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.