Archives
- January 2024
- June 2019
- January 2019
- June 2018
- January 2018
- June 2017
- January 2017
- June 2016
- January 2016
- August 2015
- July 2015
- June 2015
- January 2015
- December 2014
- June 2014
- March 2014
- January 2014
- December 2013
- August 2013
- July 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- August 2012
- July 2012
- June 2012
- April 2012
- March 2012
- January 2012
- December 2011
- October 2011
- August 2011
- July 2011
- June 2011
- May 2011
- April 2011
- March 2011
- February 2011
- January 2011
- December 2010
- November 2010
- September 2010
- August 2010
- July 2010
- June 2010
- May 2010
- April 2010
- March 2010
- January 2010
-
Most Popular Posts
Memorial Tributes
SMA Network
Navigation
Category Archives: News
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
Posted in Family News, News
11 Comments
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
Posted in Family News, News
6 Comments
Sometimes…
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 … Continue reading
Posted in Family News, News
8 Comments
The Power of Awareness
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 … Continue reading
Posted in News, SMA News
4 Comments
August is SMA Awareness Month
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. … Continue reading
Posted in News, SMA News
Leave a comment
Perspectives
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 … Continue reading
Posted in Family News, News
6 Comments
Join Team Andy’s Army at the 2011 Greater Florida FSMA Walk-N-Roll!
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 … Continue reading
Posted in News, SMA News
Leave a comment
Happy First Birthday, Lucy Catherine!
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 … Continue reading
Posted in Family News, News
4 Comments
A Letter to Andy on His Second Angel Day
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 … Continue reading
Posted in Family News, News
8 Comments
The Myth of “Getting Over It”
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 … Continue reading
Posted in Family News, News
16 Comments
What You Need to Know About SMA Carrier Testing
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 … Continue reading
Posted in Family News, News, SMA News
21 Comments
Celebrating Mother’s Day
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 … Continue reading
Posted in Family News, News
Leave a comment
When Mother’s Day Hurts
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 … Continue reading
Posted in Family News, News
Leave a comment
Counting Lessons
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 … Continue reading
Posted in Family News, News
2 Comments
The Meaning of Easter
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 … Continue reading
Posted in Family News, News
5 Comments
Moving On
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 … Continue reading
Posted in Family News, News
5 Comments
Getting Healthy
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 … Continue reading
Posted in Family News, News, SMA News
1 Comment
Amazing Friends
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 … Continue reading
Getting Over the Fear
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 … Continue reading
Posted in Family News, News
6 Comments
Happy Second Birthday, Andy!
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 … Continue reading
Posted in Family News, News
2 Comments