Duchenne, Wishes, More Time, Quality of Life
By Misty on Apr 11, 2010 in Duchenne Muscular Dystrophy
We all wish for more time. More so for parents who face life threatening disease like Duchenne, which robs our child’s body of strength, it’s ability to breath and eventually the heart to beat. The attacked on the body doesn’t happen over night. It starts at birth, noticeable at 2-4 years old, more times than not, wheelchair by 12 and the handful that survive the assault of Duchenne between 17-23 years of age live in a paralyzed body unable to move.
What is a parent to do as they watch, live eat and breath knowing their time with their child is most likely shortened by Duchenne? Knowing their child won’t or doesn’t have a “normal” childhood or young adult life? Knowing the progression of Duchenne will deform their child?
How does a parent live in constant Worry, Saddness, Anger and Fear? While going on with life. Does this mean we are destine to be unhappy, Does this mean we cannot ever be happy or live a life we want?
No way, the key as with all of life is to focus on the beauty and quality of life, basically WHAT YOU DO HAVE instead of ugliness, rage, fear or limitations. This is every humans challenge not just us parents with challenged children.
I wish for you better days. I wish for you to raise your face into the sun and smile on those dark days and sleepless nights when life seems so grim and scary!
I am a parent of two children who have muscular dystrophy. My son Jason died of the age of 28 four years ago and my son Chris who just turned 34 struggles to get through the day everyday. I could write my own book.
When you are young parents you can fight the “good” fight. While they are still with us and the disease process is ongoing the fight gets harder and harder. We would do anything to keep them going. The world is turned upside down when you loose that precious son. There is no closer mother son relationship than that of this one. I had that with my two sons.
I see you have it with your son. I would like to know a mom that has tried to live beyond their sons. It isn’t easy. Has anybody out there experienced that? I look forward to reading your book. My sister Christine O’Hagan wrote a book called Book of Kehls describing her experience with MD.
Pamela, I hear the love in your words, bless you, live beyond their sons I am not sure what you mean, do you mean a life
other than the one a mother has with her Duchenne son? Yes, I have a marriage, a daughter a thriving business. Is it easy heck no, but show me a life that isn’t touched by struggle at one time or another.
MY SON KE’Veon born with it and he only live 6month .then i had a son that didn’t have it and my last son Jerrold born with it an live only one month my world
Bless you MOM!! My ♥ goes out to you…thank you for sharing. HUGGSSS !!