Finding My Way Back by Audra Butler

Image: Audra Butler

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. There was a time when I used to laugh more than I cried. When I looked forward to future adventures more than I looked back. When my husband wasn’t afraid to talk to me. 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 spinal muscular atrophy (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 of this horrific disease 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 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.

***

Happiness can be found, even in the darkest of times, if one only remembers to turn on the light. ~ Albus Dumbledore

My husband and I received the news that we were having a healthy baby girl in January 2010 – I was 15 weeks pregnant and already showing. The wait for the SMA test results had been very difficult, leaving me tense and apprehensive. While I was so very relieved that our daughter did not have SMA, I was frightened that something else would take her from us. Just one year earlier, I had been told that I was having a healthy boy and had believed the doctors – only to be blindsided by a nightmare. This time, I trusted no one and could not stop worrying that I would lose my girl too.

As the weeks passed and my due date grew closer, I hoped that my fears would abate. I wanted to feel unbridled excitement about her pending birth. I wanted to buy pink clothes with wild abandon and decorate her room with flowers. I wanted so desperately to know happiness again. Thinking that she would bring the light back into our lives, my husband and I decided to name her Lucy.

Three weeks before Lucy was born, we went through Andy’s things – which we had kept in storage since his death – to determine what items his sister would share. Piece by piece, my husband and I sorted through what we’d keep, donate and give to friends. And, we relived the memory of him with each one – telling stories with both tears and laughter – before finding its new place. Only then could we decorate Lucy’s room, filling it with pink tulips, tremendous love, and tentative hope.

I prayed that, when I held her for the first time, the blackness surrounding me would finally lift. That she would be able to heal my heart. That life would have meaning again. That all of our hardships would be behind us. I never stopped to think that these expectations might be too unrealistic and inaccessible for my baby girl to reach.

When Lucy actually was placed onto my chest right after she was born – squirming with life and nuzzling her little fist – I was unprepared for the moment to be so incredibly bittersweet. While I was indeed filled with an overpowering love for her, it still could not stop my thoughts from turning to Andy. There we were, in the same operating room with the same doctor that had delivered him exactly 18 months and one week before. When I looked at Lucy, I saw her brother’s eyes, lips and chin. When she moved so enthusiastically, I saw how he couldn’t. When she cried so lustily, I heard his quiet mewling. When she coughed or sputtered, I panicked, remembering how he died. I couldn’t stop seeing what I’d missed the last time.

I hated telling our story to the nurses on the hospital’s maternity ward. One nurse in particular kept asking us if Lucy was our first child. I repeatedly told her no, explaining that our son, who would have been Lucy’s older brother, had passed away the year before from a neuromuscular disease. When my parents came to visit us during her shift, that knowledge clearly was not enough to deter her from inquiring if Lucy was their first grandchild. She quickly left the room as I began to scream.

I wanted to lose myself in my daughter, fully appreciating each precious first moment, but it felt like I wasn’t allowed to. Every time I focused my attention solely on Lucy, I was pulled back into the past – either by an insensitive nurse, a heart-searing memory, or a deep-rooted fear. I was caught in the crossfire of rushing hormones and heightened emotions. I didn’t know how to reconcile my joy over Lucy’s birth with my grief over Andy’s death.

While I was committed to working as hard as I could to be the best mother possible, I had never been more afraid that I would never truly be the mother that Lucy deserved – I was just too broken. Full of doubt, I was no longer sure that my heart could be healed.

***

I was emotionally and physically overwhelmed by Lucy’s birth, only sleeping a couple of hours a day and pumping breast milk every three hours around the clock as I recovered from surgery. Adding this to the grief I carried was proving to be too much for me to handle.

The only bright spot in my day was Lucy herself. I was enamored by her every little movement. Every day it seemed she learned something new or changed in some amazing way. I loved every bit of her from the thick brown hair on her tiny head to her chubby little pink feet. I would watch her, laughing and crying simultaneously, thrilled that she was mine to keep and astonished by all she could already do. I hated spending time away from her. I didn’t want to miss a moment of her life or take anything for granted.

But, I had to return to my part-time job, telecommuting from home, just two weeks after Lucy was born. It was too soon, but we couldn’t afford for me to take a longer unpaid leave – we already were behind on our bills from the added medical expenses of the pregnancy. Unbelievably, I was back in the same place I’d been after Andy’s birth – stuck between my new baby and my old responsibilities. I wondered how life could be this cyclical – or if I was repeating history with these questionable choices.

My fear that something would happen to Lucy increased exponentially with each passing day. I constantly compared her development to Andy’s. I obsessively tracked her every meal and diaper. Even though I started to feel claustrophobic in my own house – like the walls were closing in – I didn’t want to go any place where she may be exposed to illness or leave her with anyone but my parents. Even then, I made them report about everything she did, down to the minutest detail, while I was away. I thought that, this time, my vigilance would allow me to expect the unexpected. Once more, I was wrong.

When Lucy was four months old, she suddenly became very sick after a day we’d spent out with friends – she had a 105 degree fever and was vomiting. As my husband broke every speed limit in our desperate rush to the hospital, I sat, terrified, in the backseat with her. I stroked her face with a cool cloth, hysterically sobbing and begging her to be okay. I instantly assumed the worst, and I couldn’t help but wonder why this was happening to us again. We were in the same car, with the same car seat and stroller, on our way to the same hospital where our son had been given a death sentence.

After a long night of grueling tests, including a spinal tap, the doctors told us that Lucy had a severe urinary tract infection, but would be fine after a round of strong antibiotics. Admitted to the pediatric ward for just two days, she recovered quickly, getting back to her happy and playful self. But, for me, her hospital stay was reliving a nightmare, especially when the doctors and nurses recognized us as Andy’s parents, not knowing we’d lost him, and asked how he was.

We returned home this time with a healthy baby girl, but I was on the verge of a breakdown. Lucy continually provided me with proof that she was different – that her life would not be stolen like her brother’s had – but I just wouldn’t allow myself to be convinced. I felt like I was failing as a mother. Unable to handle the stress and anxiety within me, I started to lash out.

If my husband worked late, I would become more and more enraged with each extra minute I waited for him to come home. Couldn’t he see that I was barely hanging on? Didn’t he know that I couldn’t do it all? I just didn’t understand how other mothers managed, when I felt like I was failing at the basics – taking care of Lucy, getting my work assignments done, getting a shower, and getting dinner on the table. And, when he arrived at the door, I would meet him, yelling that things needed to be different. That Lucy deserved another, better mother. That we should just get a divorce so he could find someone else who wasn’t so unstable and incapable. That it should have been me to go, instead of Andy. I was screaming for help at the top of my lungs, and he didn’t know what to do – but, thankfully, he never left my side.

He told me that he loved me, crazy or not. That he knew how hard I worked and appreciated it, even if he didn’t always say it out loud. That he was amazed by all of Lucy’s achievements, which he kindly – although undeservedly – attributed to me. That I was a good mother – and, more importantly, the mother of his kids and the love of his life. That he wasn’t prepared to lose me to anger or despair. He loved me more than I deserved. I hated how I was treating him, but I knew no other way to make him understand the anguish within me. I wished that I could grab onto his love and pull myself out of the blackness. But, I just wasn’t strong enough.

Suddenly, it was December, and Lucy was 20 weeks old. On the day when she reached that milestone, I watched the clock, very aware of the passing of the exact minute in which she surpassed her older brother’s age. From that moment on, she was older than Andy ever would be, and I would never again be able to compare my children at the same age. I thought that, with this hurdle overcome, I’d be able to let go of some of my anger and fear. I hoped that, maybe now, the healing would begin. Instead, I just felt guilty that we were embarking on new life experiences without him.

The days continued to pass, bringing with them Lucy’s first Christmas – a holiday that Andy had never known. We left an empty space on our mantel for his stocking, a tribute to what he should have had and a reminder of what our family was missing. We tried to make as many happy memories as we could for Lucy and for each other. People told me that, with time, the holidays would be easier to celebrate – the milestones and anniversaries less brutal – but I wasn’t so sure.

If Lucy was my heart, then Andy was my soul – separate and distinct parts of me, but both so very necessary for my survival. I had to figure out how to move forward, without sacrificing either of them.

***

In a stressful start to the New Year, we spent January 2011 looking for a new house. With our finances still tight, we thought that we would benefit from a lower monthly payment, and, as I still worked from home, that a change of scenery might also help. Even though I knew it was the right decision for us, I worried about the impending move, afraid that it would take us another step away from Andy.

At the same time, my hours devoted to work had increased, and I was leaving Lucy – more often than not – in the care of my parents, so I could attend meetings. I was wracked with guilt that I wasn’t putting my daughter first, feeling like I was ignoring one of the lessons I had learned from my son. I simply didn’t know how to prioritize my life when everything in it seemed to urgently require attention.

Not taking the time to care of myself as I should, my weight ballooned, I was constantly fatigued, and my anxiety sky-rocketed. My husband was withdrawn and clearly exhausted. Feeling the tension that surrounded us, Lucy began to act out. And, as if my body was mimicking my mental state, my back gave out too.

In that moment when everything was going wrong, I realized that I, once again, needed to make a major change. Life could not go on this way, and moving alone was not going to solve our problems. I had been so preoccupied with my own feelings that I had been blind to my family’s suffering. And, if I continued on this downward spiral, Lucy ultimately would be the one hurt the most. She was eight months old, and I was confident that I had not yet been the kind of role model she deserved. I had to figure out how to accept my life for what it was and to recognize all of the good in it. But, this time, I couldn’t wait for circumstance to intervene – it was up to me to pull the trigger.

So, I started a diet – my hope was that, by taking this simple step, I would feel better physically and have more energy to focus on Lucy. With a meal plan in place and dinner now on the table almost every night, I also started to think that I might actually be able to achieve what seemed so easy for everyone else. As I began to meet these small goals, I began to feel cautiously optimistic that I could make even bigger changes for both my family and myself.

The same month, we finally moved into our new home. While I still hated to leave Andy’s little blue room behind us, I suddenly felt free from fear and anguish that chained me to the old house. And, surprisingly, I felt Andy’s presence in every room of this home he never knew. With that feeling came the realization that he was always with me – he was, in fact, a part of me – and that he would help me find the strength to keep moving forward. So, I let go of the guilt that I was leaving his memory behind. With this revelation in mind, Lucy and I began to head out of the house on little adventures – to the store, to the pool, to the playground, to play dates, and to the petting zoo. Together, we began to discover the joys of life, reveling in the tiny details that most people overlook.

By the time Lucy turned one, I had lost about 35 pounds and was on my way to losing even more. I also was feeling happier and more motivated than I had in years. I enrolled her in pre-school for nine hours a week, giving her a chance to play with other kids and giving myself a much-needed break. I talked to my boss, proposing an adjusted work schedule so I could better balance my life. My husband and I began to take the necessary steps to get our finances back in shape.

And, for the first time since 2009, I suddenly felt like I could take a deep breath. That the pressures in my life – the responsibility of taking care of a child, the daily duties of work, the maintenance of the house, the expectations of family and friends, the challenge of rebuilding my life – were not so completely overwhelming. That, while the pain was still there in the background, I now had real moments of peace in my day. That I could think. That I could laugh again. That I could love and be worthy of love in return. That I could allow myself to heal. And, I discovered that I was looking forward to meeting the person who I was becoming.

With that clarity, I realized that I had not just been grieving – I had been profoundly depressed. In retrospect, I could see the glaring red flags marking the signs of depression – the breakdowns, the outbursts, the inability to cope. It began in the post-partum days after Andy’s birth, and, fueled by the perfect storm of events following it, had taken over our lives. But, I could no longer blame all of my issues solely on circumstance – I had to be accountable for my actions. It was time to get over my fear of judgment and seek the help I needed.

I thanked my husband for being there for me without condition and for putting up with so much with little complaint. He took our vows – in sickness and in health, for better or for worse, for richer or for poorer – very seriously, and I will be forever grateful for that. He, in turn, apologized for not hearing my tirades as the cries for help that they actually were and for not assuming more control after I so clearly lost it. I also made sure my parents knew how much I loved and appreciated them for their willingness to help us, in any way they could, and for their patience with me. I gave Lucy too many hugs and kisses to count – for being the perfect heaven-sent child that she is and for giving me a reason to hope again. Silently, I looked to the stars and thanked Andy too – for sharing his strength with me and for guiding me during this search for peace.

With renewed awareness, I am continuing to reclaim my life – while understanding that, to do this, I must relinquish control over it. I still have my share of dark days, but I feel like I’m getting better at coping with them. I can now see the light at the end of the tunnel. I can bask in the joy that is my daughter without guilt. I can remember the wonder that was my son without tears. I am learning to have faith once more. I certainly am not done healing, but I am proud of what I’ve accomplished so far. I have been to the abyss, and I almost got lost in it – but, slowly but surely, I am finding my way back.

 

Bio: Andy Butler was diagnosed with Type 1 Spinal Muscular Atrophy (SMA), when he was nine weeks old. The disease took his life less than three months later. Before his diagnosis, his mother, Audra Butler, had never heard of SMA. She now works to advocate for carrier and prenatal testing, to support other families impacted by the disease, and to raise funds and awareness for a cure. She currently serves as the Vice President of the Greater Florida chapter of Families of SMA. She also created “Andy’s Army” at www.andysarmy.com, in order to promote awareness of SMA, to share her family’s story with others who have lost a child, and to keep Andy’s memory alive. She lives with her husband Alan and two-year old daughter Lucy, who is healthy, in Land O’ Lakes, FL.

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Comments

  1. Lauren Damurjian says:

    Just wanted to say thank you for sharing your story. We lost our son in 2006 at 3 days old due to a congenital heart defect. So much of what you said mirrors my own feelings. We also have a daughter, although she is her brother’s older sister as she was nearly 5 when we had to come home without her baby brother. I’m happy for you that you have been able to make your way out of the murky black mire. It does take a long time and so much damage can be done, but sharing this brings so much hope to others, It also helps shed the guilt knowing we are not alone in our anger, rage and disappointment. Knowing we are not alone, while sad because of what we share, is so helpful. You are blessed with a loving family and your photo of your son is just precious. Be well and stay strong. Know you are a good mother to an angel on earth and another in heaven.

  2. Firstly i just wanted to say how sorry i am that Andy had to go through all this and that you and your family did too. Thanks so much for sharing, you mirror my story somewhat, my son Harvey died when he was 13 months old from a neurodegenerative disorder and i nursed him at home his whole life till he died. I fell pregnant with my daughter 3 months after he died who was born completely healthy in 2011 but i still can’t quite believe it. I used to be an architect but couldn’t work for three years, both through looking after Harvey and in the time following his death, i developed quite bad anxiety, perhaps PTSD as well. i am now studying Visual Art at university and my daughter is the light of my life. people don’t understand how much it takes to rejoin life, starting even with leaving the house. We are having a good year this year, but i am still working on the balance of my 2 children and life. I hope you keep going from strength to strength x Anne

  3. Thank you for publishing this. There really aren’t words to describe the effect it had on me. It was beautifully written. I’m sorry for what you went through with Andy, and wish you the very best in the years to come.

  4. Wow, this was an amazing read. Thank you so much for sharing this story. I am wishing Audra many happy, healthy, beautiful days ahead!

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