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.

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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!