Points to Ponder By, Pat Furlong

What messages do we send to our sons, to our friends, to our family? When Duchenne muscular dystrophy (Duchenne) enters our homes, all of us change. What we think changes. How we communicate changes. And maybe, just maybe, our communication changes in light of the hope we have on any given day.

Sometimes I hear themes that frankly worry me a bit and since this is my blog, I thought I would bring them up simply to think about. Nothing more.

I do know we are all waiting… waiting for clinical trials… waiting for news about treatments.. waiting for treatments… waiting for cures. Are you waiting, thinking that life will begin once a treatment exists? And do you worry that your son will interpret this as ….life is terrible and will remain so until you have a treatment? Will life pass you by and will you spend too much time waiting and not living?

Boys with Duchenne are walking longer, living longer, growing up, and becoming adults. AND we all need to plan to see them grow up and become successful individuals who contribute to society. We all believe Duchenne should be removed from the list of ‘lethal’ diagnosis and switched over to the list of ‘chronic disease’ that has a growing list of treatments (and cures). Individuals will be diagnosed, enter a system that delivers optimal care (and the number of these clinical centers of excellence is growing thankfully), and receive treatment/cures. Progress to date is amazing - progress in research and medical care, a philosophical shift from the ‘no hope and no help’ of years back, to potentially amazing and endless possibilities.

As parents, we also need an attitude change ourselves. I love the phrase from Shawshank Redemption: “Get busy living or get busy dying”. We have to stop saying ‘our kids are dying’, in fact they are LIVING and are expected to live a long life.

We need to encourage independence. We need to stop building protective bubbles around our sons. They need to be able to listen, speak, and act for themselves, without filters.

We need to realize that education is paramount. Frankly, this is an area in which they can compete and their future will depend on the educational foundation they build today.

We need to promote their success. Education, employment, independence, life choices. After all, what happens if you are not around?

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Comment by alicia on July 7, 2008 at 3:15pm
I most definately agree. My sons diagnosis has helped me to slow down and really enjoy my children, and not sweat the little things. Thanks for all you've done, and remember Today is the first day of the rest of your life!
I wish only the best to all of you.
Deacon,s momma age 3
Comment by Kathleen Cacciaguerra on June 12, 2008 at 9:46am
Thank you, Pat,
I believe in Positive thinking, Live for the day. We can not sit around waiting for "things" to happen or not happen to our boys. Everyday is a good day, that I spend with my always happy little guy. It's hard to see our children hurt for any reason. We as parents have to remember, this disorder affects us, but it is not happening to us. All our boys have amazing spirits, let's not break them. What time we have with our families and friends is so precious. There is no time for Negative thinking. For none of us know what each second will bring us.
God Bless us all,
Kathleen Cacciaguerra
Christian's mommy
Comment by Kristi Powell on June 9, 2008 at 7:37pm
AMEN AMEN AMEN!!!! We frankly are living with the motto of GET BUSY LIVING!!! NO ONE is promised tommorrow, with or without Duchenne!
Comment by Char Burke on May 3, 2008 at 3:06pm
Thank you for all that you've done and continue to do! Your journal is right on: as parents we need to concentrate on the here and now and make the most out of it. How often do I as a parent of a DMD boy struggle to accept this horrible diagnosis....searching for the next best cure...or supplement or something that will ease the pain. It is a fine line we DMD parents walk between staying on top of the research and being present and enjoying our sons now.

I believe there was a DMD parent that posted recently that we DMD parents are lucky....because, there are some parents out there that have young children with super aggressive cancer and those precious children were not living near as long as our DMD boys.

So, Pat, thank you for Parent Project - for giving your life to DMD/BMD -without you, all us parents would have been pretty lonely and hopeless. Thank you again for all you do and continue to do.
Char Burke
Will's mom - age 51/2

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