Finding My Way Back – Part 1

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.

(To be continued – Click here for Part 2)

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6 Responses to Finding My Way Back – Part 1

  1. Deb Young says:

    I love your writing!!!! Please don’t doubt yourself, I knew you were struggling, I knew you were trying to cope, I knew your grief had taken over your life but yet, you still inspired me, you still had more courage than anyone I had ever met, you took a stand and yelled and screamed to anyone and everyone who would listen. For that I say thank you … thank you for opening my eyes to a not so perfect world, thank you for teaching me to stand up and support things and try to make a difference. You are magnificent … you are wonderful … you are beautiful … you are awesome … you are kind … you are courageous … you my friend are truly amazing!

  2. Alison Cunningham says:

    Audra, reading your post I’ve been in tears this morning, relating to so much of what you say. When I read about you free falling into the darkness, the days alone at home talking out loud to your baby, the nursery, asking why and the guilt… all of it sounds just like my story. In fact it could be my story and for that reason I feel less isolated than I did in those early days since meeting other Mums of babies with SMA like you.

    The isolation is one of the worst parts of SMA… I’ve never felt so utterly alone, even from the people who knew and loved me the most. Like you, my identity was completely demolished. Becoming Molly’s mother was the biggest part of me and yet the world could no longer see that. Who was I and how would I survive? I wasn’t the girl I was before Molly but now the world could no longer see that I was her Mum either. Like you I had to take medication just to get through at first which I tried to avoid but admitted in the end I needed help (I was sinking fast and was afraid I’d never make it back – a truly scary and awful experience).

    After a few months I also took a part time job to try to get at least some routine into my life and I can relate so much to what you say about other people saying how well you cope. I became a great actress and it was easier to play that role sometimes, but behind closed doors that tsunami of grief, guilt and sadness would always wash over me.

    Finding a way back to myself (not the old me but the new me with bits of the old me in there!) has been tough but I’ve been determined to find a way out of the darkness. I’ve been lucky enough to have counselling free on the NHS for nearly two years now (I think you guys call it therapy). My counsellor and I have talked through many of the overwhelming and complex feelings that exploded when the SMA bomb went off in my live over two years ago now. With time I have learnt to look back at myself with compassion and forgiveness and see that girl struggling the best she could in a horrific situation. Don’t get me wrong, I still play scenes and decisions over in my head, I think I always will, but I understand I was just about coping in an impossible situtation and more than anything I loved my daughter with every part of me, pushing down my own grief with all of my might so that she wouldn’t see my fear and absolute horror at what we were told was inevitable. When I watch her videos and see her smiling and singing (Molly was and is the most vocal baby I’ve ever known!) I know she felt safe and loved, and I feel proud of that.

    Slowly, I’m starting to build a new me. It’s like the house I’d dreamed of (i.e. my life) was blown apart when Molly was diagnosed with SMA. I’d look around me and all I could see was rubble and had no idea how to re-build. Slowly, brick by brick with each day I’ve built a little bit more and now when I look around me there’s the foundations of a new house forming, it’s not the same as the old one, there are recognisable characteristics here and there, but it’s taken on a new shape and form. It wasn’t the house I dreamed of and based all my expectations on, but it’s a new home with it’s own identity carved out of a mixture of the past and a new future. In the beginning just getting through each day was a struggle, just putting a few bricks together was more than I could cope with. But now when I look up I see walls forming, a structure coming together and the whole thing seems more solid. At long last I’m starting to see the potential and with potential comes hope.

    I look forward to reading the second part of your story and thank you for being truthful, showing the vulnerablity we all feel behind the ‘strength’ the rest of the world sees. In doing so you’re helping others like me feel less isolated and alone. Love to you all xxx

  3. Rosemary Perry says:

    I am crying, but smiling – hearing you laugh and seeing you smile warms my heart.

  4. admin says:


    Thank you for sharing your story with me. You’re right – our paths have been so similar. Your analogy of SMA as a bomb is perfect. (I have to admit, I wish I had come up with it!!!) And, the thought of rebuilding afterwards is so very daunting. It took me a long time to pick up the first brick.

    I’m glad that this post makes you feel less alone. It took me several days to make the decision to post it, since it is so personal. But, you just made it worthwhile.


  5. Aaron Svela says:

    I don’t know what to say. I know there are no ways to truly take away your pain. Although,maybe now I understand, just a little, how my mother must have felt when a stranger at a doctors apointmeant I had when I was little and the stranger said. “So your son’s a cripple?” I have SMA my self. And I wish that I could help your pain. I hope for your best, Aaron M. Svela.

  6. Jessica says:

    Wow, Audra, you have such a way with words that I cried through this whole post. I can only imagine the utter grief you felt when you lost Andy. It is so heartbreaking…so many lives taken way too early. I am anxiously waiting for the next installment.

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