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A Letter to Andy on His Fourth Angel Day

Dear Andy, We lost you in the twilight hours of June 4, 2009. It’s hard to believe that four years have passed since that day. Sometimes it feels like you were just in my arms – your face tucked under my … Continue reading

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Introducing Will

We are proud to introduce Andy’s little brother, who was born today, May 6, 2013, at 7:48 AM.  At 8 pounds, 13.5 ounces and 20 7/8 inches, William McLean Butler is the newest member of Andy’s Army! We are thrilled, as … Continue reading

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For Will

Dear Will, Right now, I’m 39 weeks pregnant – your birthday is just days away. Your room is ready. Your clothes are washed. All of the last minute preparations are being made. We are counting the seconds to your arrival. … Continue reading

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In the Family

The first time I heard the words “Spinal Muscular Atrophy,” my infant son Andy was being diagnosed with one of the most severe forms of the degenerative disease. My husband and I were shocked to learn about SMA and that … Continue reading

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What’s In A Name?

Our children’s names are very important to us. After months and months of debate, we named our first son Andrew Glenn. Andrew means “a strong man,” and our boy certainly embodied a strength of spirit that many grown men don’t … Continue reading

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Our Love Story

Once upon a time there was a girl, just out of college and facing the real world all alone. And there was a boy, looking for an adventure far from home.  And fate brought them together. Theirs was a love … Continue reading

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New Beginnings

The pregnancy test was positive. My heart caught in my throat, and my stomach dropped to my knees. All at once, I was incredibly thrilled and completely terrified. I walked over to my husband, who was standing in the door … Continue reading

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A Letter to Andy on His Fourth Birthday

Dear Andy, Happy fourth birthday, my angel! I can’t believe it has been four years since the amazing day that you were born. The day that changed our lives forever. Your daddy and I smile at the memories of your … Continue reading

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Looking Forward to 2013

Happy New Year from our family to yours! We can’t wait for the blessings that 2013 will bring, including our newest (and SMA-free) addition who is due to arrive in May and hopefully a cure for SMA!

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As Featured in Exhale Literary Magazine

We are so proud to announce that one of our posts has been included in the Late Summer 2012 issue of Exhale Literary Magazine. The theme of the issue is “change,” which made it a perfect fit for our story … Continue reading

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You Are Not Alone

On Saturday, August 11, 2012, our family attended the FSMA Greater Florida chapter’s annual candle lighting ceremony. Each year, we come together on the second Saturday of August from all parts of Florida to pay tribute to those who we have lost to … Continue reading

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Raising SMA Awareness This August

August is Spinal Muscular Atrophy (SMA) Awareness Month. It’s that time of year for us to remember those we’ve lost to this insidious disease, like our sweet Andy, and to honor those who are continuing the fight. And, it’s that … Continue reading

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Lucy is TWO!

Dear Lucy, Today, you are two years old. That is, two going on twenty. You’ve always seemed older than you are. When you were a newborn, you looked like a three-month old. You had a full head of dark brown, … Continue reading

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On the Third Anniversary of Your Angel Day

Your favorite song was “Over the Rainbow.”  I played the Hawaiian version of the song over and over again when I was pregnant with you, singing along with the “Ohhhh, Ohhhh, Ohhhhs” and dreaming of the boy you’d be. After … Continue reading

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A Community Divided

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 … Continue reading

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For My Dad

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 … Continue reading

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Today is Your Third Birthday

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 … Continue reading

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Christmas in Heaven

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. Christmas In Heaven Sung by Sarah Schieber 2008 words and music by Jeremy Johnson and Paul … Continue reading

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Finding My Way Back – Part 2

Happiness can be found, even in the darkest of times, if one only remembers to turn on the light. ~ Albus Dumbledore My husband and I received the news that we were having a healthy baby girl in January 2010 … Continue reading

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Finding My Way Back – Part 1

It’s never too late to be who you might have been. ~ George Eliot The other night, my husband and I were talking after we’d put our daughter Lucy to bed. He said something funny, and I laughed. He cocked … Continue reading

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