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.