Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Thursday, April 16, 2020

A Note to Those Who've Recently Experienced the Death of a Child

Right now, there are a lot of people who have recently lost a child. It doesn't matter what their medical condition was, or the nature of their death, what matters is at least grieving well. It is easier said than done, but as long as you're not hurting yourself or others, do what works best for you. Each of us are wired differently, its what makes each human being unique. In the initial stages, at least what I dealt with, it was mostly crying, anger, and it was if the world turned upside down in a cruel, sadistic way. How can you carry on, when you have to bury your own flesh and blood? How do you even explain it, or fully comprehend it, when you are bombarded with a flurry of emotions and thoughts, sleepless nights, and questions upon questions? It takes a lot of time, and don't worry, there aren't any restrictions for the time part. Each of us recovers and accepts tragedy, on a timeline that works for us, and don't let anyone tell you otherwise.

Expect to lose some friends. Its not personal on their part or yours, its just some don't know how to handle a tragedy. Expect to be pissed at people, who normally seem compassionate enough, say things like "aren't you over it, or aren't you ready to just go on as normal?" It sounds callous, but they don't mean it, or if they do knock them out Mike Tyson style. Just kidding mostly on that, but it is shocking what some normal/rational people will say when they learn of what tragedy you face. Mostly its because they just don't grasp the pan, and even though these people may deserve a kick  in the rear end, they truly don't comprehend the absolute iceberg to the Titanic deck every part of you is going through. I'm glad that they and most will never understand, as no parent should have to bury one of their own.

The trail of grief, or how a gentleman named Darrien calls a "journey," is appropriate for such a traumatic event. You will never get over it. Ever. You will only get through it. There will be tears of a river, questions that keep you up for hours, and don't be surprised to be in a thick fog that never ceases to quash the pain. Yet eventually the sun does come out again. It may have a few more clouds than it used to, but life is still worthwhile, and with acceptance you can't find a sense of appreciation again. Thinking of all who are going down this road best not traveled, and hoping even with the tears and the agony, that those clouds will gradually dissipate for you in a new chapter of the adventure.

Wednesday, April 15, 2020

2020: Quarantining and Loss of a Child, Perspective

The novel Coronavirus aka COVID 19 is frightening, and all of us are a bit on edge, no matter what part of the globe we are on. With so many cases, people being sick, and people dying it is not something to toy around with. True it is not as lethal as Ebola Zaire, or in its other forms. Its not the 1918 "Spanish Influenza," that killed roughly 50 million when the worlds population isn't nearly what it is today. Yet a lot of people are feeling alone, isolated, and a mixture of feelings as the number of cases rise. My ten year old have discussed it tonight, as I'm sure parents are everywhere.  He is slightly anxious, but his main irritation is the interruption of normal life. Years ago I lost my oldest his, his brother Tommy to an Angelman Syndrome related seizure. I wish with everything I have that this never happened, just like I do for no parent to ever lose one of their children, but this has provided me a bit more insight into what is really important. Yes there have been a lot of tears over the years. Anguish really, but there's also been some eye opening to the reality of situations both easy and difficult.

First off, we aren't being bombed. The German attacks on London were relentless. General Curtis LeMay's "fire bombings" of Germany and Japan weren't exactly lovely. Thousands of malnourished Africans, and people in other places die daily from diarrhea. We aren't sitting next to Chernobyl, or a horrific Indonesian Tsunami that wiped out 200,000 human beings in a startling reminder of our fragility. It could always be worse, and even though these times are a challenge, just remember a era of your life will now definitely be in a history book. Obviously, we all home for a vaccine, and hope this one will come down the pike fast. Numerous pharmaceutical research companies are going full throttle, and in the next couple of years, let's see that happen. I've brought up examples through history for my son tonight, and I wonder what so many of you are doing, to show leadership and also allaying any fears. It is admittedly bizarre to see people wearing masks everywhere, or empty highways that usually are crammed. My hope is that once we clear this apex, we don't lose our ability to communicate and include other human beings in all kinds of activities. There are more unknowns than knowns at this point, but hope we all can reassure our children of the need to do our best in these "alternative universe/twilight zone type of moments.

If you've lost a child, you're not alone, and if you haven't, please hug your kiddos even more. While nothing is guaranteed, and today is to be enjoyed to the fullest, be sure to check on your neighbors. A lot of people that are working the front lines are to be thanked. It could be far worse, and while it is quite an odd time, the key is to be grateful for what we have. Sure I wish I could be kicking back watching a baseball game, enjoying the sounds and smells of the game that's so much fun. Yes I'll admit it would be super to catch a movie in a theater, but these are first world problems that just require a change and will eventually be back. Wherever you are, much love to you and yours, and let's keep checking on those who truly do need our help and support.

Thursday, April 9, 2020

To Parents Who've Lost a Child, That Painful Empty Chair

Melancholy. Anger. Confusion. Doubt. Guilt. Frustration. Tears that come like a overflowing river, and your world is completely turned upside down, into some alternative universe that can best be described as nightmare of the worst magnitude. The empty chair at the table, or perhaps in the living room, can bring back this flurry of emotions, with the speed of a freight train that knows no sympathy or breaks whatsoever. So many parents recently are wearing these shoes best not worn, and my heart goes out to each and every one of you. It is patently unfair, to outlive your own flesh and blood, the little boy or girl that you loved and still do. The hours last for days, the minutes for hours, the seconds seem to just disappear in a cacophony of vicious cycles. There's no rhyme or reason for this. In fact, there are no patterns of familiarity or life experiences, to prepare for such a tragedy, that people go through more often than any of us want to acknowledge. It happens every day, and in this time of coronavirus, people are even more edge than ever.

In 2009 our family lost Tommy, to an Angelman Syndrome related seizure. Its been many years one would think, and while quite often it does feel like another lifetime, sometimes it feels as if it was yesterday. To find your five year old unresponsive, to do CPR on your child, is a cruel twist of fate that I wouldn't wish upon an enemy if I had one. That night in 2009 is mostly me screaming out of rage, throwing away the sweatshirt of his blood that I had on me while performing CPR, and flipping out in ways that I couldn't have ever imagined. Our brains are our best friends and our worst enemies, but to those who've recently joined this sad club that no one should, I can promise you that life will never be the same. That sounds negative doesn't it? Yet its the reality, and while there will be tears and the stages of grief, you will never get over this pain. Ever. You will get through it. That may sound like a misnomer, but its actually the reality. Sure, I still have sad moments, especially on the birthdate of him, and the date that he died. Sometimes I see a kid that looks like him, and I can't help but notice the tears out of my eyes falling out.

Yet I am grateful. A loving family, great friends, and also grief therapy have been profoundly beneficial in at least becoming a new person. You shall with time too, and while years of pain may sound and are the worst sentence a parent can go through without a cell block, you can get through this tragedy of unspeakable volumes. Some of it does have to come from within. All of us bend. That's a fact. Yet breaking, that's not in our DNA. If you have recently lost a child, there will be a roller coaster ride of horrors, and I so wish I could give you the biggest of hugs and promise you everything will be "a ok." That would be a lie, as "ok" is going to change, with time and healing. Grieving well is very important, and as long as you find a way to do this, without harming yourself or others its totally fine. I have yelled at trees, bashed baseballs, and blown up ranges with anger and aggression that have torn paper targets hundreds of yards away apart with my furious temper. At least in the first few years. Also I lost my cool with a lot of people, and sadly have lost some friends in the process. Yet I am an extremely happy man, living a life of satisfaction, and more often than not have a smile on my face.

The reason is simple, and that's not because I'm empirically strong in any form at all. Just like you, I'm your relative by 3%. A well intentioned human being. There have been a lot of lessons, and right now you are going through a world of hurting. By all means, you've been dealt the worst deck of cards ever. While that is a cliché, there's one thing to remember even as you salvage yourself from the pieces of losing a child. There's no time period, or right answer, but when you can please think of this. It might sound warped, but after a lot of reflection, I feel with conviction that it is the right answer. While breathing in even with tears, and after weeks, months, and years of the grieving process, I want you to ask yourself one question. Would you want your child to non stop bash yourself day after day, over something that can't be changed? If the shoes were flipped, and you died, would you want your child to be in constant anguish for eternity? Its up to you to find that "no," but after years of pain I came to this conclusion. In the initial weeks, months, and years expect a lot of doubts and tears on a ride that will rip everything you know to blown up bits that don't make any sense. Its part of the grieving process to be angry, sad, confused, and every possible emotion possible. Yet I hope you remember not to lose hope, because each day of our lives good or bad, is a moment of where we exist. Its up to each and  everyone of us on this path, to decide whether to use this pain to help ourselves and others, or to abdicate our responsibilities to ourselves and let others run the show. This world is not fair, not but a mile, but I promise you can live a life of fulfillment. Take care of yourself, because quite often the initial reaction is to beat yourself up. While that's normal, eventually its important to find that purpose to propel you forward with a set of new eyes and compassion for all.

Saturday, March 7, 2020

Train Keeps Rolling

Life has a funny way of interfering with anything, whether this blog or just about anything. The hands of time move on so fast, especially with each year of age on the calendar, and its a joy, to have the opportunity to return to writing. There may be some rust, that WD40 won't be able to take care of, yet the desire is there. It has been over 10 years since the loss of Tommy Ross. Even with Angelman Syndrome, he was literally taken far too soon at age five. Yet I'm not alone, as other loving parents are in a similar predicament, and all of us on this planet suffer from loss. Each person you meet has and will, so there's no need to look at the mirror. The train up above represents the importance of trekking along, and this doesn't mean forgetting, but rather carrying on the journey no matter the bumps, bruises, or other things associated with day to day life.

When you look up at the stars, these blinking reminders are proof that you are part of something. All of us originate from stardust, and we are at a minimum related 3% to each other. This blog will continue to return to stories of loss, but also those of resolve, resilience, and love in the face of tears that each of us has to endure. There will be mentions of Angelman Syndrome, other medical conditions, seizures, yet it is with anticipation that it will cover far more than that. Also, there will be a local blog of musings around the DC area started, where everything from odd history to people in the community will be featured. Thank you all to who still read this blog, and please feel free to email any ideas, as your support means more than words will ever be able to express.

Wednesday, October 28, 2015

Steven Rouse, Your Love Never Ends

"Tell my Mom I love her." The final words of Steven Rouse, who was only 22 years old and from Greenville, North Carolina. A young man in the prime of his life murdered, stabbed multiple times, with hatred and aggression that have been seen since Biblical times. As a father who's lost a child, I cannot even begin to comprehend the anguish that his mother Portia Rouse is going through right now. To wait several days for her son's body to be cleaned up of multiple stab wounds, all because he was bullied for being different. The autism spectrum is wide, but what is not is love, and reading about Steven has intrigued me although I wish he had got to continue his dream of being an orthopedic surgeon. This young man had Asperger's, which is on the spectrum, and despite that had a genius IQ. Yes, he was different from most with some quirks, but they were lovable. A young man who loved all, and despite maybe not being as verbal or outgoing as others, his last words speak volumes. He loved to give hugs, and was living quite well in his new apartment.

Two evil men bullied him for a long time, and on October 19th stabbed him to death multiple times. On the gofundme page to help his mother Portia with final expenses, she stated "Who expects to bury their own 22 year old son who's been murdered?" I watched her at the funeral service on video, and cried many tears. This poor woman spoke with love, resolve, and with a determination to make sure something like this never happens again. She spoke of forgiveness, and plans on continuing Steven's legacy of love by supporting awareness with regards to autism and bullying. I commend her for her efforts, and if you can help in any amount, please go to

Next week will be Tommy's six anniversary of his passing. There will be time spent by his grave, and tears will certainly be shed, as he'd be eleven years old right now. Its a hollow pain that cannot be put in words, because the emptiness and heartbreak are deep, soul thrashing in nature and no parent should ever have to go through this. Yet Portia Rouse is. And in her case, there is far more pain, of which is just profound beyond any measure. Watch her speak and you will cry, and that's okay, because Steven loved to give hugs, and his life was one cut short by the evil of bullying. Yet you can help by either spreading this message of love, or making a donation to her gofundme page that was set up by her friend Robin Suggs. God bless her, Portia, and Steven who's certainly in Heaven, and pray for her as she needs all of our support during a time no mother should ever have to endure. "Tell my mom I love her," despite being stabbed multiple times, shows the love of a young man who should be fulfilling his dreams.

Tuesday, May 19, 2015

Vienna ES 5K: Team Tommy First Run 2015

It was a lot of fun despite the somewhat rainy weather, to engage in the first official Team Tommy 5K run about two weeks ago. There were some nerves prior to kickoff, because as most runners know, being with a group rather than alone can change a lot of elements. The worst one is the "pushing yourself too fast," and while tempting it didn't happen, as I completed the 5K a bit slow. 29 minutes and some change, but you know what, it simply doesn't matter. Almost two years ago I could run a 7:30 minute mile over 13, or under a 6 minute mile if bet enough cash. A tear of the LCL led to surgery, and to be frank, I'm just flat out happy not to walk with a limp anymore. That got pretty old, looking like the AARP card and senior discount coffee would be served prematurely, along with the chest high plaids approaching at ludicrous speed.

The run was the first official one I wore the Team Tommy shirt. No one asked any questions about it, but that's okay, and the goal was mere survival. The fun part was watching Tommy's younger brother run his first mile event, and he loves the ribbon he got for completing it. He ran with his Pop Pop, both having a blast, along with a grin at the end of the race. When the 5k started, I got in the middle of the pack. The whistle blew and the group of about 500 or so took off. I felt good at the beginning, but the hills did seem to be larger than I remembered. While the red shoes felt fine, the legs did feel sore, and my breathing was more labored than expected.

You'd never know how much it meant to see that finish line. There were times I thought "I can't do this." Yet somehow I maintained a clunky pace, and when that line was crossed, I breathed like a labrador sweating under the sun. The past couple of weeks there have been some small runs, but mostly weight work. In the coming months, two to three more official runs will be completed, and hopefully more awareness. Thank you to all who've been supportive, and here's to you all getting out there and being active. #teamtommy

Friday, March 6, 2015

Team Tommy: A Run to Cure Angelman Syndrome

One day my tall frame is going, to be sitting on a steel slab in a mortuary office. People in white smocks will walk by, as they do, because with life comes death at the end. Yet until my last breath, I must do what I can, as a simple person to deliver financial assistance to Angelman Syndrome support groups. Its my hope to live until 100, and while that's up to the stars, Team Tommy was conceived to help that process. The basic premise was built upon several doctor's reporting either "you'll never run again, or you are going to need a knee replacement."

It would be nice, to have cooperation from the weather. This winter has been among the D.C. area's worst, but I have several one mile runs under my belt. While the goal is 10 plus mile events, there are a lot of events in life that cannot be planned. My own five year old son being found unresponsive was not, and quite often I think about how he'd be twice that age now. I have no doubt he'd be walking, and loving the water and his family and friends whom miss him so much. There's no rhyme or reason to why he died, from a seizure in 2009, but there has been a slew of emotions. The five stages of grief are so true, and my heart breaks open once again, when I have heard of other angels losing their lives far too early.

There may not be much I can do. Who knows if its ultimately worth it, as there are no guarantees. Yet the alternative of just resting on one's laurels, is proof that by sitting around collecting dust, you don't stand a chance. One out of a hundred is better than zero, and with the work of groups like the Angelman Syndrome Foundation or Foundation for Angelman Syndrome Therapeutics, many parents, friends, researchers, and doctors are fighting this genetic condition. Its up to you how to battle this, because lots of good people are, but I choose to by running. Standing tall, firm, and going forward.

I would like to thank the kind people, who have donated to Team Tommy on the gofundme page at It doesn't matter the amount, but by sharing even this page, its 84% close to its goal of helping both FAST and the ASF. 40% goes to each group, with another 20% to the Maryland Parks and Recreation Association Tommy Ross Fund. That helps disadvantaged youths with disabilities, to enjoy activities such as therapeutic horse riding or swimming events. If you could please share this or the "go fund me" page, it would be greatly appreciated.

There will be a sunset in my life, just like everyone has to go through. All of us are born, while all of us die, there's no denying that. Yet its up to each and everyone of us, what do we want to do with our time on the stage? In my opinion its better to "do than don't", and while I wish that others and my family didn't have to go through the loss of a child, I do love kids and adult with Angelman Syndrome. They truly are incredible, their cherubic smiles, laughter, and eyes that just reveal a soul far better than any of us carry in our hearts. Please join me in this effort, and by all means get out there and start running.