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August 28, 2010

Daniel Stanton
Stanton, Daniel “Danny” George age 4, beloved son of Michael T. and Mariann E. (nee Murtaugh) Stanton. Cherished brother of Mary Grace, Johnny and Tommy Stanton. Dearest grandson of Thomas and Cheryl Stanton and Mariann and the late George Murtaugh. Treasured nephew of Megan (Mike) Anderson, Katie Stanton, Tom Stanton, Paddy (Dawn) Stanton, Pete Stanton, Anne Stanton, Liam Stanton, Mary Jo Murtaugh, Mary Eileen Murtaugh and George Murtaugh. Best buddy of the Leona Avenue Kickball Kids. Funeral Wednesday 11:30 am from Smith-Corcoran Funeral Home, 6150 N. Cicero Ave., to St. Mary of the Woods Church, 7000 N. Moselle, for Mass at 12:00 pm. Interment All Saints Cemetery. Visitation Tuesday 3-9 pm. 773-736-3833 or visit Danny’s memorial at www.smithcorcoran.com. Please go and enjoy your life. Danny did.

I am astonished, disoriented, isolated, restless, and doubtful in my calmer moments. The rest of the time, when runaway thinking roils the sea, I am terror-stricken, trembling, numb, unhinged, annihilated. Everyday is that day, still, in one form or another. In trying to set my mind on a course toward peace, the mind itself is what must be contemplated. And the amount of energy necessary to grapple with that type of deliberation is most times enough to call off the initial proposition. And so no progress is made. What’s the answer?

“And it’s two bare feet on the dashboard
Young love and an old Ford
Cheap shades and a tattoo
And a Yoo-Hoo bottle on the floorboard

Perfect song on the radio
Sing along ’cause it’s one we know
It’s a smile, it’s a kiss
It’s a sip of wine, it’s summertime
Sweet summertime”

Man, Danny loved that Chesney song. Especially the “Yoo-Hoo” line. And now I blast it, and I scream it, and I cry to it. And when it ends I play it again. And I feel closer to Danny in those moments. And for Christ’s sake those are the moments that hurt more than any other. And I just want more of them. I love Danny Stanton. I love Danny Stanton, the boy who lived a perfect little life. I love Danny Stanton, the boy known to so many now as “Danny Did.” I love Danny Stanton, the little scrapper who held my hand and hugged my chest and made the insides of my noggin percolate excitedly about the future: this kid is insightful, athletic, compassionate, affectionate, humorous . . . what an enthralling bunch of tomorrows-after-tomorrows he has in store! What a rousing day he’d be having today, even. A Saturday afternoon in the summertime, pumping his fist in the air as some band-of-dads rocks the asphalt at a classic northwest-side-of-Chicago block party. Goddamnit, Danny, we’re gonna play one for you tonight. Like we always do, and like we always will. Like you did.

He did, Danny did, that kid did. He’d be starting kindergarten in a few weeks, and first grade next year, and then second grade the year after that. And as the time goes by and the memories fade for many, each year of what-would-be will only rejuvenate the loss, and isn’t that just anti-climatic, and oxymoronic, and just plain cruel? Sure it is, and that’s just how it is. But we’re gonna find some power in there, too. Some power for ourselves. Because we’ve got plans for our guy, Dan-the-man.

. . . . .

Here’s an inclination that has become unnerving. Lately, whenever someone is over at the house, there’s always something I want to do: I want to say, Hey, c’mon, follow me. I want to show you something. And then I want them to follow me through the rearranged front room, and then up the stairs-without-a-railing (took it down to get large furniture upstairs, now not sure how to re-attach it), and then I want to say c’mon into Danny’s room. And I want to show them his bed, where Mariann found him. And I don’t know why I have this urge and I don’t know why I haven’t followed through with actually inviting someone to see his room and I don’t know why I haven’t asked Mariann to tell me in detail the moments of 12/12/09 when she found Danny in this bed. How was he positioned? What did she say to him? Were his pajamas wet? And what does this all mean? It means, I think, that we have barely even begun the process of healing. And I hope that that is normal.

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August 18, 2010

Last night, in my dream, I stood at the gates of a cemetery. The gates —old and iron and arched— only slightly hindered the vision that at first had me rub my eyes and then filled them with tears.

Initially, the vision was out of focus and without color. In the distance, though, I could make out dozens of caskets resting above ground. Each was partnered with a tombstone. The tombstones were hulking and deeply etched. Children stood next to each grouping.

I determined at first that they were children by their stature. And as the vision began to sharpen this perception became clearer by the virbrant red shirt of the child at the grave nearest to me. He was Danny. I then realized for certain that the others were children, too. A little girl, maybe Danny’s age or a bit younger, was behind him and to his right. She stood next to her casket wearing a white dress and a white bonnet.

I sprinted and I called to Danny. The short distance between us evaporated. Yet by the time I got to him he was not gone, but he was less than physical—an apparition. Enough of his presence remained, though, that I could see his smile. His smile  was the same as ever: eyes soft and piercing, deep and knowing. He said “hi dad.” And then he was gone.

I draped myself over the casket, searching for more of Daniel. I was bawling. The casket was made of stone. “4 yr. old” was inscribed into its top. Then, like dreams do, this one ended.

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August 13, 2010

What if everything we wanted to be true (relative to Danny dying) were true? What if the countless stories and accounts of after-death experiences —of after-death reunions— were confirmed: signed, sealed, delivered, I’m yours! What if we could know and didn’t have to employ measures to deceive the mind?

We’ve got a whole bunch to do —on our own— so many years to figure out how to mourn, so many roads to travel. Maybe we need space. Maybe we need distance. Maybe we need more help than we know. Maybe we’ll figure something out one day that will soften this straight line we’re on —soften it just a touch— and allow it to begin to curve again, to metamorphose back into a circle.

“Everybody seems to wonder
What it’s like down here
I gotta get away
from this day-to-day
running around . . . “

Down here, it’s gritty. Anybody who’s been down here knows that. And anybody who’s been down here knows that  “ . . . this is nowhere.”

Mariann and Mike

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August 11, 2010

A few days ago we were playing catch in the front yard with John. We were throwing grounders, liners, pop-ups —the whole range of possibilities. As John scoops up-and-in everything that comes his way, he lets us know that he’s looking for a little more action. “Throw me some ‘divers,’” he says. So we throw a few behind him, a few in front of him, a few to his left, a few to his right.

He is shoeless and shirtless and looking like a seven year old boy living it up in true summer style. The smudges of dirt and the scrapes and scratches on his pale, muscular, pint-sized body are comforting reminders that this little boy has a space of his own in this world and that he continues to actively and courageously and spiritedly live in it. He dashes back and forth after each ball, his body completely airborne on most efforts. He seems so happy, so engaged in the moment: his ice-blue eyes are twinkling and his freckles are dancing on either end of his smile.

The next ball we throw is one that seems an impossible catch. The ball sails in front of John and to the right; his body breaks two steps to his right and then with a third step he thrusts forward; he leaps and is nearly horizontal to the ground as his glove hand (right) extends to its limit toward the ball; his body twists and arches and then, almost simultaneously, he snags the ball out of the air as the grass absorbs the full force of his major league performance. John hit that ground hard, but before we could say anything other than “yeah!” John pops up, displays his glove with the ball in it, and exclaims, “Now that’s what’s so great about being a kid!”

Hearing, seeing, and feeling that enthusiasm from John sent our eyes darting toward each other. We were of one mind. Our shared thought was this: remember when we used to ask John how his day was and he’d shout out “great!”? Well, his pronouncement after catching that ball had that old ring to it. There wasn’t much more to it than that. Just a moment in time that Johnny brought to us — a moment from our old life that demands a place in our new life.

Mariann and Mike

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August 9, 2010

We talked today about not being able to look at Danny’s picture. It can be too immense. Sometimes, to look at his picture first thing in the morning can assure a painful beginning, like starting out heading upstream. As if we weren’t already. How appalling is that? The thought in and of itself is terrifyingly revolting. Imagine. Is the notion complex, or do we over think it?

Speaking of binding, confining, entangled thoughts: The ways the days bounce like rays and drive it all on along the hot, hot highway. It’s all open road for us, but it feels all themed-up, like we’ve been packaged, scanned, tracked, and delivered . . . and have been assigned expectations. Like products. Very much a situation of our own making, yes, but the need to fight a common perception is still there, and it is enormously taxing. It saddles the mind and it saps its energy. Constant explanation and clarification seem the honest way to counter what everybody else knows. But it’s too accommodating to what we view as overt disregard for . . . fill in the blank.

True, that’s not always the case. Part of it is our own doing, our own translation of the contents of a moment in time. Our impression is greatly skewed, oftentimes, of course. So who’s right? (I am confused as well.) Or maybe just having fun. Or maybe just dancing around because I want to broadcast (read: cry about) the purchase I made today, but can’t bring myself to talk about it. ‘It’ is Danny’s gravestone, and it’s been ordered, and that fact brings me to a place I’ve never been. We have this stone from India here, and this one has a beautiful striation to it, and yes, the Royal Emerald granite marker does come in a blue tone, and look, it has an iridescent quality that highlights its lustrous color . . .. So this fractured, disorganized rhapsody may be just that. But it is not without shape, and it is not without dimension. This nightmare keeps getting scarier. I am petrified of it.

We’ve also been talking about the meaning of the word ‘resilient.’ Living resiliently. Someone’s got a book out about this right now. For us, living resiliently is about knowing. It’s about knowing that we will always grieve for Danny. Always. It’s about knowing, too, that a healthy life is attainable and a necessity for the sake of MG, Johnny, and Tommy. As well as for ourselves. It’s about keeping our heads up, and that is a constant challenge. As is knowing, really, anything.

One thing I do know, though, are the very last five words ever to fill Danny’s little ears. Mariann had carried him upstairs at around 10PM on the night before he died. And I know that as she settled him into his bed —just as she had done on each and every one of the over 1700 nights prior to that last night— Mariann kissed Danny so gently on his forehead, and then on his nose, and then on his lips. And I know that Mariann made sure that Danny was warm and snuggly and safe. And I know that there was no better place in the world for Danny to be than right there with his mom. And I know that Danny knew this too. And I know that before Danny drifted off, his last reception from this life were the words of his mom when she whispered “I love you, sweet boy.”

.     .     .     .     .

Being forewarned is being forearmed. SUDEP exists and SUDEP needs to be discussed. Why should another family have to go through this?

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August 4, 2010

Tonight, two-year old Tommy reveals this: he talks to Danny. We say what? He says that Danny is right over there by the light as he points to a table lamp in our front room. He says that Danny wants some Gatorade and some Sun Chips. He brings these things to Danny. When he brings them to Danny, Tommy stands facing the wall and talks quietly.

We ask Tommy what Danny is doing. Tommy says that Danny is playing with his cars or playing “Maxie,” a game the kids play where they pretend to be dogs crawling around the house.

The mysterious comfort provided by a two year-old is simply wonderful. Is it imaginative playing? Is it communication with another dimension? For now, for us, it is mournful delight with an undercurrent of excitement. We look at Tommy and we see Danny; they are stunningly similar in appearance and in manner. The resemblance can be spooky, in a ‘what-if?’ kind of way.

“Once in awhile you get shown the light in the strangest of places if you look at it right.”

Mariann and Mike

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August 1, 2010

When I close my eyes, the slow motion begins.  Simultaneous streams of thought flow side by side; threads through a channel: red, yellow, white, green, black. Each strand carries a different charge and each carries its own ambition. They are bound to each other, by nature, and compete with each other, per nature’s method for survival. They lumber, lumber, lumber along and they encumber clarity.

One strand is called ‘decay.’ This one is the most troublesome, the one with the most power to devastate, the most authority to dominate, the one that can detonate all others by way of dissolving the channel itself. I am too frightened of ‘decay’ to think about it for more than a few seconds at a time.

Another strand is called ‘December 12, 2009.’ John and I recently went to the top of the biggest hill we could find and shouted expletives at the sky as we cursed that day. We gave the sky the finger, too, just to direct our anger somewhere, and at someplace. We know that the sky is not responsible for the circumstance of Danny’s death. The events of that morning have permanently arranged themselves within me. They are now menacing and genetic: time traveling bogeymen ancestral to my essence, as if they were a part of me before they existed. This troubles my brain. So does the cause of Danny’s death: SEIZURE DISORDER, as stated on his death certificate.

That we were never told about SUDEP —never apprised of the fact that death was in the range of possible outcomes for Danny’s condition— is maddening now. Doctors have since disclosed that it is difficult to talk about SUDEP when there is so little they can offer to combat its toll. Imagine if other deadly afflictions were addressed the same way.

Parents are adults. They are equipped to take in information and to act in their child’s best interests. We were Danny’s guardians, his protectors; our job was to advocate for his health, to defend his well being, to see him through his years until he could take the reins on his own. And yet we didn’t know what we were facing. That is difficult to accept. And we don’t.

Another strand is called ‘Danny’s face.’ This strand streams one image of Danny. It’s the one of him in his red shirt. The image is cropped from a larger image. The cropped image floats in my head, sometimes to the point of dangerous distraction. I want to hold that face in my hands and caress those cheeks with my thumbs. I want that nose to touch mine —“Hey Danny! Gimme back my nose!”— while we wrestle on the family room floor. I want to remember the last time those eyes met mine head-on. For now, that most previous occurrence was when I peeled back his eyelids while trying to resuscitate him on that same family room floor . . . that image may be a strand of its own.

The days and the weeks and the months keep passing. I still feel like it’s December 16, 2009 and I’m standing behind the hearse in front of St. Mary’s after the funeral service. The sun is at its gleaming apex and is dispensing distraction as its pulsating rays strain my eyes. Its wintry glare is optimistic, yet it can muster no warmth.

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July 19, 2010

Most days are the same. We put the face on, and it gets us through. Sometimes it is actual, mostly it’s just a fraudulent courtesy to those we encounter. We have an understanding, something we’ve agreed upon. We’ve talked to enough people who’ve lost kids to recognize the different ways that different people handle the loss and the grief. Some say that there comes a day . . . most do, in fact. Right now, we gravitate toward a few we’ve met who see it a different way. Their take is that a day never does actually arrive when you get a grip on the fact that your child has died. It’s a day that just never makes the scene. Get a grip on the fact that Danny is gone?

We are open, though, to the uncertain encounters that surely await us. Why not? What’s there to lose? Common and good sense dictate that if a happy and healthy life is desired for us and our other kids, then a defined level of acceptance, i.e., a measurable amount of ‘getting a grip on things’ is a necessary (and attainable) goal. Still, most of the time it’s just too much to consider, really.

. . . . .

As the words were written, the tears poured down his face. He sobbed and sobbed and sobbed as if his son were still in his arms as he was on that horrible morning not so long ago. His hands shook as he typed, just as his hands shook on the afternoon of his son’s funeral when he threw coins and gloves into the hole where his son’s casket was lowered. He can feel the bone-chilling cold of that December day, a cold that stripped him of flesh and muscle and left him a skeleton, running for cover in a field of death with nowhere to turn. Paranoia. Terror.

Everyday since has been farcical in the sense that the trauma is so breathtakingly immense that it is nonsensical, and in the sense that the accumulating anger and the thought of acting it out is downright funny as experience offers this route as no more than foolish indulgence. And where that leaves him he doesn’t know. Some unknown place, seeking his own attention, just for a moment, just long enough to say sorry. Sorry to his wife. Sorry to his living kids. Sorry that they have to live with broken hearts. Sorry that Danny is gone and that he cannot bring Danny back to them. Sorry that he can’t whisper into their ears, “he’ll be back, he’s not really gone forever.”

. . . . .

Our street is going to be dedicated “Honorary Danny Stanton Way” this Friday. The Danny Stanton Garden will be unveiled this weekend. Danny Stanton awards will be given out to players from several all star baseball teams next week. It all means something.

Mariann and Mike

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July 14, 2010

One of Danny’s soulful supporters chimed in today: “Every picture I have seen here [on Facebook] tells me that Danny knew with every fiber in his being, from his first moment here, that he was (and is) SO LOVED. What a beautiful life, little Danny!”

Yes, maybe Danny’s was a perfect, beautiful, life. It was tuneful. It was full of melody. Danny’s life was an orchestral experience from day one. Born into joy, bathed daily in bliss, slipped away while sleeping. Three months shy of hitting his fifth birthday. What an arc.

At moments it’s quieting to think this way. It is gentle sedation, like we’re on white sand, reclined in chaise lounges, arms draped over the sides with our fingers touching, letting each other know we’re there, toes sunk into the sand and void of energy, a reassuring breeze blowing, telling us that the soft buzz we feel is just right. Like we are at ease, just for a moment.

Mariann and Mike

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July 13, 2010

Well, here’s another letter expressing disbelief at the fact that a parent with a child with a seizure disorder has learned about seizure detection technology and SUDEP from the Danny Did Foundation. A portion of the note reads:

Hi, I just wanted to take a moment to say thank you for what you are doing. I bought my son an Emfit monitor and it arrived yesterday. If it weren’t for your organization, I would both not have learned of it, nor purchased it. What impressed and intrigued me was the work you have done with it via bringing it to doctors at some of the most respected institutions and getting the feedback from them that you did.

Also, I want you to know, no one told us about SUDEP. No one. I learned about it from your organization’s page . . .. Your son’s smile stays with me. He is still doing. Danny is doing so much.

What’s up, docs? It’s hard, isn’t it, to speak with patients about SUDEP. It’s tough to reconcile the rarity of death attributed to SUDEP with having a conversation with parents about SUDEP. Guess what, lots of things are tough in this world. It’s tough for policemen to encounter children with duct tape over their mouths and burn marks on their bodies; it’s tough for firemen to rush into a burning building to save a family and know that they might not make it out to see their own familes again; it’s tough for teachers to walk into a classroom of thirty kids and motivate themselves to dig in and affect the lives of the students instead of just babysitting their pupils; it’s tough for iron workers to balance 20 stories above ground in gale force winds to build the hospitals that treat our children. But they all do it, because it’s a part of what they have chosen to do with their lives. Know what else is tough? Finding your child dead in his bed. It’s tough, too, then, living your life knowing that your doctor knew that finding your child dead in his bed was a possibility associated with your child’s condition. A possibility, yes, but just not a probability, right doc?

The point is, in all lines of work people encounter difficult situations that present themselves as beyond merely burdensome. These stressful situations are downright nerve racking, and it takes —and we need— the strongest of women and the strongest of men to be charged with handling these situations. So the “it’s so hard” to-talk-about-it evasion has become tiresome. We have heard first-hand from doctors whose honest explanation for not addressing SUDEP with epilepsy patients is that it’s just too formidable of a conversation. More formidable than the conversation following the death of a child who has died from a seizure? Check your ego and check your dilemma, doc. Your dilemma, afterall, is only yours in the haze of your self-importance. Stop caressing your chin in perplexed consideration of how to guide a life just-so. Get a backbone, do your job, free yourself: turn the torment of SUDEP over to the parents and caregivers of those with seizure disorders.

We know plenty of docs who have stepped up to address what we know parents want to hear about, and we will continue to encourage all doctors to address SUDEP with their patients. Of course, the Danny Did Foundation is happy to receive any communication from any doctors who are interested in working together in determining the most effective ways to communicate such a troublesome topic. Reach out to us.

. . . . .

We held the 1^st Annual Danny Stanton Kickball Tournament over the weekend. It was incredible. Kids from multiple neighborhoods and schools came together to play kickball and to celebrate a life well lived by a certain little kickball champ. The kids all had a great time playing with their buddies and meeting new friends. We had face painters, pizza, music, popcorn, custom made #19 cookies, and championship baseball caps for each member of the championship teams in each division. All of the kids got a Danny Stanton Kickball tee shirt, too.

We’ve got to say, though, that putting on a kickball tournament for 235 1^st through 8^th graders must sound and seem easier than it is. A multitude of encounters brought us to this conclusion. As a backdrop, though, first consider this: we charged no one to participate; we provided pizza, popcorn, drinks, face painting, music, tee shirts, and hats for the winners. We chalked the fields and set up tents. We had the help of nearly a hundred incredible friends to accomplish all of this. We did this because Danny loved to play kickball, and for no other reason than to revel in the atmosphere of hundreds of kids playing a game that Danny loved. It was so pure.

Consider this, too, as further backdrop: In the mere seven months (!) since Danny died, we have regularly visited with a grief counselor. One of the exercises we perform every so often is to step back and consider what we have learned about ourselves during this process. One thing we always acknowledge is that you can talk it out, hug it out, or shout it out for as long as you please, but this journey won’t leave us and this road never ends. We say that we are different people now, literally, chemically, atomically, sub atomically. We are now differently comprised. And accordingly, we respond, we react, we view, we hear, we see, we know, we feel, we want, we laugh, we comprehend, we envision, and we dream differently. We have been re-defined. Of course, though, not everything about us is different. That would be too easy, to free of conflict, too liberating.

We still get frustrated in traffic, still get worked up over a leaking pipe, still lose our tempers with the kids, and so on. That’s because even though we have changed in so many ways, the world has not. We don’t expect it or others to change, either. But in certain situations, we don’t think that we’re out of bounds to expect a modicum of effort in considering our new place in the world. Which brings us back to Danny’s kickball tournament.

Overwhelmingly and spectacularly, everyone enjoyed themselves to the nth degree. Danny’s spirit blew through the park amidst all of his hundreds of supporters. We saw him there, rounding third on his way home, running with a piece of pizza in each hand as he hustled to his next game, holding Tommy’s hand after Tommy fell down, cheering wildly for Johnny and Mary Grace in their quests for gold. Danny was there, elevating the hearts of kids who knew him and kids who didn’t. But there was too a slight and uncomfortable undercurrent that we didn’t expect. People complaining about what team their kids were on; people joking about the teams being unfair, but is it really a joke after the comment is made a dozen times? People wanting different colored tee shirts, or taking tee shirts that didn’t belong to them. People grumbling about kids and umps not following the kickball rules to the letter. People crabbing about games being too spread out, both spatially and temporally. We just wanted to say to these few, rare people a couple of things: sorry you’re not having a good time, let us just refund your money —but oh yeah, the whole day is free. More than anything, though, we just wanted to squeeze the stupidity off of their faces and point them to All Saints Cemetery, and tell them to go way in the back there, over near the two big oak trees and just this side of the railroad tracks. That’s were we last dropped off our son Danny. Is your kid playing kickball today?

Sounds like the bitterness is coming out, eh? We’re not so sure about that. On this one, we think, you can either look outward or you can look inward before you make your judgement. The thing is, Danny has always been consciously and conspicuously put at the forefront of all of our interactions, be they large or small: board meetings, meetings with doctors, dinners, conferences, events . . . it’s an effort we’ve made because Danny is what this is all about. We didn’t think, though, that we’d have to stress this fact and make this effort at the Danny Stanton Kickball Tournament. We thought that Danny would be at the forefront of each and every person’s mind, and that the thought of Danny would be enough to guide their actions in appropriate and respectful ways.

. . . . .

Please Go And Enjoy Your Life. Danny Did. That’s the last line of Danny’s obituary. That’s where the name of the Foundation comes from. We’re still figuring out that grave stone. Maybe we’ll write that on it: Please Go And Enjoy Your Life. Or maybe this: “He is still doing. Danny is doing so much.”

Mariann and Mike

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July 8, 2010

A great supporter of the Danny Did Foundation sent us a note today. It read as follows:

I asked for some Danny Did bracelets and received them from Mariann yesterday. This morning, in line at a Dominicks store, there was a woman with two children behind me. The little boy, who looked to be about eight, said “look mom, my name’s on that lady’s wrist!” I smiled and the woman asked me about my bracelet. I told her a little bit about Danny and the Foundation. Her eyes got very teary and she told me that her daughter (three years old and with her at the time) has just been diagnosed with childhood seizure disorder . . . and that she was a wreck about it. I gave them all bracelets, which I happened to have in my purse. She isn’t on Facebook, but I wrote down your website address for her and told her about your brochure. I didn’t pry for info, but she may contact you.

I also wrote down the letters S-U-D-E-P. She said that she has never heard of SUDEP even though all four of her daughter’s seizures happened while sleeping and she has seen specialists for advice and info on how to best protect her daughter. I saw her sadness and fear turn to anger before my very eyes. How could this NOT be mentioned by her daughter’s doctors????

Danny DID make a big difference for this woman . . . and for her daughter, too. Makes me wonder if that was Danny’s way to tell me to hold these bracelets and to pass them out when it feels right to.

Made me smile. Your little guy sure is powerful.

Yeah, our little guy is powerful. Powerful enough to keep us in this fight. Powerful enough for us to break through that moment each morning —right before we’re fully awake— when we realize it’s still true. And powerful enough to get us through that very next moment, the one during which we softly cry to ourselves and think that we just might not make it through the day. But Danny’s power somehow gets us moving: don’t give up, don’t let up, don’t shut up.

We’ve been reading a report titled Sudden Unexpected Death in Epilepsy: a global conversation. Written by a consortium of people connected to the world of epilepsy, the document was put together and first published in 2005 by the National Coalition of Australian Epilepsy Associations and Epilepsy Bereaved in the UK. One passage sticks with us: ‘Perhaps the most dismaying disconnect is between doctor and patient — the failure by doctors to discuss with the patient the risks of epilepsy and how to minimise them … or to point the patient in the direction of support from voluntary organisations … I am sorry to say that this part of the report spoke to me of a basic lack of willingness on the part of doctors to involve patients in decisions about their own care and a ducking out of confronting unpleasant truths …’ — Lord Howe in Parliament, May 2002

Like the little girl met by the DDF supporter in the grocery store, Danny, too, had four seizures during sleep that we knew of. Five if you count the last one.

We are on the right track, and we are using Danny’s power.

Mariann and Mike

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July 7, 2010

Are you In The Game to Advocate for Epilepsy Funding? Go here and get in! The Danny Did Foundation is encouraging our supporters to write their elected officials for the purpose of raising awareness of our cause. We each sent a letter to President Obama, Governor Quinn, Senator Burris, Senator Durbin, Senator Silverstein, Representative Quigley, and Representative D’Amico today . . . that’s two people sending 14 letters! Take a few moments and help us fill up those mail boxes. It’s just so easy to do.

We talked a little today about what we are doing, and why we are doing it, and how we are doing it. And we wished that someone else had already done it. By done it, we mean we wish that someone would have brought to our attention the fact that a potential outcome of seizure disorder is death. Hundreds of people have told us that they are responding to epilepsy differently now because they are armed with this crucial information. No one has told us to keep our mouths shut. No has asked, Why did you have to bring this up?

Get In the Game today. We’re working hard on a multitude of issues so that other families become armed with information that allows them to formulate strategies that just might keep their loved one alive.

It’s all for you Danny, first and foremost, it’s always in your name.

Mariann and Mike

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July 5, 2010

Tick. Tick. Tick. Tick. Tick tick time keeps on ticking on. “You keep me searchin’ for a heart of gold, and I’m growin’ old.” Oh to live on Sugar Mountain.

“Yes only love can break your heart, what if your world should fall apart? ”

So Neil Young is ringing the bell tonight. If it seems fractured, then you get it. Days are montages. It’s like living from flash to flash. In and out of reality. Psychedelic, almost. “Ain’t it funny how you real when you’re findin’ out it’s real?”

Danny dominated this weekend. This weekend is about summer. The fourth of July. The neighborhood parade. The fireworks. Staying out late. All of it. Everything. And we stayed so busy around the house avoiding it all. MG and John went to their grandma’s house, so we just had Tommy, and all T-Bone needs are his Chuck Taylor’s, his plaid boxers, and various pieces of sports equipment to have a good time.

The sting was stinging hard this weekend. We approached it with each other but mostly focused on the gardening we’ve got going on around the house. We want to wash your hair tonight, Danny. After a big day out, after a long summer weekend, we want to put you in the bath tub with Mary Grace, Johnny, and Tommy and get you cleaned up for a night of slumbering and safe sleep. We want to get you in your jammies, all snuggly, Danny, and know by your satisfied little grin that there’s no place else in the world that you would rather be, and we want to read to you before we tuck you in for the night, before you say “I love you,” just like you always did. Oh Danny, our hearts and our lives and our insides are just in shambles. Everyday we look around and we still ask if you’re really gone, we still wonder how this could be, we still consider that it’s not really true.

Remember all those times in your life when you thought that you just weren’t going to make it? When the situation was just too goddamn impossible to get through? But you made it, and you learned from the experience. You learned that there’s always a way to make it, a way to fight through, and you learned that in similar future situations you could apply the principle of perspective to a tough situation, and you could know that one day you would be able to look back at the tight spot you were in, and you’d see that it wasn’t so bad after all . . .?

“Helpless, helpless, helpless
Baby can you hear me now?
The chains are locked
and tied across the door,
Baby, sing with me somehow.”

Thud.

Mariann and Mike

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June 28, 2010

It was bitter cold on 12/16/09. At least it seemed that way. Due to the cold, MG and John didn’t come to the gravesite to witness Danny’s descent. As Danny’s casket was being lowered into the ground, though, we threw in a pair of gloves that Mary Grace wanted us to leave with Danny. And from John, a handful of coins clinked atop Danny’s casket. The funny thing was the moment of deliberation John encountered while we were still in the car: he had a twenty in one hand and the coins in the other. Well, it wasn’t really funny, but in those blurry, crawling moments of time during which our minds trembled as we transitioned from the funeral mass to the graveside service, a distraction such as John’s quandary was damn near a rollicking moment.

But come ye back when summer’s in the meadow
Or when the valley’s hushed and white with snow
‘Tis I’ll be here in sunshine or in shadow
Oh Danny boy, oh Danny boy, I love you so.

The graveyard. Not much else to say about the graveyard. Just a place where broken dreams are buried. For us, anyway. Maybe someday it’ll be something else. Still working on getting the gravestone.

. . . . .

Sudden Unexplained Death in Epilepsy. SUDEP. SUDEP Awareness. We’ve been talking about it and writing about it. We’ve been aggressive and we’ve been successful. We’ve been complimented on our ability and our focus and our drive. But we haven’t even gotten started yet. There is so much work to be done. Why do we hear daily from people who tell us that their doctors do not know what SUDEP is? Why do we hear that children are brought into ERs with a first onset of seizures and are told that the seizures will most likely never occur again and are then sent home to wonder? Why do we hear from parents who are told by doctors that their children will not seize during sleep and, more incredibly, that their children cannot die from seizures? We don’t have the answers to these questions, and aren’t necessarily seeking to chase down individual doctors for a confrontational spat. Doctors, afterall, are whom we want to influence. Doctors are the first line. Doctors are the ones whom we hope —as a result of our efforts— will in general reevaluate their accepted standard of care in regard to seizure patients. In particular, we aim to be a force in encouraging and challenging doctors to reexamine what they believe to be their duty of care and their ethical responsibilities owed to seizure patients and their families.

Believe us, we respect and admire that the docs are the experts in providing care for those with seizure disorders, but there exists without doubt a need for a brotherhood between medical professionals and those afflicted by seizures. The DDF will forge that relationship. Could be a rocky road at times, but c’mon, there is no road rockier than the one we are already traveling, so we’re ready to lock horns when need be and to hold hands when that’ll do the trick.

So we’re just getting started. Gathering our bearings. Forming alliances. Digging in. It can be done and it will be done. Danny is the wind behind the little Foundation that Did. We know that there are just enough people like us out there, just enough people who have just enough drive, just enough money, just enough connectedness, just enough energy, just enough selflessness, just enough willingness, just enough doggedness, and just enough anger to cause a quantum leap in SUDEP Awareness. We will explode this awareness. We will do this not necessarily via the bureaucracy of task forces and focus groups and so on, but via nose-to-the-ground ambition and perseverance; via developing a plan and attacking it instead of having endless meetings concerning the nuances of the plan.

We’ve already accomplished much with our Seizure Safety and SUDEP Information piece created in conjunction with the Epilepsy Foundation of Greater Chicago. We’ve already had four major epilepsy centers commit to testing a seizure detection technology device that they were not aware of six months ago. We’ve already provided countless families with information and education about SUDEP and ways to confront this possibility related to seizure disorders. But as we get more time and people and money, we will spread SUDEP awareness to every corner of the globe; we will seek out more emerging seizure detection technologies; we will implement initiatives such as an investigation into what we believe is an underreported number of deaths caused by seizures; and we will work endlessly to assure that the medical community hears our call to action: talk to seizure patients about SUDEP.

You see, we wake up every morning with not just a pit in our stomachs but with stakes in our hearts. And we have to do something to fight that suffering — and we are the type of people willing to do the work to keep this ugliness away from other families. And that’s why the Danny Did Foundation will succeed in making the world a better place, just like Danny Did, just like Danny would have continued to do. Just like Danny. Just like our little guy Danny.

Mariann and Mike

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June 23, 2010

There is a limit to how far questions make sense. The ‘why’ of it, the ‘how’ of it, the ‘what if’ of it . . .. The gigantic nature of Danny’s death has swallowed us. It is wholly too much to take on and so the process of dosing it continues. But is this avoidance? Only if trying to survive is avoiding attempting to carry on.

We continue to be harassed by uncertainty. It’s presence is a constant drone. There’s nothing uncertain about it’s origin, though: the nail-biting, 64,000 dollar question, Are we going to get through this? It makes us shudder.

. . . . .

We met recently with Susan Axelrod and Jeanne Donalty from Citizens United for Research in Epilepsy (CURE). What a group. Started twelve years ago by a few moms who have epileptic kids and who weren’t happy with the status quo within the medical/research community, CURE is now a powerhouse in raising awareness and raising money to fund research that will lead to a cure for epilepsy.

Meeting Susan and Jeanne was validating as they lauded our efforts-to-date and encouraged us to continue in our mission. More than that, though, they are people who’ve either lost a child to epilepsy (Jeanne) or who have a child with epilepsy (Susan) and who we can just tell feel it all the way to the middle. They are people like us: in it to win it, and in it for the long haul, i.e., they’re willing to do the work. Susan writes about our meeting here: http://presidentscorner.cureepilepsy.org/.

. . . . .

Laying in that hospital bed with Danny laying across our chests. Caressing his hair. Rubbing his back. For nearly an hour? It is a constantly traumatic thought. A ruthless remembrance. And the face of our police officer-neighbor who was at the hospital. It’s just befuddling now. What are you doing here? What are we doing here?

There’s a certain amount of internal bargaining going on now. Bargaining, that is, in the framework of the cycle of grief. For Christ’s sake, we know it’s irrational, and we know that Danny’s death is irreversible, but it’s part of the cycle and it is heavily entertained. If this, then maybe that . . .?

Mariann and Mike

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June 16, 2010

Yesterday was a doozy from the get-go. Woke up crying. Went straight to Danny’s bed. Longed for his presence. Give us something, anything — like Danny himself. Still not there. Just kept our heads down, mostly. Defeated.

Didn’t talk to each other much in the morning. “Same sad story, that’s a fact. Moving one step up and two steps back.” We both knew what was going on: having a bad day. So went the morning.

Lunchtime brought a surreal slap in the face. A punch in the stomach, too, it seemed, as a reminder that the surreal slap in the face was actually an anesthetic to buffer the reality of the situation. The situation was a scheduled appointment, and attendance at this appointment shotgunned to every horrified nerve ending the ferocious deconstruction of our existence. So much so that to recount this experience in a third-person narrative best allows its presentation, as the intimacy of the first-person is too close, too real. It’s a messy situation, internally . . ..

The man arrived at his lunchtime appointment. His wife, the woman, was unable to attend. She was not sick, nor did she have another appointment. She could not be there because attendance at this particular appointment could have jeopardized her comprehension of reality. Her sanity, really, might have buckled under the weight of the purpose of this appointment. The woman, afterall, had a life to tend to, and people counting on her to tend to them. The woman —the exquisitely beautiful, the admirably enduring, the tragically crestfallen woman— wisely declined attendance at the appointment. She gave the man minimal recommendations and input for him to consider at the appointment.

The man sat across the desk from the funeral home director. “It has been over six months,” the man said. “Some people don’t . . .,” the funeral director started. The man cut her off. “It’s not so much for us. Others go there, and we want them to know were he is.” The man told the funeral director that the woman said that she might never go there.

The funeral home director had been kind enough not-so-many months ago to offer to the man the convenience of ordering the tombstone for the man and woman’s four year old son through the funeral home instead of through a monument company. The man remembered this offer while in the gravestone store, thinking that he could go it on his own. He could not. So he made an appointment.

The funeral home director was perfectly considerate, perfectly empathetic, without flaw, really, in directing the appointment. The man asked the funeral home director, “Does the gravestone have to have a religious symbol on it?” The funeral director made a quick call. “As he is buried in a catholic cemetery, some sort of religious symbol is required,” she said. She then asked the man what he had in mind.

The man’s legs shook, and his tears streamed. He thought of his boy, alone in the ground. His mind flashed to closing the casket at the funeral home, then to lowering the casket into the Earth. Then to a time before that, when he clenched his boy’s body, begging his boy to breathe. The man’s jaw tightened, and now the man couldn’t speak. He could not answer the funeral home director’s question. So he took out a pen, and drew his response. The funeral home director looked attentively at the drawing, then picked up the phone and called the monument company. “I have a father here who wants to order a stone for his child.” Then a pause. “No, we’re going to do this over the phone,” the funeral director said. She read off of a manilla file folder the man’s pertinent information —name, address, telephone number, location of grave, etc.— then went over the drawing the man had made, carefully spelling the boy’s name and relating the other details. The man made some motions with his hands and mouthed some words to the funeral home director, who then stressed to the person on the phone from the monument company that the ‘D’ in ‘Did’ should be capitalized and that “Danny Did” should be in quotes. Stone colors were then discussed. The man picked emerald green.

The funeral director then told the man that he would receive a package in the mail in the next few days. “Go over the details,” the funeral director told the man, “and you make sure that every single element is exactly as you want it. Any changes —color, words, anything— you contact me or them and we will take care of it.” The appointment was over.

The man thanked the funeral director. The funeral director then placed the man’s drawing into the manilla envelope containing information about the man, the woman, and their son. As the funeral director slipped the drawing into the folder, the man caught a glance of the thank-you card that the man and woman had sent to the funeral home. The man appreciated that the funeral director had kept the card.

Back in his car, the man sobbed as he considered what he had just done. He did not want to tell the woman, his wife, what he had just done because he did not want to cause her any more pain on that day, a day on which they were both having a bad day. But he wanted to tell someone.

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June 12, 2010

So get this: The Society of Professional Obituary Writers has awarded the Chicago Sun-Times’ Maureen O’Donnell two awards for her writing of Danny’s expanded obituary: Best short-form obituary about an Average Joe and Best obituary that goes beyond summing up a life. Read about it here. Now ain’t that a kick in the shorts. Congratulations, Maureen. We agree that you deserve the accolades. Part of the nominating letter from a Sun-Times Metro editor read:

People cried over the obit. They also did more. They responded. They wrote the paper about how touched they were and about how they intended to live differently as a result. And some did, by contacting the little boy’s family, sad that his life had been snuffed out by a seizure and wondering if there was anything they could do.

The family decided there was. They started a foundation to raise awareness about seizures and raise money to help families to be able to better deal with seizures at home and prevent deaths.

The story of little Danny Stanton got picked up by, among others, the Associated Press, which carried it to a worldwide audience.

It was an unusually big response to an obituary about an average kid whom few had known of — until our obit writer introduced them to him.

Danny Stanton’s life, as brief as it was, was worth reading about. And everyone got to do so, thanks to the sensitive but thorough reporting and spare but beautiful writing of this obituary writer.

We’re thinking about Danny today, thinking about his obituary, thinking about his grave, thinking about not wanting to think about any of these things. But believing that, like the editor wrote, “Danny Stanton’s life, as brief as it was, was worth reading about.”

Danny’s life is worth reading about, and it is worth knowing about. Like we say, Danny’s example to all of us was that Danny Did take his time in life, Danny Did engage others in his life, and Danny Did enjoy his life. Danny Did, and You Can Too, right?

It’s been six months today. Please Go and Enjoy Your Life, Like Danny Did.

Mariann and Mike

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June 8, 2010

We woke up today grinding and gritting our teeth. The nightmare continues. And there isn’t a greater reason for Danny’s death. Not for us. But we know what you mean and can even appreciate the offering. But that’s just something to say, right? No one could actually believe those words. Move your eyes up. See that kid, see that baby smiling? It’s an absolute catastrophe that Danny is gone. Nothing less. Yet we are compelled by the grotesqueness of it to figure it out via fanciful deductions that heaven needed another angel. Could a god so badly need another attendant? How could that idea be thought through and made sense of? Most of the time, we’re still at Day One of Danny’s passing. Back at it tomorrow.

Mariann and Mike

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June 4, 2010

We have received scores of emails and letters from people across the globe. The following has been edited for length, clarity, and privacy.

You don’t know me — we have never met as I live over on the other side of the world in Australia. My son suffered epilepsy when he hit high school. He suffered so much from the seizures, yet never let them get the better of him. He would always look at the things he could do and not look back on the things that he couldn’t do. His 18th birthday was celebrated on an autopsy table — and it was only from the councellors there that I first heard of the word SUDEP. I had found him one morning when I went to wake him for a doctor’s appointment. Along with most people, I had always thought he was safe in his bed at night.

I went hunting for others that had travelled the journey I was undertaking — but there was no one. The epilepsy organisations sent me a fantastic book on SUDEP that was published in Victoria Australia in association with the UK Epilepsy Bereaved, but other than that they really didn’t want to have much to do with us! Losing a loved one in this manner is both confusing and heartbreaking, and opens the door to so many questions!

I kept asking everyone why we were never told about SUDEP. The response was along the lines that it’s ‘rare’ and that no one wants to panic people. It was exactly the same debate that had raged back when they were deciding whether or not to inform parents of SIDS.

Our companion in sadness, anger, and determination goes on to iterate in her own words what are in fact the very cornerstones of our mission and of our Foundation: push for awareness of SUDEP, fight for the right for everyone with seizure disorders to be informed of SUDEP, provide written materials to new epilepsy patients that discuss safety in epilepsy as well as SUDEP, discuss possible preventative measures for SUDEP — i.e., learn about bed monitors and other technologies that will at the very least allow loved ones to address a seizure as it occurs. Her words are our actions — and her actions as well as she is also undertaking the implementation of these initiatives in the wake of her son’s death.

Another topic approached in this correspondence is one we have been discussing internally for a few months: Is the number of deaths attributed to seizure disorders massively underestimated? In the U.S., this number is approximately 50,000 deaths per year. But our day-in and day-out discussions with hundreds of people involved with epilepsy issues are leading us to believe that this number is likely to be much larger. It seems something worth looking into, anyway, and funding a research study could be a way to accumulate data that might bolster our suspicions.

Later in her letter, she writes:

The biggest question I had after my son’s death was: Why hasn’t anyone started an organisation that addressed the issues of SUDEP previously? Surely there have been others capable of pushing for change and education. No one should have to go through what I have been going through since my son’s death.

I have been invited to talk at the Epilepsy World Health organisation Conference (Australia/Asia/UK) in October in Melbourne, Australia. I intend to stress how vitally important it is to inform patients of the risks of SUDEP, and that hiding behind the word ‘rare’ as an excuse is totally unacceptable. I want everyone to understand . . . that withholding this vital information from me prevented me from doing everything possible to safeguard my son.

Boy, that’s just what we think, too. Our friend from Australia’s son died 22 days before Danny. She has started her own organization to address the very same issues that we are addressing. We are all on to something here, and we are all going to change the way the world views seizures, epilepsy, and SUDEP.

Someday we’ll meet our Australian cohort, probably at some big conference in some big convention center in some big city. And we’ll all open up our purses and our wallets and we’ll show each other pictures of our children who have died. We’ll cry, and then we’ll comfort each other via pointing out to each other the strides that we have all made in informing and educating people about seizures, epilepsy, and SUDEP. That is an anticipated moment of victory and one that should be repeated over and over throughout our lives. Afterwards, we’ll go back to our hotel rooms. And as we get into bed, our broken hearts will slowly pitpat, our throats will tighten as our breathing quickens, our minds will race to ward off the panic, and our eyes will close and we will think of the son we lost, of the the little boy whose death spurred a movement to advance a cause.

Beyond it all, though, we’ll think of our little guy Danny: Johnny’s best friend, Mr. April Fools Day, the Kickball Kid, the Absolute Best, Panchu, Daniel Curious George Washington Stanton. And we’ll just miss him, and the sadness will be unbearable, and we’ll go to sleep, and we’ll wake up, we’ll find reasons to smile, and we’ll embrace those reasons, and we’ll carry on.

Mariann and Mike

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June 1, 2010

Here’s to the summertime, it’s arrived. “Thanks, Danny, for a lifetime of summertimes, all the time.” That’s what we wrote on the thank-you cards for those who came to Danny’s wake. Were you there? We were, but still hardly know it. Memories of the wake are just arriving: remembrances of how we spent those seven hours of our lives; taking a break every once in awhile to kneel down and kiss Danny. Did you touch his face at the wake? Touch his forehead? Stroke his hair? So perfect. Perfect, perfect, perfect, perfect. Share a memory with us if you can. He had on a rugby, jeans, his favorite shoes. We picked out his clothes. Who put them on him? There he was, in that little casket. Danny.

The next day, we closed the casket on Danny. Some of the hardest thoughts are just the simplest of thoughts. Thoughts about the physical state of things. Makes us sick to our stomachs.

The warm weather is stirring up the tempest. It’s bringing unpleasant thoughts — reminding us of things we have to do. Like pick out a gravestone for Danny’s grave. We must sound like a couple of broken records, but we still can’t believe it. We cannot believe that Danny is gone. Yet, we put Danny’s name into Google, and there he is — there’s a picture right there of his little casket. Sing us away and turn back the years, Sing us back home, Make our old memories come alive.

We’re trying hard to keep our chins up, to keep a stiff upper lip, as Greg Kelly would always advise. But the dying that each day brings, man, it just gets harder and harder as visions of Danny’s future rumble through our heads. Visions never to materialize. Visions brought on by summertime. Visions brought on by being down by the harbor with MG, John, and Tommy. We’re a family of six, and we’re traveling light, traveling with tears, traveling with death. Incomplete.

. . . . .

Danny was going to be tall, like his uncles, a real bruiser on the field, and on the beach. We keep reading about and hearing from others about having faith and believing that maybe, just maybe, there’s a reason for this. Hell, we’ve said it ourselves, right? Sometimes that’s all we’ve got, but today, tonight, there’s none of that. No good news, nothing positive, no strength: just mourning.

Maybe tomorrow we perk up a little bit. Maybe not.

Jesus Christ, kid, we’re gonna make it. But goddammit, Danny George, we are absolute wrecks on the inside. Hey Danny—you can bet it all that your mom and dad are going to turn this world upside down in your name.

Mariann and Mike

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May 29, 2010

Today, we just don’t want to do this anymore. We’re exhausted, we’re beat down, we are short of breath. We are riding on the edge of this thing —this life— and we are teeter tottering ever so diligently for our kids and for each other. Our legs are weak as we force ourselves to push forward. Our minds are alternatively occupied with thoughts of panic, with horrible recollections, with heartbreaking memories, with the current moment, with sadness. Can a mind turn inward on itself, can it reflect on what it itself is experiencing? Can a mind attack itself? If that sounds batty, it’s because it is batty. And although of course the answer to these questions is ‘yes,’ it seems an incongruous way for us to think given that we are using our minds in such a dedicated and unambiguous way as we commit ourselves to the mission of the Danny Did Foundation. But our life is incongruous now, it is just an absurd existence.

Maybe it’s just the crash from our event at Misericordia. So much goes into the planning, there’s so much build-up, there’s so much positive energy. Then we’re back to the day-in and day-out, wanting to wring the world’s neck because Danny isn’t here. Maybe it’s that John and Mary Grace might be showing signs of how affected they are by Danny’s death, and we are hyper-concerned about providing them any and all outlets and tools that will help them work through their feelings. Maybe it’s because it’s Saturday, or because it’s sunny.

We can’t stay away from our life and from what it held in the past and what it holds now. We keep telling each other that we don’t have any options but to do our best to lead healthy lives. Probably just need to take a break every once in a while. Take a break from everything to rejuvenate, to refocus. To come back stronger, to be unbelievable in our dedication and in our drive to make the world a better place. To be unbelievable, that is, to be like Danny.

Mariann and Mike

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May 25, 2010

Our event at Misericordia was an enormous success. There were over 300 guests. There were memorable speeches that both inspired and raised awareness about epilepsy and SUDEP. It was a powerful evening.

Danny was everywhere, his presence —so gripping now in so many lives— swallowed our supporters and elevated their desire to be involved . . . their desire to get in the game, so to speak. Danny’s force was simply magnetic. His vitality in this world is stronger than ever: he is an undeniable force.

Get In The Game: that’s the proposition that we and everyone took from the Hearts and Hugs evening at Misericordia. Get In The Game. That’s what Danny did in his life. Danny Stanton Did Get In The Game. The game of life. The game of living. The game of being involved. Like we say, Danny Did Engage Others In His Life. And although Danny is not here in body anymore, Danny’s backbone is still here —straight, strong, and steady— providing direct support; guiding and sculpting our raw motive as we challenge others to get in the game.

Danny is giving us hope. Maybe we are starting to feel this. Sometimes, anyway. We are talking about it, that’s for sure. We want to believe it. We understand that our options are finite. We have to think right to live right, that’s what we are telling each other. We have to build our moments of hope, string them together. In the program book for Misericordia, we put it this way:

xxxx

Dear Friends,

Five months ago, our lives changed forever. In a flash, the world became an unbearable place because Daniel George Stanton was no longer in it. We were crushed and alone, left barren and wasted, void of desire and stripped of belief.

We’ve searched for answers in every conceivable way. Why did this happen? How could this happen? Could we have prevented this? What we’ve found is that there are no answers, and there are no words. Joseph Kennedy, who too experienced the death of a child, expressed this exact sentiment in a letter to a grieving friend whose son had died:

“There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. I cannot share your grief, because no one could share mine. When one of your children goes out of your life, you think of what he might have done with a few more years, and you wonder what you are going to do with the rest of yours. Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something—something perhaps he didn’t have enough time to do. And, perhaps, that is the reason for it all. I hope so.”

Today, as we strive to find strength, we rely mightily on the power that is a single moment of hope. Such moments are elusive, yet we recognize their transformative ability if only we can string enough of them together. You all have given us one of those moments tonight.

Tonight, we are all here together accomplishing something, and tonight, we are all allowing ourselves to accept an answer to this tragedy in the form of a reason: the creation of the Danny Did Foundation. For the rest of our years we will pick up where Danny left off, giving our hearts and our hugs to those in the world who need our help. Each of you is a champion for our cause, and, more than anything else, each of you is a champion for Danny.

Thank you for joining us tonight, thank you for this moment of hope, and thank you for your continued support.

xxxxx

A single moment of hope. Each of these moments, though, is juxtaposed against a single moment of desperation. We tell ourselves this is because our loss is still so new. But we don’t believe this. We believe that single moments of anguish and despondency will more often that not accompany single moments of hope. We’re open, though, to new channels of thought.

. . . . .

Man, the sun was so bright on our way to the hospital. The glare, it’s still in our eyes. We can still see you, Danny, you are crystal clear to our eyes, our minds, our hearts. The panic of that morning still makes us shake. Will it always? We can still hear our hearts beat as they did that morning. Jesus Christ, Danny, we knew that your heart wasn’t beating. Your little, beautiful, huge, affectionate, embracing, warming heart. Sometimes, sometimes, sometimes . . . Danny, sometimes there is no way to move forward.

. . . . .

Single moments of hope. String them together. Take the pain in doses. Concentrate on the promises we made to each other: Danny will have an impact on this world long after his last breath; we, as a family, will keep on going; we will nurture and develop the Danny Did Foundation as if it were Danny himself; the Danny Did Foundation will make the world a better place, just like Danny Did and just like Danny would have continued to Do. More than promises, these are obligations sacred to us.

Every little thing is a work in progress . . . .

Mariann and Mike

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May 16, 2010

The atmosphere among Team Danny Did was electric as nearly 75 runners set out in the early morning sun along Chicago’s magnificent lakefront for the culmination of months of training as they embarked on either 6.2 or 13.1 mile runs. We saw old friends there —people we’ve known for over 30 years— as well as new friends —people we just met this morning. Everyone had this in common, though: they were all running for Danny and for the Danny Did Foundation. It was an impressive turnout and an emotional time for each of us.

Each of our events has been that way. We are always among dozens or even hundreds of people; we chat it up and laugh and so on and so forth, and that’s the way it should be in such settings. But if you ever look real close and at just the right moment, you’ll be certain to see tears streaming down one of our faces. How could this not be? There always comes the moment at events for the Foundation when we look around and take it all in and ruminate on the reason that we are there. And these moments certainly are not limited to DDF events: baseball games, going to the park, looking at the swingset in our yard . . . .

When we got home, Johnny and MG went to their friend’s house and Tommy took a nap. We were tired, having gotten up early, and were sitting on the couch in the front room. And we just looked at this picture of Danny on the fireplace mantel, and we were washed over by sadness. A fierce, nearly debilitating sadness. One that hurt, hurt, hurt. There’s a story behind this picture: it was taken last summer at our block party. Danny was sitting in the cab of a CFD firetruck and a neighbor asked Danny to look at her so she could take a picture of him. Danny wouldn’t look over for the picture as he just wanted to keep pretending to steer the truck as his little hands maneuvered the over-sized steering wheel. Our neighbor —still trying to snap a picture of Danny in the truck— then said, “Hey Danny, look over here and give me a smile for your mom.” So the resulting picture is just that: Danny smiling for his mom, and it could not be more perfect.

But looking at that picture today just brought everything rushing back. Thoughts of what Danny isn’t able to do anymore. Chase fireflies on hot summer nights. Take a leak against the garage in the alley, as little boys are wont to do. First day of kindergarten. Hug Tommy. Hug us. These are tough thoughts to consider, and we are making great efforts to limit this type of thinking as we pursue our new relationship with Danny.

But memories are memories, and sometimes they cannot be contained or controlled. Memories of finding him. Memories of thinking we thought we heard him start to breathe. Memories of pulling back his eyelids. Memories of kneeling over him and feeling a sense of calm because there is no way in the world that we were kneeling over a dead child. No way in the world. Memories —vivid snapshots, really— of John and Mary Grace and Tommy’s agonized faces as their terrified eyes attacked our stupefied eyes that morning, demanding an end to all the drama. Memories of him laying on our chest in the hospital. Memories of his body growing cold against ours.

Still, we’ll carry on and continue to try to manage how we think. But really, these thoughts are never going to go away.

Mariann and Mike

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May 12, 2010

Five months ago today was December 12, 2009. That was the day.

We’ve hit so many peaks and so many valleys in that time, the rise and fall of emotion is beyond an anomalistic condition of our psyches and more like a fixed mindset with impenetrable parameters, i.e., its sidewalls are so thick and so bouncy and so capable of handily —and effortlessly— containing our thought processes. In other words, our predicament is its own entity and it has rendered us helpless.

But maybe not? After a miserable Mothers Day, we regrouped. Just the two of us (and Tommy, of course), over breakfast. Are we going to get through this together? Share your lovin’ and you’ll live so long. What is our plan, we asked each other. Together? Apart? Out of nowhere we were there, at a heart-stopping crossroad. The seriousness of the conversation, the reality of the situation, was suffocating. Didn’t we talk about this at the outset? Didn’t we decide that we were going to ride this road together? Didn’t we say that we’d defeat this darkness for ourselves and, most importantly, for our other kids? Yet, there we were, exhausted, asking ugly questions, facing the future with blank stares. And it was only Monday.

We thought that we were close enough to each other, but a closer –and really only a cursory— evaluation revealed two people on two very different paths. What surfaced, then, from this conversation, was as lonely as it was hopeful: lonely because any decision to ‘move on’ from Danny’s death causes a great deal of consternation, confusion, guilt, and isolation (from yourself, in a sense); and hopeful because any decision to embrace / accept (that’s hard to write) what happened to Danny and then to attempt to fit that into our lives does actually provide a moment of calm.

And, on that day, we chose the latter. For us, for MG, for John, for Tommy. And for Danny. Now, who knows what measure of consistency that decision will provide in our lives. There’s a good chance that whatever positive energy we have captured will disintegrate. But, maybe, if we work so hard, if we stop dying little by little, maybe we can harness that energy and multiply it. Maybe we can do that for Danny, for our little guy Danny.

And just writing that —’for our little guy Danny’—well, that can suck every drop of positive energy out of us in a heartbeat. But we’re going to hang in there. Hang in here with us. For our little guy Danny.

Mariann and Mike

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May 9, 2010

No mother should have to go through what Mariann is going through. Unfortunately, we have met several mothers who are suffering from a either a recent similar loss or from a loss where some time has passed since their child has died. Not that the amount of time that has passed matters. It doesn’t. We continue to realize this over and over as we are now recognizing a pattern that is not predictable. An oxymoron? Who knows. The point is that these days we don’t know what any one day holds for us in terms of how we will deal with the life we are living. Some days we actually consider hope for the future as an option, other days are just one big crushing experience. Either way, it’s all mostly internal.

Since Danny died, we have been through Christmas, Tommy’s birthday (New Year’s Eve), our birthdays, Danny’s birthday, John’s birthday, and our wedding anniversary. All in under five months. Now Mother’s Day is here. A day for mothers. Mariann is a mother of four kids. Her third kid, Danny, happens to not be here in body with us anymore.

Mariann and Danny were at a point in their lives when their bond was a strong as it could ever be. Danny was in pre school two days a week for just a couple of hours on each of those days. So the rest of the week —especially on the weekdays— it was the Mariann, Danny, and Tommy show. They would take John and MG to school, then hit the road. Target. The Y. The library. The park, the museums, the beach, Costco, Jewel, the forest preserve. Everywhere together, all the time. And with Tommy being so little, Mariann and Danny were just like two buddies hanging together day-in and day-out.

There is a different relationship that mothers and fathers have with their kids. Mothers like Mariann have such an intimate knowledge of every little nook and cranny of their child’s life. This is a result simply of the amount of time a mother like Mariann spends with her childern. We sometimes look at John and Mary Grace and we think that, for all the pain we are experiencing, we still cannot imagine what they are experiencing. And that’s how I think of Mariann: I cannot really imagine what she is going through, and it’s almost too hard to approach. It’s a tight spot.

We haven’t shared a great deal with each other about what we are thinking from day to day. We just assume that we are thinking the same things. The worst of it is knowing that, really, you can’t go to the one person who is experiencing the exact same devastation as you are, and not knowing exactly why not. Does that seem strange?

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May 4, 2010

The coaches charity game at St. Margaret Mary’s last week was a huge success, and it was just one more example of people coming together to support what we are trying to accomplish. The list of supporters is growing: Lotties Pub, Do’ or Die Hair Salon, Loyola University, Lizzie McNeill’s, West Leyden High School, Toasted Ox, St. Margaret Mary’s . . . each of these places reached out to us and said “we want to help.” Each has helped in raising money and awareness of our mission.

Sometimes the number of people involved in putting together and the number of people attending these events gets lost on us, i.e., sometimes we don’t so carefully consider everything that so many people are doing to help and support not only the Foundation but us and our family as well. But when we have moments of clarity, moments when we take the time to breathe deeply and feel the sun on our faces — in those moments we can reflect immensely on the love and support of our family, friends, and neighbors. It is in those moments that we might feel some hope.

And it is those moments that we can, at the very least, say to each other: Danny has touched so many lives.

Mariann and Mike

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May 3, 2010

What were the last words you spoke, Danny? Did you sleepily say goodnight as mom carried you up to bed for the last time? We didn’t know it was the last time, Danny. I can see you, though, in mom’s arms, just across the counter from me in the kitchen. You are so tired from a day of fun, fun, fun. I took off work that last night, Danny, so we could go to John’s basketball practice. You zipped around that gym, up on the stage, through the school hallways. You had a blast. Danny, I can’t remember the last words you spoke to me. I want to know, and it is hell every moment that I don’t know. And I don’t think that I will ever remember.

How did your life end, Danny? Goddamnit, Danny, what happened to you that night? Why did you die, Danny! Over and over and over that night is replayed. I know that I walked by your room sometime around 4AM. I know I poked my head in and listened to you and John. I did do this, right? Were you still alive? Why didn’t I move your head and look at your face like I usually did?

Danny, what were the last words you heard? I know from me they were “I love you, Danny boy.” The last words from my lips to your ears. Did you hear them? I think that you did. But the very last words to ever fill your little ears, Danny, came from mom. And I know she said, “I love you, sweet boy.” And I know she kissed you so gently on your forehead and then on your nose and then on your lips. And I know that she made sure that you were warm and snuggly and safe. And I know that when she whispered to you, you knew that there was no better place in the world for you to be than right there with your mom. I know this Danny, because that’s how you were put to bed each and every one of the over 1700 nights prior to your last night.

. . . . .

Lots of stuff going on: John’s baseball games and fantastic success in school, Tommy’s new penchant for swimming, MG’s softball games and continuous search for new books. Our environment is changing, too. New things around the house: a basketball court in the yard, a tree cut down, the swingset relocated, a room painted, a bush planted. And as if by a necessity mandated by our minds, each and every change must be beamed through the prism that is the loss of Danny, then viewed, assessed, and dissected until the change is nearly unable to be appreciated. We would have made these changes anyway, right? We ask ourselves this question and there is no way to know the answer.

And so, we guess, we are moving forward, but everything we do and every change we make is so relative to a time not so long ago, and it is a challenge to reconcile the two. A challenge to bring new things and experiences into our lives knowing that we cannot share them with Danny.

Mariann and Mike

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April 30, 2010

Danny-Danny bo-banny banana-rama fo-fanny fee fi mo-manny . . . Danny! It’s the naaaaaame game!!!!

Danny loved playing the name game. Picturing him smile as we sang this to him is too easy: there he is on the kitchen chair, watching the words come out of our mouths, his blue eyes darting around and his eyebrows arching as he keeps up with the fast pace of the song as we sing it over and over. And he’d usually throw in a little snap, too. Danny was a great snapper.

When we think of these moments —these ‘name game’ moments— the reflection can be as powerful as the actual experience. We can feel his hair, see the Gatorade stain on his lip (it is red — cherry Gatorade?), watch as he turns his head to the side and gives a sly smile, absorb the feeling of his little hands caressing our cheeks when we get close to him. Mostly, though, our reflections show that Danny opens his heart to the people who love him. Maybe that was his greatest ability. Such a little boy with such an enormous capacity to give and receive love. That capacity defined the moments of Danny’s life. And aren’t we feasting on those moments now.

Mariann and Mike

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April 27, 2010

Danny,

We never could have imagined our lives like this. So unbearable. So unbelievable. Our tears and our heartbreak are non stop. To hear people ask if we are doing better, or if we are getting better . . . Danny, we will never be better. Around the house, out in front, in the alley, you are everywhere. We see you rounding the corner on your scooter. We see you peeking your head out of the tree house. We see you alive, Danny, rockin’ and rollin’ to your favorite tunes through your incredible life.

Danny boy, this is no life for us to live. We are told a time comes when healing begins, but that time is nowhere in sight. We remember so vividly a time not long ago at all. A time when you were the first one up every morning, giving us huge hugs, telling us that you loved us, eating pancakes with powdered sugar on them. Sometimes, Danny, this grief is too much. When we ask ourselves how can you not be here, our grief is too much. When we see your Crocodile Cruiser bike, our grief is too much. When we see the spot on the wall were we drew a line to mark your height, our grief is too much. Danny, when we look at the spikes you wore everyday last summer, our grief is too much.

It’s hard to breathe, Danny. It’s hard to know who we are. It’s hard to feel cohesive. It’s hard to have new experiences and it’s hard to replicate old experiences. It’s hard to celebrate anything. It’s hard to wake up every morning only to realize how sad we are. It’s hard to think about ten years from now. But sometimes we do, Danny, and we think of you.

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April 24, 2010

(I saw Danny last night . . . just a flash in a dream . . . he road up on his bike . . . pulled up in front of me . . . smiled. He was wearing a grey tee shirt with the number 12. Danny just smiled his big smile, his eyes as blue as ever.) —mts

. . . . .

Johnny and Danny were two kids in synch. It was like four arms on one body . . . think Mickey Hart and Bill Kreutzmann. They beat their drums together. Boom, boom, boom. Sunglasses on, eyes closed save for occasional peeks at one another, matching tank tops, summer sun shining down, smiles all the time, feeling each other’s presence, knowing each other’s moves. It’s just a vision, two brothers, playing in the band, bodies moving in synch. Two brothers. They were two years apart almost to the day, and they were (are?) twins.

Mary Grace wrote a great note: “I hope you have a great day! Danny is with you forever! Love, MG xoxoxo.” MG has a real sense of what is going on here. She feels what’s happening and she believes that Danny is here with us. So many people do. So many people feel Danny’s presence in their lives, and they tell us that their lives have changed for the better because of Danny.

MG and Johnny had their first baseball games of the season today. It’s going to be a tough season. Baseball and summer are what Danny was all about. Looking at some pictures from last year was just too hard. Sometimes, looking at any pictures of Danny is just too hard.

. . . . .

Enough already. That’s what we are saying to each other. Enough already. It’s time for Danny to come home. Bear with us:

It’s December 11, 2009. The Duffy’s are over and we’re having pizza and playing games. It’s getting late, and Danny is tired. Time to go up to bed. Night night, Dan-o. See you in the morning, buddy. Love you. Up goes Danny, tucked in, given soft kisses on his lips and forehead. After a little while, the Duffy’s head home and we all go to bed. Around 11? Maybe it was earlier. Johnny and MG are tucked in, Danny gets another kiss. Tommy is already sleeping. Maybe we didn’t know it at the time, but everything was perfect. Our lives were perfect. We go to bed. When does Danny start seizing? What if one of us happened to check on him while he was seizing? How long did he seize for? If we had been there for him, could we have helped him? We knew what to do. All we needed was the shot. Just a shot so that maybe we could lay down next to Danny once more, lay down as he drifts off to sleep and dreams about that new bike he was going to get for his birthday.

Mariann and Mike

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April 19, 2010

Someone recently said, I am sorry that you have to live your life with a broken heart. Another person, who lost her son six years ago, said, I don’t know that I have yet begun to grieve. Two meaningful, frightening, appropriate, and provoking statements. Neither, though, has a dedicated place in our lives right now. The substance and significance of both statements cross our bow from time to time, but only fleetingly. The reason is simple: we’re not ready or able to consider a life lived with permanently broken hearts, and our depth of grief is so great and can be approached only in such small doses that wondering if what we’ve felt so far is just the spray from an approaching tidal wave is a notion too terrifying to consistently consider.

So where are we? Each morning, when we walk by Danny’s room, we hope that he is in his bed. That’s where we are. Fantasyland.

. . . . .

There were two fundraisers for the DDF over the weekend. It was the battle of the bars as the Toasted Ox on the Northside and O’Rourke’s Office on the Southside hosted dueling events on Saturday night. That the two events were on the same night was just happenstance, but maybe we should look to make this an annual engagement with the bar that raises the most money getting a DDF trophy to keep for a year.

What was great about these two events is the way they were put together. People decided they wanted to do something to support the Danny Did Foundation and they just went to work and did it. They didn’t ask us for anything and didn’t even expect us to attend the events. They reached out to people not in our usual circle (but they are now!). And way more than any money raised is the awareness that these events brought to people we would not have reached on our own. Just like with the hoops tourney a few weeks ago at West Leyden High School, and just like the basketball game this coming weekend being hosted by the St. Margaret Mary athletic department and benefiting the DDF. Just people deciding they want to help and then making it happen.

It’s all pretty impressive, pretty overwhelming. And it’s all helping to keep us warm. Thanks.

Mariann and Mike

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April 12, 2010

What a night last week at West Leyden High School (home of the Eagles). The DDF was invited by teacher Tony Pecucci to be the recipient of a fundraising event put together by Tony’s students. Tony’s kids organized a three-on-three hoops tourney, taking care of everything from marketing the event to getting food and drinks donated for the event to establishing a registration process and creating team brackets. The kids did a great job and over 100 athletes participated.

What really struck us about the event —more than the enthusiasm and skills of the kids, and more than any money raised for the DDF— was the sincere interest of these high schoolers in being a part of helping the Danny Did Foundation. Afterall, none of these kids knew Danny. None of these kids knew anyone in Danny’s family. But once their teacher introduced the kids to Danny and the Danny Did Foundation, they were all on board. They took an interest, they became motivated, and they excelled in their effort.

There was Sam and Robert and Brianna —and scores more— kids we didn’t know who bravely approached us and earnestly expressed condolences. They just said it, and they said it with conviction; they said that they were glad to be apart of the event, and they said that they look forward to the event being bigger and better next year.

This simple occurrence in Northlake, IL, was a great reminder for us of one of the core missions of the DDF: awareness and advocacy. Although we did not talk about seizure disorders or SUDEP at the tournament, the kids have become aware of these concepts via their participation in the project. And so there are now over a 100 high school kids who have been introduced, however so slightly, to the issues of epilepsy. What this means is that these kids have become conscious of an affliction that affects 50 million people worldwide and three million people in the United States. What this means is that these kids are one one step closer to becoming a part of a solution. That’s important, and that goal —to involve young people in this fight— is the driving force behind several DDF initiatives currently in the works.

. . . . .

We’re trying as of late to stay focused and level-headed. For the most part, though, this is not working out, on an internal level. In the midst of knowing that we are surrounded by boundless love, we still experience infinite grief. Should a balance between the two —between our knowledge of unending support and our state of inconsolable despair— exist? Who knows. Probably. Maybe it does.

Shock. Denial. Anger. Bargaining. Depression. Testing. Acceptance. Those are the stages in the cycle of grief. We are involved with each of them. Why is Danny in a box? Those words look cold, and they are cold. Cold to write, cold to think. Cold to know. We’ve stopped asking when this ends, because it doesn’t end. We’ve started realizing that we are different people now. Very different people. This is inevitable, right? What else is inevitable? Feeling defeated. Not knowing what to say. Not knowing what to think. Not knowing how to behave. And isn’t it inevitable, too, that a time will come when ‘not knowing’ will change? Maybe that’s Acceptance.

In our family room, there is the spot were we brought Danny that day, that Saturday morning. The spot we laid him down after running with him in our arms from his bedroom. The spot on which we attempted to resuscitate him. We’ve probably already mentioned this somewhere in our journal. The spot is still there, and so is the sight of Danny. So is the sight of Danny. So is the sight of Danny. Over and over and over again. Danny! We’re here Danny, kneeling over you. Please, Danny, please. Please Danny, breathe.

What’s that? Denial, Anger, Bargaining?

Mariann and Mike

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April 9, 2010

When we were told that it was time to go —that the Medical Examiner’s office had arrived to take Danny to the morgue— we were led to a gathering area outside of the Emergency Room. Many people were there: family, a police officer who is our neighbor and who heard the call of an emergency situation at our house, a priest. No one new what to say, and to our recollection no one really said anything. Except the priest. He said, “you’ve been given this burden, it’s yours to carry.” He offered no religious undertones with his observation, and rightfully sensed that as an appropriate tact.

We left the hospital on that sunny December morning holding each other, trembling, completely unaware . . . . We got into the back seat of a car and were driven home. What happened once we got home has not yet fully come to the surface of active memory. It’ll be related, though, once the complete recollection presents itself.

We do remember leaving the house, however, earlier that day. Two hours earlier. Danny was put into the ambulance, CFD #46, if memory serves. We couldn’t ride in the back with Danny this time, as we had been able to on previous emergency trips to the hospital. We knew that wasn’t a good sign. One of us could ride in the front of the ambulance, the other could follow. Still, regardless of what we’d experienced and witnessed in the moments before Danny was put into the ambulance —regardless of what our eyes had seen— the words and the idea that Danny was dead were not yet a part of who we were.

It was early in the morning, and as we headed east to the hospital, the sun was spectacularly bright. Sun spots were in our eyes. Like in a dream.

. . . . .

The idea that Danny is dead is still not yet a part of who we are. It’s too hard to accept. So hard to accept. The idea that Danny is dead is the burden we’ve been given. The acceptance of this burden still seems inappropriate and foreign. The complication involved in reconciling the idea and the fact is a real show stopper. Because if we actually sit down and convince ourselves to consider the facts of our lives as they truly are, then the idea that Danny is dead has to become a part of who we are. And it’s just to early for that.

Mariann and Mike

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April 7, 2010

Danny’s scooter still hangs off the back porch, its handle bars finagled between the slats of the back porch’s railing. His big wheel is there too, right under the porch. His bike hangs from a hook in the shed. His baseball mitt is in our bedroom. We had it in his casket, thinking it’d go with him, but we took it out to keep with us. We placed a different mitt in the casket to go with Danny, but pulled that one too at the very last moment. Because it wasn’t his. We are what was his. We would’ve gone with him if we could have.

That very last moment stands out. That very last moment we saw Danny’s body. That moment we said to the funeral director, let us close the casket. Beautiful Danny. We had pinned a STANTON name tag from the police academy to his collar. He had on his favorite jeans, and a nice, warm rugby shirt. He didn’t have too much makeup on, just a little on his cheek where blood had pooled when his head rested for an hour or so on our chest at the hospital.

His dresser drawers are still full of his clothes, and his bed is full of notes and toys and stuffed animals from Mary Grace, Johnny, and Tommy. Time and time again, we stare at Danny’s things: his mitt, his clothes, his bed. The feeling associated with these times is numbness coupled with a lack of coherency. Throw in a heavy dose of incongruence — now you’ve got a sense of what’s going on.

Most times now, the threads of our existence are so loose. It’s as if our very selves could disintegrate — just like that — at any moment. Fall apart. Whoosh. Poof. Gone. Yet, there are moments of uprising, of strength, of uplift. These moments come from friends, family, and thoughts of Danny. Moments of strength. Imagine a moment of strength at a time like this. Even when we experience one, though, it’s like an experience that doesn’t exist.

Danny. Danny George. Daniel Curious George Washington Stanton. Number three. Dan-the-man. Dan-O. Bucko. Buck-a-roo. Sweet Danny boy.

We’re riding it out everyday, Danny, crawling from one moment to the next. There doesn’t seem like there’s reason to believe in anything, but we’ll hold our heads high, buddy, for your three best buddies. We know they need us.

Mariann and Mike

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April 4, 2010

“Hi Danny.”

“Hi Dada.” When Danny said “Dada,” he used a hard ‘a,’ as in ‘bat.’

“You see those two trees over there?”

“The two big ones?”

“Yeah, they’re the oldest trees in Edgebrook.”

Danny and I were sitting in the backyard, on the same two wrickety iron lawn chairs that we’d sat on so many times before. The two chairs were from a set of four, but we only had three. (“Danny, did you eat the other chair,” I’d ask. “Dad!!!!”) We were facing West, looking at the two trees, identical in size, across the alley, over the neighbor’s house, a block away. The one on the left had a big nest near the top. Our chairs were always close, and I’d hold and rub his hand while we talked. And that was fine with Danny.

“What street are those trees on, Dada?”

“You’d think I’d know by now, right bucko? I think it’s Leroy.”

“Dada, you said the tree in front of our house is the oldest tree in Edgebrook.”

“Hmmm. Danny George, you got me there. I think it’s a three-way tie. Danny?”

“What dad?”

“Do you know how much I love you?” Danny would turn his body and look me straight in the eyes at a moment like this. And moments like this would come all the time. Danny’s sweetness, his intelligence, his vulnerability, his habit of seeping into my bloodstream, of filling my heart with his breath — these characteristics of Danny’s called often for these moments. “I love you more than is possible, bucko.”

“I love you more than the whole world, Dada.”

. . . . .

Remembrances offer no satisfaction, only heartache, right now. So many conversations with others who’ve traveled this path have lead us mostly to one place, for now: this burden is ours, this road is lonely. That’s not what we’re told, but what we take away. How could it be any other way, really?

Mariann and Mike

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April 2, 2010

On our Publications page, Johnny just posted another note to Danny. In this one John writes that he wishes Danny could be at baseball practice with John, and that John knows that Danny is there with him. And we just want to scream. Scream for John. Just scream . . . Danny! Danny! Danny! Danny! Over and over and forever and ever. More than anything, though, more than anything else, the words we want to scream are these: We Want You Back Danny!!!! Crazy, we know. But not really, and we know that too.

Going to baseball practice with John is weakening. Can’t make a fist. Can’t grip a bat. To sit on the same bench that we sat on eight months ago as we watched John and Danny take home the league championship . . . we are at a loss for words on how to describe this feeling. To sum the feeling up in one word, though, would simply be this: sinking. A deep breath and a heavy sigh are about all we can muster. At a moment like this, we can’t ’snap’ out of it to see the treasures that are Tommy and Johnny and Mary Grace. Moments like this don’t allow for those comforts and realities; moments like this leave us nothing but helpless, drowning, scratching for a friend to confide in, someone who’ll just absorb our words and silently accept the depth of our devastation. Luckily, such a friend is often there.

Summer and baseball. We feel the wonderful warmth of the sun. We close our eyes and feel the wind, and we listen to all the voices it carries. We look at the baseball diamond, though, and all we see is that Danny stood right here, and he stood right there; little Danny held the championship trophy high above his head right in that spot over there. Maybe that was one of the happiest days of Danny’s life. We remember the celebration after that game. The barbeque at the house. The pictures. The joy of being a family with a couple of kids that just snatched a championship little league game. Now the memory brings us to our knees.

. . . . .

A few mornings ago, Tommy comes downstairs and says “where’s Danny? Danny! Danny where are you?” Out of nowhere. Tommy knows that Danny is in Tommy’s heart, because that’s what we’ve told Tommy from the outset. So what’s that? What’s with Tommy —out of nowhere— contributing to our remembrance of Daniel George in his own two-year-old way? We like it . . . Tommy bringing Danny right out into the open. That’s what we ask of anyone who knew Danny and everyone who knows of Danny — to talk about Danny.

Mariann and Mike

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March 31, 2010

No matter what, a light is always left on at night in John and Danny’s room. It’s always been that way. Be it a night light, a small lamp, a closet light. Always something. Having a light remain on now has taken on a new importance, even though no one has slept in that room since we lost Danny. It’s symbolic, you could say. Or habit. One thing’s for certain, panic arises if a light is not left on at night.

We go into that room often. John’s clothes and other things are in there. Books. Art supplies. Toys. Tommy likes to shoot on the Nerf hoop that hangs from the door. One of the closets in there has the only full-length mirror upstairs, so the room gets plenty of traffic. It’s also a place to go and cry. A place to kneel down and sob. A place to look for things of Danny’s. Things maybe we missed. It’s a place to visualize. A place to talk to Danny, or at least try to. A place to wrestle with attempting to sanely struggle with the thought of the future.

The Danny Did Foundation is maturing quickly. It has so far offered a great deal of support in helping us to simply stand up. It’s somewhere to focus attention and energy. It’s somewhere to ‘fake it until we make it.’ It offers insight into the idea of us having a ‘public face’ and a ‘private face’ — a concept that was introduced to us soon after Danny’s passing; the DDF is an outlet for a ‘public face’. It’s a place where we can be productive in the wake of a something that tells us to just shut down.

Maybe the shock is finally wearing off now. Or maybe it’s just at this moment and at that moment that the shock is wearing off, and just for this moment or that moment. Because it feels so raw to us now. We talk about each experiencing the exact same feelings and fears. A particular frequent experience manifests as a shortness of breath at the onset, which is a warning to gain focus of your thoughts and control of yourself or you will not make it to the next moment. Sheer panic. Anxiety attacks.

We’re still feeling so helpless in this situation, so dazed, so shocked, so lonely, so fearful, so traumatized. All of these things at once, sometimes, sometimes some other combination. But it’s all there, lurking. There’ll always be S.T.U.G. moments, as a therapist told us. S.T.U.G. — Sudden Temporary Upsurge of Grief — how’s that for an acronym? It’s just part of the deal now.

Mariann and Mike

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March 29, 2010

There’s this image: We’re out in front of St. Mary’s after the funeral service. It’s sunny out. People are everywhere. Physically and mentally, there’s a claustrophobic element to the setting. We can’t look up or down or straight ahead. Danny’s coffin is in back of the hearse.

The chrome bumper of the hearse is reflecting everything. The chrome bumper is all we can look at. It’s our peek into what’s going on, but it’s just a reflection and so it provides a precious distance from reality; it distorts time, it chops up the sequence of events. Still, the chrome bumper is displaying this moment of our lives in alternating, flashing segments as light and shadow hit the bumper and travel its rounded surface. Of course it’s in slow motion. Of course it’s surreal. Of course we’re wondering, Is this a movie? What are we doing here?

Before that day, there was another. Another moment. It was December 12, 2009. It was 7:14 in the morning. Basketball at Brooks Park was on the menu for the day. Maybe some Christmas shopping, too. And probably another Saturday afternoon/night get-together with the Duffys. They were at our house the night before. So maybe that night we’d head to their house. A pizza from Superosa, or would we splurge and pop for Malnati’s that night? We’d probably let the kids decide . . . . Either way, the kids would play Wii, and we’d sit around the dining room table and just let it be. Another great Saturday night.

And then boom. It was 7:15AM.

Mike! Mike! Oh my god, Mike! He’s blue! He’s blue Mike!!!! He’s not breathing! Mike! Mike! Mike!

Danny was dead.

We rushed Danny’s lifeless body downstairs to our family room. Called 911. Called our next door neighbor, a paramedic. Attempted to resuscitate Danny. Are we doing this right? Did you hear that? Was that a breath? Danny! Danny! Danny! His eyes were closed, and open a little, too. Johnny and Mary Grace were screaming. Is Danny dead?!?! Mom, Dad, what’s wrong?! Is Danny okay!? Help him!!!!!

The fire department arrived. We knew several of the personnel. Let us do our job, they said, with the grimmest of expressions. They hooked up Danny, they pumped Danny’s chest. They breathed into Danny’s lungs. But Danny was gone. Gone. The police officers hung their heads. They’ve got kids at home, too.

Danny was rushed to the hospital. Hospital personnel immediately began working on Danny. We didn’t know what to think. Was there a chance? Maybe? They’re still working on him, right? As the minutes passed, as the line stayed flat, as we looked on as our son lay motionless, as we viewed the distressed looks on the faces of the doctors and the nurses . . . even then, we couldn’t imagine the unimaginable.

Danny was finally pronounced dead. Were these words even said? Or was it just, we’re sorry, so very, very sorry? Everyone left the room. Now it was just the three of us.

His beautiful body was still warm. His fingers, his hair, his lips, his cheeks, his forehead, his everything . . . .

We had the nurses take the tubes and the tape off of Danny. We laid on the gurney, and placed Danny’s body on top of ours. We tucked Danny’s arms into our chest, and we held him as he grew colder and colder and colder. We absorbed Danny. What was he wearing? Did he have a shirt on? Pants? Socks? We just kissed Danny, stroked his hair, rubbed his back. We closed our eyes. We were holding Danny in our arms, and that would be the last time.

Time was limited. Is that possible, at a time like that? We couldn’t stay there with him forever? Danny was gone, and procedures had to be followed.

The Medical Examiners office came. Time to go. We’re taking your son to the morgue. We made frantic phone calls. Can you be there when Danny arrives?! Can you make sure that Danny has a nice warm blanket?!?

Mariann and Mike

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March 28, 2010

There’s a realization that keeps confronting us: Danny is actually gone, and we can’t bring him back. No phone calls, no fox hole prayers, no promises can change this. Nothing is bringing Danny back. This intellectual understanding of our circumstance only confronts us; it hasn’t yet achieved total engulfment of our minds. We can’t imagine that it ever will, and we can only wonder how tight its grip will become. What determines this?

Time flies by. By and by and by. And the pain is more intense than it has ever been. Maybe tomorrow it will lessen? We are pretty much back to interacting with the world, and maybe we appear fairly normal to the world’s eyes . . . but the hours spent alone, the nights, the minutes sitting in the car, staring at a baseball diamond . . . the moments when Tommy looks exactly like Danny, the glimpses of catastrophic loss and turmoil seen in Johnny when he’s thinking and talking about Danny, the debilitating uncertainty of what Mary Grace is feeling. What does this all add up to? Confusion, wishes, realizations, despair. Depletion. Depletion, i.e., consuming devastation, because our son’s body is gone from this world, his smile we can’t see, his beautiful blue, Irish eyes are shut, his little voice, his hearty laugh . . . .

Of course, we hear so much about Danny’s presence and spirit being so strong and so prevalent in so many lives, and of Danny’s story having so great an impact on so many lives. To be certain, there is solace in this knowledge. We understand how this knowledge could certainly offer some sort of comfort to anyone who is not Danny’s parent. And rightly so, because people have to figure out how to allow such a tragedy to exist in their lives. But this knowledge is no consolation to us.

We still ask why. We still think what if. Wherever we go, whenever we meet people, there’s always a huge undercurrent of emotion. Sometimes there’s so much insecurity, so much vulnerability. Sometimes there’s exactly the opposite—the feeling that what in this world could we ever fear, what could possibly make us uncomfortable? What do we do with this? It’s scary, because there’s a lot of life out there ahead of us. And there’s a lot of figuring out to do.

Mariann and Mike

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March 24, 2010

You can see in his smile and in his eyes how truly happy he was to just be doing . . . anything and everything. Every new day was his blank canvas that he colored in with his adventures and games and laughter. Our next door neighbor sent a note today, which included those lines. How so very true. Every day was a blank canvas for Danny.

Danny would usually get up pretty early. He’d come downstairs and sit on the couch in the backroom. He’d like us to put on a TV show for him, and he’d get comfy under a blanket. After breakfast he’d always take his medicine like a champ. We don’t know what the medications tasted like, but they probably didn’t taste good. We talked about this early on . . . about how from Day One of taking seizure-control medication, Danny took it as if he had an understanding within himself that this was not optional or negotiable. No matter the size or number of doses, he just took it, took a drink of water, and moved on with his day. Everyday.

He preferred not to wear a shirt, but when he did it was often a tank top. His brown and yellow number 10 tank was a favorite. Worn with a pair of basketball shorts and his spikes, he was ready to go. Out the door, on the scooter, on the bike, on the big wheel. Up and down the block, up and down the driveways, in the alley, in the yard. Basketball, kickball, baseball, football, soccer. And always with John and Mary Grace.

Danny was always the youngest kid in the games played out front, and he was always one of the best players. He knew the rules just like the older kids, so no one could pull the wool over his eyes due to his place in the pecking order. We would watch him with the other kids. Watch him interact, watch him react, watch him watch what went on around him. We frequently laughed, kind of, when watching him closely from a distance: look at the way he moves, the way his body talks, the way his presence is recognized. Look at the way he interacts with everyone and anyone, the way he transitions between situations. We always said: he knows something.

One thing he knew for certain was that his family loved him. And he returned this love fiercely. For us, it was returned with unbridled affection. His uncanny openness and willingness to offer his love was extraordinary, and sometimes almost puzzling in its evenness. How could so young of a person wallop us so consistently with such an enormous amount of love? How could a little guy like Danny just bowl us over day-in and day-out with a power and a passion so directed at our hearts? Maybe for the simplest of reasons: Danny understood that love drives life . . . .

The waterworks have been running almost uncontrollably the past few days. More so than usual, maybe. It’s always hard to determine. We have so much happening with the Foundation, so many people to talk to, so many roads to travel. The hardest, road, though, is the one that stretches through the night. After a day of work and school and phone calls and homework and laundry and emails and bills and so on and so forth, after all the positive conversations and developments, after so many interactions with so many people who see our vision and believe in our vision and who are actively contributing to its fruition, there’s always one more stop –one last stop– for us. It’s the walk to Danny’s empty bed. It’s smelling his pillow. It’s staring out the window. It’s the unimaginable, sickening thought of life without our Daniel George.

Mariann and Mike

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March 22, 2010

Sue Ontiveros wrote a poignant commentary—”Grieving Parents Work to Save Other Kids”— in Sunday’s (March 21) Chicago Sun Times. Sue delicately struck the balance between communicating the mission of the Danny Did Foundation and highlighting the wonderful life and legacy of Danny himself. And all in only 600 words — now that’s talent. A great big thank-you to Sue!

In her article, Sue mentions there are several organizations already committed to dealing with seizure disorders. There’s one organization in particular, though, that has been a lightning rod in spreading the word of our mission. This organization, The Epilepsy Foundation of Greater Chicago, deserves special recognition.

The Epilepsy Foundation of Greater Chicago, and its president Phil Gattone, was the first orgaization to reach out to us after Danny’s passing. At our initial meeting over a cup of coffee on the city’s Northwest side, Phil expressed his condolences on behalf of himself and the larger epilepsy community. He then rolled up his sleeves and said, “what can I do and how can I help?”

Since that initial meeting, the Danny Did Foundation has walked in lockstep with the Epilepsy Foundation of Greater Chicago. Together, we’ve been all over town meeting with top doctors at various epilepsy centers. And together, we’re getting things done as we measurably raise awareness of Sudden Unexplained Death in Epilepsy (SUDEP), which is a major priority of Phil’s organization.

People always tell us: you have accomplished so much in such a short time, and then ask, How do you do it? We do it with family and friends, with our neighbors and with our community. And of course, we do it with Danny’s spirit and brilliance giving us the strength and showing us the way. The way we do it reminds us of the American Epilepsy Outreach Foundation’s expression, “the butterfly effect.” We’re all fluttering our wings for the same cause, and inevitably we are all going to effect a great deal of change within the world of epilepsy and seizure disorders.

It’s been 100 days now since Danny’s passing. That’s something to reflect on for anyone who has been touched by the story of Danny’s life.

Mariann and Mike

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March 21, 2010

The DDF hit the road over the weekend, out to the Epilepsy Expo hosted by Central Dupage Hospital. Great thanks to the people from CDH for inviting us and providing us with booth space. The room was packed with over 200 people for the keynote presentation of the event. Many important aspects of epilepsy and seizure disorders were discussed, including Adult Epilepsy, Pediatric Epilepsy, Catastrophic Epilepsy Situations, Stress, Hormones, Sleep, Headaches and Epilepsy, and several more.

The one topic noticeably absent from the content of the discussion, though, was a substantive treatment of Sudden Unexplained Death in Epilepsy (SUDEP). The gist of the content regarding SUDEP was that information on SUDEP is not regularly communicated to patients unless patients are not taking their medications or patients are not taking their care-plan seriously. Further, the idea was presented that there is nothing we can do about SUDEP . . . and that we shouldn’t dwell on something we cannot control; the focus should instead center on seizure control.

Our thought, however, is that we do need to dwell on this, and the reason is simple: seizure disorders can take a life.

We don’t feel this way just because Danny died of SUDEP, or just because CeCe Cunningham (three years old) died last week of SUDEP, or just because neither us or CeCe’s parents had ever been informed of SUDEP. Nor do we feel this way just because there are both kids and adults who suffer from seizure disorders who are currently under the care of doctors who do not routinely discuss SUDEP . . . but also because tomorrow and the next day and the day after that another kid is going to be admitted to a hospital with a new onset of seizures, and the parents and loved ones of these future patients might not be informed of the full range of possible outcomes associated with seizure disorders, which includes SUDEP.

SUDEP exists. We should seek no other road than to commit to work together and to start talking about SUDEP. The cause of SUDEP is unknown. Still, several theories exist. Two offered at the expo were that these deaths are usually caused by cardiac arrest or suffocation. And just suspecting that these are causes is all the more reason to inform people of SUDEP.

When thinking of a SUDEP caused by suffocation, here is a possible scenario: The person —let’s say a child— seizes during sleep. The seizure is so severe that the post-ictal state is one that leaves the child physically unable to move himself, i.e., the child is so weak from the effects of the seizure that the child cannot physically move his head from a certain position. So maybe the child is conscious, and maybe not, but either way the child’s airway is blocked. And so the child suffocates because the child’s head is jammed, maybe into a pillow.

We do need to talk about this. We do need to talk about seizure alarm devices. We do need to dwell on something we can’t control, because our collective actions in this area can save a life.

Mariann and Mike

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March 19, 2010

There is a loneliness that has settled in and made itself very comfortable in our lives. It’s inevitable, probably, and it is capacious. Having no boundaries, it pervades every aspect of every moment. It’s funny how we’ve always considered ourselves to be homebodies, yet there now does not seem to exist a location that is not tied in one way or another to Danny.

A reporter from the Sun Times came over the other day. She’s penning a story about the Danny Did Foundation that should be in this Sunday’s edition. We talked for over an hour about what we’ve done, what we’re doing, what we plan to do. She see’s value in sharing our story because of the measurable change that has emerged from our tragic situation. Of course we agree with her. But that’s were it’s starting to get tricky now. We’ve done so much so fast. We’ve accomplished a great deal . . . we’ve established goals and we’ve met them quickly. Just check the What We Do section of the website. Everything is happening at breakneck speed. Just today, the good people at Central DuPage Hospital contacted us and let us know that the Danny Did Foundation is welcome and invited to have exhibit space at CDH’s Epilepsy Expo being held tomorrow. So of course we want to be there, but without brochures, banners, etc. as we had a late notice. Plus, we don’t even have this stuff yet. Nonetheless, the invitation is appreciated, and we are left wondering: in light of our mission, how can we not be there?

And that’s the tricky part: trying to do it all so fast. There is such an immediacy to our mission, such a need to inform people about the full range of possible outcomes associated with seizure disorders. But what can get lost in this mad rush is a certain little guy named Danny Stanton. Maybe that doesn’t seem to be the case or even to be a possibility to others, but to us there is constant distress associated with every event, every email, every phone call, every interview, every meeting . . . because Danny does and Danny will get lost in this effort established in his name. Maybe that’s just the nature of organizations like ours. We’ve considered this, and entertained that this may just be an inevitability. But we just cannot accept this. So how do we keep Danny always and forever at the forefront of our operation? With you, we think: no matter how far the Danny Did Foundation goes, we always need all of you to always remember Danny first, to always consider that Danny is the one who changed minds and changed lives, that Danny is the one who packed so much punch into four-and-a-half years that people around the country and around the globe are willing to give us face-time as we seek to accomplish our goals. Danny Did . . . And We Can Too, right?

. . . . .

The poet Robert Hunter wrote,

Don’t give it up,
you’ve got an empty cup,
only love can fill,
only love can fill.

We’ve had an unimaginable amount of support from family, friends, neighbors, and strangers. People from all walks of life and from locations near and far have offered everything from words to donations to services, all in support of us and the Danny Did Foundation. And that support helps to keep us afloat and reminds us not to give up. Still, we do have an empty cup. We know in our hearts this cup will one day be filled, and that it will be filled with love. But the raw images of December 12, 2009 that are still so accessible, still so haunting, and the remembrances of the days shortly thereafter . . . these are real barriers that allow our cup to fill only very slowly, just a trickle here and a trickle there. A good friend, whom we just met and who along with her husband has been through the exact same situation as us, summed up this sentiment nicely: “I don’t think we have any great wisdom to share, but we’ve stumbled along and survived thus far. You will too.”

Mariann and Mike

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March 17, 2010

Oh Danny boy, the pipes, the pipes are calling
From glen to glen and down the mountain side.
The summer’s gone, and all the roses falling,
‘Tis you, ’tis you must go, and I must bide.

Dear Danny,

The band played “Danny Boy” at Lizzie McNeill’s last Sunday and no one could hold it together. We think that will be the case from here on out. It certainly will be the case for us, and we wouldn’t have it any other way. No amount of tears shed will ever be enough. Not for you, Danny boy.

We’re doing our best, Danny, but it might be getting harder. The snow has melted. The swing set in the yard is back in action and the kickball games are on. There was a hawk in the tree in the yard today. We’d never seen a hawk there before. Not in nearly ten years. Of course we thought of you. It’s the warm weather that’s going to get us, Danny. We can feel it coming. Being outside was one of your greatest joys. Zipping your scooter around the corner; shooting hoops in front; riding your big wheel and your bike up and down the driveways; sitting in the yard and looking at the two big trees towering over the houses a block away. And playing baseball. Oh Danny, the baseball fields will be the hardest of all.

Wilco’s “I Got You (At the End of the Century)” was on the radio today. Man, you would rock that song with every bone in your body. Right there in the kitchen, air guitar playing and head banging. Our smiles could not have been any bigger as we watched you bombard our lives with your palpable spirit. Danny, there are reminders of you everywhere: reminders that Danny Stanton lived his life.

The Danny Did Foundation is your physical force in the world now. We are growing, nurturing, and developing the Foundation just as we would have done with you. The Danny Did Foundation will make the world a better place, just as you would have, Danny. We are leading it with hearts that are broken, yet hearts that will mend. We are called to lead it by a sense of duty, Danny, by a responsibility to parents and families with engaging and affectionate kids just like you. It’s for them Danny, and it’s from you.

No matter what comes of it all, Danny, no one will ever be able to say that we weren’t willing to put in the work necessary to make the Danny Did Foundation a success. Because we are, and we do, and we will. And at the same time that we are devastated every time we see your empty bed, or walk by a pair of your little shoes, or see your baseball mitt sitting there on the shelf — even at these times, Danny, and maybe especially at these times — our minds become fierce and focused and we roll emotion and reason into one big ball of Danny . . . and we know that, in your name, we can accomplish anything.

Happy St. Patrick’s Day, Danny boy.

Mom and Dad

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March 16, 2010

There’s an Epilepsy Expo scheduled this weekend at the Stonegate Conference Centre in Hoffman Estates, IL. The expo is sponsored by the Central Dupage Hospital (CDH). The press release concerning this event and put out by the CDH proclaims “Central DuPage Hospital (CDH) has recognized the need to educate the public about this condition [Epilepsy], and has scheduled a free Epilepsy Expo ….” The Expo looks like it will be an enlightening event that will offer a great deal of information on a variety of topics related to Epilepsy and seizure disorders.

In fact, the CDH’s press release lists the following as topics that will be discussed in ‘break-out sessions’: Adult Epilepsy; Pediatric Epilepsy; Catastrophic Epilepsy Situations; Stress, Hormones, Sleep, Headaches and Epilepsy; The Interface of Epilepsy and Autism; Ketogenic Diet; Epilepsy Surgery; Tour of the Medications for Epilepsy; Novel Therapies and Devices; and Ask the Experts for Pediatrics and Adults.

The press release further states that “This is a can’t miss event for anyone who has epilepsy – or has a loved one with the condition. Dr. Sucholeiki is available for interviews, please contact me directly to coordinate a time. His photo is available upon request.” The “please contact me” person is CDH’s Senior Media Relations Specialist. Now, we didn’t necessarily want Dr. Sucholeiki’s photo, but we did want to know if SUDEP would be discussed at this event. Would it be covered under the Catastrophic Epilepsy Situations topic?

We left several voice messages and sent several emails not only to the contact person for this event but also to the Director of Neurosciences at Central Dupage Hospital. And we’ve received no response. Now, we’re not calling anyone out, or making any accusations. But we are seeing at this big to-do about Epilepsy something that we are seeing with hospitals and other Epilepsy organizations: an unwillingness to talk directly about SUDEP.

Nothing much more to say about this right now other than this: SUDEP exists, and it takes 50,000 people per year. Let’s start talking about it.

Mariann and Mike

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March 12, 2010

We attended a wake today for a three year-old girl whose death was caused by a seizure experienced while sleeping. Her parents told us that their child suffered from Dravet’s Syndrome. The parents further offered that they had never been made aware of Sudden Unexplained Death in Epilepsy. So as we knelt before this beautiful child, whose twin sister was only steps away from us, a fierce anger engulfed us. Are we out of tune, or what? As we looked at this wonderful little girl, as we spoke to her parents, as we knew intimately of their experiences in the coming days and weeks, we had one thought: Enough is enough.

People need to be informed of SUDEP. People who need to be informed of SUDEP are not regularly being informed of SUDEP. We are going to change that. If such an awareness campaign had already been established, who knows where we’d be today? Would Danny still be here with us?

Maybe that’s not one for us to consider. But today, three months to the day since we lost Danny, what else are we supposed to consider?

There is so much to do,

Mariann and Mike

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March 10, 2010

We attended the Epilepsy Foundation of Greater Chicago’s Heroes dinner last night at the Four Seasons. What a thrill to be invited by the Epilepsy Foundation’s Phil Gattone. Moderated by Bill Kurtis, the event honored those who’ve achieved a record of outstanding service to the epilepsy community. One of those awarded was Illinois state Senator Dan Kotowski.

Senator Kotowski offered this statement while speaking at the podium: the number of deaths caused by seizure disorders is 50,000 per year in the United States. We were shocked at this number, so we consulted a member of Citizens United for Research in Epilepsy’s (CURE) board of directors. And yes, we were told, that number is accurate. More people die from epilepsy each year than do from breast cancer, we were further informed. So now we’re thinking, what’s going on? Why are so many people dying from this affliction? Why doesn’t the nation know about this? And how many seizure-related deaths are not categorized as such, i.e., how many deaths are classified as heart attacks or suffocations, etc., when the deceased has a seizure disorder that more likely than not was the primary contributing factor to the death. We need to bring Sudden Unexplained Death in Epilepsy to the forefront of the nation’s mind, and we need to do this now.

Danny’s death certificate states simply as cause of death: seizure disorder.

Mariann and Mike

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March 8, 2010

Today is John’s seventh birthday. We think of Johnny, and we cannot—we cannot—imagine what he is going through. Johnny and Danny were best friends. They were often mistaken for twins, even though they were two years apart. How we wish that we knew what it is that John truly feels. On the outside, he is fairly calm. Occasionally, he has expressed sadness. But deep down, is Johnny devastated? How could he not be? And what can we do other than to inform John that he can express his feelings to us at anytime and in any way. It seems hardly sufficient. Yet we must consider the resilience of kids, we suppose. Trying to figure out the kids on one level and experience this loss on our level is an added layer of confusion and pain. But for now, that’s what we do.

Happy Birthday, Johnny boy.

Mariann and Mike

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March 3, 2010

The back of Danny’s funeral card reads:

You are not forgotten, Danny.

Nor will you ever be.

As long as life and memory last

We will remember thee.

We miss you now.

Our hearts are sore.

As time goes by

We’ll miss you more.

Your loving smile, your gentle face,

No one can fill your vacant place.

Danny’s fifth birthday was yesterday, March 2, 2010. We had family over and invited a few close friends. We had a cake and sang Happy Birthday. We shared stories about Danny and told of strange coincidences that we’ve all experienced since Danny’s passing. We enriched each others’ understanding of Danny’s new place in our lives by telling of dreams we’ve all had about Danny. We talked about how we believe that Danny is here with us.

And of course he is. What else can account for 7000 fans on Facebook? Or the 400 people who showed up at Loyola University over the weekend for a fundraiser for the Danny Did Foundation? And how about the 320 buzz cuts given out in just over three hours by the stylists at ‘Do or Dye hair salon at another DDF fundraiser? The place was so packed that they were cutting hair in the storage closet! An entire high school basketball team showed up. People we haven’t seen in 30 years showed up. People came in from another state just to get a buzz cut.

Danny is impacting lives long past his last breath. His legacy is strong and getting stronger. We are still struggling, having bad days and okay days, but we are as determined as ever to continue to organize and focus our efforts on the Danny Did Foundation. To us, in many ways the DDF is Danny himself. And so we will continue to nurture the DDF, to develop the DDF, and to shape the Danny Did Foundation into something that makes the world a better place. Just like we would have done with Danny.

Danny Did,

Mariann and Mike

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February 25, 2010

Mary Grace had a math test scheduled a few days ago, and before the test she was talking to one of her third grade friends. Mary Grace’s friend said that she was not ready for the test and was worried that she would not pass. So Mary Grace took off her necklace, which has a picture of Danny on it, and put it around her friend’s neck. MG then told her friend, “Don’t worry, Danny will help you.” Well sure and begorrah, don’t you know what the teacher says next: The test is cancelled for that day!!!! MG’s friend was shocked and thrilled, knowing that she now had time to take another crack at studying for the test. She was also amazed at what Danny had done for her. But MG wasn’t.

We look at Mary Grace each day, we talk to her, and we listen to what she says about Danny. And much of it is exactly what we say about Danny. But she is so literal in her belief that Danny is with us, that Danny is here,that Danny is always in our hearts. To MG, this is just a matter of fact now. We, on the other hand, are still searching for what our new relationship with Danny looks like. Maybe we don’t need to look any further than our eight year old daughter.

. . . . .

Our meeting with Northwestern went extremely well. Northwestern, like Children’s Memorial, has suggested that we facilitate a meeting between them and the Emfit people. Thank you Northwestern University Comprehensive Epilepsy Center. We have already facilitated meetings between Emfit and Loyola University Medical Center and between Emfit and Rush University Medical Center. And the news from these meetings is incredible: the docs are saying that they did not know that this type of technology existed!!!! And they are liking what they see. More importantly, Loyola and Rush have both requested that Emfit provide their respective Epilepsy Centers with a number of Emfit Movement Monitors so that Loyola and Rush can test and analyze the product in their hospitals. This is a giant step . . . .

Breathe,

Mariann and Mike

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February 22, 2010

From True Compass by Senator Ted Kennedy.

In 1958 my father wrote a letter to a friend whose son had died. Fourteen years earlier my oldest brother Joe was killed in WWII, and just 10 years earlier my sister Kathleen had been killed in a plane crash in Europe. My father wrote to his grieving friend:

“There are no words to dispel your feelings at this time, and there is no time that will ever dispel them. I cannot share your grief, because no one could share mine. When one of your children goes out of your life, you think of what he might have done with a few more years, and you wonder what you are going to do with the rest of yours. Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something—something perhaps he didn’t have enough time to do. And, perhaps, that is the reason for it all. I hope so.”

As we’ve said before, and as is stated above, there are no words. None. We do not feel better today that we did yesterday. Feel better, that is, in the sense that our feeling of loss has lessened. That feeling has been branded onto our hearts. Still, there is the matter of the world we live in, as well as the matter of finding our new place in it. We have public faces and we have private faces. Often times the two are one. This is a fact of our new lives. But there must be a way, a way to not just survive in our new world but a way to thrive in earnest. We must do this. For ourselves, yes, but just as much for Mary Grace, Johnny, and Tommy. What kind of lives will they have if we are unable to carry on in a healthy manner?

We are learning techniques and strategies. Coping skills. A top contender of ours is this: Don’t think of the life that Danny didn’t live, i.e., don’t dwell on all that Danny won’t do because he is not alive, but instead bask in the life that Danny Did live. Feel every one of his days that he spent with us. This can be as joyful as it is painful. Is this celebrating Danny’s life? Probably. Yet, as it is nearly impossible to even write these words, how are we supposed to live by them? A little at a time . . . and by letting Danny be the eyes of our world.

. . . . .

We met with the owner and president of Emfit Corp. tonight. The owner came all the way from Finland! They had a meeting at Rush University Medical Center with doctors to offer a demonstration of Emfit’s Movement Monitor, a device that alarms when seizure activity occurs. They also showed the docs some software that can attach to the Movement Monitor and measure heart rate and respiration. By all accounts, the demo went well. Rush wants to now test the Movement Monitor in its Epilepsy Center. That’s progress. Also, as a follow-up to our meeting with docs at Loyola University Medical Center, Emfit is meeting tomorrow with those doctors. And we spoke again with Children’s Memorial today — they have given the green light to set up a meeting with Emfit. This is all great news as our goal is to have the experts evaluate the Emfit device in clinical settings to measure its effectiveness. Next up, we are meeting with docs from Northwestern this week.

We rejoice in these moments of accomplishment. And then we so quickly fall to pieces. We’re still asking why. We can still so clearly see Danny, our son, as we found him that mid-December morning. We still relive the moments when we held Danny after he was gone, just held him and held him and held him. We still remember when the Medical Examiner arrived at the hospital to take Danny away. We still remember leaving the hospital and going home. Home without Danny. That’s where we live now: in a home without Danny. And that fact pushes us, it pulls us, it sinks us, it propels us.

Perhaps, though, there is a reason for it all. Perhaps.

Mariann and Mike

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February 18, 2010

“Something is better than nothing.”

That’s what a doctor told us at a meeting at Loyola University Medical Center. And it struck us: What are we doing here? Why have we started this foundation? To prevent deaths caused by seizures, as our mission statement reads? Of course that’s the reason, but how are we going about this? We ARE making inroads into why doctors do not, as a set matter of course, discuss Sudden Unexplained Death in Epilepsy, and we ARE working with doctors as we begin the process of putting together materials for doctors that will communicate to their patients the reality that is SUDEP. We are also meeting individually with people in our own community who are on the same road that we were on with Danny. We, too, have spoken with people from all over the country who see us as an outlet for their stories as well as a source of practical information.

But something is missing. Soon after we lost Danny, we looked at each other and asked, What could we have done? The first thing that came to mind was some sort of device that would have alarmed us to the fact that Danny was having a seizure. So we started searching, and a friend hit on a company called Emfit. We contacted Emfit, we checked out their Movement Monitor device, we showed it to other people, and we see it as a valuable option for the loved ones of those who seize during sleep.

. . . . .

Our focus, as we state it, is twofold: on the one hand we are challenging doctors and other medical professionals to address SUDEP head-on with their patients, and we are working on ways to assist in that process. This is the educational and awareness piece of our mission. On the other side of the coin is the device-driven objective. This is the right-now, tangible goal of informing people that options do exist for monitoring a person who seizes while sleeping. This is what we wish we had for Danny.

And so it is with a renewed sense of focus that we are highlighting the Emfit Movement Monitor on our website. We highlight it, and you determine if it is right for you. Our view is like the doctor’s from Loyola: “Something is better than nothing.”

As we work with Emfit to get their product analyzed in several hospital settings, we will have updates in the coming weeks. For now, visit the Emfit website for further information.

Best,

Mariann and Mike

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February 16, 2010

It’s been nearly ten weeks since Danny’s passing. Seems like 10 seconds. Seems like 10,000 years. The same words hold true today that held true on December 12, 2009: There are no words.

Life’s day-in and day-out moments are like something out of somewhere else. Surely, we often think, these can’t be our experiences. The reality, for the most part, is simply too hard to address, to hard to face head on. Only in the smallest of doses can a loss of this magnitude be addressed, if for no other reason than simply the sake of sanity — and survival.

The Danny Did Foundation has been a tremendous outlet for us. ‘Grief work,’ our counselor calls it. Can’t argue with that.

The goals of the foundation are these: the mainstreaming of medical devices for home-use that act as alarm systems for seizure activity, and the strengthening of communication between medical professionals and the families and loved ones of those afflicted by seizures. Beyond these ideas, we have a thousand more. All in Danny’s name. And because of that, we cannot —even in our most horrifying and sickening moments— imagine that we will not accomplish each and every goal we set forth in Danny’s name.

So what have we done so far? To date, we have partnered strongly with the Epilepsy Foundation of Greater Chicagoland; we have engaged several medical technology companies, one of which has an extremely innovative bed sensor technology product; we have met with doctors at Rush Medical Center, Loyola University Medical Center, and Children’s Memorial Hospital. We have been pleased that most docs have been palpably receptive to our message and ideas, offering that our goals are realistic, tangible, and welcomed. A few have expressed relief that someone is willing to forge ahead toward an improved communication model between the medical community and those afflicted by seizures. We are more than happy to blaze this trail.

Further, we have been told this by a prominent doc: I don’t as a matter of course talk about SUDEP (Sudden Unexplained Death in Epilepsy) until the patient is 11 years old, as the incidences of SUDEP increase greatly from 11 years of age and up, but because of Danny’s story I am going to change this protocol, hospital-wide. We think that that is positive change.

Our meetings with doctors are growing in seriousness. The initial meetings have been just that, but as we get into second and third rounds, we will see if our message is getting across. We feel so far that it is. We feel that a certain segment of neurologists are taking a hard look at new bed sensor technologies that could be sensitive and specific enough to reliably alarm to seizure activity. We are encouraged by the doctors who are willing and wanting to take a closer look at these types of products. We have placed bed sensor products with epilepsy patients, and we have verbal commitments from docs to begin the process of testing such products at their hospitals.

Further, we have a commitment from the Epilepsy Foundation of Greater Chicagoland to begin a campaign to inform and educate those in the epilepsy community of the wide range of outcomes that is associated with seizure disorders. And all this in Danny’s name.

So here we go. Mariann and I, Mary Grace, Johnny, and Tommy. And Danny, too, because we don’t go anywhere or do anything without Danny. Just the way it’s always been, and the way it’ll always be. And you are with us, too, on this unfathomable journey. We can’t do it without you. We can, though, all do it together if we always remember: Danny Did . . . And You Can Too!!!!

More to come,

Mariann and Mike