Category Archives: Family 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 … Continue reading →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →

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 →