When Alia was almost 5 years old, we flew from Palo Alto to Pittsburgh to test the idea of moving back. (I had lived in Pittsburgh for years before moving to California.) We had a great visit with friends: there were picnics in the park, the kids went on carousel rides, and I even went on an interview to get ready for relocating. We all enjoyed the expansive sense of summer as we hung out later than usual, laughing into the night. To celebrate spending time with two of my closest friends, we decided to go out to dinner, just the three of us. What fun!

This would be the first time I treated myself to a night out since bringing Alia home from the NICU. I was a little worried about not being there to kiss her goodnight at bedtime, but she needed less special care now. I knew she would be safe and sound until I got back. (Dear Reader: No worries on this front, she was fine.)

I was so excited! There was so much to share—I couldn’t wait to tell my friends all about our life in California. We got to the restaurant, ordered our drinks, and sat back, eager to enjoy each other’s company.

My friends started talking about summer plans, arts programs for their kids, trips to amusement parks…activities I recognized from my own childhood, but not my daughter’s. I started to feel strange. Our summer plans didn’t sound anything like theirs. Alia wasn’t going to gymnastics or drama camp. She was going to an Intensity Program—three hours of physical and occupational therapy every day followed by more exercises at home.

Alia was born with a muscle condition that causes tremors, so it is very challenging for her to balance her body to do things like stand or walk on her own. Every day, since she was a baby, I have been her arms and legs, standing or kneeling behind her, helping her play, eat, and get stronger. The more she uses her muscles, the more control and coordination she has. And so, we practice. We practice before I go to work in the morning. We practice as soon as I get home in the evening. We practice during meals, we practice during playtime, we practice all the time.

This is our “normal” and I am used to it. Alia is my only child and I was the youngest of five children myself, so I don’t know what it’s like to raise a “typical” kid. In a way, this has helped me a lot. For years, I took care of Alia in a protective, supportive, happy, playful bubble. In complete defiance of what the doctors told me, I believed Alia would be able to catch up; we just needed to work at it. I dedicated myself to incorporating the exercises I learned from her physical and occupation therapists into her daily activities, using my body as an extension of her own, so she could freely explore and discover the wonders of being alive.

When I had first learned about the Intensity Program, I was thrilled by how much progress Alia would make by participating. I signed her up right away. But sitting at the table, immersed in the memories of swim meets and sleep-away camps, my gratitude for this opportunity turned to regret. While I connected closely with my friends, hearing more about their children’s experiences felt foreign to me. Cognitively, of course I knew our summer would be different than theirs; our life is different from theirs. But in that moment as we settled into our seats, happily anticipating the rest of the evening, I had forgotten.

They turned toward me. “So, tell us everything! How are you doing?!”

The chasm between us was truly beyond words. They cared so much for me and Alia. How could I explain how most of the world saw us? How do I describe how it feels to go to a playground and watch as people walk away, uncomfortable seeing a child work so hard to play? Or the doctors who routinely dismiss Alia’s accomplishments and refuse to see the potential of my beautiful, cherished child?

I am sorry to say, incoherent streams of pain and anguish came out of my mouth. I couldn’t follow my own stories. I heard myself talking and talking, desperately trying to translate our experiences into words that would resonate. I failed miserably.

It turns out, after years of enduring the stress of social isolation at work and the intense vigilance needed to care for Alia, I was no longer capable of having a normal conversation. (In case you didn’t read my post on April 17, my boss sent me an email the day after my daughter was born, saying there was no place on her team for a single mom with a sick baby. I got a new job and since then–until now–chose not to tell anyone at work about Alia’s condition.)

My friends listened to it all. I’m pretty sure I didn’t make any sense, but that didn’t seem to matter. They listened regardless. At the end of dinner, we hugged each other goodnight, and the next day, Alia and I flew back to California.

I mentioned this evening to my friends about a year later, apologizing for my behavior. I was mortified at my loss of control, at crushing the conversation with such vitriol. They both looked at me blankly. Amazingly, neither one of them remembered the evening that way. They (gently) insisted on a far more palatable version: We went out to dinner, caught up as best we could in a couple hours, and enjoyed each other’s company.

There’s only one way I can explain these vastly different experiences of the same evening. Kindness. Truly, truly, I was a mess that night. It was so rare of an opportunity for us to fly across country and see my friends, that I had wanted every minute to be a Disney moment, filled with magic. But of course, real life is filled with all sorts of experiences, for me and everyone else. My hurt and anger, while unique to me, is common to us all. We all have dreams; we all have challenges. My friends already understood this. It took me a little longer.

I am reminded of a quote by Carl Rogers I read somewhere, “What is most personal is most universal.” While the specifics of the journey Alia and I are on are unique to us (and even to each other), the common thread is our humanity. I find that comforting. I hope you do too.