Today is your third birthday.  It feels like just yesterday you were born, and, at the same time, it seems like that happy day took place several lifetimes ago.

I will never forget the trembling excitement I felt while waiting to be rolled into the operating room that morning and the nervous fear I felt when the surgery began. I will never forget the sound of your first cry as you entered this world at 11:52 AM. I will never forget holding you against me for the first time, so pink and full of life. I will never forget how soft your hair was as I brushed my lips against your tiny head. I will never forget the pride in your father’s tear-filled eyes as he looked at you.

January 8, 2009, was the greatest day of my life.  It was the day that I discovered how true and deep love could be. The day that I found how it feels to be truly happy. I didn’t yet know what it meant to be a mother, but I knew that our life would never be the same. I also didn’t realize then that what an understatement that would turn out to be. With your birth, our family unknowingly started a precarious journey through love and loss. The rosy future that we had imagined for you never was to be. You had a different plan all along.

Three years later, I often wonder what our family’s daily life would be like if you were still here with us. What kind of boy would you be today? How would we celebrate your birthday? Would you still be the happy little man that I knew? Would your hair be a tumble of curls like your sister’s? Would she even be here? Would you still be able to laugh? How many little ways would you have found to amaze us each day? How much would SMA have stolen from you by now?  I wonder, but these are questions that have no answers.

Then, I think of you in heaven and a feeling of calm washes over me, quieting my tortured mind. I envision you running and playing with the other angels in a meadow of vibrantly colored flowers. I see your sweet smile, and I hear your laugh ring through my thoughts like bells pealing. Light illuminates your face, and your blue eyes shine. You are radiant. You are peaceful.  You are free. This, I can visualize so very clearly.

Andy, I have fought for years to escape from the black hole of your loss, trying to follow your light out of the darkness. Now more than ever, I can feel your presence around me. Our spirits are connected in a way that transcends all space and time. As much as I believe that you are in heaven, I know that you are here with me as well. Perhaps, right now, you are sitting beside me on this couch with your head resting against my arm. Perhaps you are whispering the words that I write.

I am your mother, and I always will be, but I am not sure that I was ever meant to be your teacher. You were sent from above with a heavenly mission and an important lesson to convey. I can only hope that I was a good enough student in our 20 brief weeks together to carry that lesson forward. I gave you life, but you continue to define mine.  Andy, I promise that I am still listening.

You send dragonflies to dance around your sister, your father and me. Their fluttering wings softly murmur in our ears, sharing your message of hope. I know that, through them, you are telling us not to worry about you. That you are where you need to be. That you are happy. These little visits always make us smile. I know that you want us, the family you had to leave behind, to recognize the joy in the smallest of moments and to appreciate all of the wonder in our earthly lives. And, to trust that, one day, we all will be together again.

While I may never understand why you had to have SMA or why you had to leave us so soon, I can accept that this is how it must be.

So, today, I will not try to imagine the birthday party we should have had for you or the little boy you would have been.  I will not cry for what never was, but I will embrace this day as it is and our family for what we are.  And, we will celebrate you – our baby who loved to laugh, even in the darkest of hours. Our baby whose sweet smile could brighten any room.

Today, we will wear silly hats – just like I made you wear on your monthly birthdays, we will eat cupcakes, and we will send you enough balloons to line the streets of heaven.  We will remember the precious time that we had with you in our arms, our smiles echoes of yours past.  Then, we will look towards the clouds in the winter sky as our balloons fly to you and listen to hear your voice on the wind. We will be thankful for all we have. Your gift to us is the present, and we will cherish this gift.

But, what can I give to you, my angel?  You know that you already have my love, trust and faith – forever and always. So, on this birthday, my gift to you is a promise, and I believe it is one for which you have been waiting.  You have my word that I will no longer allow sadness, anger, and grief to overcome me.  Instead, I will wake each morning to the dawn’s gentle light, knowing that you are in it. I will rejoice in each day’s little adventures, understanding that the joy I feel in my heart is sent by you. And, I will go to bed each night with a tranquil mind, hoping to see you in my dreams. You taught me what happiness is, and, for you, I will try my hardest to share that lesson with the world.

Happy third birthday, son.

Love,

Mommy

Andy and Mommy on January 8, 2009

This is one of the first books we bought for Andy before he was born, and I always think of him – my perfect baby boy – when I read it:

On the Night You Were Born

By Nancy Tillman

“For you are fearfully and wonderfully made…” – Psalms 139

On the night you were born
the moon smiled with such wonder
that the stars peeked in to see you
and the night whispered,
“Life will never be the same.”

Because there had never been anyone like you…
ever in the world.

So enchanted with you were the wind and the rain
that they whispered the sound of your wonderful name.

It sailed through the farmland
high on the breeze.

Over the ocean…

And through the trees…

Until everyone heard it
and everyone knew
of the one and only ever you.

Not once had there been such eye,
such a nose,
such silly, wiggly, wonderful toes.

When the polar bears heard,
they danced until dawn.

From faraway places,
the geese flew home.

The moon stayed up until
morning next day.

And none of the ladybugs flew away.

So whenever you doubt just how special you are
and you wonder who loves you, how much and how far,
listen for geese honking high in the sky.
(They’re singing a song to remember you by.)

Or notice the bears asleep at the zoo.
(It’s because they’ve been dancing all night for you!)

Or drift off to sleep to the sound of the wind.
(Listen closely…it’s whispering your name again!)

If the moon stays up until morning one day,
or a ladybug lands and decides to stay,
or a little bird sits at your window awhile,
it’s because they’re all hoping you see you smile…

For never before in story or rhyme
(not even once upon a time)
has the word ever known a you, my friend,
and it never will, not ever again…

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.

Christmas In Heaven

Sung by Sarah Schieber

2008 words and music by Jeremy Johnson and Paul Marino

December hasn’t changed
This town looks the same
They still light that tree in the city square
There’s red, white, and green shining everywhere
And I wish you were here
And I wonder . . .

CHORUS:
Is the snow falling down on the streets of gold?
Are the mansions all covered in white?
Are you singing with angels Silent Night?
I wonder . . . what Christmas in Heaven is like

There’s a little manger scene
Down on Third and Main
I must have walked right by it a thousand times
But I see it now in a different light
Cause I know you are there
And I wonder . . .

Are you kneeling with shepherds before Him now?
Can you reach out and touch His face?
Are you part of that glorious holy night?
I wonder . . .  what Christmas in Heaven is like

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

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)

Sometimes, as I kiss your little sister at the start of each new day, I wonder if you remember the times that I whispered, “I’m going to kiss you a lot now, in case there’s ever a time I can’t,” and then covered your face with butterfly kisses as you laughed.  I hope that you can still feel my love.

Sometimes, when I miss you so much that I don’t want to leave the comfort of our home, I look out the window to see a dragonfly looking back at me. I wonder if you sent it to lift my spirits and to give me the strength I need to move forward.

Sometimes, when I take your sister to the park or to visit friends, I watch the little boys your age as they run and play. In my mind’s eye, I always picture the boy you should be running with them. I wonder if you’re trying to show me what you look like where you are now.

Sometimes, when I bend down to your sister and she throws her arms around my neck, I feel the tears start to fall. I wonder if you know that my tears are full of regret for the small pleasures you never had the chance to experience, while, at the same time, full of joy for every moment I had with you and for every tiny movement she makes.

Sometimes, when I hear your favorite song, the one that we played at night as I rocked you to sleep, certain lyrics catch my attention – “Someday I’ll wish upon a star and wake up where the clouds are far behind me.” I wonder if it’s a sign from you, telling me that you are safe and happy on the other side of the rainbow.

Sometimes, as your sister eats her dinner, she looks up at the ceiling, smiling, waving and saying, “Hi.” I wonder if she can see you.  Trusting her, I always smile and wave – and wish that I could see you too.

Sometimes, when the house is once again quiet, your sister’s motion-activated doll starts talking in the playroom. It says, “Hi, Mommy. Can you see me?”  I wonder if you’re asking me if I can sense your presence, because, oftentimes, I think I can.

Sometimes, as I lay quietly in bed at the end of another day, I wonder why SMA had to come into our lives and steal you from us. I try to console myself with the thought that, if just for a little while, I held an angel in my arms. And, I hope you know that, no matter how near or far you are, you always will be the heart of our family.

Sometimes, when I close my eyes, I try to remember every detail of you – the curl in your hair, the velvet skin of your cheeks, the smell of your hands, the warm weight of your body against mine. I wonder if you know what I would give to hold you once more.

Sometimes, as I replay the choices your daddy and I made for you in this life, I wonder if we truly did as you wanted.  Then a wave of peace washes over me, and I know that, while I might never fully understand, your journey was how it was meant to be. And so I fall asleep.

–Audra Butler

Through Facebook, Twitter, special events, proclamations, blogs and the media, we are working together in a global, grassroots effort to spread the word that, with no treatment or cure, SMA is the #1 GENETIC KILLER of children under the age of two. That, worldwide, a child is born with this inherited disease roughly EVERY HALF HOUR. That the SMA-causing gene is unknowingly carried by nearly 10 MILLION AMERICANS. That, the more closely you are related to a person with SMA, the higher the chance is that YOU might be a carrier of that gene too.

You may have seen this information before. It’s here on this website and on others like it. That’s why I want you to be aware of MORE than just statistics.  I want you to understand the real impact of this disease and why the SMA community is fighting so passionately.

Please take a moment to consider the following:

• How you would react if a doctor told you that your nine week old son would die from SMA within six months and that there was nothing you could do to save him? Imagine begging for help, being refused certain equipment, and getting the advice to simply “go home and love him.”

• How you would handle the feelings of frustration and isolation if your family and friends did not take the threat of this genetic disease seriously? How would you communicate that you are not the only carrier and that your child is not the only one who will ever be diagnosed with SMA? That, by asking them to get tested, you are not trying to scare them, but to protect them.

• What would happen if you had to quit your job to stay at home to care for your medically fragile son, even though you couldn’t afford to lose your income? Knowing that, if your child was hospitalized again, you simply wouldn’t be able to afford the bills.

• How you would respond if a stranger pointed to your daughter while you were at the store, asking “What is wrong with her?” And, you knew that, even though your child couldn’t talk or move, she understood that she is not the same as others and that she is unfairly judged for it.

• Where would you find the energy, after staying up all night with your ailing son, to fight with your insurance provider, doctors, and hospital administrators when they denied the care he so desperately needed to survive?

• What you would say if you had to explain to your three year old daughter, with tears streaming down her face, why she would never be able to walk?

• What you would do if your infant son died in your arms?  Could you survive the devastation?

Then consider the strength that every single person diagnosed with SMA shows by loving, laughing and living, in spite of the disease.  Are you as strong as they are?

I know that I’m asking you to think about the unthinkable. It’s uncomfortable. It’s upsetting. And, for me and everyone in the SMA community, it is very real. The situations listed above have actually happened to me or to people I know. And, they continue to happen every day.

For most families affected by this horrific disease, the acronym SMA meant nothing to us before our children were diagnosed with it. In the vast majority of cases, there was NO family history of the disease, and we were NOT offered carrier testing. We were blindsided by a diagnosis of SMA. We are now working to spread awareness to change that for you and your family.

We want you to have the power of knowledge. We want you to ask your doctor for a carrier test, even if it isn’t offered automatically.  We want you to avoid being a statistic like us. We want you to be prepared. We want your children to be healthy.  And, in return, we want you to help us continue the legacies of those we have lost to the disease, like my son Andy, and to keep hope alive for those still fighting.

Only through true awareness will we find a cure. Please tell someone you love about this disease today. Repost or retweet an SMA fact. Wear an SMA awareness ribbon. Do something to show that you care. If not for Andy, do it for the next child who will be diagnosed within this half-hour.

This logo was designed for SMA Awareness Month by our friend MJ

–Audra Butler

• Monday, August 8, 2011 - Applebee’s Dining to Donate Night, 5:00 p.m. to 9:00 p.m., 15090 N. Dale Mabry Highway, Tampa, FL. Present your server with our “Dining to Donate” Flyer (click the link to download a PDF copy of the flyer) and 10% of your bill (excluding tax and tip) will be donated to the Greater Florida chapter of FSMA! You can also click here for more details on the chapter’s Facebook event page.

• Saturday, August 13, 2011 – Candlelight Memorial Event to Honor SMA Angels, 7:30 p.m. to 9:00 p.m., Sunset Beach, 214 Shore Drive, Tarpon Springs, FL. Join our family as we light candles to remember Andy and his angel friends. Click here for more information on the chapter’s Facebook event page.
  

• Monday, August 15, 2011 – Applebee’s Dining to Donate Night, 5:00 p.m. to 9:00 p.m., 1905 S.R. 60 E., Valrico, FL. Click on this link for more information via Facebook and to download the event flyer.  Present your server with the flyer and 10% of your bill (excluding tax and tip) will be donated to the Greater Florida chapter of FSMA!
  

• Wednesday, August 17, 2011- Give Back Night at Chili’s Grill and Bar at Parkside, 5:00 p.m. to 9:00 p.m., 7250 US 19, Pinellas Park, FL. Click on this link for more information via Facebook and to download the event flyer. Present your server with the flyer and a percentage your total bill (excluding tax and tip) will be donated to the Greater Florida chapter of FSMA!

• Tuesday, August 23, 2011- FSMA is the “Community Corner” charity for the Tampa Bay Rays/Detroit Lions game at Tropicana Field, St. Petersburg, FL. 

As more events are scheduled, we will update this post. You also can check the Greater Florida FSMA chapter’s website at www.fsma.org/greaterflorida. Thank you for all of your support as we fight for a cure. Together, we will END SMA!

Love,
The Butler Family – Alan, Audra, Lucy and our Angel Andy

The aunt happily responded, “Wonderful! Does that mean he’s better?” To which I replied, “No, it means that he’s not dead.”

Flustered, she hung up the phone.

As I put down the receiver, I hoped that she didn’t think I was being flippant or mean. I knew that she didn’t understand what it meant for Andy to have the most severe type of spinal muscular atrophy (SMA), but I didn’t know how to verbalize the precarious and cruel nature of the disease. She wasn’t here to see how fast he was being robbed of his ability to move, cry, swallow, and breathe. She’s didn’t know how smart and aware (and wonderful) he was. She didn’t realize that, without a cure or meaningful treatment, Andy wouldn’t “get better.” That a common cold could kill him. That every day that he woke up, smiling and softly cooing, was a small miracle. That I cherished each second I had with him in my arms, knowing that any day could be his last.

That dreaded day came just weeks later.

My husband and I stood next to our son’s hospital bed in the pediatric intensive care unit. He was struggling, and we would have done anything to save him. Life without Andy was unimaginable. But, he looked at us with eyes so weary, and we knew in our hearts that he no longer wanted to fight. We kissed him all over and told him that we would love him forever, then we gave him permission to go. And so he did, taking a piece of my heart with him. Letting him go was the hardest thing I have ever done, but I knew then – and still believe now – it was the right thing to do.

But, how do I explain that? How do I convey the thoughts, feelings, and beliefs behind the decisions we made for our son? What words can adequately describe that look in his eyes, which has been burned into my soul? How can I convince someone who thinks we gave up hope that we never did – and still haven’t? How can I prove that, despite how hard I fought the disease, the outcome wasn’t really up to me? More importantly, why should I have to justify anything?

I think it’s a matter of perspective.

—

It’s not always easy to find friends that really understand you, especially after you have lost a child. Over the past two years, I’ve been very lucky to make several close friends in the SMA community. One of them is a woman with Type 3 SMA, a much milder form than Andy’s but degenerative nonetheless.

My friend is very strong, but sometimes I fear that she doesn’t really believe it. She sees how SMA has changed her – how she can’t walk long distances any more, how she is prone to falling, how she will soon have to depend on a wheelchair. She is afraid that won’t be able to be as active in her sons’ lives as other mothers. She doesn’t want to let them down now or become a burden to them in the future.

I see something different when I look at my friend. I see an accomplished woman who won’t be limited or defined by a disability. When she falls, she always pulls herself back up, no matter how hard she must work or how long it may take. She is a woman who fights to live as she chooses. Who shows unbelievable strength of heart every day. Who also shares a bond with my son, although she never met him, because she knows how it feels to have SMA. Who encourages her sons to dream and who inspires the dreams of an entire community.

Sometimes, when my friend feels down, she calls me. She always apologizes to me before she shares her feelings, saying that her experience and pain due to SMA pale in comparison to mine. That, while SMA has taken from her, it hasn’t taken a life. It hasn’t taken her child. That she should feel lucky, even though she doesn’t.

I always tell her the same thing. I don’t have SMA, and I can’t imagine living with it. I don’t feel the pain, anger and frustration of the disease as she does – SMA hurts me in different ways – but I unequivocally believe that she is entitled to those feelings. While there may be others with more severe symptoms or sadder stories, that doesn’t negate her experience. It doesn’t take away her grief over loss of ability or her fear of the unknown. As a friend, I will always listen, and I will always cheer her on. And, I know that she’ll be there for me when I need her.

You see, we’re fighting the same demon, just from two very distinct perspectives.

—

The other day another friend posted a link on Facebook about a very sick child and asked for prayers for him and his family. Thinking of Andy and how I had similarly asked for the prayers of strangers while he was fighting for his life two years ago, I clicked on the link and began to read about Baby Tripp and his battle with Junctional Epidermolysis Bullosa (EB). Yet another disease that I have never heard of. Yet another family blind-sided by an unbelievable diagnosis. Yet another child on the brink of death.

Tripp’s genetic condition causes a blisters or lacerations to form whenever there is friction or trauma to his skin or membranes. This means that he is covered from head to toe, inside and out, with raw sores and scabs. This two year old baby endures unfathomable pain every day – with every movement – and, not unlike my son, he still smiles.

Tears streamed down my face as I read a post by Tripp’s mother on her blog at http://randycourtneytripproth.blogspot.com/. In it, she recounts how Tripp’s doctors have said that his condition has worsened to the point where nothing else can be done, short of pain management. She writes, “I have known since Tripp was about 2-3 months old that I should expect to outlive him. And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would.  I could not even begin to count or explain the amount of emotions that have gone through my body through these past years… wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn’t have to suffer anymore.  And as many times as these emotions have [been] felt- there is no way I could begin to explain what I am feeling at this point.”

As I read her words, I recognized the conflict that she was feeling. I remembered Andy’s last moments, filled with a confusing mix of relief for him and despair for me. Then, I looked up at my family room wall to see the pictures of my beautiful son, with his skin so smooth, and I knew that I never had to helplessly watch my child suffer to the degree that she has. I once thought, from under my veil of grief, that losing Andy was the worst thing that could happen to us. After learning Tripp’s story, I wasn’t so sure.

Tripp’s mother can’t hold her son, as I held mine, without fear of hurting him. Even the simplest acts of care, like diaper changes and baths, are tortuous for him. She must be a witness to the unthinkable pain that her son endures, without being able to provide him lasting relief or comfort. She has suffered in ways that I will never truly understand.

I may have started walking ahead of her on this dark and winding path to bereavement, but I have no perspective of where she’s going or where she’s been.

—

It all depends on how we look at things, and not on how things are in themselves.  The least of things with a meaning is worth more in life than the greatest of things without it.  ~Carl Jung

I think that it is a true challenge to maintain perspective in the face of a nightmarish scenario. For me, it was coping with Andy’s diagnosis and then accepting his death. For my friend, it is coming to terms with her own limitations and rediscovering her inner strength. For Tripp’s mom, perhaps, it is finding hope, purpose and peace as her son moves on to the next phase of his journey – whatever that may be. All of us are in different places, facing different obstacles with different perspectives of them.

But, one thing is common to all of our experiences – we will do the best we can, especially for our children, no matter the circumstance. We can no more control the length of our time here on earth than we can control the genes that combined to make us – or our kids – who we are. But, we can embrace fully the life we have been given and love completely those who share it with us. We can learn how to adapt and adjust. We can find our way in an unfamiliar landscape. We can pick ourselves up when we fall. We can fight for what we believe.

And, if ever we have to let go of someone we love, we can understand that this is not the same thing as giving up or losing hope. It’s only a matter of perspective.

–Audra Butler

Our goal is for our team to exceed 75 members. If you’d like to join “Andy’s Army” at the walk, you can register online today at http://www.fsma.org/LWC/AndysArmy.

If you are unable to make it to the event, please consider making a donation to support it through this secure website: http://www.fsma.org/LWC/AndysArmy

We created “Andy’s Army” after our son’s SMA diagnosis as a way to rally our spirits and to remind us of the support of our friends and family at that difficult time. After we lost him to the disease, his army was there to continue his fight and ensure his legacy. We hope that you’ll come out to Ft. Desoto to march beside us once again.

Thank you for being part of our fight against SMA!

–The Butler Family

Today, you celebrate your first birthday. Right now, you are toddling around the floor in front of me, playing with your toys. Your brown hair is escaping from its entrapment in pigtails, little wisps of curl tickling your neck. You are on a constant pursuit of the ribbons, clips or bows that might be lurking in your hair. Your eyes are a blue-tinted hazel and are heavily lidded like your daddy’s – also like his, they are full of laughter and often a little mischief. Your skin is so creamy smooth, although your little legs and feet are beginning to brown from our many trips to the pool. Your rosebud lips are pink and perfect. You have eight little teeth, all showing now as you grin cheekily at me.

You are my wildest dreams come true. My most heart-felt wish granted. My greatest hopes personified.

Lucy, there was a time, after your older brother died, when I thought that I might never again truly know happiness.  A time when I tried to smile, but my eyes always betrayed my deep sadness. When I felt like a hollow shell of the person – and of the mother – who I once was. And then I learned that I was pregnant with you. Even from the beginning, you filled the emptiness inside of me.

At first, your fluttering presence within me was like a tiny pin-prick of hope in my broken heart. I was scared then for so many reasons – that I might lose you too, that I wasn’t whole enough to be a good mother, that the grief I carried with me would never abate, that I would unfairly compare you with your brother before you. But, with every passing week, my fears began to fade. You depended on me for your life, as much as I depended on you for mine. Your strong kicks and constant hiccups that shook my belly assured me that you were strong and healthy. That, this time, everything would be different and that you would be ours to keep.

And so, at 8:08 AM on Thursday, July 15, 2010, all 10 pounds and five ounces of you came screaming into this world. The doctor held you up, your mouth wide open in protest and your skin red with life. You cried out, and my soul recognized your voice. You looked at me, and my eyes answered yours with tears of joy. When you snuggled against me for the first time, I felt your heart beat next to mine, and I began to heal.

Daddy and I named you “Lucy” because it means light, and that is what you are. You brought us out of the darkness and back to life. You were sent to us by the angels above. You were hand-picked from the stars. You are the embodiment of all that is good.

While you do resemble your older brother, you are your own unique and amazing person. As much as he was patient and calm, you are spirited and in perpetual motion. Still, you do share one very important trait with him – you seem to radiate with happiness from within, and you surround those near you with that golden glow. And, of all of the people in your life, you seem to most readily recognize your brother – you wave at his pictures and say, “Hi, Bubba.” While you will not grow up together here on earth, we love that you already know that he watches over you from heaven.

With every passing month, Daddy and I have been astounded with how quickly you have grown and how much you have achieved. You don’t just reach milestones, you demolish them. You are walking, talking and eating with flourish. Your laugh is infectious. You have never met a person you didn’t like. You embrace each new life experience to which you are introduced and entice us to do the same.  You are a girl who clearly knows what she wants – and what she doesn’t want – and isn’t afraid to let us know in either case.

You definitely love to watch “Yo Gabba Gabba” and to eat cheese – perhaps a little too much of both – but hate to sit still for too long.  Splashing in the water and playing with your tea set are two of your favorite activities. You are frightened of the sounds of the blender, the vacuum, and thunder. You won’t go to sleep without Bun Bun in your arms and your thumb in your mouth. You love to growl like a scary bear, and, when you hear someone say “awesome,” you throw your arms over your head. You clap every time we exclaim “yay!” You think it is hysterically funny when someone sneezes, when Daddy “chases” you, when the dogs run through the house, and when I twirl with you in my arms.  You always fall asleep in the car, even if we’re just driving for a few minutes. We cherish every little detail of who you are.

Sometimes I wonder where my baby went, because you already seem so much older than your one year. Still, I will remember these precious first moments of your life forever. And, in those rare, quiet times when you lie drowsily in my arms, I know that you’ll be my baby girl always.

Lucy, you amaze me every day with your strength and your fearlessness. You are smart, beautiful, sassy, and already so very independent. You also are stubborn, quick-tempered, and easily frustrated, not unlike me. I try not to laugh when I tell you to do something, and you furiously shake your little head “NO.” In fact, I sometimes think of you as my little mirror – by watching you, I have learned so much about myself.  You have made me a better person. While I’m still a bit broken – and I fear I always will be – I will work my hardest to be the kind of mother that you deserve. Even if you don’t always agree with what I say.

I am blessed to wake to your smile in the morning and end each day with a goodnight kiss. I hear you call “Mama,” and I’ve never heard a more beautiful sound. You reach up for me to hold or comfort you, trusting that I will always be there. And, Lucy, I promise you that I always will. When you call for me, I will come. For the rest of my life and beyond.

No matter what the future holds for us, you are and always will be my perfect daughter. One day, when you are older, you’ll find this letter in your baby book, and I hope, as you read it, you will understand how much Daddy and I love you.  How you changed our lives for the better. How everything you do amazes us. How you are a miracle to us. How proud and lucky we are to be your parents.

We can’t wait to see what you’ll do next.

Happy first birthday, Lucy Catherine!!

Love,
Mommy

Lucy Catherine - July 2011