birthday party invitation in Coral’s backpack,” I did a double take. Coral has been invited to very few kids’ birthday parties. She has attended many parties, usually family birthdays or birthday parties Tate has been invited to, but it’s extremely rare for her to receive her own invitation. Part of the reason for this is because her friends in her special education class often have smaller (and less overwhelming) parties, just as we do for Coral. 

Once I arrived home I opened the invitation for Kate’s 7th birthday — a girl in Coral’s general education first grade class. Knowing that attending a crowded birthday party could be challenging for Coral, I needed to make sure the location would be accessible to her. The party was going to be at the park right by Coral’s school (a location she is familiar with) and on a day and time that worked for us. I told Coral about the party and put it on the calendar. We would try to attend.

The party day arrived, along with some anxiety. Unlike other birthday parties, I didn’t really know these parents or kids. My mind played ping pong with different thoughts and questions: What if Coral has a meltdown? Will she enjoy the party? Will the kids be happy she is there? I did my best to come back to the present moment, knowing that predictions about the party were futile. I didn’t have to live the party twice — once before and once during the actual party.

We arrived to the park a bit late because Coral fell asleep in the car on the way over. I had a bag packed with her favorite snacks and toys, and I draped her AAC device (her “talker”) over my shoulder. I carried a large blanket under one arm and held Coral’s hand in my other. I said some silent prayers that she would walk the entire way over to the party. With all of the extra stuff, it would be challenging to try to get her up, if she decided to drop to the ground mid-walk.

At the party I put our stuff down and began to walk with Coral towards some of the kids. A little girl named Sarah came skipping over with a huge smile. “Hi, Coral!” she beamed. She held out her hand, “High five?” Coral looked at Sarah’s hand. Realizing Coral was not going to reciprocate her high five, Sarah smiled and dropped her hand down. “I’ll see you, Coral,” she said as she skipped off. I was taken aback with pleasant surprise at the comfort and friendliness Sarah showed when greeting Coral. Other kids are often reserved and slightly awkward in their interactions with Coral, confused by how she plays differently and doesn’t use spoken words to communicate.

We walked over to the playground, but Coral only wanted to lay on the concrete. She seemed slightly agitated and did not want to play on the equipment like she often does. From there, we started down a slippery birthday slope, as I attempted to help Coral (and myself) regulate in the different and capacity stretching environment.

I watched as about 15 kids lined up to take their turn at the piñata, while parents snapped photos. Coral was lying across my lap and did not want to get off of the blanket to join the kids. She alternated between throwing toys off of the blanket with frustration and eating some snacks. As I sat there watching the kids and parents, I simultaneously watched my mind fill with emotions and thoughts. For all the mental work I’ve done over the past 7 years, emotions related to Coral and Dup15q syndrome still come up at unexpected times. I took some deep breaths, glad I was wearing sunglasses.

I eventually got her to stand up and walk over to the food table. I saw that the pizza was all gone. The birthday girl’s dad, who I met right there, was standing by the table. We started to talk in what turned into an awkward conversation — one when a parent of a nondisabled child (due to lack of perspective and experience) talks about topics that are unrelatable to a disability parent. His intentions were good, but (like most parents at the party) he had no idea about Coral’s needs, abilities and disabilities. He was talking about his daughter. At one point he casually asked, “Isn’t it so cool to hear about their new friends and their day at school?” I could only smile and nod, lost for words.

I could tell Coral and I were getting close to needing to leave to preserve any remaining emotional and physical capacity, but I wanted to stay for the birthday song. As I deliberated, Coral had a diapering emergency. With no large changing tables available in the park bathroom, I had to jerry rig changing her in the back of our van, while trying to maintain her privacy. By the time we returned, they had already sung happy birthday (one of Coral’s favorite parts of a birthday), and there wasn’t any cake left (something else she enjoys). 

I decided it would be best to say our “goodbyes,” gather our things and head home. I walked with Coral over to Kate’s mom to thank her for inviting us and for hosting the party. When I was talking to her, Coral looked up at her, walked towards her and leaned in for one of Coral’s sweet cuddly hugs. I smiled and looked at Kate’s mom’s face. It immediately softened, as she smiled — a look of comfort and ease replacing any previous discomfort.

As we drove home, I reflected on the party and why we came in the first place. I realized that in coming I didn’t need Coral to stand in line to swing at the piñata. I didn’t need her to sing the happy birthday song with words. I didn’t bring Coral to the birthday party to check typical accomplishments off of a list — to somehow prove that Coral could (in some way) be neurotypical. 

I came because Coral was invited. She has never been invited to a general education classmate’s party. I came to meet them halfway. If you invite Coral, she will come. 

I came to let Coral be a part of the party in whatever way was comfortable for her, even if I had to spend a substantial amount of time in my own discomfort. 

I came so the parents of her classmates could meet her and finally put a face to a name — to bring the human side to whatever perception they may have had about her disabilities. I came so they could see that Coral is really just a 7 year old child who has her own preferences and ways of doing things, like their own child. 

People often say, “There’s no guidebook on this disability parenting path.” To an extent that’s true, but I think Coral and I are writing our own book. We’re learning what works: how to respond to certain situations, how to navigate the varied emotions that arise (even at surprising times), and how to approach situations with flexibility and even curiosity.

On this path, I am learning that where there is despair, there is an opportunity to find hope. At a party full of reminders of how challenging it can be to find accessible events for Coral and how isolating this parenting experience can feel at times, there are glimmers of hope. 

If we hadn’t attended the party, we both probably would have been more comfortable. But attending the party offered some important reminders of hope. Where some may be uncomfortable around disability, there are the Corals who help them connect with a shared humanity and capacity for love. Where some would never invite Coral to their birthday party, there are the Kates who include her. Where some struggle to connect with Coral, there are the beaming Sarahs who choose to see Coral not only as a peer but also as a friend.

Three very different girls. Three important glimmers of hope. 

These are not isolated incidences but reminders of what can be — in any moment and in any place — if we’re courageous enough to see beyond the challenge and despair that may be present, too.

The Sweet Spot

~ Elaine Keswick ~ Leave a comment

I was checking out at the friendliest grocery store in the area, where the employees often hold full conversations with customers. This time the cashier asked me, “What are you up to later today?”

“Just staying busy with the kids,” I replied, with a smile and slight chuckle.

“Oh cool. How many kids do you have?” she asked. After I told her the ages of the kids—9, 7 and 3—she quickly chimed in, “Oh those are great ages. So fun! The older ones can be a little more helpful.”

I smiled and nodded. I didn’t say anything because this was not the place to break down what “9, 7 and 3” looks like in our house, where our middle child has dup15q syndrome. It certainly wasn’t what she imagined. 

As the conversation continued, I thought about what I might tell her about our family dynamic, if I had more time.  It would sound something like this:

“In our home, we bounce between semi-calm and full chaos in an instant. Cruz (our 3-year-old) might start crying, which often leads to a sensory meltdown for Coral. She will then start frantically running around with no regard for her safety—tripping on toys in her path and possibly falling. My nervous system revs up and relaxes down with each repeat of the above scene. There could be countless episodes in a day.

“When I’m home alone with the kids every weekday morning, I pee with the bathroom door open.  This is not to watch Cruz, but rather to make sure Coral isn’t putting her safety at risk. I might come out of the bathroom to find Coral standing on the table, about to go head-to-blade with a fast spinning fan. Or she may be getting an up-close view of the bright fish tank light, grabbed from the top of the tank and held directly up to her eye, for the hundredth time. A small non-edible item could be in her mouth, or she may be doing a back bend (using only her flexed neck as a support, instead of her hands).

“I constantly think one step ahead, removing drink cups, cans, anything that could break or is potentially dangerous (like a kitchen knife I may be using to prepare a meal).   These are prime targets for grabbing, spilling or swiping off a table. We have double locks on all our gates.  Even with this protection, a mistakenly open gate can lead to Coral running straight into our busy street (unaware of the danger to herself), which happened recently. 

“Attending events—family, friend or community—is not a relaxed endeavor. It’s planning, packing (diapers, clothes, favorite toys, special food, medicines, adaptive stroller, AAC) and having a back-up plan. It’s knowing when we should “divide and conquer”—our term for splitting up to attend events that work for only certain family members—and when we should try to attend as a whole family. 

“And all of this doesn’t include the activities of daily living with which we continue to help Coral—dressing, eating, toileting and bathing.”

Of course, I didn’t tell her any of that. I gathered my groceries, thanked her and walked to my car.

Over the next few days, I thought about the conversation with the cashier. I believe the cashier was describing a parenting “sweet spot”—when kids reach the age where there is far-less physical parenting, but they are still curious and child-like in their joy. In other words, a time when the kids still want to do things as a family, but you don’t have to do as many things for them. 

After an initial heavy-hearted reaction to this illusive “sweet spot” in my own parenting journey, I realized there are still tangible “sweet spots” for our family. 

Our “sweet spot” is not a sustained “arrival” to the sought after freedom from the demands of physical parenting and a time of a bit more parenting independence. Rather, it arrives in moments sprinkled throughout the day—there to be appreciated, as long as I am open to seeing them. 

Our sweet spots are in the moments when Coral and Cruz jump together in the trampoline, for even three minutes, smiling and enjoying the time together. 

It’s the very few times when we all end up at the table together for a meal, sitting (or half sitting and half standing, in Coral’s case). 

One day after school, Coral dropped to the ground halfway from her class to the dismissal gate.  Tate arrived, picked her up and carried her the rest of the way.  Coral’s smile spread with each step Tate took towards the gate—a joyful sweet spot.

Sweetness is found in Coral’s snuggles, as she climbs on my lap and lays her head against my chest. She holds a favorite music toy in one hand, as she giggles softly.

It’s the time Coral went to a neighborhood party and jumped high and energetically on the trampoline.  When the family’s small dog came into the trampoline, Coral watched her, completely mesmerized.  She softened her jump when the dog came closer and even sat down next to the dog, attending and engaging with the dog to a degree we don’t often see.

On a different day I was about to leave for work, and Coral said, “I love you,” turning around in her chair to look at me. I quickly walked over to her, beaming. “I love you, too,” I said. Pure joy.

Before I could fully bask in the “I love you” moment, she chimed, “I’m joking.” I laughed so hard out loud. Coral’s hilariously joyful comedic timing.

It’s sitting with Coral in the large red chair in her room, as she presses a specific button on her music toy to play one of her favorite songs, immediately looking deeply into my eyes. I begin to hum the tune, as she does, emphasizing parts with a louder and more animated hum.  It is the love I see in her eyes when she knows I am choosing to join her in something that brings her immense joy. 

These sweet spots are not merely a result of “being positive” about the circumstances. They are present to me because I see the reality of this life and sit with it each day—the emotions, the challenges, the suffering, and the stressors present within every aspect of our family dynamic. 

I see the daily reality AND I see so much beauty in moments like these sweet spots. It does not have to be one or the other.  Instead, I choose to inhabit the space of this AND.

Sharing all of this with the cashier would have been long winded and probably more than she bargained for. But her comment gave me a chance to think about our sweet spots (and all the spice that goes along with them).