The brothers of Duchenne: Watching my son begin to understand what DMD will mean

“What am I going to do when Matthew is in a wheelchair?”

There was desperation and fear dripping from these words. His eyes were brimming with tears and I knew that he was experiencing the sense of loss that I had experienced 5 years ago when Matthew was diagnosed.  

My son, Owen, is 9. He is old enough to grasp the difficulties that Duchenne brings, but young enough to process it in very selfish terms. He saw how the changes in his brother’s abilities were going to affect him. He cried as he mourned not being able to wrestle on the floor with his brother, the days when they would no longer chase each other, taunt each other and behave in the rough way that brothers do.  He got a glimpse into the future and it horrified him.  

I remember that feeling.

When Owen, Bobby and I talked about it, we did not sugar coat the effects of Duchenne, but did stress the honest hope that we feel. When we talked about the research, he perked up and said, “I bet those doctors can figure this out.”  I told them that I was sure that they would, but it takes time and a lot of teamwork.  

We talked about the race (www.parentprojectmd.org/milesformatthew) and he said that was one fun thing that has come out of Matthew having Duchenne. I cherish this response because I always want my children to see the glass half full. Finding something good in every situation is so powerful and it keeps us strong.

Duchenne does not just disable its victim; it disables and disarms all who love him. There is, however, some relief in sharing this burden with our son, however painful it is. It is not a secret, it is not unspeakable, and it is not taboo. It is part of what defines and drives our family and we embrace it in the sense that we all must own it. 

Nine-year-old boys are not often known for their empathy. This moment of pause, reflection and emotional outpouring was truly beautiful, to be treasured, because it is the greatest show of love and concern that a person of that age can give. 

So here is the glass half full: In a moment of painful realization came a connection between parents and child and a new outlook on family for our son. I believe Owen grew up a little last night. This is a gift to cherish.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, a wife and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Raising kids with spunk

Can you guess which one is my little man?

So today our little man, almost a head shorter than every other basketball player on his team, ran out on the court all fired up to play the last tournament game of the season. He was doing the masculine arm flexing you see NBA players do as they run onto the court along with a few chest bumps (in his case, chest/hip bumps) with his teammates. 

What he lacks in height, he makes up for in determination and competitive spirit. It probably comes as no surprise that he plays point guard. He’s agile and, like Wayne Gresky, he has a really good sense of where the ball is going to be. He’s always in the middle of the action.

He is also astute in knowing his weaknesses -- height and consistent shooting. He knows how to overcome them by dribbling well down court and passing to the kid who can shoot more consistently. Or when there’s a scramble for a ball, he grabs on tight and flops to the ground, pulling the bigger kid down because he almost always gets possession. Then he gets to his feet and gets away, running down the court faster than the other kid. 

Needless to say, his spunk is what makes it so much fun to watch him play ball.

However, this same spunk gets him in trouble at times. At school, at summer camp and even Sunday school, he’s had his fair share of discipline for being a class clown. Often times, he has an inability to contain his restless energy, he talks too loudly or he takes his competitive spirit to the playground. Sigh. 

As a parent it’s a struggle to navigate the balance between discipline and encouragement. But as I watch his team win the game and witness one of the taller players picking up my little man and slinging him over his shoulder for a court side celebration, I have to think that he’s going to be more than A-Ok with that competitive spirit and ambition. I think it shows that he is willing to overcome obstacles and utilize his strengths.

Tiffany Crenshaw is a  North Carolina native, wife, mother of 2 wild and crazy kids, and an entrepreneur. She loves her family, a delicious glass of red wine, girl time and the occasional spa treatment. As an enthusiastic member of Wednesday Night Whine, she rarely misses a “meeting” unless she’s traveling for business. She is the President and CEO of Intellect Resources, a recruiting and consulting firm specializing in the healthcare IT industry.  

40 - and finally figuring things out

Well, I am 40 now.  I am heading down that slippery slope of becoming my grandmother, who knew absolutely everything and would tell it exactly how she saw it.  In a way, this kind of handle on life is refreshing.  It is black and white, very clear and always amusing, if you are not the victim.

I am going to make a valiant effort not make it to that bluntly critical state as I journey through the second half of life, which already has a few perks.  The greatest so far is the relief of having finally figured a few things out.  And because there is a bit of my grandmother in me, I can only assume that everyone wants to hear what I have to say and if you don’t, I am going to say it anyway!

So here goes; the key to happiness, per Allison Greiner, who has recently achieved middle age status:

1.     The first critical key to happiness is people. I believe that we are shaped most by the people in our lives, so we should be spending our time with those who lift us up, challenge us, are honest with us, who give us perspective and make us smile.  Don’t forget to smile.  

2.     Love yourself.  Please forgive the cliché, but I really do believe this. I spent a lot of time ignoring this piece and wasted a lot of precious time, as a result.  Here is the truth: The people that we treasure in our lives do not love us for the way we look, what we have, what we do for a living or in our spare time.  They love us for all that cannot be defined.  There is a real freedom in letting all the rest go and just being happy in your own skin and trusting that it is indeed a great skin to be in.

3.     Second, laughter is paramount. Not just at the world around us, but at ourselves.   I take great pleasure in laughing at my own expense and so do others.  As a teacher, I have a great audience every day and I think my relationship with my students is stronger because I do not take myself too seriously and can have fun while doing meaningful work.  No one truly appreciates someone who laughs at the expense of others, but it is very endearing to others when you can laugh at yourself.

4.     Perspective. Tragedy and pain are a part of life, but what we all must remember that there is no sorrow without joy, no grief without happiness.  You have to know one to know the other.   Someone very close to me does not know true grief.  She has protected herself from it all of her life, but as a result, she does not know true joy, either.  When my father died after a year of suffering, she was so surprised when she found me so wrought with grief.  She assumed that I would have been relieved.  I was relieved, but there was something very beautiful about releasing all that emotion that reminded me how important my father was to me.  I embrace moments of grief.  It reminds me of how rich my life really is.

5.     Faith is worth a try. I struggle with this.  I always have and probably always will.  But the more experiences I have, both good and bad, the more I open myself to the notion that this earthly life is not all that we will know.  I cannot define it and do not want to.  But whatever it is, it is comforting.

Voila!  You may find this little catalogue of ideas insightful or revolting, but please refer to #2.  It doesn’t matter.  I am happy with it!

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, a wife and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Friends and a great cause can make you light on your feet

The summer before my freshman year of high school, my older sister invited me to go on a run with her. I was a soccer player. But I had never gone for a long distance run. For fun. Just because.

We ran four or five miles that day, and it felt amazing. I was hooked. A few weeks later, I signed up for cross-country, and I ran. And ran. And ran.

It was one of the only activities that seemed effortless to me.  I could run for miles and miles. And I always had a kick at the end.

Of course, there was one reason I felt so light. I was only 92 pounds at the time.

Broad Run High School running girls - 1989

But more than that, I simply loved the experience. The wind in my ears. My mind letting go as I entered the zone. The people cheering me on. The friends I made.

Running became a different experience years later. I'm not so light and free anymore. I've been pregnant. I chase after two kids. I work a lot, and because I'm a writer (an occupation for which the motto for success is "Ass in chair"), I sit. And sit. And sit.

But that 13-year-old runner girl was still in there somewhere. I just needed a little inspiration to coax her out.

Fellow Inspired Winer Allison Greiner and her son Matthew became that inspiration for me. Last year, Allison invited me to join her in running the Disney Half-Marathon for PPMD's Run for Our Sons.

A half-marathon. Hmmm. I had been thinking about getting back into running, but a few 5Ks and the occasional 10K was all I had in mind. I couldn't imagine having the time to train for 13.1 miles. And, honestly, I had no desire to run more than 5 or 6 tops.

Cindy, Mary, Allison and me 

But a good friend had made a generous invitation. She trusted me to take on the challenge. And here's the bottom line: Life is going to get challenging for Matthew. How could I say 13 miles was too much when such a feat may never be a possibility for him?

Matthew inspired me throughout my training program. Anytime "My Body" came on my iPod, I thought of him.

"My body tells me no. But I won't quit. Cause I want more. I want more. It's my road. It's my war."

On January 12th, Allison and I joined our friends Mary and Cindy for the Disney Half-Marathon. That Saturday morning, we woke up at 3AM, hopped on the monorail, and joined more than 23,000 other runners at the starting gates. Music pumped from speakers that were taller than I am. Fireworks lit up the black sky to signal the start.

The energy of the entire experience carried me the whole way. Being there with my friends. Watching the sun rise over Magic Kingdom. Waving at the characters and high-fiving spectators and kids from high school marching bands. People were genuinely excited to see the runners and cheer us on.

Some of their signs made me laugh - "Toenails are for sissies," one read.

Others made me incredibly grateful. "I don't know you, but I'm proud of you." That sign reminded me of the many generous donors who had donated to my fundraising page and cheered me on. Friends, relatives, and some people I haven't even seen in decades got involved. Their support was humbling.

At the finish!

Allison, Mary, Cindy and I crossed the finish line arm-in-arm. Then we huddled up, heads together, silent for a few moments.

I never imagined all those miles would feel so good. Every single step was pure adrenaline and joy. I could have run 13 more. I was light once again.

Free.

Inspired.

Andrea Spencer is copywriter and speechwriter for The University of North Carolina at Greensboro as well as a professional writing consultant and a mentor to fiction and non-fiction authors. She holds a BA in English Literature from High Point University and an MFA in Fiction from Southern New Hampshire University. Andrea is a wife and mother, soccer coach and one of the founding members of InspiredWining.com. She is currently seeking representation for her novel The Promise of Water.

Sometimes inspiration is right next door

Gearing up for the usual after school shuffle from activity to activity, I careened into the driveway on three wheels. Knowing the drill, the kids were changed, had their bags packed and raced out the front door. 

Just as they were piling in the car, our neighbors strolled by out for an afternoon walk. We stopped for a quick hello and few neighborly minutes of pleasantries. Then we waved good bye and drove off. As the car hurtled down the street, a little voice in the back seat said, “Mike and Cherry are such nice neighbors.”

Smiling into the back seat via the rear view mirror, I confirmed, “Yes, we hit the jack pot when it came to neighbors didn’t we?” The car was quiet as we all reflected on the kind of neighbors who never miss a birthday,  bring over baked goods just because, watch the house when we travel, lend a hand whenever asked, gather the neighbors for parties and always give out cheerful how do you do’s.

How lovely was that moment? Right in the middle of afternoon chaos, at the prompting of my kids, we paused to appreciate life’s unexpected gifts. I propose a toast to all of those truly wonderful neighbors!  We should all be luck so lucky to have have them right next door.

Tiffany Crenshaw is a  North Carolina native, wife, mother of 2 wild and crazy kids, and an entrepreneur. She loves her family, a delicious glass of red wine, girl time and the occasional spa treatment. As an enthusiastic member of Wednesday Night Whine, she rarely misses a “meeting” unless she’s traveling for business. She is the President and CEO of Intellect Resources, a recruiting and consulting firm specializing in the healthcare IT industry.  

Confessions of a woman who doesn't like to shop

Call me crazy- but I do not like shopping for clothes. 

--I don’t like the process of trying things on or taking the time to find things that fit. I'm lazy like that. 

--I struggle with feeling comfortable shopping in stores that I perceive to be “chic” or “ hip”.  Truth be told, even though my children would love for me to fall into those categories- I really am quite ordinary. 

--I also think clothes can be too expensive. Therefore, I find myself looking for sale items or good deals -- even when I would prefer something more expensive.   

The whole process makes me feel self conscious and inept.  I don’t know what style to pick, what color to choose, or if it is a good “ piece” to add to my wardrobe.

Well, last Thursday I attempted to shop for clothes. I headed to Friendly Shopping Center and commenced my normal routine- start at Banana Republic, then The Limited, Old Navy, The Gap, Belk and last, Macy’s. Just when I thought I was going to leave empty handed--- I met Ms. Janice Paschal at Macy’s. Unbeknownst to me, I saved the best for last!

Janice saw me coming with my stack of clothes and offered to find me a fitting room. From that point on, she reminded me that excellent customer service often seals the deal.

1) She introduced herself and made eye contact with me.

2) She asked my name and offered to help me get other clothes.

3) She followed, calling me by my first name and asking if things were going well.

4) She assisted me with the belt and zipper.

5) She offered accessorizing help----i.e. what color shoes to wear, what style of jewelry.

6      6) She discounted my purchase with both a Macy’s charge and a coupon.

The wonderful Ms. Janice Paschal. I'm betting local shoppers recognize her.

Best of all, Janice made me laugh and feel comfortable. At one point, I could not figure out how a belt was supposed to work with the dress I was trying on. It appeared to be positioned at the top of the zipper on the back of the dress. I asked if she could help me figure out how to tie it. Janice studied the belt and draped each side over my shoulder. She then proceeded to tie it around my neck (see picture below). At the same time, she and I both burst out laughing!  Obviously, that wasn’t what the designer intended! After much thought, we figured out that the belt was stuck in the top of the zipper and in the wrong place all together. It was to be tied underneath my arms and around my ribs.

After the morning of shopping, I ended up buying only one item--the dress seen in the picture with Janice. Regrettably, that was the only item that fit. However, I don’t feel like my shopping experience was for naught. In fact I gained so much more than a dress. I was inspired by Janice Paschal and reminded of what lies at the heart of excellent customer service -- sincerity, the desire to help others around you, and the value of taking your work, but not yourself, too seriously.

I'd love to hear from you. What shopping tips or experiences do you have to share? Or just simply tell us where you found an unexpected moment of inspiration -- because the possibility of being inspired lies around every corner.

Alexis Williams may not be a good housekeeper and she’s even worse at being the tooth fairy. But she loves laughing, traveling, spending time with family and being a part of a community that makes a difference. Alexis is officially Inspired Wining's “go-to girl” for just about everything from developing community partnerships to securing our venues for Inspired Wining on Location events. A wife, mother of 3, a church and school volunteer, Alexis is the sharp-witted sweetheart of the group.

Note to self

Recently, a friend of mine posed this question on Facebook:  “If you could go back in time and tell a younger version of yourself just one thing, what would you say?”  

This inquiry really got me thinking.  If I could send my Younger Self a list of many things to avoid, they would include the obvious:  don’t waste your time with that relationship, don’t wear that outfit, and don’t ever do that to your hair.  Of course, there would be some more practical life pointers as well:  save more, spend less, and take good care of your health.  

But, if I could only say one thing, I would have to choose my words carefully.

As I looked back and tried to determine what nugget of wisdom would be most beneficial to younger me, it became apparent that it is something that I still struggle with today.  Maybe if I had learned it at a younger age, it would be second nature by now?

"Enjoy the little things, for one day you may 

look back and realize they were the big things."

                                                                                            ~Robert Brault

So Younger Self, here it is:  

Learn to make the most of today, and find something about it to enjoy instead of constantly looking forward to tomorrow, next week or next month.  Don’t get me wrong  Younger Self, you have been great at making memories and making the most of the big days, the big life events:  the wedding day, the amazing travel, the first time each of your children were placed in your arms (yes I said children - as in more than one - don’t freak out Younger Self).

However, you have not done all that you could to make the most out of the everyday.  If I/you/we had a dollar for every time we have had the thought that life will be better or easier or somehow more memorable “after” – after I get thru this week at work, after our schedules slow down, after the kids are out of school, etc./etc./etc., we would be very, very rich by now.

 

Of course, it is important to stay positive and to be focused on the future.  But, in the midst of all that forward thinking, the current day and all it has to offer tend to get lost in the four loads of laundry that need to be done.  

Now Younger Self, I am not suggesting that every day is going to be sunshine and rainbows because that is not the way life works.  What I am suggesting is that if you look hard enough you can find something to celebrate, appreciate, or make memorable in even the darkest of days.  Sometimes it’s just an encouraging word from a friend or a hug from your child, but those little things are worthy of special memories too.

So Younger Self, enjoy today and don’t wait for tomorrow to make those memories.  Drink that bottle of wine that you are saving for a special occasion, wear those special heels that make you feel fantastic, and take the time to tell your friends and family how much they mean to you because “after” is not guaranteed to any of us.  

Michelle Gauffreau is a customer service consultant for Broadcast1Source and  a founding member of Inspired Wining. She is also a wife, a mother of two and an active volunteer in her community.