Tell us about yourself.

I grew up in East Helena, but my parents were divorced when I was very young, so I spent my childhood shuttling between Helena and Los Angeles, California where my dad is from.  It made for a very interesting and sometimes painful social life.  I was always considered an outsider growing up in Montana – it was a different world in the 1970s when we didn’t have social media, the internet, or even MTV.  I was always exhilarated by the city – still am.  All the activity, excitement, fashion, different people and cultures made for an intoxicating blur of emotions.  And I soaked that up as a kid in terms of my looks, my clothing, my hair, my music.  I was the first exposure some kids in Helena had to those things, and sometimes that was a really negative experience.  But it did help me learn to be tough, a quality that would end up being a very important personality trait for me.

I never thought I would end up back in Montana.  I honestly couldn’t wait to get out of here. I went to college in California, then after a couple of years I got into graduate school and moved to Los Angeles – it was everything I had dreamed for. Being young in a big city! I met my first husband, a film editor from Mexico City, and I was just having the time of my life. After law school I worked at a firm, then for Santa Barbara County. We wanted a family. We traveled a lot. Everything was like a dream.

It took me a long time to get pregnant, then I had a miscarriage.  Looking back that first loss doesn’t seem like such a big deal now, but at the time I was profoundly devastated. I became very depressed, angry, and felt so foolish. Once you have a loss so many other people share that experience with you, but before it happens it is the last thing on your mind. We started trying again, and about a year later I got pregnant again. I was elated, and this time I had done my homework – I have three blood clotting disorders and was considered high risk. I took all the precautions, which including giving myself a shot of blood thinner in my belly twice a day during the entire pregnancy, and carried this little one to term with no complications. I was so excited to be a mom. My son Connor was born in September 2005. A very welcome little addition to our family.

I remember my mother-in-law was visiting from Mexico and she was the first one who noticed anything was “off.”  He’s too floppy, she said to me in Spanish. I brushed it off, a little irritated that she was saying something was wrong with my precious baby. But by the time Connor was 3 months old his delays started to become pretty obvious, even for a clueless first time mommy. I asked the doctor but she wasn’t concerned. Some kids just develop a little later than others, she said.

When he was 6 months old, I started to get really scared about my son. He couldn’t roll over, or grab, and he had terrible reflux. And he had started to do this really scary thing where I would put him on his back and he would scream and panic, look like he thought he was falling.  It was just crazy. I took him back to the doctor showed her this falling thing, and this time she freaked out. She wanted to put him in an ambulance to take him to the hospital immediately. It felt like my world was melting around me. I was so alone. My husband never came to the appointments with me, so I actually was alone. They did testing at the hospital for 24 hours and found nothing. We later got an MRI and they told me the results showed only “minor abnormalities.” We started him in physical and occupational therapy, which was crazy in a city the size of Los Angeles – shuttling back and forth all over the place in traffic while trying to work full-time in law. I waited months for a neurologist to see him. I remember taking Connor to the appointment. He was on my lap and she looked up from the scan, to Connor, then to me. I can’t believe this little boy is still alive, she said. He had a stroke in utero, and the brain damage is so bad I can’t believe he is functioning as well as he is. And she told me he had cerebral palsy. That is the moment that my life as I knew it came to an end.

But a new one began, of course. I immediately called my mother in Helena and told her I was coming home. We moved back here on Thanksgiving weekend of 2006, welcomed by a huge snow storm. My first husband didn’t last long here – I guess I probably underestimated the difficulty of a Mexican national adapting to small town Montana. But honestly, I didn’t care, I needed help with my son and I found it here at home with my parents. Connor and I adapted to life in Helena – I got a job at the state and as Connor got older we dealt with his growing needs. First a wheelchair, then a medical bed, respiratory care, feeding tube, accessibility improvements, an aide at school, and eye-gaze computer. Whatever he needed, I made sure he got it. He never spoke, but we developed the most amazing ability to communicate between us. It was almost magical, impossible to explain to those who haven’t experienced it. He was my light and my meaning.  Everything I did revolved around caregiving for Connor. Most days our life felt pretty regular and routine – definitely not the normal family routine but one we got used to nonetheless. Some days the pain of him not being able to ride a bike, or play soccer, or tell me he loved me, or having a kid call him “weird” to his face, some days it was too much to bear. But bear it we did. What other choice was there but to raise him as best I could?

Last year, when he was 10 years old, Connor started getting really sick with digestive problems. After a few local hospitalizations in Helena, we ended up in the emergency room at Seattle Children’s. Still no answers. About 4 months after it all started, his specialist called me from Seattle on my cell phone to tell me that my son was dying.  The conversation was unreal, almost like a normal doctor phone call. After 10 years of this level of caregiving, I was used to just getting to work figuring out what needs to be done to handle his next need.  I just took the information and started doing what I needed to do to face the next months, weeks, or would it be days?  We had no idea, but Connor only lived for three weeks after that call.  I look back now, four months later, and I can barely remember what happened.  Shock is such an amazing part of grief.  It protects us from what we cannot possibly bear, and I am so grateful for it.  In the end, after everything I had done to keep my son happy, healthy, and alive, I had to turn off his feeding tube and watch my precious, sweet, smiling little boy die.  He didn’t even make it to fifth grade.  The reality of it is still too much to wrap my head around.

The grief has come hard now, moved in and taken up a room in my house.  He is here when I wake up, comes with me to work, stands there over my shoulder as I cook dinner, and curls up with me in bed.  He seems to have an especially strong presence in my car, when I am driving around town running errands or heading to or from work.  I hate this new friend, but I know he’s here to stay. I lived through my son’s diagnosis, something I thought would kill me. It didn’t, and neither will this. But it is much, much worse.  And very few people understand the unique pain and guilty relief of losing a child with extensive medical needs. It’s a lonely path.  I started a little shrine in my house with pictures and some of his things, and I keep a St. Michael candle burning there – his saint’s name.  It’s a small relief, but helps me feel like his little shining spirit is here with me. Most days I keep myself distracted but some days the pain just overwhelms me. It hits so hard it feels like someone is squeezing my heart and then it spreads into my throat, choking me.  Heartbreak is actually a physical sensation.  Just writing this and thinking about him I can feel it creeping up on me. I miss him so very, very much. I miss his smile, his warmth next to me when we snuggled, his laugh, and holding his hand. You just can’t ever be ready to deal with your baby being gone.

I have another child – a 2- year old princess with my second husband.  They are my rock and the reason I drag myself out of bed every morning and of course I am spoiling her absolutely rotten. I work full-time out of the house. I have kind of a dual career – my master’s degree is in urban planning, and then I went back to get my J.D. after a few years working as a land use planner. Honestly, I got sick of the attorneys telling me how to write the planning documents I was working on, and one day I thought to myself, why don’t I just be the attorney then I can write these things the way I want. So that’s what I did. Land use is my passion. I love to see how the built environment influences how we think, experience, and use the world around us – the ways in which it affects our interactions, responses, and lifestyles. I’ve done litigation, in-house counsel for local governments, private practice, and state government work.  This past fall I started a new job advocating for Montana’s cities and towns, and it really is the “right” porridge for me. And it was a lifesaver to have a clean slate to start with after Connor’s death.

There are some moments that are so unreal, though. The legislative session has started and last week one of the committees invited all the regular lobbyists to introduce themselves, and most of them talked about their families, their children, their spouses.  What could I say?  Hi, I’m a mom, I have two amazing children but one of them is dead. Or should I just say I have a 2-year old daughter? I decided to not say anything. But I left the room exhausted, and angry, and jealous of the others who talk about their families without a second thought. I want to acknowledge his existence, but it makes for some seriously awkward moments. I’ve already learned to tread a little carefully with folks. If someone asks me how I am, I want to scream, how do you think I am?! But I just say, I’m doing okay. I hope I learn to deal with those situations better over time. It’s all so raw right now, everything is new, and painful, and lots of triggers that I am learning about and recognizing how they will affect me. I’m trying to be easy on myself and give myself permission to just let myself feel all the different emotions.

Who is a person you look up to in your life? Tell us about their impact.

My son will forever be my hero. I know that sounds cliché, and I am very sensitive to how our society “inspirationalizes” the disabled, but my boy was the nicest, most empathetic, patient, loving person ever.  He just had the biggest heart, was a friend to everyone he met, and made you feel like you were the only person in the room. His smile could light up a room, change your day, make you giggle. No one that ever met him will ever forget him. He basically was dependent on others for everything, and had every right to be mad and frustrated at his situation. But he took it all in graceful stride. I am so grateful that I had him for even the short time that I did, and so proud to be his momma. He taught me so very, very much about what is important in life, how to keep your chin up when things are difficult, and how to keep things in perspective.

What is something people would be surprised to learn about you?

For one year of high school I was the mascot on the high school cheerleading team.  I usually like to be looking at a person’s face when I tell them that.

What is one of your favorite books and why?

I am a voracious reader.  I have been reading non-stop since my grandmother bought me The Secret Garden when I was a little girl.  I read everything – fiction, non-fiction, historical fiction, short stories.  My dream vacation would be to spend a week by myself at Powell’s bookstore.  So this is really a hard question for me.  But the first book that had a profound effect on me was “Their Eyes Were Watching God” by Zora Neale Hurston, which I read in high school when my teacher assigned it to me for a reading project.  That book really opened my eyes to becoming a woman, and the big, different world outside of Helena.

Do you have a favorite quote?

I had this quote read at my son’s service, alongside Prickly Pear Creek in the cottonwood trees on Kleffner Ranch in East Helena. This story has always meant so much to me. Growing up in Montana, loving Montana and its beauty, and stillness, and soul. But also wanting to be out in the world, like Norman’s brother Paul. This quote speaks to me of the divine, the magic of life, of nature, and of relationships. “Eventually, all things merge into one, and a river runs through it. The river was cut by the world’s great flood and runs over rocks from the basement of time. On some of the rocks are timeless raindrops. Under the rocks are the words, and some of the words are theirs. I am haunted by waters.”  ― Norman Maclean, A River Runs Through It

Have you read, watched, or listened to anything recently that you’d recommend to the rest of us?

I can tell you that Game of Thrones is a really good way to avoid real life.

When you have 30 minutes of free-time, how do you pass the time?

I am trying to learn to appreciate the free time I have now.  I don’t know how I got everything done when I was caring for my son!  I have a soft spot for power tools, so much of my downtime is spent on some home project – building a fence, refinishing a wood floor or piece of furniture, or painting something.  Although I’m one of those people that starts a project then gets bored and moves on to something else. I’ve got half-finished projects all over the house, the garage, the yard. I also love to cook, and I make a mean apple pie.

How would your friends describe you?

Strong. I’ve gotten to the point in my life where I’ve come to terms with the fact that my personality is an acquired taste. So I try to limit other people’s exposure to it. I have a very small circle of close friends, and I don’t venture too far outside of that comfort zone. Especially now. There’s only so many people who feel comfortable with you talking about and crying over your dead child.

Describe one of your happiest memories.

I had an amazing childhood.  It’s like something out of the 1950s – riding our bikes around all day, playing in the creek, running up to get penny candy at the corner store. I remember there was a ditch that ran along the front of everyone’s property, and in winter the water would freeze in the ditches and we would ice skate on them. In the summer, we would do dances on the street and bike jumping competitions and roller skating.  Just hours and hours spent exploring the empty fields, the creek, our backyards. Collecting iron pyrite in Prickly Pear Creek and pretending we had found gold. My mom was friends with the Kleffners and I remember playing in that great big barn and running around wild for hours on end in the summers. And knowing that we had to get home when it started getting dark. It seemed like the days were endless. My memory of my childhood just always puts a smile on my face, and I am so very grateful to have had such a strong foundation for my future. I feel sad that kids are driven everywhere now, always parents around, “playdates” and everything so structured.  It’s hard as a parent to let them have their space and not worry about them but I think it is so very important for kids to have that experience, to learn how to handle yourself and test your boundaries and make mistakes and learn from them in a very real, hands-on way.

What’s one piece of advice you’d give your twenty-year-old self?

I don’t think there’s anything I could tell that hot-headed, stubborn, feisty, smart girl. She never listened to anything anyone ever told her, and always insisted on doing things her way.

Coffee or tea?

Coffee, of course.

Chocolate or vanilla?

Chocolate brownies and vanilla lattes. I’m actually not sure I would still be here mentally or emotionally were it not for these comfort items.

Introvert or extrovert?

I am very assertive, have no problems speaking in public, and don’t get intimidated. But I’m really not a huge people person.  I like to meet up on occasion with one or two friends or couples for drinks, dinner, or board games, and that’s about it.  A big party?  Event?  No thanks. So, what does that make me?

Rural or urban?

Definitely urban – prefer the town over the country.  But living in the city now would make me crazy, I don’t have the energy for it all anymore.  I love my small town life – we go for weekend drives in the mountains, go skiing, or to the lake, but I have the urban downtown, with restaurants and breweries and art galleries and entertainment.  And it’s a great place to raise kids. This community was like my village with Connor, everyone was always lending a hand, and trying to make things easier, and supporting us. I am eternally grateful for what the people in this town have done for my little family. Someday I would like to have a cabin, a place to get away in the quiet and solitude. But I wouldn’t want to live outside of town. I have no patience for commuting after my time in LA!

Dress up or dress down?

I have a hard time getting out of yoga pants and a comfy sweatshirt, but I can rock a pantsuit when I need to.

Cats or dogs?

Neither.  Taking care of Connor made it difficult to care for my dog and cat, and after they died I thought I would be done. Then Connor wanted a kitten and I made the mistake of falling for that.  When my daughter was a year old she was attacked in the face by a black lab.  I nearly lost my mind when that happened. It happened so fast, the blink of an eye, it was like slow motion. I heard a scream and only later realized it was my voice. By the time I got across the room to her it was over. 14 stitches and I still see those scars every time I look at her face.  So yeah, I’ve lost my appetite for pets.

Sunrise or sunset?

I’m not a morning person, but the few times I have accomplished being up before the sun it has taken my breath away. But that’s probably just because I can’t believe I’m up that early.

What do you love most about Montana?

Where to begin?  I love the beauty, being so close to nature, having a slower life. I love having my family so close, and running into friends from grade school at my job or the store.  It’s a very supportive life, there is a real safety net of community in Montana. It’s really no joke when someone refers to Montana as one big Main Street. I love having lived in the same geographical location most of my life – there is a real sense of watching time elapse over the places you’ve known for so many years. I’m also grateful that it’s still affordable.

For what in your life do you feel most grateful?

My parents. I can’t even begin to describe the intensity of support and help I got from my mom and dad in raising and caring for Connor. We would have been utterly lost without them. I know so few grandparents that would have stepped up to the plate the way they did, and I am so very lucky and fortunate that I have them on this journey. And it’s hard for all of us right now, we are all grieving so deeply it’s hard to provide each other the support and love we all need.

What’s a lesson you are currently learning?

The meaning of life.