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. 

Marginalized Motherhood: Disability, Friendship, Isolation and Empathy

~ Elaine Keswick ~ Leave a comment

One Monday afternoon in May I sat with five other ladies to celebrate one of their birthdays. As the lunch progressed, our talking proceeded into so much laughter that we filled the relatively empty and quiet Cheesecake Factory with our boisterous laughs.  

This group of moms (including ones that couldn’t attend the lunch that day) is a very special group of friends. We are as different from each other in some ways, as our kids are from each other. But we are unified in a very unique way — all of our kids are disabled. Many of us have autistic kids, and a couple of us have kids with genetic disorders, like my daughter, Coral. We are lucky to have the opportunity to be in-person friends, forgoing “friending” each other on social media for seeing each other at least once or twice everyday at school pick-up or drop-off (and more if we happen to meet up that day, too). We talk. We laugh. We support each other and our children.

These friendships are ones I deeply value and appreciate, especially because finding connection on this disability parenting path can feel complicated and tricky. Building new friendships and adjusting to inevitable changes in other relationships is a dynamic process.  It often feels like being on a pendulum, where I swing from feelings of isolation to friendship and from separation to connection. 

One day shortly after Coral’s diagnosis of Dup15q, I was driving home from the NICU to spend some time with our then two-year-old son, Tate. As I drove home drowning in grief, the same question kept popping up in my head: Will I ever feel joy again? While I couldn’t answer that question immediately, once Coral returned home from the NICU, I was surprised at how quickly joy returned in moments sprinkled throughout the day. As the months past, our home became a sanctuary for our family of four. It was a place where Coral and our entire family could be ourselves, without society’s expectations and comparisons highjacking the moment.  

The part of life that became very challenging was outside our home, in the space where other people’s expectations about and experiences of motherhood collided with my own — where I no longer fit comfortably into conversations with other moms and play dates with their kids.  It was in this uncomfortable space — where many people had no idea how dramatically my experience of motherhood and our family’s life changed after Coral’s birth — that I had to navigate my new motherhood path.

Celebrating Coral’s first birthday on a sunny July day brought me face-to-face with these new and raw parenting realities. As prepared as I felt for the party — food, drinks and decorations — I was as equally unprepared for the forthcoming emotional pain. Coral wasn’t crawling, walking, babbling, or engaging with others in social games common at that age, and we were still watching her for seizures — after she spent the latter half of her first year experiencing many daily seizures (sometimes over 100 in a day).  

During the party, I found myself in a conversation with a longtime friend. As she watched her daughter — who had recently turned two years old — play with the other kids, she began to recount the tremendous stress and strain to her routine of potty training her. I listened as she spoke. I wanted to be able to see her frustration through the lens of her experience.  For her this was a struggle characteristic of typical parenting challenges — movement through developmental milestones with a parenting desire for things to go one way, only to encounter setbacks and stubborn toddlers who have their own plan.

But in that moment at the party I couldn’t do that. I wanted to scream, “I don’t know if Coral will ever walk or talk. I hope one day I get to be inconvenienced by potty training her.” But more than I wanted to scream, I wanted to tell her that my heart was breaking second by second at the party, slowly shattering into a million pieces of despair and sorrow over a first birthday party that didn’t feel like the celebration it typically is. In that moment — at the end of the hardest year of my life to-date — I had no capacity to empathize.

During Coral’s first few years of life, moments like this repeated with other friends, as they shared their parenting challenges with me. These included sharing about their own kids’ fighting and bickering — typical sibling rivalry. Often my heart ached as I listened. At that time, I dreamed of Coral and Tate bickering and Coral running to TELL me about it.  

In this way, my friends’ parenting challenges were often a source of grief — a reminder of what would never be my parenting reality with Coral.  Where those typical parenting challenges still existed with Tate, my perspective of those challenges changed after Coral was born. With Coral, we were focused on making sure she was breathing, monitoring for seizures, completing countless pieces of paperwork, and scheduling numerous appointments and therapies.  In the wake of this very different parenting reality, what had felt so permanent and difficult with Tate, now seemed transient and merely inconvenient.  But at the time, I lacked the insight to clearly articulate this to my friends.  While I know many friends were mindful of what they shared with me, I think others struggled to capture the enormity of the change and grief I was experiencing — though I believe they were all trying the best they could at the time to support me, and for that, I am grateful.

Even from those earliest days, I wanted to be able to support my friends by developing my capacity to empathize with their parenting struggles. As time has passed, and I have experienced many more (sometimes awkward) conversations with well-intentioned friends and community members, I have become more comfortable — recognizing when to speak up and when to just listen and feel the emotional response in my own body.  

Learning to flexibly take other peoples’ perspectives, including Coral’s, is another practice I implement to be a more empathetic friend. When challenging moments arrive with Coral, I try to remember to view things from her perspective, which helps me be more present and patient.  In the same way, I try to bring this perspective-taking practice into my interactions and conversations with friends and others.  For my friends with neurotypical kids, their parenting challenges (and victories) are born of their parenting experience and related perspectives — raising non-disabled children in a society where this is the normative (and expected) experience.  Something that may seem like a mere inconvenience to me, might feel very challenging to them.  Rather than passing judgment on their challenges by comparing them to my own, I choose to see their challenges through their parenting lens. If my experience was their experience, I recognize that I would probably feel the same way. Perspective-taking brings more compassion and connection to my relationships. 

After Coral turned one, my sweet nephew was born. For the first year of his life I found family gatherings extremely difficult. Watching him develop and grow —doing all of the things I imagined Coral doing — seemed to reopen a barely healing heart after each family event. As much as I loved Coral, it was hard not to view her development in comparison to my nephew’s growth for the first couple of years. 

I never mentioned anything to my brother or sister-in-law, not because I thought they’d be upset, but because I told myself an entire story about how I “should” be able to spend time with my nephew without dipping back into despair.  Living in the space of “shoulds” and “should nots” prevented me from being okay with the emotions that were actually present. Not communicating my experience with my family isolated me; hiding my feelings reiterated my internal story that I was somehow failing by still grieving Coral’s diagnosis and sometimes viewing her development through a comparative lens. If the situation was reversed, it’s likely they would feel the same way. My emotions were not rare. They were human.

Emotion and challenge also crept in at play dates with friends during Coral’s first few years of life, especially friends from Tate’s preschool.  With similar-aged kids, it made sense for all of us moms to get out of the house and meet somewhere, often the beach playground.  The preschool-aged kids played together and the younger siblings would, too, except for Coral who was not toddling over to the slide, crawling up the stairs or sitting next to other kids in the sand.  Coral needed full support in all gross motor activities, like sitting and taking steps, and she needed to be watched with complete vigilance (at this age she would try to eat sand to the point of choking).  I began to notice that the other moms (even with toddlers who needed to be watched) found a way to talk, laugh and share parenting stories.  Since Coral was not doing what their kids were doing or sitting by their kids, I often felt like I was watching the play date from the outside — isolated in my experience of motherhood, even in the presence of other moms and friends.  

While I hoped to return from these outings feeling refreshed and connected, I often felt sad and lonely.   Because Tate wanted to play with his friends, not attending the play dates wasn’t a good option. I told myself I “should” attend the gatherings in order to maintain and build new friendships. At the time, I believed attending play dates more frequently would lead me to become more comfortable and connected — a quasi “no pain, no gain” mentality. But that didn’t work. I often wore sunglasses to hide the tears that would inevitably sneak out during the play dates, quickly wiping away any that escaped the cover provided by the lenses. 

It took me many years to realize that the stark difference in the fabric of my motherhood experience with Coral — the care required, vigilance needed, medical trauma experienced, and the questionable value society places on her life — created a mothering mismatch at many events.  My experience as Coral’s mother challenged every perspective, story and expectation that society once told me about motherhood.  One of those stories places an emphasis on a woman regaining not only her physical body but also her professional status and original identity after giving birth. While I felt myself being pulled into that thinking after Tate was born, with Coral I realized there was nothing to return to after her birth. How could there be? The expectations and stories of motherhood pre-Coral were gone. Where I spent my first two years of motherhood with Tate sitting comfortably in the majority, I was now living in the margins of society — the motherhood of others’ fears and in some cases their nightmares — as the mother of a disabled child.

This motherhood path is not merely a deviation from the expected, a difference of degree, but it is a journey on a completely different road.  I am aware that I have a choice everyday; I can choose to parent from a place of comparison, holding onto anger and jealousy over my experience not being as I expected, or I can embrace this different parenting experience — looking for friendships that can grow with my new perspectives and reality.  Choosing the latter gives me space to approach all of my relationships with more self-compassion, curiosity and flexibility.  

Where in the beginning I seemed to see Coral through the lens of expectation and comparison, my lens has now shifted. I now see Coral for who she is — an energetic, water-loving eight-year-old whose life is valuable, no matter the level of daily care she requires and what developmental milestones she may or may not reach. With this shift, my relationships have become easier and inherently less painful, as I am better able to define what circumstances create connection with friends and family.  

I appreciate friends who both welcome Coral (and try to create accessible environments) if she comes with me to an event and who understand why I often attend certain events without her.  I am grateful for friends who offer to take Tate to do activities with their family, understanding that sometimes it is extremely difficult for our family to join in. I respect friends who are okay with the unpredictable energy our family brings to events — ones who are open to stepping outside their own comfort zones.  I give thanks to friends who want to do things with us, even when every sibling may not have an age-matched playmate because Coral often plays in unique ways.  I need friends who see that our “busy” is not chosen but is the result of ALWAYS having to vigilantly watch Coral; sometimes we need help.  I feel closely connected to friends who understand disability parenting, like the friends I have made at Coral’s school and others whose kids share Coral’s same diagnosis.

I am so lucky for all of the loving and supportive relationships I have in my life now.  Some of my long-time friendships have changed.  Others have strengthened.  New friendships have emerged.  I have learned to pivot and adapt to unexpected circumstances.

Often what I need are friends and family who are comfortable to sit with me in the emotions; no one is going to change this, and I now see that for parents of non-disabled kids, they are limited by their parenting experience in how they can relate to mine. And that’s okay. As much as I want to be there for friends in the capacity they need—a listening ear, a sounding board, some advice—I desire the same. And as imperfect as I am in my support to them at times, I know they will be, too. 

When I am with my mom friends from Coral’s class or friends whose children also have Dup15q, there is no divide to cross. When they share a story about their child, their grief or joy is my same grief and joy. There is no separation because we are walking similar paths. 

While there are few moms who can fill that need, there are many other important relationships in my life — ones that I value and want to strengthen. But it takes a reaching across the parent divide from both sides and a spoken (and unspoken) understanding that, “Your parenting path may not be my parenting path, but I am here for you.”

Empathy, compassion, open communication and a good sense of humor. Let’s be honest — there’s always something to laugh about on this parenting path, like Coral trying to run out the back door and throw her electronic toys in the pool. EVERY DAY.

Navigating the Holiday Season

~ Elaine Keswick ~ Leave a comment

This past weekend we went to the Wild Holidays event at the Safari Park.  We chose this event as one of our family holiday events because it combined music and lights — two of our daughter’s (who has Dup15q syndrome and is autistic) favorite things.  Santa was also making an appearance (a bonus for our toddler!).

During the event our boys (9 and 3) were saying things like, “Let’s come back. This is really fun.” As I watched Coral, I couldn’t help but wonder if she was enjoying the event.  She spent most of the time looking down and not looking around at the lights, as I might have expected her to.  Then, we went through the bridge of lights — a long bridge that surrounded her with lights.  As we walked on the bridge, Coral commented on her AAC, “Like holiday.”

I turned to Tom, “She likes this!  She just told me.”

In that same moment, I remembered something that Coral taught me many years ago: It is important for me to be open to Coral participating in an event in the way she enjoys — no matter how far from my expectation that falls. 

It was a reminder to approach this holiday season with awareness, flexibility, curiosity and joy. I know that embodying this approach can feel challenging, as the holidays are a time of super charged expectations that often differ wildly from reality.  Routines change (including two to three weeks without school). Sensory overwhelm abounds. Invitations to inaccessible events often arrive.  Holiday foods are different.  Comparison to other families’ seemingly perfect holiday photos can evoke many emotions and feelings. The result? A perfect storm for parents of disabled children (and dare I say for all parents).  And this storm is not a holly jolly North Pole snow flurry with Santa.  If you know this storm, you know.

So what can be done to find a bit more of the “happy and merry” in the holidays? I have compiled a short list of reflections and changes to consider — ones that have the potential to increase moments of connection, curiosity and joy. (Spoiler alert: I think this list can apply to any parent, whether your kids are disabled or not.)

1) Expectation, Reality, Story

Write down a parenting expectation about the holidays, followed by the reality (try to stick to the facts about what happened) and end with your story about the facts (this is the part where our brains start layering thoughts and feelings on top of the reality). Complete this list for as many expectations as you’d like. An example from my list is below:

Expectation: The kids all decorate the tree.

Reality: Tate and Cruz decorate the tree, while Coral plays in the living room. She watches Super Simple Songs Christmas edition and plays with her favorite music and lights toys.

Story: Gosh, it’s disappointing that Coral doesn’t put the decorations on the tree. I wish she wanted to participate in this family event. In other families, the kids always want to decorate the tree.

The power in making a three-part list like this is that it allows me to take some of the pressure off of the expectations around the holidays.  In my example, when Coral is playing in the living room, she is content.  Does she actually have to decorate the tree? Or do I just feel like she should want to decorate the tree? 

I can more clearly see the difference between what is happening (reality) and what my brain tells me about what is happening (my story and the comparisons my story makes to an expectation).  The point of this exercise is not to feel badly about having expectations or certain feelings about them not being met.  It is to give me more operating space around the expectation — to allow my brain to flexibly view the expectation and the reality without jumping to so many stories.

2) Be Flexible with Holiday Traditions

There will be certain holiday traditions that are important to your family — ones you want to maintain.  If these traditions/activities are ones your disabled child struggles with or seems uninterested in, can you find a way to make the activity meaningful to your child? Can you make changes that would help your child participate? If not, can your child do something different while you participate in the tradition?

During the Christmas tree decorating described above, once the boys had finished, Coral came over to the dining room. She walked over to the tree and took an ornament off, holding it close to her eye to observe every detail. I then showed her how I could put an ornament ON the tree. Off, on, off, on. Coral was interacting with the tree and ornaments in a way that made sense to her and that she enjoyed. Holiday cheer in action. 

Having a flexible and curious mindset helps to release some rigidity around a tradition. I can then be more open to seeing possibilities I may not have seen before.

3) Start New Traditions 

In creating new traditions that Coral will (hopefully) be interested in, I start by connecting with who Coral is and what she enjoys.  To do this with your child, these are some questions you can ask:

What is important to our family during the holiday season?

What brings my child joy?

What does my child enjoy doing?

In which type of environment does my child thrive?

What environments are challenging?

What accommodations will my child need in order to participate in this activity?

After answering these questions for our family and Coral, we knew we wanted to do a couple of things together as a family because it brings Coral joy to be with us.  To identify what activities would work, we thought about what she enjoys (music, lights, riding in her wagon, swimming, and Sesame Street top the list).  As we worked through the list of questions, we decided upon the Wild Holidays event and the Sesame Place Christmas event. We have passes to both of these places, so attending these events is free for our family (a win-win!).

Another new tradition we plan to try this year are wagon rides around the neighborhood to look at Christmas lights.  Additionally, Tom decorated our backyard with beautiful Christmas lights.  We think Coral would enjoy an evening jacuzzi swim with a backdrop of these Christmas lights.

If I may propose a radical holiday tradition — don’t do anything extra. Slow down the rushing energy. Be together at home. Don’t make any specific plans. Enjoy time observing your kid(s) play — getting a precious peek into who they are becoming. Play with your kid(s). Enjoy each other. 

4) It’s Okay to Say No

I grew up with a wonderful and rich tradition of a large Polish Christmas Eve celebration. It was a joyous gathering of our whole family with delicious food and tasty drinks. When Coral was younger we still attended the Christmas Eve event. However, as Coral has gotten bigger, more curious, more mobile (yet still without environmental safety awareness) and more sensitive to sensory stimulus, we have declined attending the event. 

Attending an event that is extremely difficult for Coral is a quick way to be launched into a parent caregiver holiday vortex of stress and exhaustion. I’ll pass. My family loves Coral. I know if they could make accommodations for her, they would.  It’s simply not feasible, given the location and type of event. (We also have our travel and sleeping accommodations for Coral to consider.) 

In coming to the decision to attend or decline holiday event invitations that could be hard for your child, it is important to recognize what is behind the decision.  Is the decision to attend fueled by guilt, a sense of obligation and/or habit energy related to these two? Or is the decision made only after thoughtful consideration is given to your child’s needs, your needs as a parent caregiver and the needs of each family member?  Will this decision strengthen your regulated internal state, or will the result be added stress that takes away from a joyful holiday season?

No one can answer any of these questions for you.  Taking time to sincerely reflect in stillness and quiet will lead you to make the best decision in that moment.

In the case of our Christmas Eve family gathering, declining the event is a decision that honors both my caregiver capacity and Coral’s needs.

5) Begin a Daily Gratitude Practice 

Numerous scientific studies have found that having and expressing gratitude to others can have positive effects on both emotional health and relationships. During the holiday season, which can bring its own stressors, a daily gratitude practice can help bring us outside of ourselves, strengthening the feeling of connection with others.

Try writing down a few things each morning or evening for which you are grateful.  Notice how your body feels as you contemplate your gratitude.  Alternatively, begin or end times of meditation or prayer with gratitude for specific people or occurrences.

Express gratitude to people throughout the day, both those you see and interact with daily and those who you may not see again.  Doing this has the potential to bring you outside of your internal story and into remembering your interconnected nature. 

As you journey through this holiday season, try to maintain a self-compassionate and open approach when trying any of these practices, reflections or considerations.  Everything does not have to be done at once.  Small changes in awareness and reflection can have large impacts over time.  Hopefully, some of these ideas bring more moments of connection and joy to your home, as they have to ours.

Thank you for reading!  I will be launching a newsletter with short ideas and strategies to bring more awareness, connection and joy to (what can often feel like) a challenging parenting journey. Please consider subscribing to the blog and/or emailing elaine.keswick@gmail.com (Subject: Newsletter) to be added to the newsletter list.

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).