by Cherilyn J. Bacon

How do you cope when not just one of your children has a major medical concern but all of them?  The Utah California Women and Meridian Magazine want to help.

When Bill and Sherry Christensen married on Valentine's Day twenty four-years ago, their dreams were of a happy home, successful career, healthy children and one day settling down to retirement with visits from their grandchildren. 

Since the birth of their first child, their dream has dramatically changed.   Today the Christensen's are parents of four children, all diagnosed with the same rare form of muscular dystrophy, officially defined as “Congenital Muscular Dystrophy – Rigid Spine Syndrome”.  The malady is so rare that only nine to ten cases are known worldwide. 

"When our first child Mark was born, he was a pretty sick little guy," Sherry recalls.  "He had blood poisoning and a heart defect.  The doctors at Primary Children's Medical Center were surprised he even made it through."  Six weeks later, the doctors told the Christensen's that they had also detected a muscle weakness and that he might never walk. 

A Day in the Life of a Muscular Dystrophy Home

Life around the Christensen home is a blur of ventilating machines, spine fusion surgeries, emergency hospital stays with pneumonia, collapsed lungs in ICU, night feedings through gastric tubes, pain management, and negotiating wheelchairs.  "It's exhausting.  Many people don't realize it, but it's a full time job taking care of these children," Sherry explained. 

However, one thing is very clear:  Bill and Sherry and their children have no regrets.  "There's nothing we could have done differently.  We were told there was a one in four chance that any other children would have this defect.  We were optimistic," Sherry said. 

After the third child was born with the defect, Sherry asked her doctor if having a girl would make a difference.  The doctor was astonished.  "What do you want me to do, hit you over the head with a bat?"  The Christensen's picked up that bat and set the stats on end, batting 1000.  Number four was a girl, Shanna, now twelve, who stands boldly and a little crooked at a courageous 4 foot 2.  Her history is similar to her three older brothers, awaiting a spine fusion surgery at Children’s Hospital of Los Angeles as soon as she can grow a little more.

All four children have special gifts, ranging from excellence in computer animation and art to classical guitar.  Shanna's gift is her beautiful voice, and she has sung before thousands.

Your Invitation to an Event 

On Saturday, September 11, 2004 at the Salt Lake City Marriott Downtown Grand Ballroom, Shanna will sing to a crowd who will honor the women of the Mormon Tabernacle Choir with the Utah Heritage Award.  The Utah California Women is hosting the Noon luncheon event, co-sponsored by Meridian Magazine, to raise money for the Homeward Bound Foundation, a local Utah respite foundation.

The women of the choir will present a tribute to the heroes of 9-11 and Utah American Idol finalist John Preator will entertain.  A holiday gift boutique, and silent and live auctions will also benefit Homeward Bound, beginning at 9:00 a.m.  Reservations are required and may be made by calling Suzanne Merrill at 801-796-0831 or Marilyn Daniels at 801-374-2126.

What is Respite?

Respite is critical rest and relaxation for family members who care for their loved ones around the clock.  These are families in crisis twenty-four-seven who usually experience high stress levels, often ending in divorce.

"We see far too many single parent families trying to care for these special kids, which is a tragedy for all involved,” Bill commented.  “Many people don't realize how a handicapped child or loved one affects every area of life – socially, emotionally, physically and financially," Sherry added.

Coping with Daily Family Crisis

So how have the Christensen's coped?  "Day by day," Sherry quickly and assertively responded.  "Respites are essential and Homeward Bound has been so good to us.  We have found that our visits to 'As You Wish Chalet’ allow us to literally get back together and realize that, oh yeah, we really are friends.  We know we love each other, but with the much-needed rest, we have time to remember we like each other too.  At the end of our stay, we realize we can do this.  I don't know how we would manage if we couldn't get away."

Attitude has been a strong factor in the Christensen family's success.  "We are so grateful for our faith.  Our children have a huge understanding of the purpose of life, much more than most of us learn in an entire lifetime.  They understand this is temporary, and they have a lot of faith," Sherry explained.

"We have felt the Lord's hand in our lives, so how can we complain?  Although we are faced with many heartaches, we also experience spiritual blessings," Bill added.

One day Sherry was trying to pull Christopher, then 17, up against the wall to measure him.  She said, "I'm so proud of you, how you handle your challenges.  I'm so sorry you have to go through this."  Chris replied, "Mom, I consider it a privilege to have this body."  She was speechless.

A STORY TO TELL

The Christensen's have a story to tell, and Bill, a writer, producer and marketing consultant, has been working on it for many years.  "The book is finally done,  and is currently with my agent  It is now just a matter of time to get it published,” Bill sighed with relief, adding, “It is my sincere hope that the book will help anyone struggling in the whirlwind of crisis."

Click on the Event Flyer for Further Details

An Invitation (as mentioned above):  For all Meridian Readers (especially those in the Utah area), on Saturday, September 11, 2004 at the Salt Lake City Marriott Downtown Grand Ballroom, Shanna Christensen will sing to a crowd who will honor the women of the Mormon Tabernacle Choir with the Utah Heritage Award.  The Utah California Women is hosting the Noon luncheon event, co-sponsored by Meridian Magazine, to raise money for the Homeward Bound Foundation, a local Utah respite foundation.The women of the choir will present a tribute to the heroes of 9-11 and Utah American Idol finalist John Preator will entertain.  A holiday gift boutique, and silent and live auctions will also benefit Homeward Bound, beginning at 9:00 a.m.  Reservations are required and may be made by calling Suzanne Merrill at 801-796-0831 or Marilyn Daniels at 801-374-2126.