One year changed my life forever, filled with new truths, pain, sorry, joy, motherhood, loss, confusion, doctors, and still she sees the light beyond.

My husband bought me a necklace with a bird on it for Christmas this year. For the longest time I had been infatuated with birds; freedom, flight. That was during a different period of my life - one where I needed to assert my independence and remind myself that I was never stuck in a place or situation. It was a different time.

I exchanged the necklace he thoughtfully bought for me and replaced it with a necklace with a lightning bolt. I needed something powerful hanging around my neck. I needed the reminder of my strength and power.

This year has been the most unexpectedly difficult year. You hear all the time of the woes and exhaustion of becoming new parents. Ours hasn’t been the ordinary journey into parenthood. Sure we dealt with things that I am sure most new parents deal with: loss of sleep, loss of free time (when I think back on all of the free time I used to have, I think “wow what a luxury and I didn’t even know it!”), a reconfiguring of identity and priorities. I am sure many mothers did it with more grace, because maybe it came more naturally. Maybe they were more comfortable tabling some other parts of their life or identity for the new role of mom. Not me, I fought it. I adored Isla from the moment I laid my eyes on her. It was hard not to. That was never the issue, but with the entrance of Isla came the biggest change of my life thus far: moving away from Brooklyn- my friends, my career, my community, my home, and my identity. It was such a loss. Even as I was moving through that loss I still couldn’t comprehend the magnitude of it. Leaving that city was like losing a great love. I felt walls crumbling around me. Walls that held me up. So much of my identity was wrapped up in that city. It didn’t matter what my career was, what my love life looked like, or my bank account- I was a New Yorker, that much I knew. With that gone, I was left to look around and figure out who I was besides a New Yorker.

I had to pierce the atmosphere to leave. It was painful and liberating all at once. Some people enter into parenthood and although their entire world has changed, they maybe can deny it a little longer, maybe the transition happens slowly. Not for us, we were, what felt like, ripped from our home. Our whole world changed all at once.

We didn’t move to some fabulous international city. No, we moved home. Literally, into my parents house for a year. I’m not sure that there is anything more humbling than that. “Yeah, we left Brooklyn. Yup we are living with my parents. Um, out in Princetown. Yeah, no, not too many people have heard of it.”

Okay, well, in fairness my parents are wonderful, and it was warm and safe and comfortable for Isla’s first year. And it’s just for a year while Nate commutes to NYC to finish his PhD coursework. It’s just a year and then we can go wherever after that. Somewhere fabulous I’m sure.

In that first year, because we had this enormous safety net of being with my parents, I was able to do things I had daydreamed about doing for years. Essentially work for myself. Create theater, social justice theater. Nate encouraged me to leave my stable job at the New York City Department of Education to do just this. And I was doing it. I was making it happen. I had been dancing around the idea of doing this for years and it was finally coming fruition. I began to truly understand the power of intention and action. It was amazing. I felt filled. I had Isla, Nate and I was doing the work that I wanted to do. The work I was meant to do. I felt happy.

The plan was that once Nate finished his PhD classes- he would get a job while simultaneously writing his dissertation and we would move out. Perfect. I guess the problem with the above statement is the use of the word “plan”. If having Isla has taught me anything it is that there are no plans...there are hopes, maybe, but not plans. Come to find out, there are no jobs for someone with a PhD in Spanish literature in Albany and although Nate is one of the most multi-talented people I know, Albany is just not very creative when it comes to placing people in jobs.

Okay, so we will stay at my parents just a little longer. Something is bound to come along.

It is June. Nate takes Isla into the doctor’s office for a routine 15-month visit. I don’t go. I had work and Isla is perfectly fine. Nate reports back to me that our doctor is concerned she is not walking and maybe she needs physical therapy. I push back. No, that is a slippery slope. I don’t want to be one of those parents who obsess over every little thing with their child, constantly comparing them to other kids. I want to let her just develop. It’s too early. Lets give her more time. I call the doctor and say, “I think she is fine. It’s just that her head is a bit large and maybe it is too heavy for her to balance.” This simple statement sends us on the ride of the lifetime. A light switches for the doctor. Perhaps there is something more to the size of her head, perhaps she has hydrocephalous. Hydro what? What is that? That sounds terrifying. Our doctor is a new doctor like we are new parents, perhaps not the best combination. The doctor suggests an MRI of Isla’s brain.

The night before the MRI I am giving Isla her bottle. She is looking dead into my eyes and it really just hit me that I am making choices, really hard choices, on behalf of this little being who is helpless without me. That is the most responsibility I have ever had in my life. I feel terrified for the next day.

Almost immediately after the MRI, her pediatrician calls to say, “she does not have hydrocephalous.” Wooh, what a relief. He said he would call later when he receives the finer details. A few hours pass and we get another call from him. Well it turns out Isla has some spots of damage on her brain. I ask, “Are you saying that Isla has brain damage?” He replies, “Yes, to an important part of her brain.” I walk away from the phone, leaving Nate to finish the conversation. No, no, no. How could this be happening? Why?

The first year we moved home feeling totally lost and I carefully explained to people our life plan. When people asked me where I lived, I would start off by saying; “I lived in Brooklyn for 12 years.” I couldn’t bring myself to say I lived in Princetown with my parents. I was so unsure of the road before us and so concerned with how that road appeared to others. Did people think, “They had so much potential. What happened?” So even though I hadn’t a clue what was around the next bend in the road, or the one after that, I did my best P.R.- it was exhausting.

After this phone call with the doctor, suddenly, I couldn’t care less what people thought of our lives. Truly. It didn’t matter. Our lives were happening all around us in big ways and there was no time to deal with what it looked like. There was only time to adjust our feet to stay on the wave and prepare for more oncoming waves.

The months that followed involved a pediatric neurologist, a developmental pediatrician, early interventionists, speech therapy, physical therapy and a special education teacher. I won’t bore you with the details of the numerous scares we had with doctors’ musings on what could possibly be wrong with Isla. But I will tell you that each time a doctor had a theory, I fully went there - imagining what life would be like for Isla and for us. The not knowing – the waiting - has been the hardest part of this journey.

I felt alone. A lot. Although we have really wonderful friends and family who stood by us, none of them had really gone through this. No one could really guide the way. Sometimes people with the best of intentions told me Isla is fine. While I appreciated their intentions, it is in direct opposition with what doctors have told us, several doctors who have worked with lots of babies. And it was confusing. Should I be upset or not? Sometimes it is people’s own discomfort with the possibility of something being wrong- I get that. Isla is wonderful because she is the only Isla she can be, but to say nothing is wrong denied the journey that Isla, Nate and I had been on for the last 6 months and I couldn’t do that- its not in my nature.

In the meantime, Nate got a part time job teaching English as a Second Language to refugee populations. It is work he loves. His students inspire him. He was also running around freelancing in the afternoons. I, too, was juggling 3 freelance projects, some of which took me to New York City on a regular basis. We moved into our own apartment on the street where I grew up. Never in a million years did I think that would happen. But I love it. The way the light filters into the apartment is so familiar. There is a park around the corner. A movie theater. It was a good move. Isla’s therapists come to our apartment and she loves them.

This past month we have been waiting for the results of Isla’s genetic tests. One doctor was concerned Isla had a syndrome called Fragile X. The waiting had been killing me.

On December 31^st, I had a miscarriage. I couldn’t help but to feel that this miscarriage was the product of so much worrying and upheaval in our lives. I felt like Nate and I have been holding on, waiting for something to give, for something to break and it just hasn’t. I couldn’t help but feel like this was one more piece of bad luck. Why were we being tested like this? Why did this happen? I couldn’t take another thing.

Two hours later, the doctor’s office called to say that Isla’s genetic test came back clear. These two events next to one another: joy and sorrow. Our year ended symbolically, the way it has felt all year. With happiness, sadness, fear, triumph all mixed in together. Messy. I think the way life happens.

I’m ready to feel light again. I don’t want to feel like I have to wear a lightening bolt around my neck because I need so much inner strength. But, I will wear it for a little longer until I know we can really exhale for a while

There will be more doctors’ appointments to come for Isla. More pieces to the puzzle to figure out. Hopefully it gets easier, even if it continues to be difficult. Many times over the course of this year, I have thought back to my experiences teaching students with special needs. I know now, that I didn’t have a clue of what their families had endured. How many doctors’ appointments and evaluations they had been to before they made their way to my second grade classroom. I hope I was good to them. I hope I treated them the way I want to be treated now.

Why am I writing all of this? I have come to feel that social media can be a wonderful way of staying connected to people, it also does us a major disservice. We begin to think people’s lives are actually the worlds they have curated on their pages - snapshots. While the pictures I have posted were true moments capturing love, happiness, success, first steps, there were other true moments between them, moments filled with tears, frustration, failures. Those moments, although painful, are also part of our adventure, part of our story. I think we do a disservice to one another when we share our lives only with a bow tied around them. The beauty of our lives is the totality of the peaks and valleys. It is the stumbling prior to arriving at the peak that makes the view so freaking majestic.

-Noelle Gentile is a director and producer of social justice theater, an actress, artist, and mother based in Upstate New York. You can read more about her journey at: http://alongherwaydotcom.wordpress.com