SMA News
Right now, there is a debate in the SMA community (at least on Facebook) about quality of life, centering on those with Type 1 – the form of the disease that Andy had. This debate has pitted people with the disease and families who have been more invasive in treatment for their children against families who have opted for palliative care and, in some cases, who have lost their children. Some ugly things have been said, and feelings have been hurt. What it really means to be hopeful and happy – for people on both sides of the debate – has been questioned. And, so I’m weighing in with my perspective on the issue and hoping to be a voice of reason.
I’d like to believe that all of us in the SMA community do the best that we can with the information that we have. I’d like to believe that we all strive to live our lives to the fullest. If we are parents, like I am, I’d like to believe that we all make the choices (which are often very tough) that we feel are in the best interest of our children.
My family’s personal experience with SMA was fast and furious. My son Andy was officially diagnosed on March 17, 2009. His disease progressed very quickly, and he weakened significantly, causing him to be hospitalized for several weeks at a time. My husband and I did all the research we could to understand the disease and listened to the advice of our doctors and specialists in crafting a care plan, specific to Andy’s needs. We contacted Hospice to assist us with in-home care. We measured our options very carefully and thoughtfully. More importantly, we listened to Andy and tried to follow his cues every step of the way.
Andy spent much of his life post-diagnosis in the hospital, and the quality of that time wasn’t the best. He had a g-tube placed to facilitate feeding. We tried using cough assist on the advice of other SMA families, but it made Andy miserable – he fought the machine with all of the limited strength he had. We administered regular nebulizer treatments to help him breathe easier. He took a laundry list of medications to fight reflux, to promote muscle strength, and to combat pain without compromising his respiratory system. We searched for other treatment options (like NIV protocol), but encountered a lot of resistance from our pulmonology group. Andy was on supplemental oxygen, and we wanted to try bi-pap to help him, but our doctors wouldn’t prescribe it. We fought for our son every day – in and out of the hospital.
And, we have never stopped fighting – even though Andy is now gone. We still work to raise awareness and to raise funds to support research for a cure. But, the reality of our SMA experience is that we had just eleven weeks from Andy’s SMA diagnosis to his death from aspiration pneumonia on June 4, 2009. Unless you have stood in my shoes, please hold your judgment.
Do I think that every choice we made in Andy’s care was absolutely right? Of course not. But, I can say with certainty that we made the choices that we thought were best for him at the time. We followed his lead – if Andy was smiling and laughing, then we believed that we were on the right track. We did what we thought he would want in every situation – and that included letting him go.
If my son had been a stronger Type 1, would we have made different choices? Maybe. Regardless, we would have weighed the options and done what was best for him. I feel it is very important that every family facing a diagnosis receive information on all care options and make their decisions free of pressure from any “side.”
Do I believe that we were “lazy” parents, as some have claimed about people who turn to Hospice, because our care choices were more palliative in nature? Or that we were making an “easier” choice by going this route? Absolutely not. Nothing about any of the decisions that we made was easy.
Do I believe that we “gave up” on our son or “had no hope” because of the choices we made? Hell no. I never did and I never will give up on Andy. He taught me how powerful hope for the future is – even if life doesn’t turn out how you’d once hoped it would.
Do I believe that administering palliative care is comparable to murder as one SMA community member opined? NO! And, I can’t express how offended I am by that sentiment and how hurtful it is to parents like me.
Do I believe that my son would have absolutely no quality of life had he lived? Again, no. I believe that we would have continued to fight for his happiness and comfort, just as we did during the 20 short weeks of his life.
Do I believe that people who make more invasive choices to keep their SMA-affected kids with them should be questioned about quality of life issues? Definitely no! I have the privilege and honor of knowing many families with amazing Type I kids. I read about them on Facebook, follow their blogs and YouTube videos, and cheer them on with every milestone that they overcome. Some, I’ve been lucky enough to meet in person. They are smart, beautiful, and fearless people – I would have been so proud for Andy to be just like them. In fact, I see Andy in the light in their eyes and in the shadow of their faces. Their parents work very hard to ensure that their lives are full and happy.
Just as I worked hard for each of Andy’s smiles.
The sticking point in this debate is that the nature of “quality of life” is entirely subjective. What makes me happy and fulfilled might make you miserable. What makes my children laugh may incite riot with yours. What gives me hope may be depressing to you and my definition of strength may seem weak. All of our decisions are influenced by a host of outside forces – including our morals, our belief systems, and our values – which are unique to us. Each of our children is wonderfully different. I don’t live your life – or your child’s life – and I won’t judge how you chose to live it. As it has been pointed out by others, life is terminal for all of us.
But, for my son, the end came much sooner than we ever feared. SMA is to blame for that – not my parenting. Even if we had been more aggressive in care choices, the sad truth is that he still might not have survived. My husband and I learned that, despite the decisions we made, it simply wasn’t up to us – we are not the ones in control in this life. And, none of these choices for our son had any impact on any family other than ours. We know in our hearts – whether you share our conviction or not – that we did what was right for our family.
At the end of this debate, my opinion is just that – an opinion. I believe that we all love our kids and want them to have great lives – whether they have SMA or not. I will continue to naively wish that the SMA community could just let go of the negativity and simply be supportive of each other. No family in this community should feel judged, nor should they feel like they have to defend themselves. We all are affected by a life-changing disease. We all need to show respect – regardless of whether we understand or agree with how any given family is handling the diagnosis.
And, when a new family enters our ranks, we should embrace them with open arms and open hearts. We should provide them with access to knowledgeable doctors and our learned experience – with no pressure. We should share our stories and introduce our kids. We should have compassion for them, not condemnation. We should remember what it was like to receive this devastating diagnosis and treat others how we would like to be treated. We should stand united as a community in search of a cure, not divided.
–Audra Butler
April 17th, 2012 | Posted in Family News, News | 12 Comments »
My father’s 70th birthday was Tuesday, March 3, 2009. My husband and I had plans to take him out to dinner to celebrate. Instead, we rushed our seven week old son, Andy, to the hospital, where he was admitted in respiratory failure. My father spent his birthday with us at in the pediatric intensive care unit at the hospital, desperately praying for Andy to survive the night and helping me get through it.
In the days following, Dad researched every possible scenario facing our boy, peppering Andy’s doctors with questions about botulism and providing me with reams of printed research. When Andy’s diagnosis of SMA was made official, Dad was there with ideas for proactive treatments, hoping to help us get ahead of Andy’s quickly progressing symptoms.
He and my mom brought us dinners, so we didn’t have to worry about cooking. They cleaned our house, and Dad mowed the lawn. After I had to leave my job, Dad even helped us pay the bills. My father always there so support us – mostly in quiet, unobtrusive ways – so we could focus solely on caring for our son.
During Andy’s many hospitalizations, Dad was a calming force in an often chaotic environment. When doctors wouldn’t listen to me, Dad took over trying to convince them to follow SMA protocol. He was – and still is – our greatest advocate. In fact, I think that Andy inherited his quiet strength from his grandpa.
When I looked at my newborn son, I saw my father looking back at me. Same eyes, same cheeks. They even shared a name; Andy’s middle name – Glenn – is my dad’s. In a life spent trying to make my dad proud, Andy’s birth was my greatest achievement. When I watched my father hold my son, I was filled with profound joy. I finally understood what it meant to be a parent and realized the true depth of my parents’ love for me.
And, Andy adored his grandpa too. Andy was in my dad’s arms when he lifted his head for the first – and only – time. When he was 12 weeks old, Andy lifted toys to my dad, even though he had very little strength left in his arms. But, Grandpa had asked him for those toys, and, like me before him, Andy would do whatever he could to make him proud.
Dad was there on the day that Andy was born, and he also was there on the day that Andy died, just 20 weeks later. I know that Andy’s passing devastated my dad, but I will always appreciate how strong he was for me. Dad dealt with the funeral home when I couldn’t. He still organizes the flowers that grace the headstone on Andy’s final resting place. And, while I understand how hard it must have been to see me suffer through such great pain, he gave me the space to grieve. Again, Dad supported me in any way he could – sometimes he listened as I ranted, sometimes he helped solve a problem that I couldn’t handle, sometimes he just comforted me as I cried.
And, Dad was there on the day almost two years ago when Andy’s little sister, Lucy, was born. She loves her “Papa” and has him wrapped around her little finger. She lifts her arms to him to pick her up, and I see the love shining in his eyes. She snuggles against him in his big chair as he reads to her, and I can feel the happiness radiate from him. She leans over to give Papa a kiss, and I know his heart is being healed – just as mine is too.
Today, Dad celebrates his 73rd birthday, and, tonight, we are finally taking Dad out to dinner. We won’t buy him lots of presents, because there’s nothing he wants. We are happy again. Our family is strong. Andy, while he can’t see him, is with us always. Lucy is smart, beautiful, and thriving. We’ve made my dad proud. What else is there?
Happy birthday, Dad. I love you.
Dad and Andy in March 2009
Dad and Lucy on his birthday in 2011
Me, Dad and my sister
March 3rd, 2012 | Posted in Family News, News | 4 Comments »
Dear Andy,
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.
January 8th, 2012 | Posted in Family News, News | 12 Comments »
For those of you who are missing your loved ones at Christmastime. And, for our Andy, who is surely one of heaven’s sweetest angels.
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
December 21st, 2011 | Posted in Family News, News | No Comments »
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
October 19th, 2011 | Posted in Family News, News | 11 Comments »
It’s never too late to be who you might have been. ~ George Eliot
The other night, my husband and I were talking after we’d put our daughter Lucy to bed. He said something funny, and I laughed. He cocked his head to one side and studied me. I asked him why he was looking at me in such a weird way.
He replied, “You’re acting like yourself again.”
I asked him to clarify, and he said, “There was a time, not long ago, when you would have gotten annoyed at what I just said. Tonight, it made you laugh. I’ve missed that.”
My husband and I have been married for 13 years. We’ve both grown, changed and adapted during the course of our relationship. But the past three years have tested us unlike any before and have changed us profoundly – in ways both good and bad. Before we had kids – before we ever heard the words “spinal muscular atrophy” – I used to laugh more than I cried. I was a person who looked forward more than she looked back. A person that my husband wasn’t afraid to talk to. I know that I’m a different person now.
Not to say that my life “before” was perfect. I worked very long and stressful hours in a middle-management job in a small PR firm – making decent money, but not a lot of friends. I didn’t take care of myself as I should, always claiming that I didn’t have the time. I was frustrated. I definitely was bitter.
I thought that my life would magically change when I got pregnant with our first child – especially since we wanted a baby for so many years – but it didn’t. I thought that I’d be better able to balance my career and family after I gave birth to our son in January 2009, but I couldn’t. I felt pulled between the demands of my newborn and the expectations of my boss. I knew in my heart that I’d never be the mother I wanted to be as long as I had to go back to work, but we couldn’t afford for me to stay at home with the baby. Somehow, I needed to make a change, but I was unsure of what to do and afraid to – metaphorically – pull the trigger.
Our son Andy’s diagnosis of Type I SMA took care of that – but it went one step further, gunning down our dreams in cold blood and riddling our lives with bullets. In an instant – the time it took for the on-call resident at the hospital to say, “I’m so sorry” – everything shifted. Suddenly, things that had been so important, like my job, were meaningless. I could feel my world turning upside down and going black at the edges. I couldn’t comprehend how this doctor could possibly tell me with such certainty that our baby boy – who was so perfect and wanted, who we tried for five years to conceive, who was only nine weeks old – was going to die before his first birthday.
With my newfound tunnel vision, I could only see Andy. His little nose, so like my husband’s. His blue eyes, so like my dad’s. His curly brown hair, so like my own. I had waited all of my life to be a mother, and he was everything I had ever wanted. I had never felt love like this before, so all-encompassing and pure, and now it was being threatened. His life was in danger. My job as his mother was to protect him, and I vowed to do whatever it took to keep him safe.
I left my job – just one week after I had returned to it from maternity leave – to stay at home full-time to take care of Andy. I learned how to be his nurse, administering medicines and operating the machines to help him to eat, breathe, live. A medical lexicon began to replace my regular vocabulary, as I took Andy to more specialists and learned more about the disease. Even my dreams were filled with images of his medical monitors and the gut-wrenching sounds of them alarming.
Besides our all-too-frequent trips to the doctor or hospital, I kept Andy cocooned in the safety of our home, guarding him from the harmful germs and unwanted comments from outsiders. And, when he was asleep, I researched clinical trials and experimental drugs, praying that there would be something that could save him from this disease. Just weeks earlier, I had been a new mom, scared and frustrated about returning to a job as a public relations professional. Now I was a full-time nurse, desperately trying to save my son’s life. I was utterly petrified, overwhelmed and unprepared for this new role. I could not comprehend how or why this was happening to us.
But, Andy was a beam of light in the darkness, guiding us and giving us hope. I held him in my arms, and he, in turn, wrapped his love around me. As long as he was smiling, I thought that all would be okay. I could find help with the nursing. We could adapt to this “new normal.” We could figure this out. We could win this fight. And then, on June 4, 2009, Andy died. He was only 20 weeks old.
I began a free fall into the depths of despair.
***
I don’t remember a lot of details from the days and weeks following Andy’s death. In my mind’s eye, I see flashes – reaching out to touch his picture in hopes of feeling his soft skin again, refusing to shower so I wouldn’t wash his scent off of me, following my husband as he carried that small white casket, smelling the freshly turned earth of his grave. I know that I took a lot of anti-anxiety pills, just to survive. I know that I saw no reason to get out of bed in the morning – or at any time of the day. I know that I was short-tempered with my family. I know that I lost or alienated many friends – my pain was too raw, and they simply didn’t know what to say.
Without Andy, I no longer knew who I was. I had redefined myself as Andy’s mother, but now he was gone. My work had defined me before that, but now I was unemployed. Without a sense of self to guide me, I was free-floating in a sea of guilt, doubt and grief. I didn’t know how to function or how to feel anything other than the ache of his loss. And, honestly, I wasn’t sure if I even wanted to – the pain was my only remaining connection to my son. I could not fathom a future for me without him in it.
My husband returned to work, and I was left alone in the house. I would wander room to room, talking to Andy out loud and crying. I sat in his little blue room – that we had lovingly painted and decorated a few months and an entire lifetime ago, so happy about our baby boy and so full of dreams for him – hoping that I’d feel his presence near me. I smelled his toys and clothes, trying to find his scent one more time. I looked for signs, believing that the dragonflies that swarmed in our yard that summer were sent by him.
I felt betrayed – by my genes that had failed him, by the doctors who couldn’t save him, and by the God who let this happen. With tears streaming down my face and choking with sobs, I asked “why” over and over again – why SMA, why Andy, why our family, why this path? What did I do that was so wrong to deserve this? Isolated by the blackness of my emotion, I was angry that no one could answer my questions or change what had happened. No one could bring my son back. And, I hated that life moved on for the rest of the world, as if Andy never even existed.
I tried to find my way out of the darkness by becoming active in the fight against SMA. I wanted to create lasting legacy for Andy – something tangible that people would remember and that I could cling to. In the process, I discovered a world of new friends, who intrinsically understood what I had no words to explain. I committed to doing whatever I could to end this disease and to supporting other people affected by it. I threw myself headfirst into raising funds and awareness. And then I’d hear that one more baby had earned his/her angel’s wings, and I would break down yet again, engulfed by the pain of that family’s loss and of my own. I knew that I needed another outlet, away from all of this sorrow.
So, I started looking for a part-time job, hoping that the routine and expectations of work, at the very least, would distract me from the pain and provide structure in my day. A former client hired offered me a position on their communications department, and, with bills mounting from Andy’s medical expenses and our savings devastated by the loss of my previous income, I was glad to accept it. But, as the assignments came in, I just felt, once again, overwhelmed and unprepared.
I tried to hide my true feelings behind a smiling façade, pretending to be strong and even stoic. I didn’t want my friends and co-workers to look at me with pity in their eyes or have to suffer through uncomfortable conversations with them about the events of the past year. Ironically, the more I concealed my emotions while in public, the more I heard how gracefully I was handling my grief or how inspiring I was. Inside, I felt so ashamed and undeserving of their praise. I would cry in the car on the way to meetings, drying my tears before I arrived and blaming my puffy face on allergies. But, at home, I couldn’t fool my family, who plainly could see that I still hadn’t found a way to cope.
And then, just four short months after Andy died, I learned that I was pregnant with our second child. I should have been thrilled. Instead, I was terrified.
(To be continued – Click here for Part 2)
October 18th, 2011 | Posted in Family News, News | 6 Comments »
Sometimes, in the very early hours of the morning when everyone is still asleep, I think I hear our bedroom door creak open slightly, followed by soft footsteps on the floor. I wonder if you are coming to crawl into bed with your daddy and me, as you would if you were still here.
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
August 23rd, 2011 | Posted in Family News, News | 8 Comments »
August is recognized internationally as Spinal Muscular Atrophy Awareness month. It’s a time when families affected by SMA come together as a unified front, regardless of the specific organizations we support or the philosophies we hold, to raise public awareness of this degenerative neuromuscular disease and to support research to find a cure for it.
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
August 20th, 2011 | Posted in News, SMA News | 4 Comments »
The month of August has been designated as “SMA Awareness Month.” Several activities are planned throughout Tampa Bay, Florida, (and throughout the nation) to promote SMA awareness, to honor our angels and warriors, and to raise funds for a cure. We hope that you will join our family at one or more of these local events:
- 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
July 31st, 2011 | Posted in News, SMA News | No Comments »
One day when Andy was still with us, my husband’s aunt called to check in. I answered the phone. She asked me how the baby was doing, and I enthusiastically said, “He’s great!” And, to me, he was. He wasn’t hospitalized. He wasn’t sick, and his vital statistics were stable. His feeding tube was providing him with good nutrition. He was smiling, laughing and watching his favorite DVD. He was here with me.
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
July 25th, 2011 | Posted in Family News, News | 6 Comments »
On Saturday, November 19, 2011, “Andy’s Army” will walk together at the FSMA Greater Florida Chapter’s Third Annual Walk-n-Roll in memory of Andy Butler and in support of a cure for Spinal Muscular Atrophy (SMA). The event will take place at Ft. Desoto Park (Shelter 14, 3500 Pinellas Bayway South, Tierra Verde, FL 33715-2528) from 9:00 a.m. to 1:00 p.m.
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
July 22nd, 2011 | Posted in News, SMA News | No Comments »
Dear Lucy,
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
July 15th, 2011 | Posted in Family News, News | 4 Comments »
Dear Andy,
Today marks the second anniversary of the day you became an angel – June 4, 2009. I can’t believe that two years have passed since your daddy and I last held you and kissed you. 24 months. 104 weeks. 730 days. 17,520 hours. 1,051,200 minutes. 63,072,000 seconds. We miss you as much as today we did the first second after you left us to find your place in heaven.
Since you’ve earned your angel’s wings, so much has changed for our little family. We have made good friends who we have come to cherish, but who only know you from pictures and stories. We now live in a new house in a different neighborhood from the home we shared with you. We have introduced your sister Lucy to the world and also have celebrated the births of our friends’ children. But no matter where we are or how much time stands between us, we wish you were still here.
Andy, you will never be forgotten. You cannot be replaced. You always will be our firstborn son. Our beautiful, blue-eyed boy. Our munchkin. Our little man. Our hopes and dreams personified.
Your daddy and I smile at the memories of the wide-eyed delight we felt on the day that we first learned we were expecting you. Of how we picked out the perfect name for you – Andrew Glenn – when we discovered that you were a boy, knowing your nickname would be Andy. Of the incredible pride and amazement we felt at 11:52 a.m. on January 8, 2009 – the exact moment you were born. Of the way you snuggled against your daddy the first time he held you, instinctively knowing that he would protect you. Of the trusting way you looked at me the first time I took you in my arms.
There is no way to break our bonds or to place conditions on the love that we feel for you. SMA may have taken you from this earth, but our spirits remain connected. The sound of your soft cry echoes in our minds. The ghost of you lingers in our arms. We remember and cherish every detail of you, from the curl on the top of your head to your chubby little feet.
As the days since we lost you have turned to years, we have come to accept that we were only meant to have you with us for a brief shining moment, instead of the lifetime we wanted. We have stopped questioning the decisions we made for your care and have let go of the guilt – believing that we followed your lead in making these hard choices. You trusted us to take care of you, and we did the best we could to fill each day of your life with joy.
But we also cannot forget the disbelief we felt at your diagnosis, the months of sleepless worry, and the devastation of your loss. How we were so unprepared to let you go on that anxious, tear-filled Thursday two years ago in the hospital’s pediatric intensive care unit. How your daddy lunged for the suction catheter as you took your last breath, hoping he could save you from death. How I held you one last time, silently praying that your heart would begin to beat again. How we cried over your body at the funeral home, knowing your soul was free to dance with the angels, but hating to feel your skin so hard and cold. How numb we felt on the day we buried you, because we could not fathom a future for us if you were not in it. We could not bear – or believe in – the finality of “ashes to ashes, dust to dust.”
Without the solidness of your presence, our lives were blurred. It took a long time – and some help from you from above – to regain our focus and to allow ourselves to take the next step. Only then could we understand that there were critical lessons for our family in the totality of our experience. That the good memories we have are that much sweeter for knowing the depths of the bad. And, that by sending your sister to us from heaven, you have allowed us to rediscover you through her and to find happiness once more. While very different, Lucy still reminds us so much of you.
But we are not perfect. There are dark days when we are drawn back into the depths of anguish. Overwhelmed and broken, we have lashed out at each other instead providing the comfort we need. I have been short-tempered with your sister, impatient with your daddy, and frustrated with family and friends, all because of my inability to cope. I’m disappointed in myself at these moments. It’s just that, sometimes, I feel like I am drowning in the swirling sea of my emotions, and no one but you can reach me. That no one else understands the constant pull of the unseen cord tying me to you.
Then I think of the courageous way you lived your life, and I push through the pain and my selfishness to again follow your example. Both your daddy and I remember how tirelessly you fought to live and know that we must continue the fight to make you proud. As we move forward into the unknown, we look to you for guidance, and you continue to lead the way. Time and again, in life and in death, you have amazed us with the power of your enduring spirit.
From heaven above, you hear us call to you, and you always answer. You give us peace and purpose. You speak to us now in signs – a song on the radio, a tiny sock in the laundry, the dragonflies that flutter around us, a whisper in the wind. You have made sure that we know you are only a heartbeat away from us and that knowledge has helped us heal.
You never lived in our new house, yet we feel your presence throughout it. Your pictures hang in every room, snapshots of our family as we were then and of you alone. Small precious moments of wonder captured forever. Your sister smiles at these pictures, babbles to them, and gives them kisses. She remembers you from heaven, just as we remember your journey here with us on earth.
But your impact extends far beyond our little family. Your legacy is far-reaching and awe-inspiring. Over the past two years, your story has made its way to almost every continent. From featuring your picture on the Jumbotron at a baseball game in Philadelphia to writing your name on a rock on the beach in Hawaii, people who never met you have honored your memory. Strangers reach out to us, having been moved by the tragedy of your loss. They tell us how they think of you whenever they see a dragonfly. And, today, they will keep us in their prayers.
To commemorate your angel day, we will gather around your grave and bring you flowers. We will be there at 5:05 p.m. – the exact moment you left this world. We will feel you in the warm caress of the spring breeze. We will see you in the brilliance of the sunset. We will hear you in your sister’s laugh.
Andy, while we believe you’re always with us, I hope that you’ll continue to remind us of just how close you really are. Please send another dragonfly to us today. Be an orb in a picture for Daddy – you know how he loves that. Allow me to glance at the clock and see :52 in the time. Visit Lucy in the playroom, but don’t wake her up at night. Instead, join me in my dreams. Most importantly, son, keep dancing freely throughout the heavens, and we will try to keep up with you here on earth.
Loving you forever and always,
Mommy
Andy and Mommy on June 3, 2009
I am not there
Do not stand at my grave and weep,
I am not there. I do not sleep.
I am a thousand winds that blow,
I am the snow on the mountain’s rim,
I am the laughter in children’s eyes,
I am the sand at the water’s edge,
I am the sunlight on ripened grain,
I am the gentle Autumn rain,
When you awaken in the morning’s hush,
I am the swift uplifting rush of quiet birds in circled flight,
I am the star that shines at night,
Do not stand at my grave and cry,
I am not there, I did not die.
Author Unknown
June 4th, 2011 | Posted in Family News, News | 8 Comments »
On May 17, 2011, Oprah Winfrey featured author James Frey on her show. During the interview – which mostly dealt with reconciling the controversy over his book “A Million Little Pieces” – Oprah mentioned that his family suffered a loss in 2008. With tears threatening, he began to talk about his son Leo, who passed away due to spinal muscular atrophy just eleven days after his birth. After gently leading Frey through more questions, Oprah asked if he was at a place where he had “found closure” since his son’s death. He looked at her with haunted eyes and said that losing a child is something you just don’t get over.
This exchange has been repeating in my mind over the past several days, dredging up my own memories of similar conversations. Like Frey, I too have lost a child to SMA. Almost two years ago, on June 4, 2009, my infant son Andy died from aspiration pneumonia as a result of this horrific disease. On that day, I learned the lesson that the Frey family already knew – there is no pain greater or more devastating than the loss of a child.
I have lived with all kinds of pain in my less-than-perfect 37 years. I have endured break-ups, breakdowns and broken bones. I have hurt others with sharp, emotion-fueled words and have been hurt in return. I have failed people whom I love, and I have been betrayed by people whom I thought loved me. I have lost family and friends to distance and death. I have cried many tears for many different reasons. Some of this pain has been erased by the passage of time. Some was resolved with a long talk or a tight hug. And, some will remain with me for the rest of my life. But, there is no comparison between any of these past hurts and Andy’s death.
Because on the day he died, a piece of me died too. A piece that can never be recovered.
In the immediate days and weeks that followed Andy’s passing, I was consumed by anguish. The act of being a mother – from the months of pregnancy to the around-the-clock care of a newborn – creates a very real physical bond. And, when that child is no longer there, the loss is visceral. Everywhere I turned, there were memories of my son. Even my body reminded me of him – the stretch marks and scars of his birth were a constant reminder of the child I once carried. I cried constantly. I quit my job. I didn’t want to get out of bed. My life without Andy seemed pointless.
Several of my well-meaning friends asked me when I thought I’d “get over it” and get back to “normal.” Some advised me to go back to work, to exercise more, or to go on vacation in order to “take my mind off of it.” This advice infuriated and frustrated me, because they simply didn’t grasp the depth of my pain and the tangible nature of this loss – and never would. While I understood that my friends loved me and were trying to help me, I also was aware that this person that I had become, who really could not function in any meaningful way, scared them. That they no longer knew how to relate to me. That suddenly I was the embodiment of their darkest fears.
There is a large divide between those of us who have lost a child and those who haven’t. It’s almost like crossing a bridge, then looking back over your shoulder as the bridge explodes. You can see the people on the other side, but you know that there’s no way to get back to them. You can see their mouths move, but you can’t hear a sound. You are left alone, dodging shrapnel and dealing with the fall-out.
The simple truth is that the person that I was before I had and lost Andy no longer exists. The death of a child is a catastrophic event from which you can never fully recover. It changes you in a fundamental way. It alters your perspective on life. It affects how you interact with the outside world. Even now, almost two years later, I continue to be impacted by his death every day – in the “what could have beens” and “what should have beens” that linger in the recesses of my mind.
As the weeks became months and now years, I have realized that grieving is a lifelong process. In my journey so far, I have moved through several of the different stages of grief, and I have allowed myself to recognize and experience each of them. I have come to a place where I accept that, while I don’t like that my son had to leave this world so early, I understand that it is part of the greater plan. I know that Andy lives on in my heart. I have found my “new normal.” I have begun to heal.
But have I gotten over it? Never.
–Audra Butler
May 20th, 2011 | Posted in Family News, News | 15 Comments »
My husband and I conceived our second child just four months after we lost our first child to spinal muscular atrophy.
The decision to try to have a baby so soon after our son Andy’s passing was a difficult one. However, we hated being “childless parents” and felt ready to introduce another life to our family. After weighing all of our options, we conceived the baby naturally, and we prayed that the odds would be in our favor this time. It was assumed that, since there was no question about Andy’s SMA diagnosis, both my husband and I were carriers of the inherited gene that causes the disease, which gave us a one in four chance of having another SMA-affected child.
We had to wait until I was 12 weeks pregnant with our second child before the pre-natal testing for SMA could be done and three additional weeks for the test results. It was an excruciatingly stressful and long wait. As a condition of the pre-natal testing, my husband and I also had to have blood tests to determine our carrier status.
What the blood test does is count the number of the Survivor Motor Neuron 1 or SMN1 genes a person has. Typically, non-carriers have two copies of this gene, one passed from their mother and one from their father. SMA carriers have only one copy of the SMN1 gene, and their other gene is deleted. When two carriers each pass that deletion to their child, the child’s carrier test will show that he/she does not have any copies of the SMN1 gene at all and will confirm the diagnosis of SMA.
So we were surprised to receive the result that, while I definitely was an SMA carrier with one copy of SMN1, my husband appeared to not be a carrier at all or have any type of mutated gene that would cause the disease. His test showed that he had two copies of SMN1. We also learned that the new baby, a girl, was an SMA carrier like me, and would be unaffected by the disease. While we celebrated the health of our daughter Lucy, we were left with many questions. The most pressing being that, if my husband wasn’t a carrier, how did Andy have SMA?
Our geneticist gave us two potential answers. Either my husband WAS NOT a carrier, and the gene he passed to Andy mutated upon conception (called a “de novo” mutation), or he WAS a “hidden” SMA carrier with a genotype that the blood test could not detect. She said that de novo mutations have occurred in a small percentage (approximately 2-3 percent) of the population of people diagnosed with SMA. Also, she explained that there is a subset of approximately 6 percent of carriers that can not be identified by the current blood test.
In order to find out more, our family recently participated in what is called a “Linkage Study.” Blood samples were taken from each of our parents, my husband’s siblings, each of us, and Lucy to determine who passed what gene to whom. Luckily, we had Andy’s cord blood stored as well, so we could get a complete picture of how the SMA-causing deleted gene had traveled through our family to him. Scientists at the University of Pennsylvania conducted the study.
We received the results yesterday, learning that my husband is indeed a carrier of SMA. In his case, he received two copies of the SMN1 gene from one parent, and a deletion of the gene from the other. It is that deletion that both he and I passed on to our son.
So why am I sharing this story with you? Because if we’d had carrier testing before we had children, the test results would have indicated that my husband wasn’t a carrier – that he was “normal.” I would bet that the doctor explaining those results to us would have said that, even though I was a carrier, we had nothing to worry about. AND WE STILL WOULD HAVE UNKNOWINGLY HAD A CHILD WITH SMA.
It is critical to understand that the SMA carrier test, while very important, is not 100 percent accurate. If you received a “normal” result from an SMA carrier test, but it is confirmed that your partner is a carrier, there still is a possibility that you might have a child with SMA. That said, we are recommending that everyone in our family who plans to have children test for their carrier status. And, if any of them are carriers – regardless of their partners’ test results - that they also elect to have pre-natal testing done with any pregnancy.
This piece of knowledge is Andy’s gift to us all.
For more information on SMA carrier or pre-natal testing:
–Audra Butler
May 12th, 2011 | Posted in Family News, News, SMA News | 11 Comments »
I celebrated my first Mother’s Day as an expectant mom on May 11, 2008. My husband Alan and I were in Ireland for a friend’s wedding, and I was six weeks pregnant. We were so excited about our baby-to-be. My husband bought a card for me, but he forgot to pack it. Humble beginnings.
My second Mother’s Day was May 10, 2009. My son Andy had just turned four months old. He had been diagnosed with spinal muscular atrophy in March, and I was trying to deal with the reality that this baby I had prayed for, waited so many years for, and was so thrilled to have, might not be with me for very long.
For my Mother’s Day gift, my husband told me that he would take care of the baby, while I went clothes shopping. He wanted to give me a break from the ever-present stress and worry caused by SMA for one afternoon, but I didn’t want to spend too much time away from Andy. I didn’t want to miss a moment of his life. After an hour or so at the mall and a shopping bag full of purchases, I hurried home to cuddle with my little boy.
That evening, my parents came over for a special dinner and brought even more presents. Friends called to wish me a happy Mother’s Day. I wore a new outfit as I sat on the couch, holding Andy against my chest and feeling his heart beat next to mine. My mom kissed us both, with tears in her eyes. I truly felt surrounded by love and honored to be a mother. Still, I was distinctly aware that it might be the only Mother’s Day I’d have with my son. We made sure to take a lot of pictures to commemorate the day. Andy died less than a month later, leaving us with these precious memories.
May 9, 2010, was my third Mother’s Day. I was seven months pregnant with my daughter Lucy, but I didn’t want to celebrate the day. I remember crying as I looked at the pictures of Andy from the year before. I remember visiting his grave. I remember feeling my daughter kicking and squirming in my ever-growing belly and hoping that her birth would help ease my grief. I don’t remember much else.
Tomorrow marks my fourth Mother’s Day. It’s still bittersweet, and I think it always will be. As much as I love that it’s my first Mother’s Day with Lucy in my arms, I hate that Andy isn’t with us. I would give anything to be able to hug and kiss both of my beautiful children, tomorrow and every day. Instead, I will honor them by embracing the spirit of the day.
In the morning, we will dress up and go out to breakfast. I’ll probably cry at the cards and presents that Lucy and her daddy give me, but I hope they will be happy tears. I’m sure there will be flowers for me. This time, we’re going to my parents’ house for dinner, where Lucy will undoubtedly steal the show, and, once again, we’ll take a lot of pictures. I’ll hug my mom. And, I’ll try to remember that this is the beginning of a lifetime of Mother’s Days with my daughter. That, while I know the future is uncertain, there must be more joy to come.
But, sometime during the day, I will sneak off to visit my son’s little grave. I will tell him how much I love him. And, I’ll thank him for making me a mother.
Happy Mother’s Day to all of the moms who hold their children in their arms and in their hearts.
–Audra Butler
- My mom, Andy and me on Mother’s Day 2009
May 7th, 2011 | Posted in Family News, News | No Comments »
For me, Mother’s Day is very bittersweet. As much as I look forward to celebrating my first Mother’s Day with my daughter, my heart aches that I won’t be able to hug and kiss both of my children on that day. While I will treasure each moment I have with Lucy on Sunday, I also will visit Andy’s grave and remember my beautiful son, who was taken from me by SMA too soon.
For those like me who’ve lost a child or for those who’ve lost a mother, this article may help you heal a bit. Or, it might better explain how to reach out to any bereaved mothers you know. At any rate, I hope it helps with this bittersweet day. –Audra Butler
When Mother’s Day Hurts
By Karla Helbert, MS, LPC, Grief, Loss & Bereavement Topic Expert Contributor
Mother’s Day is observed by many as a joyful day of celebration, a time when hardworking mothers can have a chance to put our feet up, relax, be treated to breakfasts in bed, special lunches or dinners, given special consideration. We might receive gifts lovingly chosen or perhaps handmade by our children and partners. The day may hold special times set aside for visiting with or talking to our mothers, perhaps making up for time we have been apart, busy with our lives. The idea of Mother’s Day in our culture is painted as brightly and sentimentally as any Hallmark commercial.
The truth is though, for many, Mother’s Day can be a painful and difficult day. Women whose children have died at any age, women experiencing infertility, women who have had miscarriages, men, women and children whose mothers have died—for these and others, Mother’s Day can be a day of sadness and loss. In grief, many days typically perceived as happy or joyful times are experienced by the grieving and bereaved as sad and isolating. Bereaved mothers are faced with the experience of seeing other mothers interact with their children, of watching seemingly happy, intact families go about the daily ordinary business of life. People whose mothers have died hear other people speak casually about day-to-day interactions with their mothers, or watch mothers and daughters shopping or lunching happily. We are faced with the barrage of Mother’s Day commercials created to tug at our heart strings (and of course, urge us to open our wallets); and in all those things, so much of the grief we experience is the grief for that which can never be our reality. Each person’s grief, and his or her response to the pain of grief is always highly individual, but no matter what, if you are mother whose child has died, or, if you are a child whose mother has died, Mother’s Day is a sad time.
For women whose children have died, it can almost go without saying that Mother’s Day is deeply painful, and because of that, it should never go without saying. If you know a mother whose child has died, at any age, please acknowledge her motherhood as well as her pain. The greatest gift for a bereaved mother on Mother’s Day can be the simple, but hugely powerful, recognition of her motherhood. Even though our children have died, we are still mothers–to all of our children. The simple act of recognition allows a bereaved mother the validation she so often seeks and sadly, so often finds missing. A hug and a “Happy Mother’s Day,” even if that seems improbable, could mean more than one could imagine. There are many things supportive friends and family members can do to help ease the pain of this difficult day for a grieving mother. Visit her child’s grave, leave a pretty stone, a seashell or other small trinket, and let her know. Talk about her child. Use her child’s name in conversation, no matter how brief. All bereaved parents long to hear other people speak their child’s name after he or she has died. Many non-bereaved people think (wrongly) that if they mention the child, this will somehow “open the wound,” or “remind” us of the loss. You can trust that we are already thinking about our children, that wound is ever-present. Our children are never, ever far from our hearts and minds. One of the greatest fears for a bereaved parent is that no one, except for us, will remember our children. If you have a special memory of her child, send a card with a story of that memory enclosed. It will be a cherished treasure. Even a card simply wishing her a happy and peaceful day is a gesture that is greatly appreciated.
When we are bereaved mothers who are also fortunate enough to have other children who are alive, we continue to miss and to mourn the ones who are not here for our arms to physically enfold. For these mothers, acknowledging their child who has died can be an incredibly meaningful gift. One child does not replace another. We celebrate in the joyful presence of our living children and deeply mourn the absence of the ones who are not here sharing our daily lives. Remembering that we are mothers to all our children is such a special act.
For women who have suffered early miscarriage, women experiencing infertility problems, or for birth mothers whose birth children have been placed in adoptive homes, Mother’s Day can bring a silent and isolating grief. Much of society does not recognize the loss that can be inherent in these women’s circumstances. Simply letting her know that you are thinking of her on this day can be welcome gesture. A phone call to check in and a simple, “I was thinking of you today and wondering if you were doing ok.” This can allow her to talk about her feelings if she chooses to do so.
For any person whose mother has died, Mother’s Day can be a painful and sad time. A tradition of the not so long ago past called for corsages to be worn on Mother’s Day. A red corsage meant that person’s mother was still alive. A white flower meant their mother had died. Those who wore white flowers were most likely given extra hugs or an extra squeeze of the hand. The openly worn symbol of the flower allowed others to feel freer to talk about the woman who had died, to feel invited to share remembrances or condolences. In our society where mourning is no longer a widespread or open practice (though I am working hard, along with likeminded friends and colleagues to change that), other community members may not always feel they can openly discuss “the departed.” If you know someone whose mother has died, or if you knew his or her mother, perhaps sending a white flower in memory of their mother may be a lovely gesture. You might also consider sending a card or letter, or making a phone call specifically to share memories of that person’s mother. Taking a moment to let her child know how much she meant to you, can be very comforting. If you know a young child whose mother has died, acknowledge that child’s pain and let that child know that you are a safe person to talk to. Again, sharing memories of the child’s mother can let that child know how much his or her mom meant to others.
For all of us, childless mothers and motherless children alike, planning a way to remember our deeply cherished loved ones is very important. Make a plan that will honor your mother’s life, your child’s life. Acknowledge their presence in your life, your heart and your mind. Honor your love for them, as well as the pain you feel due to their absence. Create new traditions for this day, such as lighting a candle or saying a prayer, or wearing a flower. You might wish to donate to a charity in your child’s or your mother’s name, plan a visit to the burial site, plant a tree, create a work of art or start a scrapbook. Read your mom’s favorite book, watch her favorite movies, listen to songs she loved. Name a star after your child, make his or her favorite food, plan a balloon release with notes to him or her written on the balloons. No matter what, you are always a mother. And no matter what, your mother is always your mother. We can remember them with love.
I vividly recall the first Mother’s Day after my son died. It was a very sad, painful day. The beauty of spring itself seemed to exist solely to mock my childless arms. On that day, my husband and I planted a tree in our backyard. I had originally planned to plant a tree for our son so that he could watch the tree grow as he grew. Instead, we planted the tree in his memory. The choosing of the tree, bringing it home, digging the hole, and the placement of the tree itself, were all acts that meant more than the simple planting of a tree. The act was elevated to ritual status and was very healing and comforting. I placed special stones around the tree, hung wind chimes and placed special ornaments in and around the tree. Caring for the tree has become a way of demonstrating our on-going love for him. Weeding, decorating the area, watering and fertilizing the tree have allowed for that loving memorial to continue. The tree is visible in our back yard from every window that looks out of the back of our house; kitchen, living room, bathroom, hallway, office. While nothing takes away the pain of missing my child, the ritual we created together to honor his memory made that first Mother’s Day more bearable, and is a constant reminder of our love for him. Seeing the tree bloom each spring and watching it grow a little taller and stronger with each passing year underscore the tree’s symbolic representation of our ever-present love for him and his presence in our family.
If you anticipate that Mother’s Day will be difficult for you, whatever your personal circumstances, spend some time making a plan for honoring, remembering and memorializing. Think about doing something to care for yourself as well. Self-care gifts such as massage, manicure, pedicure, can all help to alleviate stress. Ask for what you need. Taking time to be alone, to journal, to take a walk, spend time in nature, or simply to rest can be very helpful. If you need support, ask for it. If you worry that no one will do anything for you on Mother’s Day, be pro-active and tell your loved ones what you would like to do to observe the day. Plan a lunch or dinner with supportive friends or family. Give yourself permission to do what you need to do to take care of yourself.
May 6th, 2011 | Posted in Family News, News | No Comments »
I’ve written several posts on this website about the grieving process, which began with our son Andy’s SMA diagnosis. But, I don’t want you to think that our life was devoid of joy during those weeks between the day we learned about SMA and the day we lost our son to it. Certainly, we were devastated by the severity and fast progression of the disease – but we were always thrilled with our amazing boy. For 20 weeks, 5 hours and 13 minutes, he filled our lives with love, wonder, and laughter.
SMA was a part of Andy, but it will never define him. He was funny, smart, cuddly, silly, patient and, more than anything else, brave. He smiled every day, even when we couldn’t. His body was paralyzed, but his eyes danced.
We didn’t realize it at the time, but we were holding an angel in our arms. And, that angel made sure we learned these lessons:
1. Don’t underestimate little kids. Even at less than five month old, they are smarter than you think (and often smarter than you are).
2. Try to find a reason to smile every day, especially on the bad ones.
3. Learn to live in the moment and not dwell on the past or project into the future. (Clearly, I’m still struggling with this one.)
4. Understand that sometimes the smallest gesture can make the biggest impact.
5. Take the time to cuddle whenever you can.
6. Know that asking for help isn’t a sign of weakness – it’s an act of trust.
7. Say thank you and mean it.
8. Cherish every moment you have with your family and friends. And, show them how much you love them anytime you can.
9. Allow yourself to have moments of silliness.
10. Love yourself, just as you are.
11. Accept that you can’t control the curveballs that are thrown at you in this life…but you can control how you act in response to them.
12. Don’t be afraid of the things you don’t understand, but take the time to learn about them.
13. Follow your instincts and trust in yourself.
14. Make sure your priorities are in order. It’s trite but true – your gravestone won’t ever say “beloved employee.”
15. Believe in angels.
Thank you, Andy, for picking us to be your family and for continuing to teach us how to live. We love you.
–Audra Butler
April 30th, 2011 | Posted in Family News, News | 2 Comments »
Tomorrow is Easter Sunday. I’m not very religious, but this holiday holds a special meaning for me. Easter was one of the few holidays that my son Andy had the chance to celebrate.
Andy was just three months old in April 2009, and he was in the hospital recuperating from a surgical procedure to place a feeding tube in his stomach. By the weekend, he was recovering a little slower than anticipated, and we were still a little unsure of the new feeding procedures. So, my husband and I opted to spend Easter Sunday at the hospital with our trusted nurses and to make the best of the circumstances. Regardless of where we were, we would make Andy’s first Easter as magical for him as we could.
On Easter morning, I carefully negotiated my way around his IV, his new g-tube, and all of the wires placed on his body to undress him, easing him out of his hospital gown and replacing it with a little blue and white striped onesie that had “My First Easter” written on it. I placed a tiny hat with rabbit ears on his head and slippers with smiling rabbit faces on his feet. Andy looked so cute – and so indignant about the hat – that for a moment I didn’t even notice all of the hospital monitors and equipment that surrounded him.
The Easter Bunny, who was a hospital volunteer in full costume, hopped into his room with a basket of toys in hand, all for Andy. While he wasn’t so receptive about the tall furry stranger, he did appreciate the toys. Then, my parents and my husband’s parents came to visit, bringing more goodies for Andy and more support for us.
Andy watched us from his bed, beaming as everyone vied for his attention. While my father was playing with him, Andy even lifted his arm up slightly to hand his Grandpa a toy. In that moment, I understood how hard that he was working to please us. Even the smallest movement for him took incredible effort, and he was willing to exhaust himself to make us proud. I realized that, while the toys, clothes and the Easter Bunny were great, what he really wanted was our hugs, kisses, caresses, and smiles. And, so we spent the day gathered around him, showering him with love.
I tried to take as many pictures and videos as possible, so I would never forget a detail about this special day. Andy’s SMA was progressing fast, and I was afraid that he would not have another holiday, let alone another Easter, with us. The next day, Andy was discharged from the hospital. Less than two months later, he was gone.
Andy taught me many lessons, but this one, perhaps, was the most powerful. You see, Easter isn’t about the bunnies or the baskets of goodies. It’s about hope, sacrifice, and redemption. It’s about miracles. In the most literal sense, it’s the celebration of the belief that there is life after death. While I’m not much of a church-goer, I share this belief, because for a short time, I had the chance to hold an angel in my arms. I experienced the miracle of giving birth to a beautiful baby boy and then had to make the seemingly impossible sacrifice of letting him go. And, I know beyond a shadow of a doubt, that he lives on in heaven, just as much as his memory lives on in my heart.
Now, it’s my responsibility to pass this lesson on to Andy’s little sister, Lucy, who celebrates her first Easter tomorrow. Like her brother before her, I’ll dress her up in Easter finery and take too many pictures. She’ll have an Easter basket full of toys and hidden eggs to find. For now, that will be enough. But, when she’s older, I hope she understands just how precious and fragile life really is. I hope she knows that she’s a miracle to us, sent by angels. And, I hope she appreciates the love that surrounds her – from heaven to earth and back again.
Happy Easter from our family to yours,
Audra Butler
Andy's Easter slippers
April 23rd, 2011 | Posted in Family News, News | 5 Comments »
A year ago today, my friend Laurie J. called me to tell me that her daughter Abby lost her battle with SMA. Having been through the same horror the previous June, my heart broke for her and her husband. I tried to be there for them as much as I could – bringing food, offering comfort and giving advice. But nothing I could do for them would dull the pain. I have been in their shoes, but I couldn’t walk in their place. I realized that grief is a lonely road, winding and turning in different ways through the darkness, and each of us must find our own way out.
It’s been almost two years since Andy died, and I’m still negotiating my way through the grief. As hard as I have been trying to “live” my life lately and get healthy, I still get sidelined by depression, guilt and doubt.
The other day, I took Andy’s little sister, Lucy, to the park for the first time. As I pushed her on the baby swing, she laughed so joyously and looked at me with pure delight. I laughed with her, forgetting about anything else but that moment we shared. Forgetting for once about the grief that I carry with me. I took a picture of Lucy on the swing and sent it to my husband, parents and friends. My husband texted back that he just added it to the wallpaper on his phone, replacing a picture of Andy, and he had conflicting feelings. He wanted to move on, but…
And that was when it hit me like a ton of bricks. In that moment, I had forgotten about Andy. I didn’t think about how he would have loved to swing or to enjoy the fresh morning air, as I typically would. I didn’t think about the two year old boy he should have been, playing at the park with his sister. I didn’t think at all. For that short time, I let go of the sadness and embraced the happiness around me. Perhaps for the first time I was fully present for Lucy. With this realization, the guilt that rushed over me was overwhelming.
Back home from the park, I sat on the couch and looked at Andy’s picture, hanging prominently on our living room wall. I began to wonder, what does it mean to move on after a child’s death? When will I be able to separate thoughts of him from the feelings of despair that weigh so heavily upon me? How do you balance celebrating the life of one child, while preserving the legacy of the other? By moving forward, am I leaving Andy behind? By holding on to the past, am I missing Lucy’s present?
Since Andy earned his angel’s wings, our lives have changed dramatically. Both my husband and I found new jobs, and we’ve made new friends. We’ve been to weddings, christenings, and funerals. We’ve celebrated holidays and birthdays, especially the birth of our daughter. We’ve recently moved into a new house and are creating new memories for our family. And, with each new experience, there is a black hole of regret that Andy is no longer here. That, while he always will be a part of our family, he isn’t a part of our future. That we couldn’t save him from SMA.
The reality is, that during the 22 months since Andy was last in our arms, the focus of our daily lives has slowly shifted. So much so that a huge chasm now lies between who we were when he was alive and who we have become.
Perhaps I will one day find this seemingly elusive balance between heaven and earth…between the past and the present. Until then, I know that I need to try to let go of the guilt and embrace the life we have, as bittersweet as it is. I have to learn to accept that it is okay if Andy is not always in the forefront of my mind, because he and I both know that he is forever in my heart. At peace in heaven, he doesn’t need me anymore, but his sister does, and I need to be here for her.
So, today, I looked toward heaven said a special prayer for Abby on her first angel day. I asked Andy to watch over us and to help us continue to heal. And, then I took Lucy a birthday party, and we celebrated life.
– Audra Butler
Lucy at the park
April 17th, 2011 | Posted in Family News, News | 5 Comments »
I am an emotional eater. So, it’s no surprise that I gained a lot of weight as we dealt with our son Andy’s diagnosis with SMA and his passing in 2009. Then, I gained even more when I got pregnant with his little sister Lucy (who is SMA-free)! Now, it’s time that I get back in shape. I’m changing my lifestyle to embrace my health, which I know that Andy would appreciate. (Special thanks to Deb Young for the inspiration!)
I’m challenging all of my friends – especially other SMA mamas – to join me on this quest. Let’s track our weight loss from April 8 to August 1, 2011, and then make a donation to Families of Spinal Muscular Atrophy (FSMA) in Andy’s memory. You can make a secure online donation at http://www.fsma.org/GiftReg/andysarmy.
I’ll also post diet tips and recipes on the Andy’s Army Facebook page, so if you are on Facebook be sure to “like” it.
The health of our children is so important – it’s time that we get healthy too!
– Audra Butler
April 8th, 2011 | Posted in Family News, News, SMA News | 1 Comment »
Recently, a friend of mine from high school, Deb Shoman Young, contacted me about a fundraising idea. After having two beautiful, healthy baby girls, she is ready to get back in shape…and she’d like to get sponsors for her weight loss effort to motivate her along the way. She plans to donate all of the money she raises to Families of Spinal Muscular Atrophy, in memory of Andy.
What’s amazing about this is that Deb and I haven’t seen each other since we graduated from high school almost 20 years ago. We reconnected in 2009 through Facebook. At that time, I was posting daily updates about Andy, chronicling the good days at home, the scary days in the hospital, and, ultimately, his passing. Deb would e-mail me, telling me how strong I was when I felt so weak and how I had inspired her. She told me how Andy had touched her heart and how she still cries for his loss and for all of the families dealing with this disease. More than that, she has turned her words into action.
Now, it’s my turn to be inspired. Please help me support my friend Deb by donating at this link:
http://www.fsma.org/GiftReg/dsp_DonationPage.cfm?AppealCode=REGOTHE11&idUser=8626
Thank you, Deb, for being such an amazing friend and member of Andy’s Army!!
Audra Butler
March 4th, 2011 | Posted in News, SMA News | 1 Comment »
Bill Strong just wrote a post called “Getting Out With Gwendolyn…At Some Point, We Just Started Living” (http://www.gwendolynstrong.com/2011/02/getting-out-with-gwendolyn-at-some-point-we-just-started-living.html). If you don’t know who Bill Strong is, you should. He’s the dad of an amazing little girl named Gwendolyn, who happens to have Type I SMA – the same as my son Andy. Bill and his lovely wife Victoria started the Gwendolyn Strong Foundation to educate others about SMA, to fundraise for a cure, and to offer support to other families dealing with a heart-breaking diagnosis. But, I digress…
Bill’s post really stuck with me. You see, on the outside, I’ve been a vocal advocate for SMA awareness. I’ve told Andy’s story to whomever would listen. I do what I can to affect change. But, at home, after the event of the day is done, I cry. Because it hurts to look at his pictures and to relive the memories of his battle with SMA. Because I hate that he’s not here with me. Because the fear that was born in me at the first realization that something was terribly wrong with our sweet baby boy remains. My life stopped on the day that Andy was diagnosed, and I really haven’t started living again.
When Andy was alive, he and I stayed cocooned inside our house, when we weren’t at the doctor’s office or hospital. I was afraid of exposing him to germs, because he was so medically fragile that a common cold could have ended his life. I was afraid that he would have an “episode” while we were out, and I wouldn’t have the equipment I would need to keep him safe. I was afraid that any given moment would be his last. Every second of every minute of every hour of every day from his diagnosis to his passing, I was afraid.
Andy’s been gone now for 19 months, four times longer than we had him with us. And, I have to admit that I’m still afraid. It’s different now. I’m afraid of breaking down in tears at the grocery store, the doctor’s office, the office, etc. I’m afraid of not having the right thing to say when someone asks me if I have kids. I’m afraid of pitying looks from people who know my story and of being blind-sided by those who don’t. Sometimes, I’m still afraid to leave the house.
And, when my daughter Lucy was born this summer, my fears intensified. I know that she doesn’t have SMA, but I’m so scared that the other shoe will drop, as it did before. I still check her every night to make sure she isn’t blue. My heart stops when she sputters or coughs. When she was just four months old, we had to rush her to the hospital with a fever of 105 – the same hospital at which Andy was first admitted to the pediatric intensive care one year earlier. I was so afraid that we would lose her too. But, we didn’t. She recovered quickly and is fine.
And, now I’m really tired of being afraid. I’m ready to recover too. I’m ready to break free from the shroud of sadness and fear that has been hanging over us for so long. I’m ready to live again, because I know that’s what Andy would want for us. And, it’s what I owe him and his sister.
A few days before Andy’s funeral, I woke up with a song in my head. It was Lee Ann Womack’s “I Hope You Dance.” Since I am not a big fan of country music, it surprised me that it came to mind. So, I found it online and listened carefully to it. At first, I thought that it perhaps was a message from my boy, telling me that he was dancing freely in heaven.
But, now, I think instead he was telling me that he wanted us to live for him, fully and completely. I think he wanted us to let go of the anger and fear…to unwrap that shroud surrounding us. To willingly take chances, regardless of the outcome. To know that, while we will ache for him forever, we have to keep moving forward and continue to fight the darkness. To be aware of the gift of each unfettered breath and of the other little wonders that fill our days. Maybe more than all of that, I think he didn’t want us to lose faith.
Still, I don’t think I’ll ever get over the loss of my son. I know that there always will be an Andy-shaped hole in my heart. But, it’s time to let go of the demons. While I know I’ll still have dark days, it’s time to open the windows and let in the light. It’s time to regain control over my life and start living again. It’s time to dance.
–Audra Butler
———————————————————————————————————————–
I Hope You Dance
By Lee Ann Womack
I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty-handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you’ll give faith a fighting chance
And when you get the choice to sit it out or dance
I hope you dance
I hope you dance
I hope you never fear those mountains in the distance
Never settle for the path of least resistance
Living might mean taking chances but they’re worth taking
Lovin’ might be a mistake but it’s worth making
Don’t let some hell-bent heart leave you bitter
When you come close to selling out reconsider
Give the heavens above more than just a passing glance
And when you get the choice to sit it out or dance
I hope you dance
(Time is a wheel in constant motion always)
I hope you dance
(Rolling us along)
I hope you dance
(Tell me who wants to look back on their years and wonder)
I hope you dance
(Where those years have gone)
February 17th, 2011 | Posted in Family News, News | 6 Comments »
This poem was published in the December 2010 issue of FSMA’s Directions magazine. It perfectly captures how we hope Andy is celebrating his second birthday in heaven today – he always loved a party!
A Birthday Celebration in Heaven
I heard you crying yesterday
And felt your heart-sent love
So I’m sending you this message now,
From Heaven up above
You’re wondering if I’ll celebrate my birthday
(way up here)
I know you’re missing me today
I feel your essence near
God planned a special day for me
He told me with a wink
He ordered me a special cake
(It’s Angel food, I think)
I’m getting lots of hugs from God
He’s really good at that
And every time that I walk by
He gives my head a pat
Balloons will fill the streets for me
They float up through the clouds
And we have lots of clowns up here
That make us laugh out loud
There is a birthday carousel
Jeweled horses ride the wind
With music playing oh so sweet…
The magic never ends
I’ve made so many friends, you see
We laugh and play and sing
We ride our bikes and play jump rope
And sleep in Angel’s wings
We’ll have our cake and ice cream
And open gifts, surprise!
But we don’t blow out our candles here
Instead, they light the skies
Happy birthday, Andy! We will be sending you some special balloons today – and hoping they fill the streets of heaven. We love and miss you so much.
http://www.onetruemedia.com/otm_site/view_shared?p=d1a31abc3779a201a319f0&skin_id=701&utm_source=otm&utm_medium=email
Love,
Mommy, Daddy and Lucy
January 8th, 2011 | Posted in Family News, News | 2 Comments »
It’s the early morning of Christmas Eve. I should be enjoying another hour or so of sleep before my daughter Lucy wakes up, but I can’t. I should be excited for Christmas, but I’m not. I just don’t know how to celebrate this holiday anymore.
I used to adore Christmas. When I was little, my dad and I would decorate the tree on the day after Thanksgiving. My mom would hang the stockings and the wreaths. I counted down the days each year until December 25, and to be honest, I also counted the presents for me under the tree. I loved my family’s silly traditions – my parents and I always had Chinese for dinner on Christmas Eve. And, after dinner, each of us would open just one present – almost like a teaser – before I’d leave Santa his milk and cookies and go to bed. When I woke early on Christmas morning, I’d always be shocked to discover that Santa had indeed stopped by and filled the living room with presents. My mother made me empty my stocking first, and there always was a toothbrush, an orange, and a banana in it. I remember feeling so lucky and so loved by my family. It was my favorite time of year.
Even before my son Andy was born, I dreamed of his first Christmas. I couldn’t wait to hang a “Baby’s First Christmas” ornament on the tree and see him toddle around beneath it. He was born in January 2009, so I just knew that by Christmas he’d be walking. I pictured helping him open his presents and laughing as he played with the boxes and wrapping paper. Again, I found myself counting the days to Christmas.
And, then in March 2009, he was diagnosed with SMA. He died in June. The countdown stopped. My dreams were shattered. His first Christmas never would occur.
It’s been 18 months since Andy returned to heaven, and I haven’t been able to put the pieces back together. This year, my husband and I once again decorated the tree, but we cried as we hung the ornaments that Andy never saw. There is a stocking missing on the mantel. There is a hole in our hearts. The one thing I want for Christmas – my son in my arms – is the one thing that I’ll never have.
In July 2010, we welcomed Andy’s little sister, Lucy, into the world. A healthy baby girl, she is a precious gift from heaven. Perhaps Christmas for me really came this summer. But, as perfect as she is, Lucy doesn’t replace her brother, and the pain doesn’t go away.
Still, I’m trying my hardest to make Lucy’s first Christmas special. I’m doing for her all the things I planned so long ago for her brother. I’m trying to recapture the magic that I once knew. The ornaments commemorating her first Christmas are on the tree, and her picture with Santa has been taken. Her presents are wrapped and waiting for her to open them – with a little help from Mom and Dad. When I see her smile on Christmas morning, I hope that my heart will heal a little more.
And, beginning this year, we will create new traditions for our little family. We will have to find a way to celebrate the season, while still recognizing that one of us isn’t here. We will focus on the real meaning of Christmas – faith, hope and love. I will continue to search for peace. But, I know in my heart that, for us, the holidays will be forever bittersweet.
While others may not understand, we will include Andy’s name on our Christmas card. There always will be a space for his stocking that never was. The dragonfly and angel ornaments will hang on our tree in his memory where his “Baby’s First Christmas” ornaments should be. His little grave will be decorated with Christmas flowers, just as our house is. And, I know that he will be with us, and he’ll help us find the Christmas spirit again.
–Audra Perry Butler
December 24th, 2010 | Posted in Family News, News | 6 Comments »
Tomorrow we celebrate Thanksgiving, and I’m thinking about all for which I am thankful. On the surface, there is so much – I have a good job that allows me to work from home while I take care of our daughter, Lucy. We have enough to eat, clothes on our backs, and a roof over our heads. We have a supportive family and a wonderful network of friends. Although we are not without our problems, I know that we have more than many others. But, deep within my broken heart, I still struggle to give thanks for a life forever changed by spinal muscular atrophy.
Last year I couldn’t face this – or any – holiday. Our son, Andy, passed away as a result of SMA in June 2009, just four days before his five-month birthday. By November, he should have been eating turkey with us as a ten-month old on his first Thanksgiving. Instead, we visited his grave that Thursday morning, hoping that he was celebrating for us in heaven, because we couldn’t find it in ourselves to celebrate here without him.
We left town in a vain attempt to escape the holiday, but it found us anyway. As we ate our dinner of turkey and ham in a little dive of a diner near the beach in Sarasota, we discovered that all we wanted to talk about was Andy. We remembered his sweet smile, his quiet laugh, and how his eyes would light up when he saw us. How he loved to be tickled. How happy he was when he played with his toys and watched his Baby Einstein videos. How incredibly smart and perceptive he was for one so very young. How, even in the face of adversity and loss, we were so lucky to have had him, if only for 20 weeks. How he would have wanted us to be strong like him and to embrace the holidays. And, so we found ourselves giving thanks.
For Andy.
But I couldn’t be thankful for anything else. As much as I knew Andy would want me to be, I wasn’t as strong as he was. The pain of losing him was too overwhelming and raw. I felt robbed of the life that I dreamed of for our son and for our family. I couldn’t bear to think of all of the holidays that he would never know – the life experiences that were stolen from him by SMA. I wasn’t sure how I would ever be able to face another holiday season without him. Yet, our lives were already moving forward, whether I was ready or not.
By that time, I knew that I was pregnant again, and I was terrified that SMA would take this child from us too. I was furious that this disease had so much power over us and that I was helpless to stop it. After the holidays were over, we received the long-awaited news that Andy’s little sister would be born disease-free. And, I finally let go of my selfish fears and rediscovered what it meant to be truly thankful.
I thank God every day for blessing us with two amazing children – one who watches over us from heaven, and one who is here, right now, in my arms. And, I give thanks for the little things – that our daughter, Lucy, can kick off her socks, sit in her chair, and reach out for me. That she gets a fair shot at life.
While I still have dark days when it’s hard to face the world, I will never forget the lessons that Andy taught me. His little fingerprints are all over our lives. So, I strive each day to live as he did – with courage, laughter and love. In that spirit, I will wipe away the tears and begin the Thanksgiving preparations, knowing that’s what Andy would want. This year, I will celebrate the holidays, however bittersweet they may be. I will make the best memories I can for Lucy. And, I hope to make Andy proud.
–Audra Butler
November 24th, 2010 | Posted in Family News, News | 3 Comments »
It’s been more than 15 months since Andy passed away due to aspiration pneumonia caused by spinal muscular atrophy (SMA). On most days, I feel like I’m getting better at coping with the life he left behind. Thanks in large part to the birth of Andy’s little sister Lucy, I’m crying less and smiling more. I’m more successfully juggling my day-to-day responsibilities. I’m trying my hardest to be a good wife, mother, daughter and friend.
But, right when I start to feel like I might be healing, I hear a song I used to sing to him, see a certain one of his toys, notice a date on the calendar, or smell a familiar scent around the house…and I’m transported again to that horrible hospital room, reliving the day that I lost him. Thinking about the times he choked and turned blue. Thinking about the helplessness I felt because I couldn’t save him from this disease. Thinking about his lifeless body in my arms. Thinking about the horror of having to bury my child. Sucker-punched and bent over in pain, I suddenly can’t stop the tears.
It’s the little things that get me every time.
So I sit in his room, rocking in the same chair in which I soothed him to sleep, looking at his pictures, wrapping his blanket around me, and remembering. Wondering if the pain will ever lessen. Wondering how often my heart can break. Wondering if I’ll ever be whole again and if Lucy will suffer because she never will have all of me. I’m just too broken.
I try to focus on the little things. The way that Lucy kicks and pulls. How her chest expands when she breathes. How fast and efficiently she can drink a bottle. The first time she lifted her head when she was on her stomach. How loudly she cries. The way that she can sit in her Bumbo chair, unassisted. How, at just 9 weeks, she’s trying to roll over. The way she soothes herself with one hand in her mouth and the other in her hair. These are the things that most people with a new baby take for granted. But, SMA changed that for me. These are the things I watch for, the things that keep me going…little by little, day by day.
SMA didn’t just take Andy from us. It redefined our lives. It continues to impact us every day. And, because Lucy is carrier of the mutated gene that causes the disease, it will follow us into the future.
To say that I hate SMA is a broad understatement. I hate that I will never have a picture of my entire family. I hate that Lucy will only know her brother from pictures and stories. I hate that I will be continually blindsided by grief that never really fades. But, I don’t want to be consumed by hate.
So, once again, I turn to the little things. I vote online in contests that raise awareness for SMA and funds for its cure. I attend SMA-related events and connect with other families affected by the disease. I speak to groups about how the disease impacted us and how critical carrier testing is, and, more importantly, I tell Lucy how brave her brother was and how we have to continue his fight. I do what I can to make a difference.
But, I can’t stop his favorite song from coming on the radio. I can’t sidestep all of the little landmines that I encounter each day. Despite the pain, I can’t make the memories go away, because they are all I have left of him. And, no matter how hard I wish otherwise, I can’t change that he’s gone.
–Audra Butler
September 18th, 2010 | Posted in Family News, News | 5 Comments »
Today, I took our daughter Lucy to her two-month “well baby” check-up at the pediatrician. She was weighed and measured, her milestones were checked, and several vaccines were administered. We laughed as she showed off her head and neck control – our doctor even commented on how strong she was at such an early age. So, I couldn’t help remembering our son Andy’s two-month check-up and how incredibly – and painfully – different the experience was.
Andy’s two-month visit to the pediatrician occurred just after he was released from the pediatric intensive care unit for the first time. He had been admitted with symptoms including low muscle tone and respiratory distress. He left the hospital with the working diagnosis of Type I Spinal Muscular Atrophy (SMA), which was later confirmed. Andy was completely floppy. He had severe reflux due to the weakness of his esophageal muscle and was prescribed more than one medication for it. He was so pale due to poor circulation. His chest was underdeveloped and bell-shaped. He used his abdominal muscles to breathe, causing his tummy to “see-saw” with every inhale and exhale.
My husband and I were in tears as we talked to our pediatrician about how uncertain Andy’s future suddenly was. We discussed what limited options we had to keep him as comfortable and as healthy as possible. We arranged an order for a machine to monitor his heart and respiratory rates at home. We talked about what Hospice’s role would be in our son’s care. And then, just as the appointment was ending, Andy choked on an oral vaccine because his swallow already was almost gone, which we didn’t realize. After the visit, we rushed home, and I spent at least an hour suctioning fluid out of his nose and throat with a horrible, hospital-strength vacuum as Andy and I both cried.
Instead of celebrating the milestones that he achieved over the next several weeks, my husband and I were forced to watch Andy weaken and decline because of the severity and progressive nature of the disease. Despite our best efforts to proactively treat his symptoms, SMA has no cure and could not be stopped. Andy passed away just four days shy of his five-month birthday, after a very brave fight.
Because of SMA, Andy’s little sister, Lucy, who was born 13 months after he died, will never get the chance to hug her big brother, but she always will know how special he is. Because of him, we know that we are carriers of the mutated gene that causes this devastating disease. Because of him, we asked for pre-natal SMA testing when we discovered I was pregnant again. Because of him, we know that, while she also is an SMA carrier, Lucy is completely healthy and disease-free. Because of him, we cherish Lucy’s every movement and rejoice in each milestone. We take nothing for granted.
Andy and Lucy
This is SMA. It took our baby boy from us, and we want to eradicate it. Through this website, we strive to raise awareness. Through partnerships with non-profit organizations and other SMA-affected families, we work to raise money for a cure. The Gwendolyn Strong Foundation is one of these organizations, and they currently are in a voting contest for $20K. If they win, the money will go towards fighting SMA.
Here’s how you can help them get there:
PLEASE VOTE: It’s really this simple –>
- You can vote once EVERY DAY from now until September 29th at 5 PM EDT
- Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
- That’s it! It’s really that simple
- Don’t forget to add your name to the DailyVoteReminder.com list so you don’t miss a $20K vote.
- And…don’t stop there — SHARE!
Please remember Andy’s story and vote daily. Help us prevent this disease from taking another innocent life.
Thank you,
Audra Butler
September 16th, 2010 | Posted in News, SMA News | 3 Comments »
UPDATE: With approximately 70 walkers and donors, Andy’s Army surpassed $2,300 in contributions to the FSMA Greater Florida Chapter’s Second Annual Walk-n-Roll, making our team the top fundraiser! Overall, the event raised more than $23,000 to fight SMA, and we couldn’t have achieved this without your support!!!
On Saturday, October 23, 2010, Andy’s Army will walk together at the FSMA Greater Florida Chapter’s Second Annual Walk-n-Roll in memory of Andy Butler and in support of a cure for Spinal Muscular Atrophy (SMA). Our goal is for our team to exceed 50 members.
If you can’t make it there to walk with us, you can donate to support our cause through this secure website: http://www.fsma.org/LWC/AndysArmy
The sponsored walk-a-thon will take place at Ft. Desoto Park (Shelter 14, 3500 Pinellas Bayway South, Tierra Verde, FL 33715-2528) from 9:00 a.m. to 1:00 p.m.
While Andy’s battle with SMA ended when he was just 20 weeks old, we refuse to let SMA win this war. Through the walk-a-thon and other fundraisers, we are continuing Andy’s fight against this devastating disease, which is the number one genetic killer of infants.
Thank you for being part of our fight against SMA! We look forward to marching beside you in October.
–The Butler Family
August 28th, 2010 | Posted in News, SMA News | No Comments »
This poem was written in Andy’s memory by his Nana, based on the well-known dragonfly story. A beautiful poem for a beautiful boy, who always sends us dragonflies to let us know he’s near.
A bug beneath a pond one day
Saw his friends go far away
Up along a stem they climbed
Leaving everyone behind
Then one day up that stem he climbed
Above the water he did find
A world of colour and of light
That sparkled in the bright sunlight
He fell asleep, then woke to find
His body changed, but not his mind
Wings had grown and he could fly
Back and forth beneath the sky
I must go back and tell my friends
This wondrous world waits here for them
But wings and water don’t combine
So he would have to bide his time
He flew around this heavenly place
Then in the pond he saw his face
Changed from who he used to be
His friends won’t know that it is he
So he will wait until the day
Up the stem they make their way
And they can play and fly so free
Together for eternity
-Roisin
This dragonfly visited Andy's Auntie Eimear and Uncle Ed on his first birthday
August 15th, 2010 | Posted in Family News, News | No Comments »
We have to share this amazingly beautiful poem, written by our friend Lynn Agnew, in honor of the birth of our daughter, Lucy Catherine, and her big brother, Andy.
A patient wait and fluttered wings
A promise of such blessed things
A welcome by a brother’s glance
A whirling light, a joy-filled dance
Faces aglow as she enters the world
Their beautiful, light-filled baby girl
For He had long since planned this meeting
This love soaked, awesome, gossamer greeting
A flicker, a presence, a quiet observing
A blessing to a family so richly deserving
A tranquil entrance as dancing wings twirl
The most delicate chariot for sweet baby girl
Lucy Catherine, born on July 15, 2010
July 31st, 2010 | Posted in Family News, News | 1 Comment »
July was a wonderful month for our family and for our cause!
Our daughter, Lucy Catherine, was born on July 15, 2010, at 8:08 AM. She weighed 10 pounds, 5 ounces at birth and measured 21.5 inches. We named her Lucy because it means “light,” and she truly is the light at the end of a very dark tunnel. A strong and healthy baby girl, she is SMA-free! Already, Lucy has brought so much happiness back to us.
Also this month, Sophia’s Cure, a non-profit organization founded by the inspiring Gaynor family, won a $250,000 grant in the online Pepsi Refresh Everything contest. The contest could not have been won without the daily voting and promoting done by the SMA community, including members of Andy’s Army. The grant will go directly to funding research for a cure for SMA.
As Sophia’s daddy says, “Miracles do Happen, Let’s Make One!” Thank you for supporting our family and for helping us make our dreams a reality!
– The Butler Family
July 24th, 2010 | Posted in News, SMA News | 1 Comment »
Your votes continue to make a difference! The Greater Florida Chapter of Families of SMA received a $2,250 check on Saturday, July 10, from the Treasure Tavern in Orlando for winning their Grand Opening online voting contest. Thank you to our friends, family and supporters for voting in this contest during the past month! And, please check out the Treasure Tavern at http://www.treasuretavern.com/.
July 11th, 2010 | Posted in News, SMA News | 1 Comment »
Thank you all for voting for Andy’s Army in the Sweatshirt Blanket “Spread Your Warmth” campaign. After a tight competition, we are thrilled to let you know that both Andy’s Army and CranioKids will be awarded prizes!!! Two great causes will benefit because you cared!!
We will receive 18 child-sized blankets, personalized with the Andy’s Army logo, which we will donate to Families of SMA for newly diagnosed Type 1 families.
You can learn more about CranioKids at http://www.craniokids.org/.
Thank you for spreading the warmth with us!!
June 8th, 2010 | Posted in News, SMA News | No Comments »
My precious baby boy,
One year ago today on June 4, 2009, at 5:05 PM, you look your last breath. You left this world surrounded by love, just as you came into it a mere 20 weeks, 5 hours and 13 minutes prior.
Before you went to sleep for the last time, you looked at your daddy and me, and you smiled, just like you did before bedtime each night. Your big blue eyes were so wise and so calm for one so very young. Ours were filled with tears and panic as we realized that your journey with us was nearing its end. That, even as we desperately turned up the machines attached to your little body, no amount of oxygen, suction, drugs or breathing support could keep you with us. That these were our final, precious moments with you in our arms. That you had achieved your angelic mission here on earth.
As you peacefully slept, your daddy and I stroked your soft skin and kissed your face, your hands, your feet. We told you how much we loved you and how you had changed our lives. Then, we whispered in your ear that you didn’t need to worry about us – we would be okay – and that you could go. And so you did. My hand rested on your small chest as you exhaled deeply for one last time, and I said “It’s over” as I felt your spirit leave this world.
At that moment, we knew that you finally were free from the pain of spinal muscular atrophy. Free from the body that failed you. Free to rejoin the angels in heaven. Free to run and dance as you never before could.
We cried with relief that your suffering had ended and with despair that you were gone. I held you against my chest one last time, but your heart was no longer beating against mine. Your belly no longer moving as your struggle to breathe was over. Your eyes remained closed.
We were left to navigate this world without you. But, we no longer knew how. Our world was upside down, never to be the same.
In the year since you returned to heaven, we have mourned your loss every day. For a long time, we thought we had lied to you – we were not okay without you. You were whole in heaven, but we remained here, broken. You left a huge void in our lives and in our hearts, and we feared that we would never recover from the pain. How could we get up in the morning if we couldn’t see your sweet face? How could we smile, knowing that we’d never again hear your squeaky laugh? How could we bear the thought of not being able to hold you close and feel your warmth?
Then, one day, we realized that you really weren’t gone at all. That you were with us all of the time, just in a different form. You continually send us signs, and we have learned to watch and listen for them. We see you in the dragonflies that visit us, the dreams that we cling to, and the music that reminds us of you. We now understand that you will be watching over us for the rest of our lives, until we are reunited in heaven. And, we discovered that, with this knowledge, we will be okay again and that we hadn’t lied to you after all.
Last fall, we learned that I was pregnant and knew instantly that you had sent this new life to us. We believe that you hand-picked your little sister for us. I love thinking of the two of you in heaven, sitting side-by-side with your little heads touching and laughing as you talk. I know, as you told her about us, you explained that her mission will be to help heal our hearts. And, when your sister is born this summer, I hope to see a glimmer of you in her face. Again, we will be brought together.
But, understand that the void you left will never be filled. No one will ever take your place. The hole in our hearts will forever remain, and we always will ache for you. But, we are starting to get used to the pain – to look at your pictures with smiles instead of tears, to laugh at the memories of you that we share, to learn to live again.
You always will be our first born son – the love of our lives, and the child that forever changed them. You motivated an army of supporters to fight first for your life and now for your legacy. Your daddy and I are so proud of how brave you were as you battled SMA and so honored to be your parents. We didn’t know what it really meant to live until the day that you were born. We didn’t know what unconditional love was until the first time you looked into our eyes. We didn’t know how it felt to be truly helpless until we couldn’t save you from this horrible disease. We didn’t know what real grief was until you took your last breath. And, we didn’t know what hope was until you gave it to us.
As you courageously lived your life, you helped us find the meaning and purpose in ours. You made us better parents for your sister. We are so lucky to have had you as a son and now as a guardian angel. Our love for you is without limits. So, on your first angel day, please feel the love that we are sending to you and know how much we miss you. We will keep watching for signs.
Loving you forever,
Mommy
June 4th, 2010 | Posted in Family News, News | 11 Comments »
Thank you so much to everyone who participated – and donated – in the second annual Families of Spinal Muscular Atrophy (FSMA) of Greater Florida Family & Friends Spring Picnic Fundraiser on May 22. It was wonderful to spend such a beautiful, sunny day catching up with everyone in our SMA family. With more than 100 participants, we raised a whopping $1,650 for SMA awareness, outreach and research efforts.
Perhaps the most touching part of the picnic was the Remembrance Ceremony and Balloon Release. As the babies that our chapter has lost since the last picnic were recognized, several dragonflies began to play overhead. To us, it was a clear sign that our angels were there.
Here’s the list of our chapter’ s angels and warriors recognized on May 22, 2010 – please keep them and their families in your thoughts and prayers:
For the babies lost to SMA since the last picnic:
Andrew Glenn Butler – January 8, 2009 – June 4, 2009 (Type 1)
Cooper Finn Nowotny – July 23, 2009 – December 26, 2009 (Type 1)
Abigail Katherine Judge – July 18, 2008 – April 17, 2010 (Type 1)
For all of our angels, watching over us in heaven:
Andrea Trakas (Type 1)
Chloe Painter (Type 1)
Franciso Rodriguez, Jr. (Type 1)
Stephen Maxwell (Type 1)
Taylor Bowser (Type 1)
Christian Taylor Ward (Type 2)
For our warriors who continue to fight this disease:
Amy Marquez (Type 1)
Allison Kerns (Type 2)
Audrey Winkelsas (Type 2)
Aurora Knowles (Type 2)
Ava Davidson (Type 2)
Brooklyn Santos (Type 2)
Christian Cuadrado (Type 2)
Edmond Fordham (Type 2)
Isabella Toro (Type 2)
Joie Smith (Type 2)
Maia Shockley (Type 2)
Morgan Kelly (Type 2)
Paige Nixon (Type 2)
Sierra Factor (Type 2)
Tiana Riveria (Type 2)
Vivianna Madera (Type 2)
Diana Baross (Type 2/3)
Elio Navaro (Type 2/3)
Jessica Nelson (Type 3)
Joe Miller (Type 3)
Laurie Sore (Type 3)
Thank you!
May 26th, 2010 | Posted in News, SMA News | No Comments »
Every day in March, members of Andy’s Army took a few moments to place an online vote for Stop SMA in the $250K Pepsi Refresh Project. Thanks to your support, Stop SMA now is an official grant recipient.
The non-profit organization plans to contribute the grant funding to a current study involving Sodium Phenylbutyrate that is being conducted by the laboratory of Dr. Kathy Swoboda at University of Utah School of Medicine. This is an exceptionally powerful trial that addresses several fundamental aspects of SMA biology and SMA clinical trial design. Dr. Swoboda’s work is ready and ongoing in the clinic, meaning that this grant will have an immediate effect for participating SMA children and their families.
Thank you again for your willingness to vote and for your support of our efforts to find a cure!
April 25th, 2010 | Posted in News, SMA News | No Comments »
Today we learned that Andy’s friend, Abby Judge, lost her battle with SMA. A brave fighter, Abby was 21 months old.
I have been e-mailing her mom, Laurie, just this week about the realities that we face when confronted by this disease, the memories we cling to, and the hope that we must keep in our hearts. We reminisced about how we met – in the ICU of All Children’s Hospital during the last week of May, 2009. Abby and Andy both had been admitted within days of each other, both sick with pneumonia.
When Laurie came into our hospital room to say hello, Andy’s face lit up, and he gave her a huge smile. And, Laurie smiled back and told him how handsome he was. We laughed, which felt really good, because there isn’t much reason to laugh when your child is in the ICU. I told Laurie that Andy was a flirt. We made plans for a play date for Andy and Abby – I called it a “lay date.”
One thing I know for certain is that when Andy looked at Laurie, he knew that he was looking at a friend. And, I remember liking Laurie instantly and feeling so grateful that I finally knew someone who really understood what it was like to be on this journey with Type 1 SMA.
I went over to visit Abby later in her room and vividly remember how enthralled she was in her Strawberry Shortcake video. She had no time to chat with me! But, when her mom talked, Abby’s face just filled with love. I won’t ever forget that look in Abby’s eyes or the way that Laurie reached through the tubes and wires to lovingly stroke her hair.
Unfortunately for us, Andy would never leave the hospital. The night that he died, we heard that Abby was struggling too. We were so afraid that we would lose her. But, thankfully, Abby made it home to her little pink room with her mom and dad the very next day. We like to think that Andy helped her find the strength to breathe without the machines and to leave the hospital safely.
In the months that followed, I visited Abby, Laurie and Steven at home a few times…always met with a smile from Abby and the sound of Strawberry Shortcake on the TV. I got to hold Abby in my arms and marvel at how big she had grown. I loved her little pig tails. I listened to her say “mama” and watched in awe as she moved her arms to play with her toys. I read her a Strawberry Shortcake story, and she followed along intently, helping me turn the pages.
And, on our first Christmas without Andy, Abby gave us a little tree with an ornament that she had hand-painted for her friend. It was the only Christmas decoration in our house last year, and it helped us to find happiness through our grief. Abby’s gift truly was from one angel on earth to another in heaven.
Today, I am hoping that Andy was again with Abby, meeting her at the pearly gates. I can picture him with a huge smile for her – just like the one that he had for her mom so many months ago. I hope that he took her hand and introduced her to all of the other angels. And, I hope that they started to play like they never could on earth. I can just see them running and laughing, with Abby’s pig tails swinging in the breeze.
But, I also know the pain that faces her parents, and I hope my friends know that we are here for them – with open arms and open hearts – for the next part of their journey. Steven and Laurie, we love you, and we thank you for sharing Abby with us. She lives forever in our hearts.
Abigail Katherine Judge, July 18, 2008 – April 17, 2010
http://www.caringbridge.org/visit/abigailjudge
Abby Judge on Andy's First Birthday
April 17th, 2010 | Posted in Family News, News | 1 Comment »
The producers of the award-winning “Florida Crossroads” documentary series, which airs statewide on PBS stations, dedicated a half-hour episode of the series to telling Andy’s story, along with the stories of several other families in the Tampa Bay Area who are affected by SMA. The episode premiered February 2010 and repeated throughout the year – it has helped raise significant awareness about the disease throughout Florida.
April 10th, 2010 | Posted in News, SMA News | No Comments »
Andy should have celebrated his 15-month birthday today, if not for SMA. Please think of him – and all of the children with this disease – and please sign the Petition to Cure SMA at www.PetitionToCureSMA.com.
This petition is in support of the SMA Treatment Acceleration Act, which was initially introduced in Congress in 2007 and was reintroduced in 2009. The passage of this legislation will help researchers cross the finish line and END SMA, while providing groundbreaking data for SMA and other disorders.
Your signature on this petition will let our lawmakers know that finding a cure or treatment for SMA is IMPORTANT and that their support of this legislation is CRITICAL.
PetitionToCureSMA.com is a grassroots effort started by our friends Bill and Victoria Strong, whose daughter Gwendolyn also has SMA.
Thank you!
April 8th, 2010 | Posted in News, SMA News | No Comments »
A year ago this weekend, four of my dearest girlfriends traveled from all over the country to meet Andy. They spent the weekend fawning over him, preparing freezer meals, and helping around the house. They patiently helped me feed Andy, sometimes one drop at a time, when he started to refuse his bottle. They stood by my side when the pulmonologist recommended that we execute a “Do Not Resuscitate” order for my then-three month old son. They held my hand and stroked my hair as I cried from the pain that spinal muscular atrophy already had caused for my family and the knowledge that the worst was yet to come. Then, they took me out of the house I hadn’t left in weeks – except for the hospital or doctor’s appointments – and spent a day pampering me. They flirted with Alan and fought over who was his favorite. They made us laugh. They gave us hope. It was exactly the support we needed at exactly the right time.
What we didn’t know was, that the day after the girls left, Andy would be readmitted to the hospital again…the fourth time in as many weeks. And, that within the next several days, he would undergo surgery to have a feeding tube placed into his stomach. That we would be spending Easter Sunday gathered around his hospital crib, hoping for a smile. That we had just reached the beginning of the end. That just two months later, on June 4, 2009, Andy would be gone.
When you have a child, you make certain basic assumptions. When Andy was born, I assumed he had a full life ahead of him. I looked forward to watching him grow and wondered what kind of man he’d one day become. I dreamed of the holidays, birthdays and achievements that we would celebrate with him over the years. I expected skinned knees, some broken rules, a few disappointments, and, perhaps when he got older, a broken heart. I just didn’t realize that the broken heart would come so soon and that it would be mine.
I now know that without the help and support of my friends and family, I couldn’t have survived losing my son. Those same girlfriends surrounded me in the days after Andy’s death, taking care of arrangements when I didn’t have the strength and making sure that I got out of bed. They made me smile when they could and again held my hand when they couldn’t. They looked at Andy’s pictures with me and comforted me as I asked why SMA, why him, why us. They made sure I knew that, when they had to leave, they were only a phone call away. And that Andy had forever changed their lives.
So, this Easter weekend, which also marks the 10-month anniversary of Andy’s passing, I’m reminded of these bittersweet memories. While my heart remains broken, it also is filled with hope and love. For my beautiful baby boy, who watches over us from his place in heaven. For my friends who continue to stand by my side. For my husband and family who were there with me in the darkest of times and still give me the strength to keep moving forward. For my baby-to-be who will bring joy into our lives once more. For a cure for SMA.
Next year, I will take a few moments on Easter Sunday to look at the pictures of Andy, wearing his bunny hat and slippers in his hospital bed. I expect that I will smile through the tears as I remember that day. Then, I’ll wipe my eyes and rejoin my husband as we celebrate our daughter’s first Easter. I’m sure that I’ll take too many pictures and share them all with my girlfriends, whether they like it or not. And, I know that Andy will be right there with us, smiling.
April 3rd, 2010 | Posted in Family News, News | 3 Comments »
As of March 31, 2010, the voting for the Pepsi’s “Refresh Everything” campaign is over – and STOP SMA ended up in the top spot!!! Because you took a few seconds each day in March to vote for this charity, STOP SMA will be awarded $250,000 for SMA research. You can check out their Web site at http://www.stopsma.org/. As soon as we have details on how the money will be spent, we will let you know.
Without spending a penny of your own money, you have helped us raise $375,000 between this contest and the two rounds of the Chase Community Giving contests. This money already is accelerating research efforts, bring us closer and closer to a CURE.
We can’t thank you enough for your votes, your posts and your encouragement. Together, we will END SMA – and we’ll do it for Andy.
March 31st, 2010 | Posted in News, SMA News | 1 Comment »
A year ago today at 11:52 AM, we welcomed our son Andrew Glenn into the world. We instantly nicknamed him Andy. A beautiful baby boy with thick brown hair and the bluest of eyes, he was everything to us – a dream come true.
But, our dreams were painfully shattered when we discovered that our perfect baby had a fatal neuromuscular disease called spinal muscular atrophy or SMA. We lost Andy to this devastating disease in June, just four days shy of his five-month birthday.
Now we find ourselves, seven months later, facing his first birthday without him. Knowing how he loved a party, we will come together to remember him. But unlike other parties for typical one-year olds, today we will gather around his final resting place and wonder how it came to be that we are celebrating what should be such a happy day in a graveyard. How in a year we could experience both the miraculous moment when he came screaming into this world and the crushing sadness of watching him take his final breath. How our lives could be so completely and forever changed.
Andy taught us so much through both his life and death, but, most of all, he taught us to be grateful. For each moment we have together. For every unhindered breath we take. For the love and kindness that surrounds us. For the hope that keeps us going.
In his honor and memory, we want to let you – our friends and family – know how much we have appreciated the support and compassion you have shown us this year. You surrounded us with love in our time of despair. You gathered together as “Andy’s Army,” giving your time and money so selflessly to help us as we strive for a cure. You sent us cards, letters, and e-mails even when you didn’t have the words to console us. You called just to let us know that you were thinking of us. You listened to us and allowed us to cry.
And you understood when we didn’t know how to show our gratitude. These two simple words seem so inadequate for all of your kindnesses, but we thank you from the bottom of our hearts. We thank you for keeping our precious son alive in your memories.
Our present to Andy on his first birthday is our commitment to keep celebrating his life. While we always will remember 2009 as Andy’s year, we will not forget the lessons he taught us or the bravery he showed us in his fight against SMA as we move into the future. Andy always will be a part of our family, and his legacy will live on through all of us.
Today and always, we will remain forever grateful for you and for the little angel who is watching over us all in heaven.
Andy's birthday cake on January 8, 2010
January 8th, 2010 | Posted in Family News, News | No Comments »
