This has been a challenging week for me. Filled with excitement and hope, we started the new water therapy program that Dr. Pape recommended in her book (Finding Your Way, 9/11/18). Our first session went great and Alia had fun walking in the pool. Our success energized me to recalibrate Alia’s schedule so we could add in swim sessions three times a week while balancing other important activities like school and play and rest. I felt really happy for her—she was literally walking her way to a better future!

A couple days later Alia caught a cold. She gets a cold every time we go swimming, even when it’s warm outside. I forgot about that. But what about the water therapy? How do I balance the value of swimming with the need to stay healthy? Swimming is one of the very best ways she can build endurance, improve her circulation, and gain the freedom of movement most of us enjoy all the time. But going swimming can knock her out for a week recovering from the cold. Cost vs benefit. The answer isn’t clear.

I have learned to accept that many daily activities are more expensive for us in terms of time and effort than for others (getting Alia dressed for school and feeding her a bowl of oatmeal with a drink requires my full attention and assistance and takes a minimum of an hour). But sometimes it feels like ordinary setbacks are more than we can afford. We can’t afford the fatigue and loss of function a cold causes while her body, overworked—even when healthy—to perform tasks like standing, puts those tasks on hold while it fights off the cold. We can’t afford missing a week of exercise at the level she needs to keep her bones and joints developing normally. The stakes are too high. Movement equals better health and better choices. If she can move, even with an assistive device (but without a person helping her every minute of the day), her choices grow exponentially for how and where she lives, works and plays.

Yet colds are part of life. So it is easy to slide from that fact to the belief that the game is rigged. There is no winning—no catching up. The odds were always against us that Alia would be able to move independently and they increase with every inch she grows. What I am trying to help Alia accomplish may just be too hard. Perhaps it is time to re-evaluate our goals. Is that giving up or being realistic? I don’t know and neither do her doctors or physical therapists. Their answers vary widely and reflect their temperaments more than any medical understanding. There are simply too many variables for anyone to know what’s possible and what’s overreaching.

I try on different perspectives to see which feels right for us. I remind myself that “winning” is not about walking; it’s about being happy and healthy. Maybe we should cut back. What would a day feel like without the 1 ½- 2 ½ hours of PT  I squeeze in (yes, even on her birthday)? But I do not see signs from Alia that her daily regimen is too much for her. More likely it is getting too much for me. As an adult, I can see what she cannot, that our steps forward are excruciatingly slow, that it’s been years and we still have so far to go. I feel tired, defeated.

Suddenly I am back in the NICU. I am scared. I had rushed over after a doctor called saying he needed to talk to me about some test results. I explained I was in the middle of getting a root canal (the first of three I would need within two years of Alia being born); could he please tell me over the phone? He said no, he needed to tell me in person, as soon as possible.

So now I am standing by my daughter’s incubator (she is sleeping), waiting for the nurse to get the doctor. The doctor arrives and he seems to be waiting too. Then someone else arrives. She is a stranger. The woman tells me she is with the Jewish chaplaincy. The doctor is hesitant. He makes small, agitated movements which make me nervous on top of being scared.

Finally the doctor takes a breath and starts to talk. But he is speaking in tongues. I don’t understand the words. Are they Latin? What is he saying? He stutters and spews medical phrases. I am strung out by pain and fear and frustration. “What do you mean?” I hear myself ask. Hyper aware of the bright lights and the other people in the NICU—and the beeping, the constant beeping from the incubators—it’s hard for me to focus on this stammering man who keeps pushing up his glasses.

Am I trapped in some kind of grotesque Saturday Night Live skit? “What does that mean?!?” I ask again. He stops and there is a rare moment of stillness. “The results are abnormal,” he explains, as if that explains anything.

I stop thinking. I stop seeing the lights. I stop hearing the noise. The enormity of this vast and vague bad news hits me hard. I rallied my strength when the nurse told me they didn’t think Alia would survive. I refused to let fear stop me from being in the NICU with my daughter. Every day I endure the complicated and lengthy process of extricating Alia with all of her tubes from the incubator so I can hold her for a few minutes. But today, right now, I am not strong enough to fight back. I start to give in to the miserable future this man connects to these findings. Despair seeps in and starts to engulf me. I am sinking into darkness.

And then I feel something. It startles me. I look down and see the woman from the chaplaincy has taken my hand. She did not say a word while the doctor was talking. I almost forgot she was there. But here she is, strong and steady, standing by my side. She squeezes my hand, silently cheering me on. “You can do this,” I feel her saying. “You can.”

I hold on to her hand and try to steady myself. I see bright lights again and I take a moment to get re-oriented. I am in the NICU. My daughter was born three months premature. I am surrounded by people and equipment and procedures that are completely foreign to me, yet essential to my daughter’s survival. I am trapped in a life I don’t recognize anymore.

I think of Alia and try again to communicate with this man. “What does that mean,” I ask, “in terms of her life?” “How will this affect her life?”

“We don’t know.”

He suggests we schedule a family care conference to discuss the results (The Human Spirit, 10/10/18) and asks if I have any questions. Of course I do, but I shake my head no. He can’t answer my questions, so I ask myself instead. Will she be okay? Am I strong enough to face these challenges? Can I stand by her side as this stranger has stood by mine?

The meeting ends and I follow the doctor out. I pass the front desk where you sign in and show your ID. I pass the sinks where you wash your hands before entering. When I get to the elevator I realize I am going the wrong direction. I take a deep breath, walk back to the NICU and sit down next to Alia. I stay there a long time.

____________________________________________________________________________________________

That was seven years ago. Today Alia is a happy, healthy 1^stgrader who loves to learn and laugh and play. This is a trying time in our journey, but we have been through worse. I don’t like that living through worse is somehow comforting to me, but I will use whatever motivation I find. I am fighting to keep my optimism because I need it. I remember the courage of the woman who chose to be fully present in an uncomfortable, scary situation. Her faith helped me find my own and her generosity of spirit continues to inspire me. This week I lost my balance but the memory of her support steadies me once again. We will keep trying at our current pace but with a revised approach. Next month Alia and I, with my sister’s help, will be traveling to upstate New York for a week of intensive, innovative therapies that we can continue in a modified way when we return. Not much of a holiday vacation, but we will make the best of it. I am hopeful.

When I was in grade school, I got hit in the face with a big rubber ball, the kind used in Dodge Ball. I didn’t see it coming. I didn’t even know there was a game going on. I had been talking to a friend about something and suddenly, for an instant, everything went black. All I could see was pain. I blinked a few times, looked around, and slowly figured out what happened. (Mostly by asking my friend, “What happened?!”) I wasn’t hurt too bad, but it was a disorienting experience. There was a moment when I felt completely disconnected from my life and my surroundings.

I remember this feeling when I think of the family care conference the hospital scheduled to discuss Alia’s prognosis with me. It took place in a small room off to the side of the intermediate intensive care unit (IICU). I can’t remember if Alia had graduated yet to the IICU or if she were still upstairs in the neonatal intensive care unit. I do remember that I was alone, surrounded by medical experts from various pediatric fields, and a social worker I had never seen before.

The meeting did not go well. In fact, it was horrific. Each expert, one after the other, weighed in on all of the things Alia probably wouldn’t be able to do. It was a long list. It started with the mortality rate of extremely premature babies like Alia. The most senior doctor had the most dire forecast but no one disagreed with him. I endured their litany of no’s and never’s as best I could as they each took turns obliterating the hopes and dreams I held for my daughter and for myself as her mother. Systematically and conclusively, they killed my future.

I don’t know why they thought it would be a good idea to kneecap her only caregiver. Maybe they wanted to make sure I understood just how serious our situation was and to test if I could manage the additional needs she would have. Who knows. At some point they stopped talking and everyone looked at the senior doctor, who then looked at me. “Do you have any questions?” he asked.

What could I say? They had taken away essential aspects of what I associated with family and motherhood and even happiness. Desperately I searched for a hint of hope in the devastated landscape. In a voice I didn’t recognize I heard myself ask, “Will she be able to smile?” Stripped of all else, I thought if she could smile we’d be okay. There was a long pause. “I hope so,” said the doctor.

For the millionth time in a very short time, I wanted to scream and keep screaming until I woke up and Alia was a happy, healthy little baby, sleeping by my side. I wanted to be anywhere except in this hospital. I didn’t want to listen to these doctors and I didn’t want to feel scared all the time. But I was trapped. This was my life; there was no escape. Alia was here and so I was here, standing on the scorched earth they had left for us.

“Could I have some time to think about this?” I asked. With visible relief, everyone filed out of the room. The social worker handed me a card with some phone numbers on it. I was stunned by their vision of our future, like when I was hit in the face with the ball. Except this time, when I blinked a few times to re-orient myself, there was no one to ask, “What happened?” I had to figure it out myself.

I had a hard time standing up, so I stayed seated for a while. Slowly but surely, like a flood, anger and then rage coursed through me. Who were these strangers to decide the fate of a little girl who wasn’t even (developmentally) one day old? Instinctively, I defended her. She will decide for herself what her life will be like. I resented these people I barely knew telling me what to believe about my daughter and our life together. That’s our story to write, not theirs.

I stayed there a long time, refusing to follow their lead but at a loss for how to move forward. How was I going to navigate our journey? Finally, thankfully, an idea came to mind like a breath of grace: Where she goes, I go.

That was all I needed. I had an inner compass now, and I used it to guide me throughout the weeks and months and even years ahead. Whatever she needed was the direction I would go to find it. It has been a rough road, and continues to challenge me today, but I believe in the human spirit. I believe in potential. And I defy anyone who thinks they know the limits of her—or anyone’s—abilities (including their own). We can all be extraordinary. There are just too many heroes in our everyday lives to deny it.

If you find yourself in the middle of a story you don’t like, please remember you are the only one who gets to write the narrative. We may not be able to change the events—Alia was born three months early; there’s no changing that—but we get to choose what they mean and how to move forward. If a tiny two-pound baby can be a hero, you can too.

Safe travels!

For folks who may be feeling unsure about what step to take next in their life, I’m sharing this story to remind you that sometimes the path finds you. Perhaps you are at a crossroads. Perhaps an opportunity you were hoping for did not work out. I urge you to stay open-minded to the possibilities you might not see waiting for you around the corner. Keep going. Maybe, like me, you discover an idea or a person or an interest you didn’t know about before, and a path appears. You do not need to know the entire route before you start. What E.L. Doctorow said about writing a novel applies just as well to finding your way in life, at least for those times when you’re feeling lost. “It’s like driving a car at night. You can see only as far as your headlights, but you can make the whole trip that way.”

There is a longer story to explain why I’ve been thinking about the paths in life we find ourselves on or, ideally, pave for ourselves, but for this post, I’d like to focus on the end of that story rather than the beginning. So I’m going to skip over the part where my eye doctor tells me I might have a brain tumor, and the months of waiting for the results of various tests ordered by the various specialists I was referred to in order to confirm or reject that possibility.

[As a side note for those who are interested, apparently the protocol for determining the cause of a vision problem is to start from the outside and go in. So, in my case, tests and scans were done on both corneas, retinas, the optic nerve, and ultimately, my brain. Suggested diagnoses ranged from dry eyes to demyelination (diseases like Parkinson’s or MS).]

I am grateful to say the test results were all negative, there was no evidence of a brain tumor or damage to my eyes. During the year it took for the doctors to come to that conclusion, I had time to do some serious thinking about what I would like to accomplish in my life and how far I had gotten on that path. It was hard to accept how little I’ve done that would measure up to any kind of meaningful impact. It was harder to accept that I had left so much potential on the table if the game, my life, was really almost over.

I tried to identify where the barriers were and how I allowed them to block my progress. The first and probably biggest barrier has been something I have struggled with since childhood: a poor sense of direction. And I mean that both figuratively and literally. (I wonder if they are related?) I have always had a hard time picturing a route forward into the future for myself. When I was younger, I didn’t recognize it as a problem that needed a solution. Mostly because when you’re young, everything is “now” anyway. And although I couldn’t answer the perennial question, “What do you want to do when you grow up?” it didn’t bother me then as it does now. Partly because the future was so far away. But also because I had a slightly different understanding of my future than many of my friends. I was named after my aunt, who died when she was 13. I then found out she was named after a relative who died in her 20s. It seemed to me that Edna’s, like big dogs, just don’t live very long. I didn’t need to worry about what I would do when I grew up, so I didn’t.

Besides, there were so many fun, compelling things to do. I kept busy pursuing a string of different interests. Certain milestones were painful, but I got through them (deciding on a major in college, choosing a job, saying “no thank you” to boyfriends along the way who asked to marry me). Throughout it all, I was searching for a path toward a sense of “home”. I found many nice places to stay for a while, but for reasons I can’t fully explain, none of them felt like my forever-home. Which is why I admire so much my friends and siblings who seem to have interests and careers that sustain them. They know what they like and they stick with it. What a gift.

How does this relate to finding your way (since clearly I haven’t yet)? Well recently I started reading a book written by a doctor who I believe has found a way for my daughter Alia to become an independent walker. Dr. Karen Pape is the author, and she has dedicated her life to helping children improve how they walk, run, use their arms or hands—even speak. I am excited and optimistic about the impact this doctor’s approach can have on my daughter’s future independence. I am also reassured that, although her approach is considered cutting-edge for children, there is nothing “kooky” or quixotic about it. She is simply applying our understanding of neuroplasticity in adults to children. Doctors in rehabilitative medicine for adults have been using this approach successfully for decades. She is one of the first doctors, however, to recognize its effectiveness with children.

The way forward, however, is not clear. It may be filled with twists and turns and detours. (Dr. Pape died of cancer two months ago, before she was able to establish a network of practitioners to continue her groundbreaking work.)

And so it is up to me, the woman with no sense of direction, to find the way. I will try to do for my daughter what I have been unable to do for myself. Like every parent, my hope is for my child to fully realize her potential. My bigger hope is that together, Alia and I can pave the way for any child who currently struggles to move—there are thousands—to gain access to this approach, so they too can enjoy the freedom of movement so many of us enjoy each day without even noticing. It is a steep hill to climb, and I have only just begun. I’ll let you know how it goes.

If you are experiencing a similar sense of uncertainty about how to achieve your goals, please remember you can reach your goals, even if the way forward is only clear one step at a time. You just have to keep going.

Safe travels!

As surprising as it is every year, summer is coming to an end. School is starting soon–August 28^th for Alia. She tells me she’s nervous. I am nervous too. Last year finding the right kindergarten program for her was challenging to say the least. Fortunately, I found the perfect school and it was a massive success. (Sky-high compliments to the staff of Carnegie Mellon University Children’s School!)

Unfortunately, the kindergarten program Alia attended does not extend to first grade, so I had to look for a new school. As most parents have experienced, that process can be complicated and confusing. In Pittsburgh, I could choose among 19 different public schools including charter, magnet and neighborhood, and over 100 private schools.

Since I had gone through a similar process when looking for a kindergarten program, the “do-over” created a special opportunity for me to gain some insights into just how powerful an open perspective can be. (Please note, the following is an account of my personal experience only. I am not making general claims about the schools I toured or even the people I met.)

Last year, when I was looking at kindergarten, I assumed the biggest factor would relate to Alia’s mobility challenges: can she physically get into the building? Once in, how accessible are the various classrooms, bathrooms, and playgrounds?

It turns out, stairs were not the biggest barrier. The culture of the school was what truly determined accessibility, and that culture went both ways. I remember calling the general number of a magnet school that I thought Alia might enjoy and leaving a message with a brief explanation of our situation. Later that day, the principal herself called me back. I asked if the school had an elevator. When she answered no, it didn’t, I assumed that was the end of our conversation and thanked her for her time. But the principal kept talking. She explained she had been asking for an elevator for a long time and was on the waiting list for the district to install one. She encouraged me to apply, excited that her request would then gain higher priority. I was impressed by this administrator’s genuine commitment to making her program more inclusive. (We applied but enrollment is on a lottery system, and we did not get in.)

I continued my search. By asking the same questions to different school administrators (and getting very different answers), I could see how each person’s perspective influenced their response. It was both fascinating and frustrating.

One conversation, though, proved extremely illuminating. I was speaking to the director of admissions of a well-respected school. I believe nearly everyone would call her “nice”. She certainly seemed nice when I first met her. My sense is she prides herself on being nice. And to be fair, it is rare to be in a situation that tests that quality to the degree that she found herself being tested while talking to me. But there you go. Some people’s nice exists within a smaller comfort zone than others.

I hadn’t meant to test her. I was simply following up, as I was encouraged to do by several other parents, to learn more about why my daughter was not accepted into their program. I was told this is a fairly standard thing to do since that feedback can be very helpful. So I called. I was open, pleasant, and curious to learn more. (I realize that sounds like a stretch given the circumstances, but perhaps you can believe me. I worked very hard to sound this way and am a severe judge of myself, so if I have given myself credit for accomplishing this, you can feel somewhat comfortable trusting me on it.) I told the director I was surprised that she hadn’t been accepted, given the very positive report her current program had showed me they had sent. “Little to no adaptation in the classroom” was one of the comments, which I had thought would allay their concerns about including a child in a wheelchair in their program. And the school was already informed that Alia had tested at the gifted level, so I knew they weren’t concerned about her academic performance.

On the call, I acknowledged that Alia brings with her several challenges, but the school had seemed so encouraging throughout the application process, I thought those issues had already been fully considered. So I asked in my neutral way, “What areas weren’t a fit for your program?” The woman sounded angry—I’m guessing she was much happier smiling at people and encouraging them than being honest about the limits of her friendliness. “Everything!” she said, exasperated that she even had to explain this to me. For this person, nothing was possible for Alia at this school. Quite simply, she wasn’t wanted.

If there is anyone you love who has been valued so little by others, maybe you can relate to how painful this was to hear. She did not see Alia’s potential. In this person’s defense, since that is how she perceived things, it must have been very uncomfortable for her to have to point out such an obvious gap in what Alia had to offer their program and what they were looking for.

I see things a little differently. I know Alia is here to make the world a better place, as are we all. But it takes an open mind to see someone’s potential, especially if they don’t conform to our social conventions or look different. This administrator taught me just how limiting a closed mindset can be for developing the human spirit to its full potential. A quote from Henry Wadsworth Longfellow comes to mind: “We judge ourselves by what we feel capable of doing while others judge us by what we have already done.” I need to remember this if I find myself making a sweeping judgment like that about…well, anything.

Same Kid, Same Topic, Totally Different Director of Admissions

Months later, I am on the phone with the director of admissions at another private school. I explain that my daughter’s class had visited their school last year, and she had a great time, so I was calling to learn more about their program. I tried to be as honest as possible describing Alia—she’s kind, she’s creative, she’s funny and, for now, she can’t stand or walk on her own. Also, her speech is slurred, which makes it hard for some folks to understand what she’s saying. But the director already knew. She remembered meeting my daughter during her school’s visit and was delighted that we were interested. She immediately invited me to come tour the school with her.

A few days later, when I met her for the tour, she did not smile politely. She smiled in a way that lit up her whole face and somehow made her eyes shine. I felt welcomed, as if I had been invited over for dinner, instead of arriving for an appointment. I learned a lot about their program and was impressed by their curriculum. The values she cited were not just pretty words posted on their website. They were integrated into the program in so many layers, and so consistently, I was convinced this was a very special place, led by a team of very special people. The school felt like home. We had found our tribe.

In this school, and with this team, everything was possible for Alia. I met several times with different folks from the school to explore the barriers Alia might encounter if she were accepted, both physical and otherwise. Throughout the months of discussion and planning, I always felt there was a genuine desire to include her.

And then acceptance letters were mailed out. Alia was accepted! She will be the first student in the history of the school who will be attending in a wheelchair. A trailblazer at the ripe old age of 6. Kudos to Community Day School for truly living their values, even when it might be outside their comfort zone to do so. I am hopeful by joining this community I will feel inspired and supported to do the same—especially when it’s outside my comfort zone.

For readers who feel blocked in some way, I hope our experience reminds you of an important fact. An open mind will see possibilities where a closed mind sees none. With that in mind, what’s possible for you?

Success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome.

                                                                    –Booker T. Washington

About a year ago, a very ordinary moment turned into a profound experience that feels both hugely important and highly confusing to me. I think of it often, because it seems like the Rosetta Stone for understanding life challenges. Unfortunately, I have not been able to crack the code. But I know you can, so I am sharing this story for you to decipher. I would love to hear your thoughts.

Here’s what happened.

It was time to go to preschool, and Alia’s helper was a no-show. Since Alia cannot stand or walk on her own or feed herself—yet!—she needs an adult caregiver to accompany her. I didn’t want her to miss out on a fun morning with her friends, so I decided to call off from work and go with her instead.

We spent the morning playing with blocks, painting, gathering round for Circle Time, and searching for toys buried in the sand table. Alia was having fun. I incorporated her physical therapy exercises into her playtime, as I do every day at home.

Although the tremors make it difficult for Alia to balance, practice makes her stronger and more stable. So we practice. A lot. Everywhere. Including here at preschool. And she was doing awesome! I usually hold her at the hips to keep her from shifting too far to either side, and as she finds her balance, I let go for a second at a time. Tiny taps to keep her centered, with increasing pressure as she gets tired or moves her legs. But today, she was so steady, I was letting go for five seconds at a time, then ten, then twenty! Incredible! And not just once, but she was able to keep her balance over and over again.

I was so happy for her! So proud! If we were in a movie, this would have been the big ending—huge, sweeping music; slow motion footage; the camera circling around Alia, triumphant, as she stands in the middle of the classroom, on her own!

In real life, though, what happened was…nothing. No one even noticed. And truly, I mean no one. Not the teachers who spent every school day with her for the past seven months, not the other kids, not the program director who was in the room, not even Alia. She was busy playing.

It took 5,000 hours of physical therapy to make those twenty seconds possible. How is it possible that I am the only one who noticed? What does it mean to pour heart and soul into achieving milestones that are invisible to the people around us, milestones that 99 percent of us achieve simply by waking up each morning?

I struggle to remind myself that although Alia’s challenges are visible and obvious, we all have challenges. How many times have I missed someone else’s amazing moment? What about people who struggle with a serious alcohol problem—a recent headline cites 32 million Americans last year alone—who showed the courage and strength to stay sober that day? Obvious to them, probably second by second, yet invisible to me. Or people dealing with the loss of a loved one? Or the 20,000 people in the United States who call domestic violence hotlines on any given day? The list of distressing human conditions goes on and on.

Knowing that most of us, maybe all of us, face significant challenges that test our sense of well-being does not make me feel better. Knowing that these challenges offer each of us an opportunity to better understand ourselves and the people around us, does. So, what did I learn from the experience that morning?

I don’t know. Do you?

Alia was born three months early, so my maternity leave was spent in the NICU. Fortunately (in a way), the emergency c-section I had gave me additional recovery time covered by insurance, so I was able to stay home and care for Alia those first weeks home from the hospital. But then I had to go back to work. I needed to find a full-time nanny to cover for me, and as I’m sure every first-time parent feels—and probably second- and third-time, too—the prospect was unnerving to say the least.

I didn’t know anyone to ask, so I looked online and tried to find someone who seemed kind, honest, reliable, detail-oriented, experienced, energetic, cheerful, organized…my wish list was impossibly long.

I met with as many applicants as I could. It was a terrifying process since so much was at stake. The whole idea of hiring a stranger to care for your most precious person, leaving them alone in your home with all of your less precious possessions, is insane yet common. For context, I grew up in New Jersey where it is 100 percent not the case that we were taught to believe that you can trust everyone all the time and the world is filled with care bears and rainbows. This nanny had to have incredible credentials.

And she did. Mimi was an older woman, who was fluent in Spanish (English, not so much), had little to no formal education, and an unusual understanding of how appliances worked. She also radiated kindness. I could almost feel it coming off her skin. She had a warm, happy smile and so clearly adored my daughter, it was hard to remember she only just met her. She had excellent references (federal prosecutors would be proud of the way I cross-examined those people!) and she would be available as soon as her current family moved, which is why she was available at all.

In the chaos and fear of caring for an infant for the first time, working full-time, and feeling dog-tired all the time, Mimi was our lifeline to the warm and loving home I wanted for my daughter. By nature, I would say I am not warm or loving. I am honest, loyal, understanding and reasonable, but I don’t have the courage to share tender feelings as openly as people like Mimi. I admire her deeply.

Mimi arrived refreshed and full of energy; I was frantic and frazzled. What a relief every morning to see Mimi at our door, eager to begin her day caring for Alia. She was always on time. Always smiling. She kept careful notes, she followed every instruction, and was so clearly in her element (while I was most definitely not), that I often went to work feeling like Alia was in better hands than my own.

As I struggled to maintain a façade of competence at work (I had a new job—remember, my employer effectively fired me when she found out Alia was born three months premature), Mimi sparkled with joy. She would come in, put down her bag—and she was off, gathering supplies, setting up the room for play, and doing whatever needed to be done for Alia to have a perfectly pampered day. While I knew such care couldn’t undo the trauma of Alia’s birth and first few months of life, it sure felt good to see her treated like that.

I was impressed and inspired by Mimi’s dedication. She had a calling not a job, and she knew it. Whatever troubles she had, she left them in the car before coming to our doorstep. Wow. I don’t know how to do that. I carry my worries with me wherever I go, turning them over and over in my mind, even in my sleep. Not Mimi.

We’ve had several nannies, and now aides, since Mimi. Some of them have as much experience, all of them have strong references, but none has shown the same dedication infused with delight. (Alia’s care grew too complicated to teach Mimi, even with help from Spanish-speaking friends, so I had to find new helpers.)

I’ve been thinking a lot about Mimi recently, and I think it’s because I read this on someone’s Pinterest board.

“At the end of life, what really matters is not what we bought but what we built; now what we got but what we shared; not our competence but our character; and not our success, but our significance. Live a life that matters. Live a life of love.”

The author of this quote is marked “unknown” but I believe it was Mimi.

Note: As I was writing this post, I got curious about the meaning of the name Mimi, a pet name for Maria. I discovered that the meaning is not known for certain, but most likely it was originally an Egyptian name, derived in part from mry “beloved” or mr “love”.

Here’s to the Mimi’s in our lives!

Dear Readers, 

Please keep in mind that Alia is a happy, healthy, beautiful little girl, who is now nearly seven years old.

 This happened on her first morning home.

It was nine o’clock. Shadow had gone out for his morning romp in the backyard and was back inside, guarding Alia’s bassinet. I had been giving Alia milk while she slept throughout the night—the first night of her life that she wasn’t strapped to monitors watched closely by NICU nurses. Now it was morning and time for her to wake up. But she was in a deep sleep and I didn’t want to disturb her, so I gave her more milk while she slept.

Hours went by. She was still sleeping. I got worried. In the hospital, she was usually moving around by now so I tried to wake her up. No response. I tried everything I could think of to rouse her. I turned the lights on as bright as they could go. I sprinkled water on her feet and face. I took off her pajamas—maybe the change in temperature would wake her. Nothing. I called her name. At first gently, and then more and more urgently. Alia? Alia! ALIA!!! Nothing.

Something was wrong. I called her doctor’s office and explained what was happening. The nurse quickly ran through a list of questions, her voice steady and assured. But my answers must not have been what she was expecting, because there was a long pause when she got to the end. I waited, hoping she was switching to a different set of questions, ones I had better answers for. Instead, I heard her take a deep breath before saying, “You need to call 9-1-1.”

She said something about seizures or strokes—I’m not really sure because I could barely hear her over the scream coming straight from my soul. My dog didn’t hear it. Alia didn’t hear it. But the primal scream of horror and agony was deafening and blinding and I was nearly crushed by the force of it.

I had poured everything I had, every bit of resilience, every stubborn hope, every shred of energy and optimism and sheer doggedness into getting me and Alia through those 92 days in the NICU. I wasn’t exhausted because that was a feeling I could recognize. I was something else. Before Alia was born, I had naively understood fatigue as a range from 1 to 10, but since then, I discovered it goes up to a hundred, and then a thousand, and you find yourself living in a place where there is no sleep anymore. It’s all one continuous, relentless stream of wakefulness. And you don’t bounce back after a good night’s sleep. There are no good night sleeps. And even if there were, the debt is too high to pay back. You stop tallying the deficit and simply go on, functioning in a different way.

But this was too much for me. And I had done everything I was told! Yet still, I had failed her. She lay limp and unmoving. The scream in my head turned into a wail. I did what I had to do: I called 9-1-1. As I was talking, I heard sirens. They were coming for us.

I didn’t feel relief. I wasn’t comforted by how quickly they responded. I held Alia close and against my will, walked outside. I got to the middle of our front lawn and stopped. Two enormous firetrucks pulled up and men came pouring out the sides of them. They had some of their gear on, but not pulled up over their shoulders. I saw massive arms reaching toward me, to take Alia. Instinctively, I pulled back. “She’s mine,” I wanted to say, but I couldn’t speak over the screaming. Incredibly, the firemen didn’t hear it either.

They were kind and reassuring. Gently, one of the firemen reached again. I held on tight. They brought out a bag of equipment and steered me toward the back of the truck. Someone who seemed to be the leader tried to measure her vital signs, but the devices were too big and they couldn’t get accurate readings. The fireman looked at Alia closely and said, “I think she just doesn’t want to wake up.” The other men agreed with him in the same genial tone. But she still wasn’t moving.

Whatever was holding me up started to give way. My grip loosened and instantly, the fireman, who was also holding Alia, lifted her up out of my arms. Another fireman circled behind me and held me up. This was it. I could take no more.

And then a miracle happened.

The fireman lifted Alia up toward the sky so she could feel the sun on her face. Her eyelids started to flicker and he brought her back down to nestle her in his arms. She woke up. He waited a few seconds and tickled her belly. She wriggled and smiled. She was okay.

Alia was three months old and had never seen sunlight. This was the first time she had even felt its warmth on her skin. The lead fireman continued to play with her while I tried to steady myself. The rest of the men lined up and asked if they could hold her too. I watched a group of men, as big and strong as they come, collectively turn into a puddle of goo as they cuddled and cooed over my baby wrapped in a pink flannel blanket.

And that is why I love firemen.

This happened a long time ago, but the image of those firemen doting on my daughter is as vivid as if it were yesterday. I thought of them recently, when I went to a school picnic and saw a group of firemen standing by their truck, showing kids the equipment and helping them climb in. Alia and I were sitting nearby eating our hot dogs and enjoying the warm (well, let’s face it, hot) humid air that settles in before a thunderstorm. The rain held off for the duration of the picnic, though, and we were having fun meeting new friends at the school Alia will be going to next year for first grade. Several parents approached us, genuinely happy to welcome us into their community. I appreciated those smiles more than they could know. We’ve come such a long way from that first morning home.

If you or someone you know is going through an intense challenge, where they feel the path forward is filled with dread and despair, maybe this story will remind them: miracles do happen. Sometimes you have to just keep breathing until they do.

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.