Being the makers of our future

One of the hardest parts about being a parent of a boy with Duchenne is worrying about how the changes and hardships will affect our son emotionally.  Just like any other parent, my primary goal is to ensure the happiness of my children.  As the years go by, I understand that my fears are just that – my fears.  I look at his disorder from the perspective of a healthy adult who has lived half of her life already.  It is impossible to imagine my life as a handicapped individual.

Matthew is not yet handicapped, and God willing, he may never bear that title.  He has, however, in his short life, endured a number of difficulties, treatments and limitations.  The fact is that he has navigated all of these experiences beautifully because they were his alone and a child has the benefit of owning who he is much easier than an adult can, in most cases.  

Duchenne will always be a part of who he is, but that is not necessarily a tragedy.

 

The keynote speech by Luca Buccella at the PPMD Annual Conference this summer illustrates this point beautifully.  As an adult with Duchenne, who has endured many of the changes that DMD brings, he still has a positive outlook on life and his purpose in life.  For me, his words are soothing and healing because they resonate hope and strength for our boy and our family. I share them with you:

Hello everybody, my name is Luca Buccella, I am twenty-one, and I'm here to tell all the boys with DMD and their parents, that a future is there. And I can say that honestly, because the future that I started planning when I was eight has now become my present. To tell everybody that even the "less fortunate" can have a full life.

In many charity campaigns - at least in Italy, I don't know if it's the same in the United States - we hear the expression "less fortunate than us" referring to disabled people. Well, I feel I'm fortunate, or lucky, in many fields. And then, is there such a thing as fortune? Actually, fortune is useless without a strong will. But with your will, fortune becomes mere clay, that you can reshape and transform with your bare hands, just as you wish.

We must be the first to consider ourselves as the normal people we are: the revolution must start within us. But it's not because of our disability that we must take things for granted: we must earn our chances, nothing's free, we have the same rights and duties of every other human being.

Our bodies are handicapped, not our souls: DMD doesn't determine the people we are, it doesn't make us better or worse than anyone else. But it's a part of ourselves that we must learn to live with. It doesn't represent what we are, but it may be considered as a friend, sometimes annoying, with whom we must learn to coexist despite the fights. It's not a part of ourselves, but it compenetrates us, and, if lived positively, can even make us better people.

Just remember that it's not the disease that makes us better, but the way we face it. We must never think that our disability makes us better than others, or even special. We are unique, but that's just like every other human being. We don't want to be seen as pure spirits, light bearers with our soul tempered by years of sacrifices: our disease doesn't determine our future, we have to do it. We can be anything we want to be, if we convince ourselves. And to become the people we want to be, it is essential to start planning our future.

And on this specific aspect, I'd like to address myself particularly to parents. You are the first who must raise your children giving them a certainty that a future does exist, and so it must be planned and considered. Because just like everyone else on planet Earth, since the very beginning you must start to build the foundations on which to construct your future.

I've seen far to many people giving up, thinking there was no future for their kids, that they would never reach a certain age. But I believe that this is something you can say for any individual, because no one has the certainty of what's going to happen tomorrow. Abandoning every hope, convinced that there is no future for DMD patients, would be like stopping to drink and eat, because eventually life is going to end and nothing can change that. Whereas life must be planned, dreams must be pursued, and human relations must be cherished, no matter what. Because otherwise, at the age of twenty, you find yourself with no passions, no interests, no love: and so, you don't have a present.

I owe my parents the fact that I've never felt different: so, as they did, allow your children to take risks, to fail sometimes, to savour life in every aspect good or bad. You'll see the results, and your kids will be grateful. Just remember that first we must realize that we're normal and we can have a full life, than we can show it to the world. You cannot live your life hoping in a miracle, in a prodigious remedy that is going to fix everything.

In this last few years, research has taken a giant leap forward, trials on men has started, showing that maybe a cure is not so far away. But what would happen if you spent your whole life just waiting for a cure that will finally allow you to live what society calls "a normal life", it the treatment doesn't reach you in good time? You would have lost a life just waiting, not living. You must become aware of the fact that you can live a full, happy, satisfactory and meaningful life, that maybe the our disease isn't all bad after all.

We must try and embrace our condition, and then we can start to see upsides. Believe me, they are just as many as the downsides. As my friend Pat Moeschen likes to say "Membership has its privileges". And so, we have reserved parking, we don't have to queue at amusement parks, movie tickets are less expensive. In my country, people think twice before insulting you to your face. And if they do so, we can "wheel" them down! And, in a relationship, a disabled person has the absolute certainty that the person with whom he's involved, really loves him for what he is.

Once we have learned that our disability it's not an obstacle in the pursuit of happiness, if the cure were to arrive, it would still be great. But if this weren't happen, it would not be a problem. Because we had understood that we are, and always be, the makers of our future.

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

Red wine, yoga and girl time

As a guest panelist at a conference last month, I listened as one of the attendees posed the question, “How do you not burn out?”

I was the first of the panelists to respond. "Red wine and yoga," I said.

The room fell silent as the attendees chewed on that thought and then a slow laughter spread. But, I held steadfast. “No, I’m serious. I go at such a fast pace, juggling home/work/marriage and pushing our company to the limits that I need a consistent outlet to catch my breath and refresh. Red wine and yoga are my outlets.”

As I was leaving the conference and dashing off to a shortened girls weekend, I pondered the thought
more and kicked myself for not adding girl time to that list. My mom and girl friends reenergize me whether it’s just by being there to listen or give advice or to cut up and de-stress with laughter.

And you know what? During that girls weekend, we laughed and laughed. It felt great. The laughter started in a gift shop where we found a hilarious line of gifts and cards with circa 1950's and 60’s photos with funnies on them.

A magnet that said, "Wine is proof that God loves us and wants us to be happy."

Another magnet --- "Behind every great women are lots of women."

Cards -- "Grab the toolbox, let’s get hammered."

Cocktail napkins -- "I’m on a liquid diet and it’s going well; I’ve lost two days so far" and "You don’t have to put yourself down; we’ll do that when you leave."

Of course I loaded up on chatskis for the special girls in my life, but I thought all of you, too, would enjoy a chuckle. Hope it will de-stress and energize you if only for a minute.

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. 

I’ve had it with being too busy. Who’s with me?

I think we're facing an epidemic -- everyone seems "sick" with busy, over-scheduled lives these days. Look around and tell me who hasn't been stricken. I’d say it’s a stage of life thing, but even the retired people I know seem burdened with too many to-dos.

How many times in a given week do you or those in your circles comment about how busy life is? We’re all so busy it seems that all we have time to talk about is how busy we are. In fact, calling our lives “busy” isn’t even accurate anymore. We’ve coined a new term for the level of insane over-scheduling and to-dos we take on; we call it “crazy busy.”

“Hi, Sarah. How are things going?”

“Good. Crazy busy, but everyone’s doing well. How about you?”

“Same. Slammed at work. Hectic at home. As a matter of fact, it’s so great to see you, but I need to run. I had to leave my yoga class early so I could pick up Katie from soccer and get her to the sitter. Joe and I both have meetings tonight. Let’s schedule a lunch soon when I’m not so crazy busy, okay?”

“Yeah, and this time we’ll actually go!”

I've had conversations similar to this. Have you? Sometimes I think I even see a call for help in a friend's smiling, but frantic eyes. "Everything's great! Please call me an ambulance right now because I think I'm going to drop right here in Target," they seem to be saying. That’s not just busy. That’s crazy busy. When we can’t stop and talk to a good friend for more than a few moments without looking at the clock. When we give our children a hasty kiss and move them from one caregiver to another, promising to play Candy Land tomorrow. When we don’t share with our spouses what’s going on at work because there is no time or energy to have a meaningful conversation about our days beyond our plans for managing the next day.

Am I exaggerating? Over dramatizing? Or does this sound familiar to you as well?

While it’s possible I could use some tips on how slow my life down a bit (maybe even an intervention), I don’t think I am alone. On one hand, it seems that I have a number of friends who appear to navigate through their own busy schedules with more grace and ease than I do. But I have an inking they are just as burdened, behind and bewildered by the busy-ness.

The moments when I marvel at my friends who are managing more children or more work responsibility or more charities, I remember the saying that some wise person once said (I was too busy to look up exactly who): “Don’t compare your inside to other people’s outside." 

There’s a lot of truth to that, isn’t there? I bet you any money, the laundry pile at 9 out of my ten closest friends is just as high as mine right now. I bet, like I do, they have hundreds of pictures waiting to be printed. Birthdays that creep up on them before the gifts are bought or the cards mailed.

Even so, that’s little solace when my overscheduled weeks and overflowing to-do lists leave me feeling as though I’m missing out on my real life – the one I want to look back on fondly and proudly, not with regret.

How does your crazy busy life affect you? To me, it’s a feeling of being consumed. My time, my thought process, my creativity, my ability to execute all of the ideas swarming around in my head – all of these are tapped out. And yet there is so much more I want to do with my life, so much I want to give to others.  

I don’t want to be busier; I want to be more productive.

Me...before I knew what "busy" meant.

I want to finish my novel (again) and query agents.

I want to cook more meals, healthier meals.

I want to spend more time soaking up my children’s voices, the feel of my son’s little hand in mine, the last years of my daughter’s girlhood.

I want to better nurture my marriage so that our eventual empty nest won’t feel so empty.

I’m tired of doing more. I want to be more – for people I love and even for people I’ve never met.

Now before you ask me if I would like some more cheese with my “whine,” let me say this: I do have hope that I can better master my schedule with the right changes. I can continue my efforts to live more in the moment. And, indeed, I have a lot of meaningful experiences with my family, in my career, and through my volunteering. Inspired Wining is case in point. I’ve been involved for six years now, and I can very truthfully say, every single moment has been enriching. I hope you have people and projects that fill your life with meaning, or at least help you balance out, in some way, the challenges of being crazy busy.

I’d love to hear from you.  I plan to write a “Part 2” to this post in the near future and share tips for avoiding the pitfalls of being too busy. Or simply post a comment and tell me what you would do if only you had more time. Maybe just the act of expressing it here will give you the idea or fortitude you need to make it happen. (And the same goes for me!)

Just do it...

I'm not one to give motivational pep talks, but something about writing my first blog entry has me inspired.  "Why?" you might ask. Because I think Inspired Wining is on to something. And I want to share it with you.

One of our missions is to motivate women to raise funds and awareness for the charities of their choice -- while we raise money for Parent Project Muscular Dystrophy.  Whether it is fighting homelessness, raising breast cancer awareness, preventing animal cruelty or saving the whales, there are so many causes out there to connect to and so many ways to make a difference. And we believe that you can. 

I know we’re all busy.  Super busy.  Just juggling work, home, family and other responsibilities can leave even the most organized of us wishing we had 48 hours in a day.  It’s easy to convince ourselves that we’ll get involved and make a difference when things settle down at home or after we get through the next big project at work.  

But we all know there is never a perfect time to take a leap into the unknown. And that "unknown" just might be one of the most rewarding experiences of your life.

Some fundraising and awareness efforts are time consuming.  Some take committees and months of planning and a small army of volunteers to pull off.  But sometimes you can make a big impact with minimal effort and just a little organization.  Plan a Girl’s Night Out at a local establishment and ask the owners in advance if they’ll consider donating a portion of the sales to your charity.  Host a birthday party for a friend or loved one and ask everyone to bring a donation for your charity instead of a gift. Contact your charity of choice and see if they need someone to stuff envelopes, put together informational packets or help out with one of their already planned fundraising events.  

The great thing about joining Inspired Wining is that we have the resources and ideas to help make fundraising seem far less daunting. So if you've had that nagging thought that you want to get involved, but you aren't sure where to start, turn to Inspired Wining. Or if you're already a fundraiser and you want to learn how to increase awareness and create fun, successful events, we're your girls. Let us support and inspire you the way we have each other.

Some my most meaningful experiences have involved fundraising for the cause that I share with Alexis, Allison, Andrea, Lisa and Tiffany.  The friendships we've forged and the accomplishments we share are some of the things I am most thankful for in my life.  

Just do it.  Nike was on to something when they developed that tagline. It's good advice for anyone who has the desire and the drive, but just needs to take the first step. So, I encourage you: Take the leap and get involved. Go for it. That's a true Inspired Winer, someone who is willing to take a step of faith for the benefit of another and then raise her glass and celebrate a job well done.

You know we'll be "cheering" you on.

Michelle Gauffreau is a customer service consultant for Broadcast 1 Source and  a founding member of Inspired Wining. She is also a wife, a mother of two and an active volunteer in her community.