It’s never too late to be who you might have been. ~ George Eliot
The other night, my husband and I were talking after we’d put our daughter Lucy to bed. He said something funny, and I laughed. He cocked his head to one side and studied me. I asked him why he was looking at me in such a weird way.
He replied, “You’re acting like yourself again.”
I asked him to clarify, and he said, “There was a time, not long ago, when you would have gotten annoyed at what I just said. Tonight, it made you laugh. I’ve missed that.”
My husband and I have been married for 13 years. We’ve both grown, changed and adapted during the course of our relationship. But the past three years have tested us unlike any before and have changed us profoundly – in ways both good and bad. Before we had kids – before we ever heard the words “spinal muscular atrophy” – I used to laugh more than I cried. I was a person who looked forward more than she looked back. A person that my husband wasn’t afraid to talk to. I know that I’m a different person now.
Not to say that my life “before” was perfect. I worked very long and stressful hours in a middle-management job in a small PR firm – making decent money, but not a lot of friends. I didn’t take care of myself as I should, always claiming that I didn’t have the time. I was frustrated. I definitely was bitter.
I thought that my life would magically change when I got pregnant with our first child – especially since we wanted a baby for so many years – but it didn’t. I thought that I’d be better able to balance my career and family after I gave birth to our son in January 2009, but I couldn’t. I felt pulled between the demands of my newborn and the expectations of my boss. I knew in my heart that I’d never be the mother I wanted to be as long as I had to go back to work, but we couldn’t afford for me to stay at home with the baby. Somehow, I needed to make a change, but I was unsure of what to do and afraid to – metaphorically – pull the trigger.
Our son Andy’s diagnosis of Type I SMA took care of that – but it went one step further, gunning down our dreams in cold blood and riddling our lives with bullets. In an instant – the time it took for the on-call resident at the hospital to say, “I’m so sorry” – everything shifted. Suddenly, things that had been so important, like my job, were meaningless. I could feel my world turning upside down and going black at the edges. I couldn’t comprehend how this doctor could possibly tell me with such certainty that our baby boy – who was so perfect and wanted, who we tried for five years to conceive, who was only nine weeks old – was going to die before his first birthday.
With my newfound tunnel vision, I could only see Andy. His little nose, so like my husband’s. His blue eyes, so like my dad’s. His curly brown hair, so like my own. I had waited all of my life to be a mother, and he was everything I had ever wanted. I had never felt love like this before, so all-encompassing and pure, and now it was being threatened. His life was in danger. My job as his mother was to protect him, and I vowed to do whatever it took to keep him safe.
I left my job – just one week after I had returned to it from maternity leave – to stay at home full-time to take care of Andy. I learned how to be his nurse, administering medicines and operating the machines to help him to eat, breathe, live. A medical lexicon began to replace my regular vocabulary, as I took Andy to more specialists and learned more about the disease. Even my dreams were filled with images of his medical monitors and the gut-wrenching sounds of them alarming.
Besides our all-too-frequent trips to the doctor or hospital, I kept Andy cocooned in the safety of our home, guarding him from the harmful germs and unwanted comments from outsiders. And, when he was asleep, I researched clinical trials and experimental drugs, praying that there would be something that could save him from this disease. Just weeks earlier, I had been a new mom, scared and frustrated about returning to a job as a public relations professional. Now I was a full-time nurse, desperately trying to save my son’s life. I was utterly petrified, overwhelmed and unprepared for this new role. I could not comprehend how or why this was happening to us.
But, Andy was a beam of light in the darkness, guiding us and giving us hope. I held him in my arms, and he, in turn, wrapped his love around me. As long as he was smiling, I thought that all would be okay. I could find help with the nursing. We could adapt to this “new normal.” We could figure this out. We could win this fight. And then, on June 4, 2009, Andy died. He was only 20 weeks old.
I began a free fall into the depths of despair.
I don’t remember a lot of details from the days and weeks following Andy’s death. In my mind’s eye, I see flashes – reaching out to touch his picture in hopes of feeling his soft skin again, refusing to shower so I wouldn’t wash his scent off of me, following my husband as he carried that small white casket, smelling the freshly turned earth of his grave. I know that I took a lot of anti-anxiety pills, just to survive. I know that I saw no reason to get out of bed in the morning – or at any time of the day. I know that I was short-tempered with my family. I know that I lost or alienated many friends – my pain was too raw, and they simply didn’t know what to say.
Without Andy, I no longer knew who I was. I had redefined myself as Andy’s mother, but now he was gone. My work had defined me before that, but now I was unemployed. Without a sense of self to guide me, I was free-floating in a sea of guilt, doubt and grief. I didn’t know how to function or how to feel anything other than the ache of his loss. And, honestly, I wasn’t sure if I even wanted to – the pain was my only remaining connection to my son. I could not fathom a future for me without him in it.
My husband returned to work, and I was left alone in the house. I would wander room to room, talking to Andy out loud and crying. I sat in his little blue room – that we had lovingly painted and decorated a few months and an entire lifetime ago, so happy about our baby boy and so full of dreams for him – hoping that I’d feel his presence near me. I smelled his toys and clothes, trying to find his scent one more time. I looked for signs, believing that the dragonflies that swarmed in our yard that summer were sent by him.
I felt betrayed – by my genes that had failed him, by the doctors who couldn’t save him, and by the God who let this happen. With tears streaming down my face and choking with sobs, I asked “why” over and over again – why SMA, why Andy, why our family, why this path? What did I do that was so wrong to deserve this? Isolated by the blackness of my emotion, I was angry that no one could answer my questions or change what had happened. No one could bring my son back. And, I hated that life moved on for the rest of the world, as if Andy never even existed.
I tried to find my way out of the darkness by becoming active in the fight against SMA. I wanted to create lasting legacy for Andy – something tangible that people would remember and that I could cling to. In the process, I discovered a world of new friends, who intrinsically understood what I had no words to explain. I committed to doing whatever I could to end this disease and to supporting other people affected by it. I threw myself headfirst into raising funds and awareness. And then I’d hear that one more baby had earned his/her angel’s wings, and I would break down yet again, engulfed by the pain of that family’s loss and of my own. I knew that I needed another outlet, away from all of this sorrow.
So, I started looking for a part-time job, hoping that the routine and expectations of work, at the very least, would distract me from the pain and provide structure in my day. A former client hired offered me a position on their communications department, and, with bills mounting from Andy’s medical expenses and our savings devastated by the loss of my previous income, I was glad to accept it. But, as the assignments came in, I just felt, once again, overwhelmed and unprepared.
I tried to hide my true feelings behind a smiling façade, pretending to be strong and even stoic. I didn’t want my friends and co-workers to look at me with pity in their eyes or have to suffer through uncomfortable conversations with them about the events of the past year. Ironically, the more I concealed my emotions while in public, the more I heard how gracefully I was handling my grief or how inspiring I was. Inside, I felt so ashamed and undeserving of their praise. I would cry in the car on the way to meetings, drying my tears before I arrived and blaming my puffy face on allergies. But, at home, I couldn’t fool my family, who plainly could see that I still hadn’t found a way to cope.
And then, just four short months after Andy died, I learned that I was pregnant with our second child. I should have been thrilled. Instead, I was terrified.