Finding My Way Back – Part 2

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.

–Audra Butler