Posts Tagged ‘ ALS ’

Read the Joyous Book ‘Until I Say Goodbye’ and Enter Princess Cruises’ 5-Day Getaway Sweepstakes

Wednesday, April 17th, 2013

What if you knew you only had a few years to live? That’s what happened to working mom Susan Spencer-Wendel when she was diagnosed with ALS (commonly known as Lou Gehrig’s disease) at age 45. In her bestselling memoir, Until I Say Goodbyeshe quickly sets off on special trips with her kids, husband, sister and best friend and vows to live joyously. Susan and her publisher, HarperCollins, have teamed up with Princess Cruises to offer Susan’s readers (that means you!) a 5-day Caribbean cruise called the “Experience of a Lifetime.” Princess Cruises is sending one lucky winner and her guest on a 5-day Caribbean cruise! Enter the sweepstakes before April 30, 2012 to win.

Susan’s book, Until I Say Goodbye, shows what one determined woman does to make the best of life under terminal circumstances. She goes to the Yukon to see the Northern Lights with her lifelong best girlfriend. She’s an adopted child, so Susan ventures to California and Greece to uncover her biological parents’ pasts and try to recover the family Bible. Friends help her organize thousands of family photos so her two boys and teenage girl will receive a special scrapbook. She builds a tiki hut in the backyard by her pool where she rests, socializes and writes this book with her only working finger–her right thumb–on her iPhone. Her husband, John, shows big, devoted love as he cares for her while working full time and rounding up their children ages 9, 11 and 15, plus the dog.

This book is not about dying. It’s a beautiful tribute to living with purpose. Susan proves to be a strong, determined, wise and witty woman. Her journey will make you want to do something special with your family and friends right now. Until I Say Goodbye will make you laugh and cry (just a little).

John Wendel, Susan’s husband, answered some questions for me about his family’s journey. Currently, he lovingly takes care of Susan.

KK: Do you have a mantra that has helped you cope in this difficult time that might provide inspiration to other parents in your shoes?
JW:  My mantra is,  “Be happy.”  I figure if she (Susan) can be happy, I can be happy. Very early on Susan decided to “live with joy.”  It may sound simple, a bit hokey even, but it gets us through.  Being happy isn’t like flipping a light switch. It’s hard. An interviewer once asked Susan, “How do you live with joy?”  Her answer: You try.

KK: What was the most surprising thing you learned about your family during this ordeal?
JW: I think what surprised me most is the resilience that our children have shown. Susan and I didn’t rush to tell the kids of her diagnosis. Why drop the bomb on them?  The progress of her disease was so slow and nearly imperceptible that they didn’t seem to notice that Susan went from healthy and fit to unable to move and barely able to speak. When they did ask if Mommy is going to die, I answered simply and honestly. I think they already knew the answer, but were just confirming. Their responses have been very matter of fact and accepting — like their mother’s. In fact my 11-year-old son Aubrey recently told me that one of his teachers had spoken to the class about our situation on a day that he was absent from school. Aubrey was upset and told me that he knows what’s happening to mommy and doesn’t need any special treatment from the other kids at school.

KK:  What was Susan’s favorite memory from the cruise she took with her sister?
JW: Susan said that the best part of the cruise was the opportunity for her and Stephanie to just talk without any interruptions or distractions. Even though we lived on the same street as Stephanie, it seemed that kids, work, and crazy schedules kept them from having any time alone to just talk.

KK: How do you communicate what is happening to your children?  Do you have any advice to offer others in a similar position to you?
JW: Before we communicated anything to the children, Susan and I talked with each other about what would be best. We also sought the advice of counselors. We knew we wanted to be honest with them.  The counselors advised us that the children would ask when they were ready.  Many friends and relatives seemed concerned that we hadn’t sat the kids down and had “the talk” with them. Our philosophy was that they were going to have their worlds turned upside down regardless. Why not let them go along blissfully unaware as long as we could. As it turned out we never really had to have “the talk”. They asked. I answered, and that was that. They asked two follow up questions:  How much longer will she live, and is it contagious?

My advice to anyone in a similar situation would be to seek advice from a counselor, have a plan, and be honest.



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