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Lanterns for Andy
Today is the Annual SMA Candle Lighting, which traditionally takes place on the second Saturday in August. Across the globe, people light candles to remember those lost to SMA and to honor those still fighting. At sunset, our family – … Continue reading
Posted in Family News, News, SMA News
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The Summer of Discontent
There are so many things that I should be doing right now – the laundry, dusting, vacuuming, and dishes among them – but Will is sleeping, Lucy is at school, and this rare moment of solitude is mine. The house, … Continue reading
Posted in Family News, News
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Remember Andy This August
A few weeks ago, I was sitting in a rocking chair with my infant son Will on my shoulder and my three year old daughter Lucy on my lap. We were “snuggling up,” in Lucy’s words. I looked down at … Continue reading
Posted in Family News, News, SMA News
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A New Chapter
I write a lot on this website about our journey through grief after Andy’s passing. By sharing stories of Andy and of our struggles, I hope to help others going through similar circumstances feel a little less alone. I know … Continue reading
Posted in Family News, News
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Seven Weeks
Andy was seven weeks old when we stopped denying that something was terribly wrong with him. When we stopped explaining away the belly breathing and why he seemed so floppy. When we rushed him to the pediatrician and our worst … Continue reading
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News, SMA News
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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
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News
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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
Posted in Family News, News
10 Comments
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
Posted in Family News, News
14 Comments