There have been times when the forces at play in my life converge to a conclusion that is so confusing and overwhelming, I find myself stunned. My mind balks at the truth in front of me, refusing to accept it. There is something about the coveted job offer or party invitation that means more than it should. I am too eager to be included, too needy to accept missing out. My spirit cries out to the universe, Why not?! And, when there’s no answer, I call out again. Why not? Why not? Why not?

While the intensity of these moments feels horrible, something essential and exquisite is happening: I am discovering a fundamental aspect of who I am. Maybe I didn’t know or I denied knowing, or I didn’t know I denied knowing. Regardless, I put myself into situations that just weren’t right for me, and it hurt.

Usually, I do not figure this out on my own. One time I was on vacation with my sister. We were sitting on some rocks along a beach of sorts, and I had just finished an angry, whiney rant in a voice I barely recognized, complaining, complaining, complaining. Finally, exasperated and exhausted, I shouted at her, “I just want a boyfriend who remembers me when I am not right there standing in front of him!”

My sister is a calm, rational sort of person. She had endured this tirade, and mini versions of it, for years now. (I can only imagine how frustrated she must have felt, seeing me so oblivious to the obvious.) She waited to make sure I was done and said gently, with the clarity of compassion, “You’re right to want that kind of boyfriend. I just don’t think it’s going to be him.”

Oh.

I stopped short and let the truth of her insight sink in. I had been trying to make this relationship work for a long time with little (frankly, no) success. He was a nice guy and made me think about things in different ways, which I really liked. But we just weren’t compatible. I didn’t say anything and after a while we went on to explore more sites. But I felt different. The knot inside me loosened. I was at ease.

I stayed with this man a little longer, but not much. When we parted, another nice guy came my way and we had a much easier time getting along. My new boyfriend taught me a lot about how fun and affirming romantic relationships could be and I am grateful for the lesson.

Since Alia was born, I have had to grapple with all sorts of new truths. Some comforting, some painful. I might write more about them in future posts. For now, I’d like to share just one, a comforting one.

A few years ago, when Alia and I lived in California, we decided to go play at the playground near our home. I was excited that we had had a good morning and finished her exercises early, so we had some time to go on an outing before starting her second active play session (read: physical therapy) in the afternoon. Going to the playground was what “normal” people did, and I was thrilled to join the mainstream in such a fun activity. I took her to the area for little kids, so there was sand and bouncy horses and swings—a three-year old’s paradise! She sat down in the sand and happily started digging. I sat next to her, helping her hold her little shovel and move objects within her reach to play with.

Then she wanted to sit on the bouncy horse, so I helped her to feet and together we walked over. I focused on holding her hips and cueing her to shift her weight each step, adjusting the lengths of her stride so she could maintain an even gait, tapping her shoulders to stay back so she didn’t slump forward, and reaching up to support her head when her neck muscles got tired.

It took several minutes of intense effort, but we reached the horse that was a few feet away, and with happy anticipation, I sat down with Alia on my lap. I gently bounced it up and down for her. The motion intrigued her. The sky was a gorgeous blue and across the park were maple trees and a baseball diamond. I was startled by how relaxing it was.

And then I noticed the other parents at the park staring at me. I tried to meet their gaze, but they quickly looked away. From my glimpse of their faces, I realized they were all thinking the same thing, “Thank G-d that isn’t me.”

Now it was my turn to look away. And then I just looked down. I focused on Alia and ignored the people around us. We stayed on the bouncy horse until she was ready to try something else, and we played with the different “interactives” as if we were the only ones there. Then I packed up our stuff and we went home. I smiled and chatted with Alia the whole time, but I felt like my face was on fire. When we got home, I was so relieved, I remember giving my dog a huge hug and feeling grateful for our big backyard and the freedom it gave us. We didn’t need a playground to go outside and have fun.

I’m sure it sounds strange, but I often forget how different my and my daughter’s life is than other families. But I will never forget how I felt that day at the park. And while part of me was badly wounded by those stares, another part rose up, angry and defiant at those people who just didn’t know better. How would they? By definition, the extraordinary is not something one commonly encounters. And that’s how I see my daughter. She is an extraordinary person, partly by the circumstances of her birth but mostly by the qualities of her spirit. I cannot yet describe all the ways she will grow up to make the world a better place, but I know that is her future. How would these strangers in the park understand that? How could I possibly explain?

Later that evening, when Alia was asleep, I sat at my computer, searching for a way to keep a blanket on a child who rolled around a lot. I found this instead.

“In some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room.”

Oh.

I felt different. The knot inside me loosened. I was at ease.

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.

When Alia was about 3 or 4, she decided that car trips would be much better if I sat in the backseat next to her instead of in the driver’s seat. I patiently explained that someone had to drive the car for us to get places, and since I was the only one who could reach the pedals AND had a driver’s license, I had to stay in the front. Undaunted by the rules of logic, she assailed me with appeals for months. Fortunately—mostly because it was illegal and definitely because it was dangerous—I stayed firm.

Then she got more ambitious. She decided she would drive the car and I could sit next to her in the front seat. What?! This was even more ridiculous. I was almost relieved. For sure, I was going to win this argument…but not necessarily. Alia is a Master Negotiator. It is galling how good she is at out-arguing me, and I craft arguments (for fundraising) for a living! But there’s no competing with a creative, super-cute four-year old. I start out strong, yet somewhere along the way, as her “reasons” get more and more outrageous, I weaken and can’t help laughing. And that’s when she knows she’s won.

For this argument, though, I didn’t waver. But I also didn’t realize how committed she was. Week after week, Alia held her ground, devising new and ingenious reasons for why she should be driving the car. I figured she would eventually get bored with the game and move on to something else, but the weeks became months and she was as determined as ever. In fact, she extended her “court time” to beyond car trips, revving up her reason generator while we were still home getting ready to go out.

At this point I got exasperated. It was hard to keep saying no, especially when it meant so much to her. And it was even harder to defend those Very Good Reasons to someone completely incapable of recognizing their legitimacy. The next time she asked for the car keys I defended my position with open desperation: “You don’t even have a driver’s permit!”

Alia froze and then looked at me, elated. She scrambled across the room, eagerly grabbed Kermit the Frog from her pile of stuffed animals and thrust him toward me with an Olympic victory grin, “I’ve got a driver’s Kermit! I can drive!!”

And that is how (in her mind) she won the argument of driving our car. She believed with complete conviction that she was now qualified to drive our car—she had a driver’s Kermit!

Ah, the world of a four-year old. In my daughter’s mind, anything was possible, including driving a car with pedals you couldn’t reach, along streets with signs you didn’t understand, to explore a world filled with adventures. Of course, I didn’t let her drive the car (not even in the driveway, not even while it was parked). But it didn’t bother her; she was delighted to have a driver’s Kermit. She found a side door to happiness when the front door was locked, and that was enough for her.

I admire her persistence in finding a positive way out of her dilemma. It reminds me, and I hope you too, to keep looking for a better answer. If you find yourself in a situation where the front door to what you desire is locked or unreachable, please remember, somewhere there is a side door. And regardless of Very Good Reasons why the front door is locked, you can still get in from the side. If you have to, bring Kermit along for encouragement.