Brian Denger's Blog (59)

If I needed someone

I've always enjoyed photography, it really takes a lot of time to do correctly so I don't spend the time taking pictures as I once did when my children were younger. I picked up this hobby from my father and maybe because I dislike having my picture taken I stand behind the lens instead of in front (Fortunately few pictures of me as a teenager have survived!). In the dining room of our home I have one wall covered with framed pictures I've taken over the years. As you might guess most are of… Continue

Added by Brian Denger on March 4, 2009 at 3:04pm — 1 Comment

Tomorrow Never Knows

Paraphrasing Shakespeare's Friar Lawrence from Romeo and Juliet, he says there is nothing so vile that exists on earth that doesn't has some special good, nor is there anything so good that abusing it will not result in bad. We see examples all the time and as basic as water and fire. Water is needed to sustain life, yet abused one can drown. Even something harmful may in fact have benefits such as fire which can destroy and harm, also keeps us warm and is used for cooking. For the DMD… Continue

Added by Brian Denger on February 20, 2009 at 1:46pm — 2 Comments

I'll follow the sun.

I called my mother the other day to clarify plans she had been making for a family get together. Unfortunately when my family makes plans they usually forget much of our circumstances and leave common sense out. So, to avoid the pitfalls I typically will intervene to ensure considerations have been made for accessibility or that we can fit the activity into our schedule.



I often wonder how much my family actually absorbs about life for Matthew and Patrick. Speaking with my mother… Continue

Added by Brian Denger on December 25, 2008 at 8:59am — 3 Comments

Here there and everywhere.

This week Matthew was invited to a party by a girl in his youth group. Alice and I know the family fairly well, yet we haven't been to their home and didn't know how Matthew would get inside with his wheelchair. Fortunately they called to let Alice know they were borrowing a ramp. This was a good sign. The evening of the party I offered to drive Matthew just to be certain he was able to get inside, make sure he was comfortable and let the family know about his needs based on what the other kids… Continue

Added by Brian Denger on November 29, 2008 at 9:44pm — 5 Comments

Fixing a hole

As people and especially as parents we all carry baggage that we dredge up from time to time when we need a good dose of humility. It could be from when we were children or something later in life. Being a parent of a child or children who have a chronic illness only adds another dimension when these situations involve the child. A situation that may go unnoticed under other circumstances takes on a different meaning to us. As much as I’ve tried to remember we all make mistakes one such… Continue

Added by Brian Denger on November 15, 2008 at 9:13pm — 2 Comments

The long and winding road.

Orlando, FL, New York City, NY, Chicago, IL, Phoenix, AZ, Anaheim, CA, Cincinnati, OH. These places are linked by one common thread. These cities are host to marathons which Parent Project MD has secured slots for families, friends and others are able to run to support the Run for our Sons program. Just over five years ago Kimberly Galberaith had been convinced that PPMD should get people to run at Disney World as a fund raising vehicle. Kim spoke to several participants at the Annual PPMD… Continue

Added by Brian Denger on November 6, 2008 at 9:19am — 1 Comment

With a little help from my friends.

I dropped Matthew off at his Homecoming dance this weekend. Whoever coined the phrase "mixed emotions" probably didn't realize how true it is for me in situations like this. After unloading Matthew from our van and leading him through the line of students to get to the accessible door I stood and looked at all the young people crowded inside. I shuddered wondering how would they all get out in an emergency, but also knew Matthew would be with great friends and have a fun… Continue

Added by Brian Denger on October 12, 2008 at 8:58pm — No Comments

Looking through a glass onion

There are times I watch my boys from a distance and try to imagine what they are thinking. I realize they face challenges we can only imagine, yet I seek access to their world without being intrusive. I have to believe they have similar dreams and desires and try to catch glimpses by observing them when they are just being themselves.



Today I had one of those opportunities. Patrick had just gotten off the bus and I saw him at the end of the driveway. I peered out the window wondering… Continue

Added by Brian Denger on September 12, 2008 at 5:30pm — 7 Comments

Our Magical Mystery Tour

Traveling is often viewed by the "infrequent flier" as some wonderful activity filled with adventure. Whether by van, train or plane, my sons regularly log many miles. I suppose to an outsider, traveling is somewhat romantic, but add TSA foolishness, delays in airline service and the many other travel inconveniences and I see things a little differently.



My sons next regular appointments were at Cincinnati Children's Hospital Medical Center. Driving from Maine to Ohio is a roughly… Continue

Added by Brian Denger on August 25, 2008 at 10:00pm — 1 Comment

Another day in the life.

This morning I got up before six and ran eight miles (A good run helps to clear the cobwebs from my head and prepares me for the day.). After I finished stretching and changed my shirt I began getting my sons out of bed. My wife, Alice, beat me to the shower, so I helped Matthew and Patrick change their clothes, take care of "business"and got them cereal for breakfast. By the time I had the boys' medicines and milk ready Alice and I changed roles. I took my shower (Having already sustained… Continue

Added by Brian Denger on August 15, 2008 at 9:41pm — 1 Comment

Summer vacations and MDX Mice

The MDA summer camp my sons Matthew and Patrick have attended for several years has changed its format cutting the length of stay in half to accommodate those on a small waiting list. To be clear, this decision was made by the organization that operates the camp, not the MDA. My wife and I discussed the challenges of packing the boys' clothing, lift, Bi-Pap, Cough Assist and battery chargers for just four full days of camp. We then talked to Matthew and Patrick who agreed a two plus hour ride… Continue

Added by Brian Denger on August 3, 2008 at 10:24pm — 3 Comments

Managing "us"

O.K., so having our child diagnosed with Duchenne was not by choice, let alone having both sons affected. My wife, Alice, and I didn't ask to spend countless hours in waiting rooms, speaking to doctors (Some good, some...well..you know...), deciding what wheelchair is best and wondering whether insurance will cover it or taking a large chunk of savings and weekly salary to buy a gas guzzling accessible van. I'd rather not have to put up with people who stare at my sons, explain to family why we… Continue

Added by Brian Denger on July 25, 2008 at 7:54pm — 1 Comment

Heeding the beat of a different drummer.

When I think of families caring for a child with a chronic condition I sometimes think of nineteenth century American writer and poet Henry David Thoreau. He wrote "The mass of men lead lives of quiet desperation." I don't entirely agree with Thoreau, yet realize there are moments in our lives where we struggle for control and insight.



It is a daunting task to live and breathe Duchenne each and every day and those of us connected to this disorder cannot escape it's grasp. Unlike… Continue

Added by Brian Denger on July 6, 2008 at 7:45pm — 3 Comments

Accessibility and foresight

I recently won a pair of tickets to a Red Sox game at a race and forgive me as I didn't know who they were playing until the night of the game. If it isn't running I'm afraid I am really not interested, but don't hold it against me! Still, I live in New England and have taken my daughter Rachel and older son Matthew to a game in the past, so this was a perfect opportunity to take my younger son Patrick. The plan was to drive to the northernmost "T" Station (Boston's subway) avoiding Boston's… Continue

Added by Brian Denger on June 27, 2008 at 10:15pm — 2 Comments

2:00 AM

Matthew was diagnosed ten years ago with Duchenne and Patrick about another eighteen months later. Today it is like looking back into a 1950's TV show for my family and me. My wife and I sometimes speak about how much simpler things were "back then". In some ways there is truth to the saying that ignorance is bliss. Sure, Matthew had "refused" to climb stairs alternating feet and wouldn't pedal a tricycle, but he was also content to play standing in front of the couch with his toys on the… Continue

Added by Brian Denger on June 20, 2008 at 6:18pm — 6 Comments

IEPs and other things we learn.

Matthew is finishing his freshman year and he, Alice and I recently attended his annual IEP meeting. These meetings often lead to concerns about high blood pressure and lost sleep for parents. Working with educators and professionals in their domain and attempting to speak in their language is challenging. Fortunately my wife and I have established a good rapport with our sons' Teams and have been successful obtaining the services and accommodations both our sons need. Every year Alice and I… Continue

Added by Brian Denger on June 4, 2008 at 10:01pm — 3 Comments

Wellstone MDCRC meeting 2008

As the public member of the Paul D. Wellstone Muscular Dystrophy Cooperative Research Center Steering Committee I attended the annual "face to face" meeting recently hosted by the University of Rochester Center in Rochester, NY. A little background might be helpful as many in the Duchenne community may not realize that as mandated by the MD CARE Act of 2001 these Centers are focused on research for the nine known Muscular Dystrophies including Duchenne, Becker, Limb Girdle MD,… Continue

Added by Brian Denger on May 16, 2008 at 9:12pm — No Comments

Balance

When my wife and I learned my sons had Duchenne Muscular Dystrophy it was like someone threw a wrench into our world. The questions came faster than the answers. For example, how are we supposed to go to work, breath or resist the urge to pull our sons out of school and just hold them? Well, as many of you know there are no answers others can provide. All truths must come from within based on who we are.



So, how do families learn to cope with a diagnosis like DMD and avoid going over… Continue

Added by Brian Denger on May 10, 2008 at 9:43pm — 2 Comments

The voices from within.

Most people who know me also know I run a little. O.K., maybe a lot. Last year I ran over 2400 miles. When I travel the first thing I usually do prior to leaving is map out a few places to run and speak with people in the area about the best places. In 2007 I ran in twelve states and in Canada. It must make me seem a bit compulsive, but that's me. What started as seeking a bit of exercise has morphed into a fund raising tool and an opportunity to reflect.



My typical run lasts about… Continue

Added by Brian Denger on May 1, 2008 at 9:13am — 1 Comment

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