The Cure for Duchenne? Let's try a Change in Thinking

http://www.bloomberg.com/video/jpmorgan-dad-on-son-s-disease-biotech-venture-IZrvLpguSs6D45C1Iwfhmg.html 

Sorry, but I can’t not speak my peace on this one. The news story linked above does not cause me to rejoice. It quite frankly turns my stomach, and for several reasons. 

A high profile rich guy’s kid is diagnosed with Duchenne, and as fast as you can say, “Oh shit,”, he’s got 17M in investors, and we all jump up and down like we won the “Price is Right” grand prize.  

Newsflash: WE didn’t. The pharmaceutical companies did, and the investors, who we are told are quite happy about their potential return on their investment for this business model. This is about curing disease? Get a clue…it’s about the money, first and foremost. Period. They will receive the funds, and proceed to distribute them to the corporations to profit off of. And when, in our fairy-tale hopes-and-dreams world they find a “drug cocktail”, they will SELL IT BACK TO US at prices that none of us could possibly afford if not for the benevolence of the Insurance Industry. 

Let’s talk about that “drug cocktail”. Are you serious? As of now, steroids are the only drug used to treat little guys with Duchenne, and we all have to weigh the risks and benefits, which are nothing to be written off as no big deal. The steroids do on occasion help them walk longer, and they enjoy a bit more artificial strength in their childhood, but that wheelchair is coming, and a sedentary body is going to need all the bone strength it was born with to stay in an upright position. Steroid weight gain and bone loss will more than likely come back to bite your now-little boy in the ass when he’s not so little anymore. Steroids – and I would venture to say most of the drugs they are looking at – (the “cocktail”) – is only treating him in a Snapchat photo. He is growing and changing, and people whose kids are little are not thinking about the rest of their life.

I realize that this is because of the painful thought processes we have to entertain. I know all about the intentional denial factor. But what we are stepping into is a life of drug dependency that in the long run is going to shorten their lives, because most of these drugs are in fact toxic to their system. Their immune systems – which, by the way are NOT directly affected by MD – are now compromised by the very drugs we are trying to “save” them with. This is a slippery slope of medical dependency that did not need to be, as one drug side effect begets another counteractive drug, which begets another, and another, until we surely will have that “cocktail”. And the drug companies wear it well. 

For those with a recent diagnosis, I understand the overwhelming desire to want to “save” your child. They look fine right now – just a little “off” of the norm of age appropriate development. And in our current narrative, that means we need to do something, and that something is raise money for a cure i.e. the drug companies. Because your child is still walking, laughing, probably unaware of his “fatal disease”, this seems reasonable. We call it “raising awareness”. 

But the awareness that needs to be addressed is within our own homes, long before we export this to the world that knows nothing of it. The PARENTS need to be aware that as your son ages – drugs or no – your life is about to undergo a paradigm shift with him. With the little guys, you are not thinking about whether or not you will be able to afford the right kind of wheelchair, or what kind of vehicle you will tote them around in, or what happens when they need a Hoyer lift for every transfer, and a hospital bed, and how much time it takes to dress a 14-year-old for school, and how to manage your life around that. You don’t think about the necessity of straws, or what to do when they can no longer manage the Legos we inundated them with. And how are you going to handle his sexuality, mom? Is there a dad here? Then there is also a marriage that has to deal with a third person in it, night and day, up close and personal. Good chance there are other children who can’t be kicked to the curb because they can function independently. 

What I’m telling you is that this “disease” does not need a pharmaceutical answer – it needs a change in thinking. Once you change the thinking, you will, by default, change the disease, and get the cure you have prayed for. It just isn’t coming in a bottle of pills or IV treatments. It’s coming in a way we should try and come to expect. It is in not seeing a Duchenne-affected child as tragic; a problem to be fixed; crippled…handicapped…pathetic…fatally ill…DISEASED.

If you’re like me you will bristle at the description as you look at your son, and loudly cry, “FALSE!”  We would insist that this is not how we see our sons! But it’s time for a little self-examination. Yes. Yes, we do. And it’s reflected in the beggar’s behavior we engage in, and how we get all excited when a rich guy gets affected because he won’t look so much like a beggar. We are a glorified pity party, where we foot the bill, and it’s been going on since Jerry Lewis started it how many years ago. We are the tragic, helpless victims of a disease and we need help. That’s how we see it, that’s how we play it, and that will not change it. If we really want to change it, we must first indulge in honesty. And only then can we see this in the light of what it could be. 

You see, Not all beautiful things are good. Not all good things are beautiful. And such is a child who will be living with Duchenne. Did you notice I did NOT say “dying from a fatal disease”? There you have change number one. Heads up: LIFE IS FATAL FOR US ALL. Shame on us for the death-sentence we place on our boys. No one has a guaranteed life into adulthood. No one.

Then there’s the “disease” thing. Let me share personal point. My son, at 15, heard the words “fatal disease” strung together for the first time, and they were describing Duchenne, a condition that he is well aware that he has. His words to me? 

 “Why do they call it a disease? That makes me feel like a rat in the sewer or something,” with a look on his face as if someone spit on him. Who is responsible for calling a genetic mutation a “disease” in the first place, and why must we perpetuate it? If I called a Down’s Syndrome child diseased, someone would take me to task on that, you can be sure. Change in thinking #2: Stop with the disease thing…it is a genetic condition. Period. 

Remember Willy Wonka and the golden tickets? Well, in my world getting a boy with Duchenne is a Golden Ticket. I get to enter into a place that almost no one has ever been. I’m the parent chosen to go in with him. It awesome…it’s creepy…it’s amazing…it’s frightening…it’s colorful…it’s crazy…it’s calming…it’s nerve-wracking. But at the end of the day, we exit that place  different people than we went in. Like Charlie, when faced with compromise on our integrity, we scorned the big prize for the relationships in our life…for LOVE. And it’s only in walking away from the corporate promises and returning to the human side of life that we are granted the keys to that kingdom. And once in that kingdom, we are free to create the lives we dreamed of. 

Look around you! If all you see is a disease to be cured, and begging for scraps from the government and pharmaceutical tables, you are missing out on things that would really change our lives. Think of  the world of robotics, which could have power wheelchairs looking like iron lungs in no time. On physical therapies that would keep them moving their muscles artificially, instead of atrophying into stiffness. On technologies that could give these boys the chance to give the world of their gifts, instead of languishing in the solitude of their homes in front of the computer and video games, the only things left for those who have been left to wait for the drug companies to do their thing. Could it be that having a boy with Duchenne is your cue from the Universe, or God, or the Powers that Be to push you to see REAL possibilities of LIFE? To see that what you have is the very definition of a HERO? 

Let’s talk about heroes for a minute.  How many times have I read someone lauding their son as a hero, and then curse the “disease” that afforded him the title? It’s a package deal. Most teenage boys, regardless of disposition, are monosyllabic with their parents and seeking their own meaning to life at that age. Parenting becomes a spectator sport. But not for us, you see. We are blessed. We have a hero we are raising, and will be effectively a Siamese twin with this same hero, and so thereby have to develop some heroic attributes ourselves. 

But who have we been taught are heroes? Those with outstanding athletic or acting or money-making skills? Why then, we just have a pack of short-bus losers. Not a society I want to live in. But let’s talk about the boys and men with Duchenne that truly inspire us. They are doing things that everyone else does: writing, directing, producing, going to prom, graduating, marrying, travelling cross country with friends. So why the inspiration? Why the standing ovations and sense of awe? Because they are amazing for what they were able to accomplish IN SPITE of being “diseased”. Because like all heroes, they face what we esteem to be insurmountable odds to come out on top. They still love and live life, despite the fact that we all “hate Duchenne”. 

We are conflicted. These are not strugglers and stragglers. These are not immobile invalids we need to pressure society to accommodate. We instinctively know this. We know that they are, in fact, over-comers, who are brave because they have to be, and we know that most of us are not equal to that task. Yet, we take their actions and serve them up as icing on the cake at our pity parties. We devalue them by reducing their efforts to an appeal for money they will never see. At a certain stage of life, we realize that any “cure” is a moot point, but by that time, you have no more time for running around begging. Your life now revolves around this super-hero you have birthed, and all the research in the world is meaningless if you still see his life as merely a struggle to live a standard-issue life until they die. 

In this context, our fundraising makes no sense at all. Imagine having a child who is a gifted athlete. I mean, over-the-top Olympic hopeful stuff. “Oh, dear,” we cry, “Janie is a special child! She’s not like the other girls. She so much faster, so much better at her sport than all the other kids. What if we have to allow her to be homeschooled so that she can practice more hours in the day to become the best? What if she wants to actually try for Olympic status? Her training will be a rigorous hell-on-earth! Oh the struggles, and battles, and tears, and missed social life, and high expectations, and potential crushing disappointments! And fame…oh dear. Maybe we can find a cure, so she will be just like all the other kids.” 

It’s the same…yes, it is. Our children might not be impressing anyone on figure skates, but their gifts hit people at a far, far deeper level than ESPN. They get to people’s HEARTS. They get into their minds. They see things that those who rush around in their “healthy” bodies will never even notice, and they would probably be able to share these profundities with the world if they hadn’t been labeled by their fellow humans as broken, diseased, and pitiful. Put them on a stage for all to see just how pitiful they are to wrench a dollar from the merciful masses for…what? These kids are the X-Men, but unless they have knives for hands or can control the weather we just pass them off as hopeless cripples? 

No. In my way of thinking, there should be schools set aside for them, just like the X-men. They ARE different. They will never be mistaken for “normal”. They are special, indeed. They are gifted. And those gifts will cost them. And they will pay the price for having it. As will you as parents. And the cost is great.  Will we honor their gifts with the reverence they deserve? Or will we be found begging society to make room for them, while we search for a “cure” for the very matrix of their gifts? 

So how could we possibly make this happen? Again…A CHANGE IN THINKING. And that thinking has to start at home, where this child will be nurtured and raised. We need to stop listening to what the current world paradigm is, and listen to our HEARTS. We need to stop being victims, and take up ownership of our situation. We need to stop seeing our children as SICK. They are not. They are rare. They are different. They are gifted. They are special. They have a spirit that will be stronger than any physical body if we will but allow them to see themselves as who and what they really are, instead of pathetic patients in need of pharmaceutical “cocktails”.

There should be a touring bus coming through every town in the U.S. on a regular basis with a Duchenne boy on it, inspiring celebration for a life being LIVED. There should be a line of young men waiting to accompany such a hero on his trip. This is how lives would be changed! Want a kinder, gentler world? Give people the chance to live with one of these extraordinary men and become involved in their daily life for even a few weeks. They will never be the same. We shouldn’t even have to pay people to do it…for it is an honor, privilege, and task of heroic proportions all by itself. 

Who is going to tell this to the world if we, as parents, do not esteem it so? If we see our boys as burdens, we become not much more than human zoo exhibits that people like to visit so that they can feel better about their own lot in life, but are happy to leave at the end of the day. Our message turns into, “Hi! My life sucks, my kid is diseased and dying. So since we know you don’t really want anything to do with this shit, could you drop some money in the hat?” And as life goes on, and the progress becomes more and more difficult in the life of Duchenne, the tendency for the story is to become more tragic, and pretty soon you have to leave the spotlight, because the sorrow we project is downright scary. Plus, it gets a little too obvious that all the money for a “cure” has been for naught. We must not allow ourselves to see it this way.  

Life with Duchenne is like a video game. We level up as they grow. The levels become increasingly difficult, but they can be won: Not with medicine, but with SPIRIT. With attitude. With guts. With risk. With chutzpah. And winning is NOT living forever. Winning is finishing the game after completing all the levels successfully, and becoming the full person you and they were meant to be. And we must come to the point of allowing this to happen. We resist. We try to stop time. We try to turn back the clock. We are so focused on an uncertain future and pining for the past that we miss the NOW, the present and all that it is bringing us every day that grows us. 

Life with Duchenne is a roller coaster ride, and here we parents are, white knuckling the safety bar, screaming our head off, feet firmly planted inside the cart and our legs shaking with the effort of trying to stop what cannot be stopped. Enough, I say. Let go. Raise your hands. Surrender to the void. Scream with a smile for the complete and total overwhelming rush that it is. That’s your kid beside you. Let him enjoy it, too. 

The hope we seek is within us, and it’s in a perspective that does not see this as a medical problem to be fixed by some drug company or government approval. It is a THINKING problem that can be fixed right at home by rejecting the whole story we’ve been told about Duchenne. It is NOT fatal. It is NOT a disease. Your child is not a problem to be fixed….he’s a hero in training. We need to accept that challenge with grace and strength, so that they can indeed be all they can be. 

They are not meant to be poster-children for suffering. Nor are we as parents. We have been knighted with a task that is superlative and herculean in nature. Will you rise to it, or crumble underneath it? It’s all a matter of the way you THINK about it. 

So…do we just ignore the difficulties? Ignore the medical needs? Pretend it doesn’t hurt at times? Charade that our hearts are not broken regularly and repeatedly? Deny our despair at times? No, no, no, no and no. That’s part of our hero training. Heroes of history have all met with life and death decisions, physical hardships, extreme pain of both and emotional and physical nature and crushing defeats. The difference between a hero and a victim then is in how you interpret the life you have been given. In whether or not you allow these things to grow you, or to destroy you. It’s in facing the Highest Power in your life with a sense of profound gratitude for choosing you, rather than shaking a fist and cursing your fate. 

It’s about not wearing your pain on your sleeve for all to see and pity, but showing the world that you have a Golden Ticket. Yes..YOU! And only when we stand with a pride borne of humility and hardship will the world see us in that light. As long as we parade about as victims and beggars, that is all we will ever be seen as. People disappear from your life, because you are depressing and sad and a representation of everything nobody wants. That is the picture we have painted. 

I am suggesting it’s time to scrap that picture for a new canvas altogether. But this time, let’s give the paintbrush to those who understand that we are not looking for handouts and pity. When they call the Duchenne people to come forward, let’s not send in the clowns to dance for money…let’s show them the height and breadth and depth of soul that people aspire to. Let’s present people who are worthy of infinite respect, who are not asking you to relieve their suffering and remedy  their tragedy, but who inspire them more than a Tony Robbins conference, or “The Secret”, or the Wisdom of the Holy Books. People of strength, and joy, and gratitude, who see their lot in life as an opportunity to live it to its fullest; fullest joy, fullest sorrow, fullest victory, fullest pain, deepest valleys, highest mountains. 

Where does that leave our “money for a cure” issue? Right where it is, shrugged off as a rag in exchange for the robes that befit us.  Find me a “charity” for which the return on investment is not monetary. Find me a van for every family that needs one. Find me new and innovative technologies to assist our heroes with movement and communication and connection. Find me financial support for the medical appliances that become necessary as we level-up in the game. Find me community awareness that does not involve a pity party for the “sick” one. 

Let us, by our show of strength, create a community that rallies around such kids with all the enthusiasm of the Green Bay Packer fans. Let’s stop being such downers that we are shelved into the pigeon-hole of the needy by living lives and showing attitudes that people are drawn to and not repulsed by. Let’s create a world where there is support for parents – plenty of shoulders to cry on because it’s not a permanent state-of-being for us. A world that doesn’t need to be reminded to make their establishments accessible – because if they are not, they would be afraid the heroes would not come. (Interesting…because heroes are better for a successful business model than beggars.)

The question then arises: Are we willing to change our thinking? Or have we become comfortable victims? Do we use our “diseased” sons as a sort of social currency? Have we rather enjoyed the constant stream of pity? Would we be lost if we had to stop the busy-ness and distraction of our fundraising long enough to realize what we honestly believe about it? And how this looks from a distance? Do we really want a cure? Do we want one bad enough to stop all the presses and perhaps write a new narrative on this? 

It won’t be easy. But it’s not impossible. Try just fantasizing that world for a few minutes. It exists. As parents, we already live there. We arrived there the day our son was born, and we held them and promised them a life worth living. Look at your son today and tell me that you don’t see a hero. If you do, then start putting that belief into your thinking. When someone comes and wants to use your son as a mascot for pity, it won’t make sense anymore. You will have started thinking that what they are looking for is pity to generate donations. But if you are going to sell anything about your son, it won’t be his tragedy, it will be his Heroism. He IS the cure for Duchenne as we’ve been lead to believe it. And because he IS the cure, we are just about the business of LIVING LIFE now, and we will do that with or without any pharmaceuticals. We are already winners, and people would rather join the winning team than financially prop up a losing “battle”. 

And with the support of people, our sons won’t suffer the isolation and stigma of being "diseased".  People want to hang out with heroes. And our sons will be more apt to pursue their passions, because people look up to heroes, and heroes tend to live up to or surpass expectations. And opportunities will abound, and obstacles will move out of the way. 

Finally, I need to say that I offer no apology for how I see this, and have no need to entertain argument regarding it. None should be generated. You need no validation from me for any works that you may currently do in the fund-raising arena. I believe your hearts are pure in your quest. 

But I see every Duchenne kid and parent as a comrade…part of a reluctant-elite force of humanity. I see a value, a strength…a trait nothing short of valor in all of you that I have come into contact with. And it’s as if you don’t even know who you are. As if we are sad, and small. I want you to know that we are NOT! And we are far, far above the social paradigm that makes us tragic. The monetary nature of our society has played us. And I’m pissed off about that. Because it makes us out to be fools. So much money for them at the cost of so much for us. And I realize that most of the efforts we put forth were by newly “condemned” parents. But one day, shit will get real enough that you see the folly in it. You will not be thinking about money and a cure when you are in a battle for air. 

Let’s fight for something more important than a pharmaceutical cure. How about let’s fight for our dignity, and sell the benefits to society for appreciating those heroes among them. Of the benefits of making sure these heroes have everything they need to live a life of service to others. Where people greet you and your son with awe, and not “Awwww.”  

We need to change the thinking. We need to change the story of Duchenne. And we’ve already got a lead in on that, you know. Our friend Dr. Guillaume Duchenne has another label to his credit. He studied facial muscles during smiling, and differentiated between a forced smile, (which more closely resembled pain), and a spontaneous, genuine smile. He labeled the latter: The Duchenne Smile. When we can all wear our Duchenne Smile, we will have the most tangible Cure for Duchenne we’ve ever seen.

Of Square Pegs and Round Holes

Don’t really know how to start a publishable blog these days. So many subjects, but the colors of my life are just all over the pallet, running into one another and making an awe-inspiring kaleidoscope of life that I can’t even keep up with. The cool part is I’m not even trying to control it anymore…I’ve just been content to sit and watch with utter amazement how the events and circumstances that are running in all directions make the most beautiful fractals and combinations. Some look like abject disasters…and then all of a sudden, a picture emerges, and all the muddiness turns into clarity…the chaos becomes a quirky new order. 

Everything in my life seems to step on the heels of everything else, creating a story that will be cherished long after the final chapter has been written. 

 

But today I am thinking of Philip. I am sitting in my current favorite space and wondering over the direction our life is going. I’ve spent more time in contemplation the past two years than in any other endeavor, I believe, and things have changed. Although changes come slow – one day at a time – there are times when you look around and realize you have made a major shift, and days where the subtle changes suddenly manifest with a vengeance. 

Philip’s health took one of those sudden turns back in December, with the onset of a cough and congestion. When you can’t cough, that just spells trouble. I entered the classroom of “Sudden health changes – 102”, which I believe I detailed in a previous blog. What we learned from that was not so much how to suspend the clock and just do what you gotta do, but to try and troubleshoot the causes. Treat the symptoms…but try to identify the cause and remedy that if you can. Our investigation showed that part of the problem seemed to be the stress of school. While Phil hopes for a social life there, after 8 years it’s just not happening. No fault…no blame…it just is what it is. The school did the best they could, but there is just no denying that Philip is different. For all the attempts to convince him he is the same as everyone else, at the end of the day as he hangs in his Hoyer and I roll it over the bed we have to face it: No…no this is different. Oh, his mind is sharp, as is his wit, but his life is about as different as a dolphins is from a humans. And the current arrangement was just not working. Every time we sent him back to school, his energy level would collapse, and he’d start coughing and choking again. 

So, we – Phil and I – decided that we would home-school for a while to see if that helped. And it did. For a while. We were blessed beyond all reason to have a live-in caregiver during that time. (That’s another blog altogether, but we need more Sammy’s in the world.) We were able to skip the clock like we did when he was sick, but without the sickness. No more rigid schedule…classes that consisted of “Dirty Jobs” marathons on Netflix and a visit to the museum and zoo, late night laughs and starting the garden. A little while into it, though, we decided half-days of school might be a nice switch up, and all was well. 

And then the kids came home! Phil’s best social life is his family. His favorite times in life have been when his brothers and sisters are here. Often, they bring other people home with them and we have hosted some amazingly wonderful people as a result, and Phil now has friends across the USA. They stayed for a month of spring weather, garden-starting, gourmet cooking and fire-spinning at the campfire. And then they had to leave again. It was a short season, and as the crew prepared to depart for their new seasonal destinations, taking his caregiver with, and a brother leaving for Afghanistan, his health once again took a downturn. While driving our last guest to the airport, I was entertaining stopping at Children’s Hospital ER on the way home. His anxiety about hospitals was the only thing that prevented me from doing so. Realistically, what could they do for him there that I could not do for him at home? 

Realization#1: When you share a life with Duchenne, you are pretty much on your own. There are no pat, standard answers, and there is no rule book. You need a medical staff that includes a neurologist, a cardiologist, an orthopedist, a pulmonologist, a dietician, a primary care, an ENT doctor, perhaps a surgeon or two and their attending anesthesiologists, a durable medical goods supplier, a physical therapist, an occupational therapist, and some rehabilitation people who know how to fit crippled people comfortably in their wheelchairs. You may need a few more…but we’re not done yet. Each one of these specialists needs to have a little further specialization in the world of Duchenne Muscular Dystrophy…a disease which is hardly worth their time in terms of money and patients. One in every 3000 boys born just isn’t a huge customer base. And good luck with that. Your best resource is other parents and your own intuition – and even then…they are just reference points. One doctor will prescribe steroids…another won’t. One will prescribe heart meds, another won’t. One will suggest surgery…another won’t. You get to decide what right for you and your son. And you just do.  

So back home to our arsenal of durable medical equipment: An insufflator/exsufflator or Cough Assist machine, his suction unit and his nebulizer. His feeding tube assembly with constant vitamin C running. And his XBOX, of course. A review of any given day in this mode only serves to remind you that, yes…we are different. No copy of Parents magazine ever contained an article on the pressure setting of a cough assist, or how to best get the coughless child to cough effectively. You end up doing whatever it is you have to do to get that crud out, and that’s that. 

Then one day the Pulmonology people called…our appointment to have his pulmonary function test was up. What timing. When we arrived, I told them they we didn’t need a PFT – (every one has been an epic fail, owing to the fact that he can’t tighten his lips around any of the equipment) – we needed a chest x-ray to check for pneumonia. After lots of what Phil called cripple gymnastics, we got it, and got mostly an all-clear. No pneumonia, just a small spot of atelectasis. (Medical transcription training not-withstanding, you get to learn all these very important sounding medical terms along the way. It’s just a small spot of under-inflated lung.) The doctor gives us a scrip for antibiotics to make sure it doesn’t infect, some settings for the cough assist that seemed ridiculously high, and instructions to use his shaky-vest thing. Now we know something. 

So, home we go. One day’s worth of the dose of antibiotics has us realizing that it’s way too high…unless we plan to spend every day doing the hoyer-commode-bed-hoyer-commode-bed routine. I cut the dose in half and doubled the time he’s on it. Yes…you can do that. Amazingly enough, an entire education on antibiotics and modern allopathic medicine are all available on-line. There is no mystery to it, and if you take any medications at all you really should learn about them. Since we are on our own, here…and since every doctor that is treating my son has a financial interest in his staying a needy-customer, I have set myself up as the final authority – with Phil’s input – regarding all of his medical care. (No judgement on the doctors here…I’m sure most don’t see it that way. Unless, of course, you asked them to treat your kid for free….it just is the way it is.)

The antibiotics are doing their thing, I’m doing mine, and Phil is doing his, and we have nothing but time now to wait and see what happens. As he recuperates, we talk. A lot. About stuff that reminds you once again, that we are square pegs on a game board with nothing but round holes. How many conversations about death, dying, illness, life, living, happiness and sadness have you had with your round-peg 15-year-old lately that were not merely theoretical? You start realizing that your answers had better not be some made-up bullshit from a million years ago, or the latest new-age fancy trend for feeling good about things that hurt. Concepts like heaven and hell suddenly require some serious validation before you pass them on in some type of blind faith. This isn’t you…this is your child. Can you really guarantee them anything? What can you genuinely assure them of? And what are you just hoping they will believe and be okay with? What if you are wrong? They trust you…what are you telling them that you KNOW is true? Wouldn’t it be nice if I had answers for those questions? Unfortunately, no one can answer them but you, in the quiet of your own heart, in the water of your own shower which hides your tears, fears and uncertainties, and in the privacy of your own mind when the world is quiet and dark, and in the moments you stand outside their bedroom door as they sleep, and your heart begins to strain and ache with the love you feel for them. 

And in one of those moments, I made a decision. An epiphany of sorts. I am standing in the hallway listening to his breathing, thankful there is no longer any rasp and rattle. I stare at my son, and a heat begins to well up in my chest, meaning I will either have to walk away and continue about my business, or stay and reckon with the emotions that are sloshing around in there. The room blurs, and the debate is over. Here comes the silent volcano. The denial, the anger, the sadness, the bargaining…where, oh where, is the acceptance this time? 

In the midst of fear, and pain, and sadness and hurt, I realized that what I seek the most is the thing that I am resisting the hardest. That seems incongruous, I know, but at that moment, it made perfect sense to me…and it still does. I have spent a very large chunk of my life resisting what IS my LIFE. 

Let me explain. What is it we all want? How about a life without Duchenne? We want a cure, we want treatments, we want our sons to have better “full quality” lives and to live longer. We don’t want coughs to be fatal, we don’t want wheelchairs and hospital beds. We don’t want spine surgery, and we don’t want to be immobilized by this disease. We want our kids to ride bikes and ATVS and have friends and sleep-overs. We don’t want hoyers and feeding tubes and trach tubes and ventilators. We want an all-expense paid vacation to the Carribbean, not Children’s Hospital. We want our boys to play football and baseball and attend their games, not worry that they play too many video games and that they are socially stunted. And yet…when I stop to look at where the acceptance is that will bring me peace, I realize that with every comparison I draw between what IS and what I think it should be… I push away the very fact of my – our – life and all that it actually is. 

For every moment I have spent fighting, hating, cursing, and anthropomorphizing Duchenne, I have lost an opportunity to grow, to be and to experience this life. Because every moment is all that we have…and how we look at it, react to it and experience it is the writing of our life’s book. It’s how we choose to look at anything that determines our reaction to it. And I realized the truth of “When you change the way you look at things, the things you look at change.” 

 

I challenge any person of faith to deny the teaching that everything happens for a reason. If you believe this – as opposed to just saying you believe it, then you have to know that the presence of Duchenne in your life is a gift. It is packaged in some very unseemly packaging, with all the aforementioned accoutrements, and certainly emotional and physical challenges. But this is just the wrapping paper! Don’t get caught up in it. If we spend our life tangled in the wrappings, we may never get to the center of this tootsie pop…and the intangible, miraculous and wonderful gift that is the reason it showed up to begin with. If we say we believe it, then we need to act on it. 

But what about Phil? What does he think about all this? He hates this shit just as much – no…probably way more than - I do. Easy for me, from a philosophical view, to proclaim Duchenne a gift for my own spiritual betterment…at whose expense? Who am I to put my son in that position just for the sake of my peace of mind and sanity? 

I think the better question is, Who am I to take away his hopes, dreams, and his very health with the nocebo effect, telling him what his body can’t and never will do? How many of us refer to our kids as frail, or sickly, or ill, or diseased? Even healthy kids will live down to a poor medical billing. We use our son’s condition for far less noble things if we are honest about it. But in our defense, we have bought the package. We are told our kid has Duchenne, given the standard outline of what to expect in graphic terms, and sent home to deal with that information. The only hope offered us in this corporately sponsored package is the unrealistic hope for a pharmaceutical cure, which won’t help anyone born today. Even if it did, are you ready for the world of hurt your son would have to endure in physical therapy just to regain the movement in his buckled under feet? To keep us busy, we are asked to prostitute our kids disease for the monetary causes of big pharma, and then to feel good about it. No judgment if that’s your thing…it just isn’t mine for these reasons, and I can’t pretend it’s helping my son.

How does Philip feel – about being the bearer of Duchenne and all its “gifts”? The better question to ask him, however, would be how does it feel to be the bearer of Duchenne and all that sucks about it? Because that’s how we’ve been seeing it. This was perhaps best illustrated one day when he was at the respiratory bottom. There is no greater hardship to holding it all together than to watch your kid struggle for air. So I’m looking at him, waiting for him to come up for another hit off the cough assist, and he said to me, “Mom, when you look at me that way and feel sorry for me, it doesn’t help.”  

 He doesn’t want to be the object of anyone’s pity. When on the XBOX, he doesn’t pull out what he calls “The Cripple Card” when playing with friends who wonder why he’s calling his mom for this or that. 

But I realized that’s the only perspective I ever gave him. It was handed to me, so I handed it to him. This sucks. Your disease sucks. The things your disease brings into my life suck. I hate it. This hurts. Oh, yes….love, love, love, love all over you…but the disease…ugh. I suddenly had a “shame on me” moment. 

I suddenly found myself into a different world. I moved into a world where when children are born who are in some way NOT like the “ordinary, normal” child, the community comes to attention! “A special one has been born!” the murmur goes out through the community. “To who? Who are the lucky parents?

Who was deemed worthy to receive such a tremendous honor?” For everyone in this community I find myself in knows and understands that these children are the blessed ones…the ones through whom the purest LOVE of the universe flows into humanity! Miracles surround them! Healing surrounds them! Some say nothing, and do nothing tangible, but the aura about them is a spiritual force to be reckoned with. The caregivers are akin to the attendants of the King…so sacred is their job. The families of these special children lack nothing, for it is an honor to assist them in seeing that the lives of the blessing-bringers are comfortable and happy. The parents are honored, assisted, up-lifted and blessed by the community for sacrificing their independent lives to parent these gifts to humanity.

And in the nanosecond that I lived there, I looked at Philip sleeping in his bed, and realized that I have perhaps done him the worst disservice, by not living up the high calling that is mine. And then I am plummeted back into this world I live in now, and realize that I have bought into and perpetuate the lie that is our social paradigm: That he is diseased, he is less than. The things that he cannot now, nor ever will do without a “normal” body are the highest and best things…the coveted Round Holes...and he will have to find what second best thing he would like to engage his Square Peg energies in. We are reduced to begging for everything, and apologizing for our existence.  I am daily consumed with all that is not; all that I don’t want, all that I despise, all that saddens me, all that hurts, all that I  hate, and all that I fear. And I realized…I don’t have to live here. And neither does Phil. 

But it will take me to lead the way, as I have done his whole life. I tell him he is a gift. Over the course of time, we have talked at length now about our lives, and who we are, what we are doing, why we are doing it, and what we want to do now. 

We have Duchenne. We need to decide whether we will see it as a blessing, or a curse. It cannot be ignored…it must be one or the other, and that is nothing more than our choice. We need to stop being mindless about this life process, and quit pining for things that are not, (with all the attendant poor-pitiful-me jargon), and start looking for (and finding!) the doors that are opening to us because of Duchenne. We need to stop – and help our kids stop – hating on their bodies because they are not like what we have defined as “normal”. While their bodies may be in decline, there can be no doubt that a body that is loved on will perform better than a body that is hated on. Can we make our way into a world where physical activity and financial productivity are not the measure of person’s worth? A world where we redefine our valuation system altogether? 

I believe we can – and we are. We no longer have to understand “why”…we know why: For a Very Good Reason. That is our FAITH. I have a life than carries testimony after testimony to the fact that the shittiest, most horrible things that passed through have been the catalysts for the best, most beautiful and profound positive changes. Every time. Why would this be different? Do I live in a world where there is a force that is out to “get” me? Or do I live in a world where it’s all working FOR ME, if only I stop complaining long enough to see it that way? If I only believe that it’s for our GOOD, and leave it at that?

Does this new “acceptance” of Duchenne make it less painful? In some ways, but it does not negate it all. Each layer of the gift that surfaces is a different pattern: some nice, some horrifying and unfamiliar. We Duchenne students get an up close and personal look at things few ever see – and perhaps ever want to see – but we carry the backstage passes. If this be a gift, we hold our noses, cry our tears, feel our feelings, pocket the change when we are ready, and carry on with the next lesson – thankful for the experience. If this be a curse, we wallow for years on end, crying for why, and what and who and how, seeking blame and relief from the wrapping paper that is suffocating us. We forget that it’s a gift. 

I realize not everyone can see this…this kind of revelation doesn’t come all at once, and the application is a daily thing. It’s a day at a time growth – and like the progress of Duchenne, it’s a little here, a little there, and a few sudden roller-coaster drops that throw you off balance. Knowing it’s a gift brings you back to center a lot faster than wondering who threw the curve ball at your head and why. 

It’s taking Phil more time to see it this way, but he’s beginning to make more and more progress toward it. 

He asks me, “I’m not dying, am I?”

I say, “Not on my shift.”

“But am I going to die?” he still wants to know.

“Yup. So am I, and everyone you know, sooner or later. Same as being born.”

“Am I okay?” he questions. 

“I don’t know…do you feel okay?”

“Yeah…”

“Well, there you go. You’re okay!”

“I think my mind is telling me I’m here for a reason. It’s not my time,” he concludes, and then asks, “Right?”  

“Dude, I KNOW you are here for a reason…so, yeah!” I concur.

“Maybe I’m supposed to change the world. Do you think someone like me can change the world?” he wants to know.

“You already have, kid…in more ways than you know. And you’re right…you’re not done yet.” 

Welcome to the world of the Square Pegs. We are not less than - we are different. We are not victims of a disease...we are the students of a single-gene disorder, which is the boot-camp we have been signed up for - and which is designed to make us the  best and most fulfilled human beings we were meant to be. Duchenne Strong. But we need to see that Duchenne is not our enemy. It is, in fact, our ally, and if it's not, we need to make it one. Plenty of organizations have capitalized on it and made it THEIR ally...why don't we? Perhaps they've made it about the money...but I'm making it about LIFE. How much MORE life will this teacher afford us if we stop seeing our square peg status as a liability, and begin to see it as an asset...a window to a whole new world view?