lajendi

Commitment addendum

Yesterday I posted about commitment. Today as I ate breakfast I caught up on reading the newspaper. There is a 5 part story about the football program at a local high school. It illustrates well the monumental problems that teenagers in our area face, but more applicable to my post yesterday is it's focus on the importance of commitment to a strong team. 

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The new football coach at the high school, which has been without one for 5 months, is making his quarterback choice not based on talent and ability, but on dependability. 

"'What's going through my head right now?' McDowell, 29, asks. 'I can't count on Rodney and the other kid's been there at practice.'"

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Further in the article Coach McDowell explains his focus on commitment. 

"Before he left California, McDowell asked for advice from successful coaches in Sacramento who had coached tough, broken kids. They told him to instill commitment in them by setting one rule for everyone: If you miss practice without a valid excuse, and without telling your coach ahead of time, you will not play. 

"McDowell found out in the first few weeks how much he would need that rule. Attendance was so spotty, he and his assistants worried whether they would have enough players to field freshmen, junior varsity and varsity teams."

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The player that is being passed over for quarterback is a college prospect, with teams interested in talking about recruitment before the season even started. So it is stunning that he readily admits he would rather work and chill with his friends than meet the requirement of commitment set by his coach. So the starting quarterback will instead be a 16 year old sophomore who shows up to practice. 

"Without trust, there is no commitment.

Without commitment, there is no winning. 

Without winning, there is no pride." 

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It is undeniable that these players have incredible obstacles to playing football. 

"Some students.. have to balance practice with their fatherhood. Others.. can't come to practice at times unless they bring their younger siblings. 

"[One] who had to send his report card to his imprisoned father for permission to play football. [Another player] misses most of summer practice because his family moved out of the district at the end of the school year and then comes back in mid-August."

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Despite the obstacles they face, the fact remains that commitment is necessary for success. The team has  a losing record, in fact they've lost every game, and players are quitting.

 "[Coach] McDowell comes to realize that success at Dieruff, at least this year, cannot be measured in touchdowns. It will be measured in the character of those who remain Huskies." 

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This is a great real-life illustration of the value of commitment. 

Thanks for... the EDNF

Anyone who has been reading my blog for long knows about my health struggles. Some times are better than others. Right now I am doing very well, but it takes effort everyday to keep my joints healthy and pain-free. In my efforts to find a name for what haunts my body I found the Ehlers-Danlos National Foundation. 

While I have not been officially diagnosed I feel that this syndrome is the explanation for my health issues. Finding a doctor who thoroughly understands this condition is difficult. I hope that as the EDNF is supported they can do more to educate the medical community, support research, and reach out to others who may be struggling without answers. I am grateful to have stumbled onto their website, it has helped me find answers and a measure of peace about my physical limitations. 

This morning I received an email containing a personal story about a young girl with Ehlers-Danlos. I hope it will provide another useful perspective on the condition. 

The clock showed less than three seconds, and the noise in the gym was deafening. Our side of the bleachers was chanting the team name as the ball was inbound to my 14-year-old stepdaughter. Six feet tall already and beautiful like her mother, she was the star center of the elite team. A pending invitation to play on an All America team lay on the kitchen table at home.

As she went up under the basket, made the shot and drew the foul, the crowd cheered. The game for the regional championship was tied and she stepped to the foul line with one second left on the clock and made her basket. The room erupted in cheers and she was swamped by her team mates rushing her off the bench as her name was echoing off the rafters.

Eighteen months later, it was absolutely silent in the hospital room. The enveloping quiet was broken only by the wracking sobs as she leaned on her mother’s chest and cried. I blinked back tears. Her third surgery found that the earlier surgery had been for naught and that her hip capsule had stretched back out. This confirmed the likelihood that she had a disease we had been told was called the Hypermobility form of Ehlers-Danlos syndrome. Her athletic career was over. She cried because all her dreams had derailed. She cried because the trajectory of her life had suddenly changed and her hopes, her aspirations and even her self image had been taken. She cried because she had been told there was no cure. Gone were the congratulatory crowds. We were, at that moment, three people very much alone in the world.

My wife was determined to learn, to understand, to cope through knowing. She mentioned to me a week later she had found a website for the Ehlers-Danlos National Foundation. Through it she was rapidly getting educated. We became aware of a community of sufferers. We discovered that there are far worse forms such as vascular EDS. As parents, we were horrified by VEDS and secretly thankful that Maggie did not have this form of the disease. My wife found new friends with whom she corresponded and spoke. We networked to find expert medical practitioners in Maryland. At one point, our family doctor told my wife, “You seem to know more about this than I do. Tell me what I need to learn.” She gave him the Medical Resource Guides and articles from the EDNF website.

We realized we were not alone. We were part of an extensive population of patients and families of patients who were suffering from EDS. The support and the information supplied by EDNF were a vital part of our story of living with EDS.

Earlier this year, I joined the Board of EDNF determined to help the organization and give back some of what it had given to us. I have heard so many stories far more heart breaking than our own. The Foundation is also struggling right now through difficult economic times and only your support can save it. Many non-profits are failing and we need your support so we do not.

Please help sustain our community so it can continue to educate caregivers, patients and their families and carry on the call for further research funding. If you can only give $10, $15, $25 or if you are fortunate enough to be able to give more please do, any amount will help a great organization helping families like ours. Please click below to donate, and thank you for your support.

Eliot H. Chack
EDNF Board of Directors

P.S. Maggie is now a freshman at St. Joseph’s University in Philadelphia. She cannot walk great distances without pain but she perseveres. We know that some day she may be wheelchair bound. She is studying psychology as it is a care giving profession that is not physically demanding. She has a great personal strength forged in adversity. She still gets a little weepy when she watches a basketball game, but we know how lucky she is to be doing this well.

Click here for more information about Ehlers-Danlos syndrome.

Hinge Special Editions are published and copyright ©2009 by Ehlers-Danlos National Foundation. To respond or to submit your own story for future editions, please e-mail hinge@ednf.org. Remove this e-mail address from future e-mailings by clicking here. To add an e-mail address to our list for mailings, send us an e-mail with your name and e-mail address.

Thanks for... Exercise.

No, I have not lost all my marbles. I do like to exercise. Oh, I don't like the discomfort (AKA- pain), the stinky sweat, the changing of clothes, the communal nature of the gym, or feeling stupid (I wanted to link to my post about farting in yoga class but couldn't find it) and awkward. But all of that aside, I like exercise. Because of all those unlikeable things about exercise it can be hard to get started and stay going. It is well worth it though. Somehow I incorporated exercise into my life after J's birth and kept it going. That was over 7 years ago. 

It has been a week since I had a really good workout. I've stuck with my daily PT exercises (mostly), but a good 45 minute bike ride had to wait until today because of sick kids. That is one of the biggest de-railers of a good routine! I knew I needed it because my joints were achy, my attitude was bad (DH's late work schedule hasn't helped), and my emotions were strained. 

During my workout I sent emails and read a book, and before I knew it I was sweaty! That's the good thing about riding the stationary bike, I can distract myself. The treadmills at the gym have TVs so there is a distraction there too. But really my favorite thing is to exercise outside. I love being outside and it feels wonderful to move through nature under my own power. It gives me time to think through things, to sort out life. It is the best way for me to meditate, otherwise I get distracted and can't stay focused. Exercise feels like a realignment of spirit and body. 

This morning I had a follow-up visit with the Neurologist PA. Even though my headaches have improved, he encouraged me to take a pain reliever at the very hint of a headache, to discourage an increase in severity and frequency. I told him I was all for the general theory, it was the practice that is hard. Taking care of kids and home all day long I'm not focused on myself, it's all outwardly focused. Even eating lunch is shoving in a few bites while cajoling baby to eat. So realizing that I'm getting a headache can be difficult, usually I realize I have one when I yell at someone and my own head tells me to shut up! See, my kids can probably recognize a headache in mom better than she can because my irritability increases. This is another reason exercise is important to me, it is my way of telling my body that it does have some of my attention, when the rest of the day I ignore it (I do need to improve on that). I communicate to my cells and neurons that they are a priority and I appreciate the job they are doing. So I throw a few endorphins their way.

Endorphins, they are a major bonus to exercising. Take time to enjoy your endorphins next time you exercise, it might make you more likely to exercise again. 

I appreciate that God has given me the tool of exercise to keep my body and spirit in working order. 

The Orthopedist says...

I'll get right to the chase, the Readers Digest version, because today was the first day of school for the kids and I'm beat (if they went to school, why am I tired?).

Let's start with the loose joints. He pushed my knee cap way over with an amused look on his face, "This doesn't hurt?"

"Nope"

"Usually that hurts."

How am I supposed to know? This is the only body I've been hangin' out in. No one told me. Then as I laid on the table he lifted my leg by the toes,

"See how your leg kind of bends backward at your knee? It isn't supposed to do that so severely."

"Oh."

"Let's take some pictures."

In a flash he was gone and they were taking me to the x-ray room. They gave me some cool paper shorts to wear. I lie, they weren't cool. This fool was carrying her pants and  purse while wearing those paper shorts around the office. Thankfully I wore sandals, not running shoes with striped socks. Or heels, now THAT would have been ridiculous!

I wish my iphone camera was operational because they left me in the room with my x-rays forever. I could have shown them to you. After giving them a good once over, a good twice over, a good thrice over, I pronounced everything hunky dorey and thought I would be sent packing. The doctor disagreed with me, something about his medical training that gave him a more informed opinion, I guess.

(not my knee)

He said my knee cap (patella) is rubbing against my leg bone (femur), causing pain and even some bone spurs on the under side of the knee cap (patella). The technical term for this is Patellofemoral Syndrome. From what I have read it is the most common injury for runners and should be remedied with physical therapy. I think it is uncommon for someone to have it in both knees at the same time, which is why I threw everyone off initially.

My knee caps also ride high. I bet that's fun for them.

I have a ton of questions which the good doctor avoided, referring me to the physical therapist. That party will start next week. Order up the balloons and cake, I like buttercream frosting.

Iron Pigs

What exactly is an iron pig? The mascot for the Allentown minor league baseball team. The idea is that it pays homage to the steel producer this area used to be. I can't remember the reason for the pig, but I could come up with some unflattering comments about the girth of people who regularly dine on ballpark food.

There was a big hulabalu over the mascot's name - they had a contest for the public, everyone sent in names and they chose their favorite. Turns out the name they chose was a racial slur (one I had never heard of before). So there were apologies all around and they tried again. I think his name is Ferus, which is supposed to, again, be about iron or steel production. I'm sure every person in that stadium knows exactly how it relates, right?

DH was first to respond to the CFO's email offer for 5 tickets to the game. Exactly the number we need, since Baby doesn't need a ticket. It was a beautiful night to be at the ball park. Would have been even better if we didn't take a 2 year old with us, but they played at the playground. The game started at seven so we had to leave before it was over, but the game wasn't that exciting anyway. The ATM machine was out of order so we couldn't gorge on that ballpark food, better for my waistline or you'll be calling me an iron pig. A great night with better seats than we'd ever be willing to pay for.

It's fun to get a surprise like this every once in a while.

 

three monkeys in a row eating blue cotton candy

 

what ball?