Born With a Broken Heart

 

As anyone who reads my blogs regularly knows, we added a new member to our family last August, a little Pomeranian puppy named Sparky. We had decided that Phil needed a companion dog, and our two monsters, Shadow the Newfoundland and Dante the Wolf-Hybrid were just too intimidating and clumsy for him. I believe that all things meant to be come in time, and responded to an ad on Craigslist: Special Home Needed for a Special Puppy. Reading the ad and subsequently talking to the breeder, we found out that Sparky was born with a broken heart. His puppy exam found him to have a rather severe heart murmur. What was she to do? Put him down? Sell him dishonestly without a warranty? Two wretched options, when you looked into those shiny, mischievous black eyes of his. Is it possible that someone would want this little pup, special needs and all?

I looked at my son, reclining in his hospital bed, recovering from surgery for his g-tube, and suddenly knew beyond a shadow of a doubt that this was the pup for us. We picked up this little bundle of affectionate fur in a McDonalds parking lot, and it was love at first sight. Nothing about him would indicate that he had any problems at all. Philip christened him “Sparky” because of his firecracker disposition, and probably to stop me from calling HIM Sparky when he got sassy.

The first night he was here, we set him on Phil’s bed to say goodnight, and he promptly peed on him. After a good laugh, (and a linen and PJ change) we decided that Sparky was just claiming his territory. Lucky Phil. Happy to say, he was potty trained in record time, and integrated well into our family, including befriending the monsters outside with Napoleon-esque confidence, apparently oblivious to the fact that he would be a mere hors de oeuvre to Dante. He delighted us with his intelligence, and quickly learned to come, sit, stay, lie down and dance. And it was very easy to forget that Sparky had any issues at all. At six months, he had become the kind of dog that every pet owner wants – a well behaved, friendly, fun, lively and altogether pleasant animal.

In November, my daughter’s work schedule picked up, requiring long hours, and she asked if we would watch her dog, Lucy, for a month. Now Lucy has been part of our extended family for better than five years, a spunky and loyal Rhodesian Ridgeback/Catahoula hound mix, and we were more than happy to have her here. She and Sparky hit if off immediately, and soon became fast friends. We had our hands full with two house dogs and two yard dogs now – a little pack that provided for us far more entertainment, love and companionship to compensate for their care and feeding. And it was a happy time.

But Lucy’s stay was temporary, and she went back to Chicago with my daughter after Thanksgiving. The day after thanksgiving, we were all a bit over indulged, per the American Tradition of overeating and drinking on this festive day, and so the fact that Sparky lacked a little spark, well, we just figured he felt the same way as we all did. On day two, however, he seemed quite depressed. No trying to chase our stocking feet around the living room. No challenging Dante to a sparring match, which he knew Dante would let him win. No mock growling or wrestling with his stuffed toys. Just a sad look in his eyes, and a curly tail that unfurled and hung down like a flag without a breeze.  Poor Sparky…surely he just missed Lucy, his constant companion for the past few weeks. He still ate, just a little less. He still had all his bodily functions working in proper sequence, so there was little reason to think he was ill. But it cropped up in the back of my mind that he was, after all, born with that broken heart. Could this be a manifestation of that? We did not want to think so – and so extra cuddling and affection was in order from everyone in the house, and in another day or so, he seemed to come around to his old self. Perhaps a bit more subdued, but Sparky just the same. And all was well again.

Then a few days ago, Sparky slowed down yet again. His friend Lucy and her new companion, a Boxer/Doberman puppy named Bea had come to visit with my daughter, and he had been his rambunctious self, trying his best to “keep up with the big dogs” for the weekend. And after they left, again – he seemed fine. But then, the downhill spiral started again. We figured it was just the companionship issue again – but this time, each day brought a new concern about his health. And then he started having trouble breathing. And then he stopped eating. And his little ears collapsed. And his curly tail now drooped.  And his black onyx eyes lost their sparkle. And I took a trip into the twilight zone of that Broken Heart.

What was I thinking in taking on a puppy with a condition that in many ways would mimic the disease process in my son? I did not choose Duchenne – it chose us. But I chose Sparky. I chose a broken heart. Somewhere inside, I must have known the redemption that comes from something so painful as a broken heart.

What is a broken heart? A metaphor, usually, not an actuality. It’s a picture that reflects the pain that we feel in our body over mental and spiritual pain. That hot, crushing feeling in your chest when you can do nothing but watch as part of your world unravels. The shock of emotions as they swim their way to the surface, only to find it has turned to ice – and they struggle and die inside you. And something gives – and it feels for all the world like it’s your heart. A sensation that has you clutching at your chest, just trying to - what? Stop the breaking, perhaps.

But this little heart was born broken. Yet like the most admirable of the broken hearts, it has risen to the occasion of life. The fact that it cannot keep up with all the life that is flowing through it does not stop its desire to LIVE, and live it up! To wrestle down giants, to dine on fine meat, to enjoy a great adventure as much as an afternoon snooze. To give love and to accept love in return.

But most admirable of all, this little broken heart has accepted the fact that it is broken. How many of us know broken hearts that just never seem to mend? Perhaps our own – time does not heal the wound; joy seems lost and gone forever. No way of binding this one – it’s broken for good. 

Oops…you want to read that last line again? Yes – we use the term all the time – FOR GOOD. Meaning, forever or permanently, I suppose, but the word stands literally: for GOOD.

“It’s over, for good.”

“He is gone for good.”

“This heart is broken for good.”

And when I can put aside all the subjectivity of my life, I am forced to acknowledge that this is a true statement – for all that happens to us, if we will but maintain a 5-year perspective – it all happens for the good of who we are, and who we are becoming. This is not to say that our tragedies ever become pleasant – but that in 5 years you will be able to look back and see that some positive result came from your heart break – and THAT is good.

And so in the quiet of the morning, I looked at my poor, poor puppy – and see what I know to be the manifestation of his brokenness. And I am thrust into the parallel universe of my own son’s brokenness. He, too, was born with all the vigor of a healthy baby boy. As time went by, there were some signs that perhaps all was not well, but we were too busy just living life and loving him to really notice much. And when the tests came in that Philip had Duchenne, well, in all honesty, this did not rock my world all that much at that time. He was like every other kid in almost every way – just a little slower. And we tucked the diagnosis into a little box and stuck it in a corner and tried to forget about it. And while the disease progression is gradual, the deterioration comes with such face-slapping suddenness and roller-coaster-drop sensation all at once. Your stomach lurches, and your heart races, and your head spins with the reality that a life-threatening condition can arise out of nowhere. The diagnosis rips out of the box and expands to fill the room like a river raft, pinning you against the wall and displacing everything in your room. You want to cry. You want to fight. You get angry. And above all, you just plain and simple don’t want this to be happening. Not yet. Not now. Not EVER!!

But today I realize, Philip, too, was born with a broken heart. Not physically, perhaps – but a body that will try to break his heart,  for good. This, in turn, is breaking MY heart, and hearts of the people who know and love Phil,  for good. In every way that it means – it’s for GOOD. I may not be able to tell you today, or tomorrow just how this is so – and I may be thought macabre or morbid or fatalistic to even say such a thing – but this is what I believe. I don’t think the details are all that great, quite frankly many of them suck, and I complain and lament about them plenty! But to suggest that Phil – regardless of his condition of Duchenne – is anything less than GOOD would be an insult to everything that is my life.

I am not saying that Duchenne is intrinsically good. I am not saying that I do not hope for an effective treatment or even a cure.  It’s just that I have accepted the fact that we have a broken heart from the get-go – just like Sparky. I took that pup knowing full well he was a heartbreak on our horizon, and I think I would take my son, too, even if I knew he had Duchenne before he was born, especially if that was a decision which was made from a place higher than this earth.  And again, I believe it was.

Through the generosity of a friend, we were able to take Sparky to the vet, and find that he does, indeed, have 3^rd-4^th degree heart failure. Medications will be administered, and 24 hours later, li’l Sparks is on a little rebound. We have only been told that medication will “prolong his time and keep him comfortable”.  Heart surgery is out of the question now, at 5-digit minimums. But what we can know is that he will have the best life possible in the time that he is with us. He will be loved…and he will continue to be a blessing to our lives – in spite of his broken heart – or ours.

Living in the Moment

When I write, I never know if what I’m producing will result in a journal entry, written to and for ME, or something that could perhaps be material to share, written to the Third Party Abstract – or you – or her – or him…it depends on the moment.

So here I sit today, with something precious called “time” which came about rather unexpectedly. I can’t go to the store as planned today because I have no one to care for Phil, so I’m at home, and Phil is still catching up on his sleep deficit from the week. It’s cold, and it just snowed last night, and it seems the perfect time to sit down with the old clunky laptop, my morning coffee and cigarettes (having fond memories of my Grandma Straus) and write. Now, understand, I have a whole word document called “Blog Titles”, of things that I intend to write about, but don’t have the time to right then. So, I have a file of phrases and topics I’d like to mint into my two cents. But today, I am having a hard time getting past this seemingly insignificant moment – waiting for something important and meaningful to happen to write about.

It’s been a hard week. Trying to resuscitate our faltering business has us at the store two days a week now – which means trying to find someone to come and be with Phil from 2:30 to 5:45 – and the powers that be have approved those hours and will pick up the tab. But try to find a caregiver.

That’s a frightening thing, the fact that no one wants to be one. Take a look around you, Boomers – do we think we will escape the need forever? How close to home does that little bomb have to hit before we realize that we have kinda failed to prepare our kids for this potential reality. Oh, I’m not accusing us of raising a generation without compassion – but it’s so sanitized. Just like our food. Just like our homes. (With the exception of mine at this time!)

Ask any kid who is job hunting why they don’t go to the nursing home and apply to be a CNA. There is clearly a shortage, and the pay is not bad. They will quite bluntly tell you, “I don’t want to wipe butts.”  And why would that be? What have we taught this ultra clean generation? That bodily functions are gross, and to be hidden behind closed doors. That fact that human beings sweat, and stink, and leak, and piss and shit, and fart, and deteriorate, and break, and ooze, and produce phlegm, and spit and cough. We have bad breath and rotting teeth. We are covered in skin which produces varying amounts of oils, and have zits and boils and sores. We are bathed in bacteria. We gain and lose weight, we sag and loosen up as we age. This is the way we came. This is what we all live with, and this is how we leave. And we have taught ourselves to intentionally deny all of the above, and have made an empire out of the heath and beauty industry to make sure that people everywhere believe that this is not so. That we must use product upon product to make sure that no one knows about you what everyone knows about themselves. We are human.

Since we are so busy despising the human condition, and spending billions a year to cover it up, what does that leave a caregiver to talk about? The little contact I have with people usually finds me answering the questions of “How is it going?” with “Fine,” and other monosyllabic answers. Not only do you not want to tell them about all the crap that kept you awake last night, but they don’t really want to hear it, either! (Can you blame them?) And I can’t help but wonder what other people must be facing down that they just don’t want to tell anyone about? My mountain of laundry, my pigsty of a house, my financial terror are all things I avoid talking about.

I recall the days as a stay-at-home mom, where you bust your butt all day and it doesn’t look like you did a damn thing. I find myself in the same spot now, except I don’t even get the housework done. I wake up at 6:00 and get Phil ready for school. He gets on the bus at 7:20, and I get a cup of coffee. Mark and I head downstairs to pack and ship our eBay stuff.

As an aside here, I will say that while working at home has it’s convenience; it also has its downside. You know how you see the internet ads to “Work at home in your PJs!” Well, what they don’t tell you is that the only reason you are in your PJs is because you didn’t have time to get dressed, much less shower, and you have been wearing the same PJs for three days.

We ship between, say, 6 and 20 packages a day, which takes time and packing material and labels and a trip to the post office – hopefully before 12:30 when they close for two hours. In order to keep selling stuff on eBay, you have to keep listing stuff on eBay. My basement houses inventory I have not even seen in two years. Yeah…it’s that bad. It’s also home to 25 years worth of my shit that has been languishing down there while I get over my emotional attachment to it all. So, things need to be sorted and inventoried and photographed and downloaded and uploaded and listed and described in detail. My conveniently located washing machines and never-ending piles of laundry make sure that I never have a block of uninterrupted time during this part of my work day. Eating between 6:00 and 2:30 is only undertaken when my blood sugar reminds me that fuel is required to keep the body running, and coffee doesn’t count.   

On any given day, the eBay job is further interrupted by phone calls that have to made, bills that have to be paid, letters and e-mails that have to happen, bank deposits, grocery shopping, feeding the dogs, physical therapy appointments, occupational therapy appointments, doctor and dentist appointments, the ever-popular DMV visits, car troubles, kids activities, school activities, meal preparation, the intent to clean the house and bathing. Not necessarily, but pretty much, in that order.  And then Phil comes home. And I’m always happy to see him – but now my second at-home job kicks in.

A trip to the bathroom is usually on the schedule, and suffice it to say, I shouldn’t have anything on the stove when we undertake that activity. This is where the brakes go on, the door gets closed and we don’t talk about what it takes to help another human being with this particular bodily function. Most of us alive today have no clue why they ever had an outhouse with multiple seats in it. Half the population has “shy bladder” and can’t possibly do their business in the company of other people without at least a partition between them. But in the home of a caregiver, this has been taken off the list of things we don’t talk about, and moved into the realm of things that happen every day, the matter-of-fact.

In fact, I now envision the multiple-user outhouses as a rather sacred place. When you are involved in an activity with another human that involves the basest of human function, superficiality is suddenly absent. We understand this in term of sex – where the primal intimacy between lovers results in uncensored pillow talk and some of our most meaningful conversations. Things are harder to hide when you are flesh to flesh. The static fades, and there sits the REAL you. But subtract the romance and take it from the bedroom to the bathroom, and suddenly to the average person, it sounds like an “I really don’t want to go there” place. But I’m here to tell you that it tends to be much the same encounter, on a different level. What a better place to ask questions about sensitive subjects, that you really can’t ask when you’re watching TV or eating dinner. Talk about a captive audience. Is there a better place to sit laugh about all the woes of being utterly human? Don’t we all talk about envisioning an audience in their underwear? Well, this is the epitome of that. This is the place where I get to be a 12-year old again, and Phil gets a glimpse into the 40-something life. Over the commode, we have had some great laughs and a few cries. We have talked about birth, and death, and sex and babies. I’ve answered questions that I’m willing to bet many parents have not had to answer for their 12-year-old boy, mainly because the only safe time to ask what certain words mean without fear of raised eyebrows and voices is when you are on the shitter with your pants down. But it’s not like he’s going to find out from his friends behind the tree house, and I don’t want my son to be the only one when he does get together with his peers to be confused about the terminology flying around, appropriate or not.

Having made it to around 5:00 o’clock, we have to at least THINK about dinner, if not actually make something. And the thing about being broke is that your refrigerator does not contain any food. Just ask Phil who will stare incredulously into the refrigerator and exclaim, “There is nothing to eat! There are only recipes in there!”  Another night of the ever-disgusting Hamburger Helper, frozen pizza, buttered noodles, or the old stand-by, cereal. I peruse the nutrition label on the box while eating just to make myself feel better about the whole experience, and feel amazingly glad that Phil’s primary source of nutrition is direct deposited during the night via his g-tube. No matter what’s on the menu, it requires time to sit and help Phil eat. He’s got a neat little mechanical arm called a deltoid assist that we hook on his chair and he can raise and lower his arm to the tray, but he still needs supervision and service.

While the other kids have entertained their social lives between the hours of 3:00 and 7:00 or so, Phil likes to spend some time playing video games, playing legos, or indulging in his Facebook social life. (If you are his “friend” and see him on line, hit him up for a chat, eh? He loves to chat and will watch TV with his Facebook open in hopes someone will pop up in the box and talk with him. Breaks my heart sometimes…but the social life of a kid in a wheelchair is another blog altogether.)

Feeble attempts to clean up the kitchen and fetch the laundry and tie up any loose ends on eBay are made, before exhaustion sets in, and we have to think about bedtime. I am learning never to use up all of my energy before putting Phil to bed. It’s the last 90 minutes or more of my day, and it’s a marathon. It’s a routine of feedbags and bed prep and potty and g-tube and medicine and warm milk and changing clothes and tooth-brushing and bed boots and blankets and pillows and supports and stuffed animals and positioning and reading or talking. By the time I have brushed my own teeth and gotten ready for bed, it’s about time for repositioning, and finally, I get to crash – at least for a few hours, laying there thinking about how old I feel as I fall asleep.  Until I hear Phil call again, needing to roll over.

Next thing you know, it’s 6:00 a.m. Wake up and trudge into the kitchen to make the coffee, and look around at all the shit you didn’t get a chance to do. Vow to do it today after you’ve taken care of all of the same stuff you did yesterday. Starts to feel like Groundhog Day. (If you haven’t seen the movie – you simply must.)

So in the context of this life, and all that you must do, and all you cannot do, or can no longer do, I’ve arrived at yet another life lesson, which we talk about, but rarely do unless forced to, and that is:

To live in the moment.

It’s a fine aspiration…a great credo…a noble goal. But the reality is that unless you are given to contemplation on a mountain top in Tibet, most people’s lives are consumed with the what-ifs and the what-abouts and the where-tos that clutter our lives. It’s about plans and goals and dreams and aspirations – luxuries to me these days. I read through the vacation tour magazine that still comes in the mail once a month, and realize that the world will, for the most part, be an undiscovered place to me. But I have a world right here that is happening in front of me. The highlight of my year may not have been a trip to Europe, but a week-long excursion to the hospital, most expenses paid. What in insane adventure that was! It’s about quality time, not in the hot tub on a cruise ship, but stroking my son’s hair as he falls asleep and not being in a hurry to get somewhere else.

How many of us would love to throw the clock out? Well, other than a few highlights on the dial, I have actually accomplished this. The position of the sun doesn’t mean much anymore. Make sure Phil gets on the bus on time, and be there when he gets home. Other than that – it is of no consequence. It’s an autopilot feature that doesn’t even suggest that you look at the clock when he calls out in the middle of the night. Who cares? To look at the clock in the middle of the night is to fuel thoughts of “Oh, my god, I’ve got to get up in x hours…I’ll only have gotten x amount of sleep”, and other such depressing views. He needs to be turned in this moment. I’m going to do this, and enjoy the moment of seeing him comfy again, and the moment of getting back into the comfort of my own warm bed when I am done – even if only for a small amount of time.

Life happens in increments – small ones at that. It doesn’t lend itself to accomplishing cleaning out the closet, or tackling the clutter, but every moment is just that: A moment in and of itself. I can live in it, or I can live like I have for most of my life, looking past it to what is next, barely noticing a smile, a smell, a look, a detail within that moment.  When I find myself hurrying through some task, just to get to the next one, I find myself angry, and flustered and upset and riled up. But when you see me swearing at the computer for not printing a label fast enough, it’s not about the computer. It’s about living for the next moment instead of this one. And the lesson of late has been to slow down and wonder if the package I am printing the label for is going to THE Terry Bradshaw, or someone with the same name. It’s about taking the time to be amazed at something as simple as a roll of tape, and wonder how they mass produce the stuff. And being glad I found my postal supplies so cheap, while I wait for this space-age device to spit out the postage – a feat we never thought possible 30 years ago. It’s taking the time to marvel at the fact that there is never nothing going on.

It’s taking time to overcome and cancel out years of conditioning to be proactive and forward thinking about everything. But the exchange is a free pass, of sorts, to ignore tomorrow in lieu of today. It’s giving myself permission not to freak out about stuff I have no control over, and look for just one piece of the puzzle at a time, and not feel that I have to finish the whole thing in one sitting. Kind of like a “Get out of Stress Free” card.

I’ve come to the place where Reinhold Niebuhr perhaps found himself when he penned what we know today at the Serenity Prayer, in an extended version:

Grant me the serenity;

To accept the things I cannot change;

The courage, to change the things I can;

And the wisdom, to know the difference.

Living one day at a time;

Enjoying one moment at a time;

Accepting hardships as the pathway to peace.

Amen.

Hope Versus Help - The Quest for Balance

This particular blog has been a long time in coming. I started writing it the weekend after Philip had his hunting trip through a wonderful organization called United Special Sportsmen of America. (You can read about this in one of my previous blogs.)

We had such a great weekend with Philip’s hunt. But to even suggest that it was relaxing would be a bald-faced lie. It was worth every ounce of effort, but it was effort. It was packing his stuff: Pillows and blankets and a urinal and a toilet seat and chux and his pump and his bags and his tubes and his syringes and his Ensure and his clothes and his outerwear and his IV tree and his aluminum ramp and his charger…and our stuff, too. Some food, some movies. Over the course of three days this would all be taken down and packed, taken in and set up twice. During our stay, it was carrying him to the toilet, to the ATV, to the stand numerous times. And despite the good time, I came down with an awful bellyache and migraine on Sunday, that left me weak as a kitten. (Now you KNOW that the weekend was a positive experience, because it trumped all the physical toll!)

That Monday morning found me reading about the latest breakthrough in research on Duchenne, the very affliction that was responsible for my weekend. All the joy of it…(I don’t suppose we would have had this experience if Phil were a “normal” kid, now would we?)…and all the work of it.  I read with great interest about how stem cells have now been identified to be the key element – not to a cure, but to further research on how we can perhaps effectively TREAT some aspects of this disease. There is a difference. The researchers are, of course thrilled, and stated, “Finally, now we can get a handle on what is going on, and learn how best to target future therapies. Having a mouse model that mimics the human disease will benefit all in the field and is very exciting for patients.”

And finally, they were courteous enough to give credit where credit is due and informed us that: “The research was funded by the American Heart Association, the National Institutes of Health, the Muscular Dystrophy Association and the Baxter Foundation.” 

Really. Imagine that. Apparently the AHA, the NIH and the Baxter Foundation (A philanthropic organization for many causes) have all thought that this was a worthy cause, too, and threw their money into the Duchenne research hat. Awesome!  And this is but one study. How many more are there? I don’t need to Google that to find out – there is a LOT of research going on out there, funded by far more than just the Duchenne specialty groups.  Super! And so today I read that because we finally made a mouse as sick as a human and figured out the hows and whys of that, that as a patient this is “very exciting”? I beg to differ.

This does not excite me at all. Quite frankly, I find it rather depressing. I feel like the kid on Christmas who just opened the last gift and all they got were socks and underwear, “That’s it? This is all there is?” Yeah, yeah…I know – we all NEED socks and underwear. I get that. But all year I was stoked to get a new sled! A puppy! A Red Ryder BB gun! I was promised that if I was very, very good this year, I would be rewarded at Christmas time with some goodies under the tree – and this is it?

Perhaps a more grown-up analogy would be putting a lot of money into the stock market, and hoping that your investment was really paying off, only to find that you’ve made a whopping .25% interest on your investments all year!  Whoopee!! Now, I wouldn’t stop investing, but I would probably begin to diversify my portfolio, right?

But that just doesn’t seem to be the perspective in the Duchenne world right now. On the contrary, we want to throw more and more money into this pool. But what I am proposing is that we as a group think about diversifying our investments. Why? Because I’ll tell you what excites me, as the mother of a DMD patient. A new ramp. Yeah…Phil has to slip and slide down our plywood ramp all winter, because funding for the ramp finally came through the day before Thanksgiving, but the town I live in won’t let us build it until the neighborhood gives the OK to allow us to build it closer than 25 feet from the street, and the variance appeal has taken too long and now the ground is frozen and buried under snow.

I would be excited about being able to afford a new van, because when it rains outside, we have to start it every few hours to make sure that it will still start.

I would be thrilled about a new shower chair so that we would not have to bathe Phil on a plastic bistro chair with a Nascar seat cushion for stability. The state has to mull this one over to determine if it’s necessary.

I would be happy as hell if we could afford to have pull-ups at night instead of some state-issued Kleenex consistency paper diapers that hold approximately four tablespoons of fluid before soaking the entire bed.

I would be crying tears of joy if there was an awareness campaign in schools to let people know that kids in wheelchairs are people, too. I would like to see standing room only at a workshop for parents of special needs kids to explore resources available to them. The one I was signed up for was cancelled due to lack of support.

What I want for Christmas would be for every kid with Duchenne to have another wish come true, instead of just one per terminal illness, thank you!

How about funding a “toymaker”, to make toys for the ALL the kids with Duchennes, from the youngest to the oldest, from adaptive toys to adaptive technology for the computer?

Anyone for the idea of starting a fund for housing for Duchenne men, so that these intelligent young men don’t have languish in state run nursing homes? How about staffing them with people who are well trained to deal just with this disease? How about a pool to pay the caregivers who truly care a better wage?

I am still stoked about Philips hunt through USSA because here is an organization who realizes that the assets that we have that we receive from the generous people who give to the Face of Duchenne, need to be diversified. Fund some research…by all means. But how about a little nod to the quality of life of the boys that are trying to LIVE in spite of this disease?  

And why do we feel that we who have been touched by Duchenne are the ones solely responsible for funding the research, when there are clearly already a number of benefactors out there funding it already? How much of that wheel do we have to reinvent?

Can we take a clue from the Reeve Foundation? It’s a half and half thing: Half to figure out how to fix it, half to figure out how to live a fulfilling life with it! “Today’s Care, Tomorrow’s Cure”.

I understand the desire to DO something. It burns a hole in my gut, too, to be so bullied by this disease.  But why is it every call to action is a call to fund research? I don’t understand that at all. The tragic fact is that this is NOT what is going to fix THIS GENERATION of Duchenne boys. We’re on a clock, here…and the fact that we just screwed up a mouse enough to start trying to fix it just doesn’t cause me to do a little happy dance.

Are there any Brady Bunch fans left in existence? Well, I am unashamedly one of them. Growing up in big family, when TVs took 5 minutes to warm up and there were only three networks and some strange signals called UHF and VHF – we took our programming seriously, and the Brady Bunch was a great offering. 

Sitting here today, I am reminded of a particular episode, where the oldest boy, Greg, was offered the chance to be the new pop star: Johnny Bravo. What starts as a family musical affair soon waxes myopically in Greg’s favor, a choice made by the money-grubbing record execs who see him as the next meal ticket. It all goes to his head, family chaos ensues, and in the long run, Greg is deflated to lose the opportunity for one reason: He didn’t fit the suit. The Johnny Bravo Suit did not fit his frame. The fact that he may have had talent was a moot point – it was all about the suit. But when we take the entire “moral of the story” into account, that was a good thing. Because the writers of the storyline are pointing out what the suit represents – and how our hero is not fit for the suit. Greg Brady did not represent the money, or the power, or the greed or the corruption that the suit represented. And to shorten it up further still, let’s just stop at the money. It was all about the money. The Brady’s were not about money. They were, of course, about family, and love and moral values and Americana. And they all lived happily ever after.

What makes me sad is the fact that our tactics, as the Duchenne Champions, seem to have taken on a bit of a Johnny Bravo twist. One group recently shot a public service announcement using a very handsome 28-year-old gentleman with Duchenne as their representative. After hours of what appeared to be excellent footage, a good chunk of it was shit-canned. Why? Because he was deemed to be too old. They wanted a younger victim. Evidently, the suit did not fit.

No, the suit they want on their mascot is young, and cute, with rosy cheeks and all the promise of a life that could be LIVED. They want an image of what they could do if only they had your money…not what happens realistically even though we have more money than god right now already. A little boy on crutches elicits the “Awww”…while a man with a tracheostomy and ventilator elicits more of an “Ewww”. It’s all about marketing, and marketing is all about money. They want the illusion that this little boy can be mended and made whole – they certainly don’t want you to see that in 20 years that same little cherub will look just like this. If he lives that long. They apparently see this man - who is fighting so hard to just to live - as a testimony to the failure of research, and that is as wrong as the day is long.

To ad insult to injury, the feedback coming back from one Duchenne awareness campaign is not really what we wanted to hear. Apparently we have missed the mark in making the public aware of what Duchenne REALLY is, and what they can do to help remedy it. It was perceived by one blogger as merely a name change to a scary disease. And it’s doubtful that anyone with the perception that we are trying to polish a turd will donate to eradicate the same.

If we want better PR, then I guess we need to write better PR material. And maybe we don’t need to try so hard to paint a picture with dramatic effects. Maybe we should just be real. Maybe we could go “reality TV” on the general public and let them see what life is like where the rubber meets the road on this thing. But maybe, after seeing that reality, people would rather donate to concrete offerings to the people they see, rather than to research they cannot. Let’s face it: A man in a lab coat will never elicit the donations that a little boy in a wheelchair will. But where does the money go? It’s not to the little boy. They end up being the Trix rabbits – the mascots for what they may never taste. “Silly Rabbit – Money is for Research!” Lesson one in good commercials is to pay your actors well. Even if, in this case, they are not "actors"...they are our children.

When people see starving children on TV, they want to know that the money they sent bought FOOD for the child – not a research team to figure out how to feed the child. Maybe that is why the Hollywood crowd (and their copious amounts of money) is far more supportive of things like Make-a-Wish and Feed the Children and Habitat for Humanity, or helping the homeless, and women’s shelters. They want their money to make a difference TODAY in the lives of a fellow human being. While government money tends to be spent on think-tank projects and research, the people whom you and I share this planet with on a daily basis really desire their contribution to go to quality of life – to those less fortunate.

I can’t tell you how many times people tell me, when they find out that I have a son with Duchenne, that they put money in a Fireman’s boot, or bought a Shamrock, etc. I thank them sincerely, but I am quietly crestfallen at the idea that there is a mother out there with three Duchenne boys who has no means of transportation, and how much that money would have meant to her toward the purchase of a van.

With just HALF of the money we pour into research, every Duchenne sufferer could travel the world, in planes designed for wheelchairs. They could all have everything they need to keep up with the “walkies” in school. They could have shots at expressing their creativity through adaptive technologies in the computer world. They could have vehicles that get them from here to there, and attend the same social functions as everyone else. They could have homes where it doesn’t take hours to simply get up and dressed for the day. There would actually be a point to having a get-together for people with Duchenne, because they would actually be able to attend them. Does anyone think that the power wheelchair soccer clubs are not awesome? Maybe there would be more of them if we were not so busy just trying to survive financially in the face of this disease, and it was made as simple for us to take our wheelchair-bound boy to practice as it is to take the “normal” kids to piano lessons.

Could we maybe drop a coin in the cup of practical research, to the physical and occupational therapists who are trying to find better ways to help extend the life of the ever-waning muscles through exercise, and better mechanicals to help a kid continue to feed himself after he’s too weak to lift his hands to his face anymore or hold a fork?

You see…this is where I live. If you just had a toddler diagnosed, this is where you will be, too. Like it or not. Dare to dream of a cure, but in the meantime, life consists of chopping wood and carrying water, and it is going to require all the resources that you have in energy, emotion, spirit, and finance. And ignoring that won’t make it go away. Hoping for a cure will not change the fact that there currently is none. Throwing money at a hope for a cure will not change that, either.

I can fairly hear the hackles raising on those who have invested their blood, sweat and tears into research. Let me say it for the record: I am NOT anti research. I am pro research. I am FOR funding research to cure Duchennes.

Having said that, I am even MORE for finding a ways to live with it. For finding ways to enhance the quality of life for ALL of those who live with it. I am MORE for coming up along side and assisting my fellow warriors in this fight. And if any of the above mentioned ideas (and the host of others I have in my head) seem like pie in the sky, I can only point to the mouse in the wheelchair and ask you if the probability of fixing THAT seems any more plausible.

Having said all of that, I would be remiss in my fussing if that were all I were doing. It’s entirely too easy to just complain about what I perceive to be a lack. The question comes to me: Well, just what do YOU propose?

I have thought about that for a long time. In between life, Mark and I have come up with our contribution. It boils down to this: All money given by corporations or individuals needs to be received by a charitable corporation, the venerable 501(c)(3) which enables the monies to be tax exempt. ANYONE can start one of these. They are not exclusive to the rich, the mighty, or the well connected. Nope. If you’ve got a legitimate cause (or can write up a mission statement  that sounds legitimate), with three things and a government approval, it’s all yours. Oh…those three things? Time, energy, and MONEY. Ironically, the three commodities most taxed in a Duchenne parent’s life. However, it CAN be done. And I want to be a part of that.

Taking advantage of video, here, in 3:00 minutes, is what we are attempting to do:

It’s very slow going – we simply have no more money at this time, and lawyers are expensive. People who want to commit time and energy on advisory boards are few and far between – and I totally understand that! The people that need this the most need another commitment like they need a hole in the head! Our time is stretched to the maximum. But we WILL do this. It WILL happen.  We’re not hooked up enough to get our commemorative ribbon on soup cans, but we will do what we can, and we will get to the point where we give new meaning to the slogan, “No child left behind”.

There is so much money out there. And most of the government money goes to research…of all kinds. Some are pretty ridiculous, (e.g. do we need to study the effects of cow farts on the environment?), but many are legitimate research projects, medical research, etc. Since the government is pretty generous with its research grants, couldn’t we take money from the private sector and direct it towards goals that the people donating it actually wanted to see happen? Like vans? Like tangible, bring-a-lump-to-your-throat gifts for those who need them? Not just at Christmas, but every day of the year?

When I hear about $60.00-a-minute research, I can only think to myself, “Could I have an hour of that time?” – because I would be able to get Empower Wheels off the ground and then some.

There are so many things that money can’t buy. We can’t buy a cure to this disease. We can pay to find ways to research it in the hope of finding a cure. But to put it in perspective, give me $250,000, and give the research team of your choice the same amount. Let’s have an accountability session in six months. I will be bringing in a full house of boys, men and their families who are smiling, happy, and blessed by that particular windfall. What will the researchers bring to the same table? Nothing that will provoke tears of happiness when you hear the stories of lives enhanced TODAY by something money COULD buy.

The Harlem Globetrotters

The Harlem Globetrotters

Thanks to the generosity of a good family friend, Philip was able to go and see the Harlem Globetrotters this New Years Eve at the early show. I had seen them when I was 14, and remembered enjoying the show immensely, so I figured Phil would really appreciate it, also. Initially, Phil asked his brother, Giovanni, to go with him, as he is in basketball through school, and he gets along with him well. However, Gio was visiting his older brother, and with the holiday plans, work, and weather, turned out Gio could not make it. So, we called and asked brother Joel if he wanted to go. Twenty years old and has only been to the Bradley Center once??? It was time! And so Friday morning the four of us, (Mark, myself, Phil and Joel) headed out on what started out as an act of generosity turned into a most interesting study in life and its complications, resolutions, human indifference and human compassion.

The first step to any outing with Phil is to research the handicap accessibility, not only for seating, but for parking. When you are talking about The Bradley Center in Milwaukee, one assumes that these are all well taken care of – and they are, for the most part. But a crucial element is missing.

This is the second event that I would be taking Phil to the Bradley Center for. The first was a concert two years ago and was a debacle. To get a handicap access ticket, you have to call in person. No online Ticketmaster for you. Upon calling, I asked about the parking, as I have a certain phobia about driving in Milwaukee in heavy traffic. We were told there was plenty of parking, and that’s about all. When we arrived, I had no idea where to park, and drove around the Milwaukee Maze until show time trying to find a place,  finally dropped Phil off at the door and parked nine blocks away, having to run all the back through the snow in a light jacket, late to the show.

Now this time, I figured I would call ahead and get all my questions answered. I purchased the tickets and asked the clerk about the handicap parking. I was told there were spots in the parking garage. I then asked what the clearance was on the parking garage, because we already nearly ripped the roof off the van at Children’s Hospital, finding out the hard way that we need seven foot clearance. She did not know. I asked where we might park an oversized van and once again was told, “There is plenty of parking in the area.”

So, after my conversation, I went to the internet and looked up the Bradley Center. Turns out they are well equipped for many different accessibility needs. They have a whole page dedicated to it. They have a specific lot for oversize wheelchair vans, among many other things for a variety of disabilities. Once there, we stopped and asked for directions at the Will-Call window and were treated very courteously and kindly to the information we sought. The realization came to me that the problem was one of simple awareness. I need to write a letter!

“Dear Bradley Center Brass,

You have an amazing facility, and some great entertainment. Despite handicapped individuals being in an extreme minority at your events, you have accommodated them well in amenities. However, I would like to ask if perhaps you could post a memo in the ticket office explaining the services you have available so that the gals who answer the phone might be of some assistance to us who must call in for our accessible tickets. I know, we aren’t many – but we are there. And we really need to know these things. And when we ask where we can park, or where we can unload or reload, or use the restroom – it would be nice if they could give us the same information that you took the time to make a page for on your web site. Thank you that you do have accessible facilities above and beyond those mandated by the state for those who need them. Sincerely, Me.”

Once inside, we were escorted to our seats, and enjoyed the entire game, with lots of laughs. It was announced at half-time that you should “buy your merchandise now!”, because after the game there would be an autograph/meet & greet on the arena floor. Wow…now THAT would be a very cool reminder of this trip, wouldn’t it? I had my camera and everything! Some cool shots for Philip with the Globetrotters? And an autographed item? Okay…I’m in. But what do we have to autograph? The ticket? His backpack? I didn’t price out the stuff they had available, but I knew nothing was going to be a bargain, and all we had left was our pizza money for after the game. But this was not to be missed – so I asked the nearest usher how we could get down on the floor after the game.

We found the elevator and made it to the main floor. There was quite the crush of people in the area, and even with an escort to the actual arena, people still did not look, did not listen, did not move when politely asked to. The usher apologized, but told us to move quicker when there was an opening. Of course, if you know Phil, this is not exactly his element – 10,000 people pushing and shoving to get in a poorly defined line? When we finally made it to the court, only one woman offered us a place in line and made room for Phil and his chair. It was like that freeway traffic jam when you have to get to the  exit, and that one, wonderfully kind persons slows down and lets you in! By the time we weaseled our way over to the first player, every kid and adult around us would reach over Phil and hand their item to be autographed to the player. The players were just swamped, grabbing whatever was shoved in their face next to sign.

We had decided that the pizza money would be worth sacrificing for a $25 basket ball to sign, and now here we were trying to get even one signature on it. Joel was getting downright angry, trying to make a way for Phil. Before we were able to get to the second player, the buzzer rang, and the “meet & greet” was over. They had a second performance that evening, and they had to clear out this crowd. Joel defiantly chased them down and managed to get one more signature before the security told him to stay back.

Phil and I sat and waited for the crowd to disperse a little. As it did, we found ourselves next to another boy in a wheelchair. His mom was consoling him, too, that they had at least gotten one. Then behind them, still a third wheelchair appeared as the crowd thinned. There we were…tired of fighting the crowds. Feeling a bit defeated and overwhelmed. Suddenly acutely and painfully aware of what “dis-abled” really means. We can’t compete here – in a crowd of walkies, whose only thought is to get a souvenir for their kid – we are out. We can’t bob and weave our way to the front of the line. We can’t sidestep someone’s elbow, or hop over someone’s foot to get where we want. We sit here and wait for the people who aren’t paying attention to our, “Excuse me…excuse me…excuse me…”, which is either getting louder because we are getting pissed, or softer because we have realized how pointless this has just become. And the look on Phil’s face just crushed my heart. The whole scene was like a big bully shouting in his face, “Ha, ha! You can’t do this!!”, as he obligingly rushed his chair forward when the opportunity presented itself. While he looked hopefully up at the player, waiting to be noticed. And now while we dejectedly sat in the debris of a now near empty arena, while the cleaning crew comes in and starts setting up for this evening’s show.

All I want to do is cry, now. I can feel the old bladder-behind-the-eyes beginning to let go…but I stop it. Slap on good ol’ happy face! Change your mind! Think about the good stuff…and do it NOW!!

“Well, hey, Phil…that still was a really cool game, wasn’t it?” I try.

And he agrees, and I remind him of some silly things that happened, and he laughs again. We’ll just forget about this whole ball signing incident – it was a dark spot on what was otherwise a wonderful day. He was admiring the ball all the way to the van, and asked us to put it where he could see in on the ride home. Not much talk on the way home. We are a little tired, and hungry, because the pizza money went into the ball.

Suddenly, a little more than half way home, Phil pipes up from the back. “What did you say, buddy?” I ask him.

“Gio really missed it, didn’t he? He missed a good game.”

“Oh, that’s for sure,” I tell him. “That was awesome! You’ll have to tell him all about it when he gets home.”

“I think I will give him my ball.”

“What?” I ask incredulously? The hard-won, two-autograph Harlem Globetrotter Basketball we just spent our dinner on? You want to do what with it?

“I want to give Gio the ball. He missed the game, but he would at least have something from it. He can play with it, too.”

I look at this kid. I look at his face. I hear the tone of his voice. And I want the whole ’hallelujah chorus to bust it out wide open. I want the Universe to take a picture of THIS. I want the world to see this dichotomy, this irony, this motivation, this moment of human goodness.

In a spiritual Kodak moment, I am seeing human generosity, coming from the neediest of humans. This kid, who just went through the miserable experience of having his lacks shoved in his face, being overlooked and ignored is now concerned with trying to give his brother some of the fun that he missed. The child who has nothing to give is looking for something he CAN give. This is not a kid with sour grapes saying, “Just give him the basketball. I can’t use it anyway!”.  No, this was Phil telling me he was sorry that Gio missed the game, and since he got to see the game, perhaps the ball would bring Gio as much joy. And it’s true…(even if Phil doesn’t realize you don’t usually use an autographed ball), he can’t use the ball. He cannot throw, or catch, or dribble. He can barely hold it on his lap. Surely Gio would put it to far greater use since he plays the game regularly. And that would make him happy.

Now Phil is not a saint, here. Not by any stretch of the imagination. He can be as surly and nasty as any 12-year-old out there. He can be selfish, and rude and ugly. He so often struggles with frustration and anger, and I know that it is generated by all the limitations he has. But that made this all the more heartwarming to me, to see his best shine through in the face of the worst. The fact that he could have been pouting about what he didn’t get, but rather lifted his thoughts to what his brother didn’t get…that is not what makes him a saint – it is what makes him my hero.