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.

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.

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.

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.

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 https://www.gofundme.com/696w8gps.

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.

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

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 http://www.gofundme.com/iy51xo. 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.

Why You Should Support Team Tommy

"All of us are born, and all of us die." There are no guarantees what day your last breath on earth will occur, but there's no getting out of it. Quite often in the west, we consider death taboo, yet when you consider it, Steve Jobs said it best. His quote of "I am grateful for death, it motivates me to finish what my dreams are," is a reminder that each and every one of us is mortal. No matter how much money or power you have, along with hopes and dreams, they will one day end.

The autism spectrum is confusing, as so many families across the world, want a definitive scientific answer rather than a clinical one. Angelman Syndrome is on the autism spectrum, and it is the only one, that can be literally diagnosed via a blood test. Its called Fish,and it can decipher the partial deletion of chromosome 15. This could eventually lead to other autism related diagnoses via a non human method, which is what a lot of parents seek at this time. Right now the Angelman Syndrome Foundation((ASF) and Foundation for Angelman Syndrome Therapeutics(FAST) are conducting more research into this, along with ultimately discovering a cure for this confounding disorder.

Angelman Syndrome is named after Dr. Harry Angelman, who noticed some similarities of cases in the 1960's. If you don't believe in medical love, listen to the man's voice on recordings, and you will hear it. He was passionate about "angels" in his life, and although he is gone, his legacy continues on with the research of doctors such as Weber and Philpot. That's just the tip of the iceberg, as more scientists and medical professionals are studying this quandry, and have already given mice Angelman Syndrome and cured it.

FAST and the ASF are both highly rated, and led by exemplary people, along with thousands of parents who volunteer a lot of time and effort to these causes. Every bit helps, and if you donate to them, or through this page, your money is going to a great cause that will help. Its too late for a cure for my boy, and other angels, but its not too late for others. No more angels deserve to die young, nor do their families need to go through a suffering, of which is so brutal that words can't describe it.

I hope with all of my heart you will help spread the word, and if possible donate to these groups, or help Team Tommy at http://www.gofundme.com/iy51xo. There's no giving up, because while each of us has a clock of activity, its best to use each second and minute to the best of its ability. Let's support the angels, their families, and people across the world whom want the ability for a blood test. It might sound trivial to those who are not directly affected, but I can tell you from direct experience as can many, that knowing what you are dealing with is a relief all by itself. It might not be the answer you are looking for, but once you understand what you are up against, it makes things a bit easier and allows you to help a little girl or boy a lot more effectively.

Team Tommy: Go Fund Me, Support Angelman Research Right Here

http://www.gofundme.com/iy51xo

The Go Fund Me Page for "Team Tommy" is up. You can find the direct hyperlink above, and its for a good cause. While the running shoes are on the way, as is the shirt, its never too early to start this effort. Most know Tommy Ross passed away five years ago, and while its not been easy, I'm just one traveler of many who's been down this painful road. A lot of kids with Angelman Syndrome or AS, have passed away due to accidents, seizures, or other related events due to this debilitating condition. Enough is enough, as its time for a cure. Its also a way to enjoy running, meet others, and learn their stories too. Each and everyone of us has a story, with chapters that are good and bad.

Tommy is missed. Other children are too, and each time when I run with the "Team Tommy" shirt whether practicing or at an event, I will be praying for all families that have lost a child. At the same time, I'll be praying for a cure for this condition, that was discovered by Dr. Harry Angelman and of course named after him. Both the Angelman Syndrome Foundation(ASF) and Foundation for Angelman Syndrome Therapeutics(FAST), are excellent organizations that are doing everything possible to move Heaven and Earth for a cure. They have also been helpful to families with someone who has AS, along with caregivers, teachers, friends, and a whole bunch of connections to other groups and research on the autism spectrum.

80% of money raised will go to FAST and the ASF, because these two groups are the leading edge of awareness and research. You can rest assured knowing your donations will go to responsible groups that believe in stewardship, and making sure each cent is delivered with full potential. Far too many charities out there have questionable alliances/motives, or administrative costs that make you wonder. Yet as I type this, I can sleep at night literally knowing that these two organizations exemplify the best of the best, and have the greatest chance of discovering a cure for AS.

20% is going to the Tommy Ross Memorial Fund. Yes, some money should go to those whom are less fortunate, to have an opportunity to engage in therapeutic or recreational programs. This has been set up by the truly lovely folks at the Maryland Parks and Recreation Association, whom my father used to be employed by. Their members have been extraordinarily kind, and knowing a few youngsters each year will get an opportunity otherwise unfulfilled, is beautiful beyond words. I thank each and everyone of you that share the Team Tommy GoFundMe Link, and appreciate your support with the upcoming races and outreach efforts. #Teamtommy

http://www.gofundme.com/iy51xo

Team Tommy: A Return to Running, Let's Help Angelman Syndrome Charities and a Good Cause

"You won't be able to run anymore." "You need a knee replaced, your running career is over." These were two comments from orthopedic surgeons, and even the one that I liked who repaired my LCL, believed that perhaps it was "time to hang up the cleats." It was such a joy running, having been out running half marathons, and meeting so many amazing people. There were easy courses where I could simply zone out to the music from the ipod, while others challenged every fiber of my being.

When I first in 2013 felt that pop in the fall, I thought "no big deal." Yet it was knee surgery #3, and I was told by the surgeon "Your knee still looks like s*it." There was some physical therapy, some work on various muscles, but I failed miserably. Not even able to run a half mile, nor allowed to enjoy a rainy night, that so many take for granted. 2014 was a terrible year, as I almost got literally hooked on vicodin's and other pain killers, and had to face a decision. Several doctors told me, "Its time to replace your knee, you might be able to run again, kind of." That wasn't very encouraging, but after a lot of research, I'd like to say a huge profound thanks to my former surgeon Dr. Samuel Hawken who's bedside manner is unique, and Dr. Fullbright and the staff at the Anderson Clinic. There's a reason Mount Vernon Hospital is known for its knee procedures. Those guys are great, and I'm happy to recommend them, as they were able to wean me off of pain killers, discover a prescription shot that works, and I have been ordered to run.

I'm not sure how far I'll run again, because at this point, per the doctor's advice I'm at a 10 mile limit. That's okay, as the time limits are no concern anymore. There won't be a sub 6:00 minute mile, or 7:30 mile times over a half marathon. Yet what there will be is resolve, a smile, and a new effort to raise money for Angelman Syndrome awareness and research. As most know this young boy was my son Tommy, who passed away in 2009 at age five, due to a seizure related to this condition. He is missed, as are many "angels" who've in the opinion of many, have gone on far too soon.

Tommy and the other angels who have passed on, are in the hearts of many. Countless families across the USA and around the world, understand what that empty space means, and how crushing it is to be without that smiling and laughing angel that could light up a room. With that in mind, while I don't think the inevitable "Go Fund Me" Page for Team Tommy, will make a lot of money the chances for outreach are unlimited. The proceeds raised will be in this percentage: 40% to FAST(Foundation for Angelman Syndrome Therapeutics), 40% to the ASF (Angelman Syndrome Foundation), and 20% to the Maryland Recreation Park Association Tommy Ross Fund. This was set up by that commission in honor of my father's retirement, and helps families who have children with special needs, have a chance to enjoy recreational or therapeutic events that wouldn't be otherwise possible. Everyone knows the ASF and FAST are great, so the shirt has been ordered. Its bright red with the letters "Team Tommy," and will be worn with matching red Nike Fusion shoes. That was his favorite color, and it will be an honor to run in his memory, along with other angels who've been inspiring.

This is just the first post, and much work is to be done, yet it would be great if people could get this "shebang" started. That's right, I'm going to need your help, because let's see if we can come together, and raise money for two organizations that are directly confronting the horrors of Angelman Syndrome, along with a scholarship that provides families with relief. Let's do this. More to come, but the emergence of #TeamTommy is going to arrive 1/01/2015, and no matter what the temperature, let's turn up the heat :)

A Family Needs Your Help, Let's Do This!

All of us are at a minimum related to each other 3%, and one of our family members is suffering. The word "suffering" is used quite a lot, but to grasp the significance of what they are going through, there's just no way at all. If you have heard the John Mellencamp song "Small Town," you know the type of place in Maine where these wonderful folks live, and some of their neighbors have stepped up. Yet in the untimely death of a father, many don't know what to say, or even that help is needed. People have their reasons for not wanting to be there for this family, and to a degree its fine, because many of us are hurting economically, or simply don't know what to say.

When I heard the news of the "Mac's", my heart dropped, because I understand what its like to lose a child. The gut wrenching pain they endured several years ago, its something close and very clear, because its a road that no one should ever have to go down. Yet they have done so with both courage and grace. Burying your little girl, granddaugter is something you shouldn't have to do, but it is the reality of each and everyday, with answers being far from forthcoming. The winds may kick up, the Sun might rise from the east and set to the west, but everything previously known is thrown out the window.

Now this family has lost the father, the head of their household, and they need our help desperately. I will not judge him, and nor should anyone, because we all face our demons. Some of us can move on through life's hoops, while others fall by the wayside. His wife thankfully has her mom and other family around her, but they have been through a physical, mental, and emotional toll already enough. Then this added on top, along with all kinds of debts now pushed in their direction, makes them down the river without a paddle. There has never been a more clear and present issue that can be resolved, and the family is grateful for all of the support it has received, to keep the electricity on, or people from shutting their house down one month ahead of a baby's birth.

It doesn't matter if you donate $1. Nor $5, or even $6.99. What does is that each donation to http://www.gofundme.com/9iajn0?fb_action_ids=10203878653431694&fb_action_types=og.likes&fb_ref=fb_l_10&fb_source=feed_opengraph&action_object_map=%7B%2210203878653431694%22%3A668126846589098%7D&action_type_map=%7B%2210203878653431694%22%3A%22og.likes%22%7D&action_ref_map=%7B%2210203878653431694%22%3A%22fb_l_10%22%7D will go directly towards helping this family. They need our help, and they need it now. All of us want to see a healthy baby born, along with a seven year old girl, getting the professional help and guidance needed to carry on without her father. Seven years old. That's right, just a little one, who needs to not only feel our love but see the action produced by that. She's just in elementary school, and has her whole life ahead of her. She already has lost her sister, and now her father. There's no way to say it other than how horrific this is. As adults, we are better equipped for traumas, but she is at a age where we need to step up. Thank you for reading this, and if you can help this family, or spread this message, it would be appreciated by them and so many others.

Let's Help a Family in Maine, They Need our Help Now

Quite often many of us read a book, that has us shaking our head, wondering how a character or family or could endure so much trauma. There are movies out there that leave us crying, but these are mere works of fiction, and come no where close to the heartbreak of a real family that is suffering beyond comprehension right now. As we all know Angelman Syndrome has led to pain in other directions, because while you have a child that laughs, smiles, and is lovely, there's so many negative afflictions tied in with it. That would include the seizures, that took the life of sweet Kelce about two years ago. A family had to make the gut wrenching decision at the hospital, and even despite that, they have carried on.

Yet I can tell you from personal experience, that while wounds do heal, they truly never do close. I was stunned by hearing that Kelce's father took his life a few weeks ago. Yet at the same time the death of a child can be too much to bear for many, along with other stresses in life, and I'm not going to sit back and judge. Instead I'm going to ask you to be there for the Mac's, and be one of them for awhile, by supporting them as they try to pick up their pieces. These are real people. There is a mom who's about to deliver a baby left alone now, and the financial pressures such as keeping the lights are on, let's take care of her and make sure this little boy comes through with flying colors.

Even more of a concern is a young 7 year old girl, who in this small town, is being shunned because still people don't show support in the event of a suicide. This innocent precious 2nd grader is getting help, but needs much more of it, including professional services. She is blessed to have loving grandparents, aunts, and other family members, but this seven year old must be in not only our thoughts, but it is imperative that we step it up financially to keep the lights on for her, food in her pantry, along with help getting those specialists.

http://www.gofundme.com/9iajn0. That's right, I'm asking you to donate to this cause. As many of you know I rarely am this direct, but I am this time, because right now this family is not only going through more heartache than anyone I've ever heard of or known, they have literally been torn apart by Angelman Syndrome, seizures, and the death of the father. Each of us faces our demons daily, but this man's little girl, along with his wife, and soon to be born son should not have to suffer regardless. Yet they are, and that is why a few times in life, we have to be helpful in a financial manner.

Please spread this message, because God knows of their pain, but it is up to each and one of His creatures to help the Mac's. The small town is doing basically next to nothing to help them, so let's be their proverbial village, and show them that we care. Church and charities always deserve our support, because they do amazing things, yet let us turn the corner this time and do that for this family that's going through worse than what a Patrick Conroy novel can conjure up.Let's lift them up, and provide them at least a rope, because they are resilient. They are our family as they are related to us by a minimum of 3%, so if you can share this link, and if you can donate any amount, it would be beyond going to a wonderful cause. Remember the Maine, and never ever give up! http://www.gofundme.com/9iajn0

Much Love to Three Families: A Heavy Heart is the Best Way to Describe It

Years ago my grandmother died, and I still remember to this day, how she looked in her coffin. She was a warm, lovely lady in every regard, and even though I was a young boy, I still miss her to this day. Each and everyone of us, has only a certain amount of time on this planet, before our hourglass winds down, and there's simply no sand left. Today, that's the case for three grieving families,  who are enduring the most challenging of all pains that a human being can. Three young ladies with Rett Syndrome passed away yesterday. While I've only had the chance to meet two women with this condition, along with their awesome mothers, the words of my uncle at my grandmother's funeral rings true this morning. That is "with a heavy heart." 

Those families are going through such agony, pain, and will have to go through a process that's gut wrenching. Our hearts should be with them, and if you can say a prayer, it is without a doubt something that can be felt. Three was a lucky number in Biblical terms, but this version certainly is not, as there are grieving families, friends, and a vast network of folks who have been a part of these ladies lives. Now there are more questions than answers, along with that heavy heart, and the soul crushing pain that will have to be directly experienced. Life's permanence is shockingly brought to such a conclusion, but at the same time, those will have to carry forward under totally new circumstances. Its not something one would wish on anyone, even a worst enemy if they had one. In Mitch Albom's "Have a Little Faith," he delivered the eulogy for his Rabbi. During one of their interviews preceding his death, the Rabbi discussed his children's death," and how he was angry at God." Mitch asked him, "then why are you a Rabbi?" To this he responded, "because my anger at God proved His existence."

There are going to be a swirl of emotions for the families, those who know them, along with parents of children with Rett Syndrome. Anger is one of them already, but in the coming days and there's no time limits on that, my hope is that there will be some sort of peace. Ultimately these families feel pain, and our hearts should be there for their broken ones. Love them, support them, and by all means pray for them out of an abundance of compassion. You just never know, as each and everyday is valuable, and these three families need to see the support of so many around them. They will never get over this, but through the grace of God, let's help them get through.

Mom and Dads Who've Lost a Little One or Adult: You Aren't Alone

After my son passed away, I often wondered why some people kept their distance. Most of the time I really didn't care, but I can tell you, that I have discovered who my true friends are. Plus I've made so many along the way, that any losses are completely wiped away clean, along with a renewed sense of purpose and faith. I was blind for the first 34 years of my life, but now my vision while far from perfect, has improved considerably. You are going to grieve in different ways, and as long as you are not a threat to yourselves or others, don't give a damn what you have to do. It is a parents worst nightmare, and while perhaps some of my anger wasn't healthy, it was part of the process. While the Scottish temper can still arise, its much less likely to now, and quite often I literally turn the other cheek. Its not a sign of weakness, but rather gaining an appreciation for life like never before, along with realizing that each and everyone of us can be difficult at times.

Such battles of the past no longer happen. Its good being "the dude", and for the most part just chilling. This doesn't mean that I won't knock you down in a boxing ring or other athletic event, but its a change of perspective, that wouldn't have happened. Losing a child isn't something you should want or obviously have happen to you, but I can promise you, that if you move forward, not over but through, you will see with new lenses. Much of what you previously thought of as hard, becomes a laughable matter, and what's the worst somebody can do to you, take away your birthday? Its better to be forgiving, and just laugh, along with smiling more. Taking the laid back approach, and only ratcheting up when necessary isn't just healthy for you, but also this positive spirit can spread and touch others.

Recently a lady whom I've known for years, revealed to me that she lost her child many years ago. I've always found her to be one of the most compassionate, and warm individuals that I've had the grace of getting to know. All of her employees love her, as she is a supervisor of a very important operation each and everyday. Their work isn't easy, but one of her folks said it best. That was "I can't keep up with her, and her positive enthusiasm does make it bearable." I don't know what she was like prior to her child's passing, but I have a feeling, that she's changed due to this as well. There are millions of us. No, not across the world, although that is the case, but even in the United States, or any other nation for that matter. We are all brothers and sisters, and in addition to supporting each other, let's keep the positive vibe moving in a forward trajectory.

You Can't Take My Birthday Away

There are millions of us who are in the "club" of losing a child. No its not one that we ever expected, wanted, or thought "that could be me." Yet it is the reality, and while the natural order is for us to pass away before they do, those of us who've been down that road face a host of emotions. Anger, guilt, utter despair, frustration, and a feeling of abandonment in many regards. We have gone through our lives trying to be decent, when the parent's worst nightmare hits, and you lose the faith that you previously had. Yet did you really have that faith? I'm not sure I did, because mine has grown at an extraordinary level since my boys passing. The skeptic in you might be thinking "Well, you are just making up for that pain with something to cling on." You'd be right to consider that, as that was how I used to use my minimal brain powers, and I was wrong.

I won't tell you who to call God, but I believe in Jesus, and yet at the same time I don't hold a grudge against you if you worship vacuum cleaners. Its up for you to choose which road to pick, and I have picked following the guy with nails in his hands and toes. "The crosses we bear" are so true, yet when compared to what He went through, I'm thankful to learn from Him the meaning of "Turning the Other Cheek." It doesn't contrary to what I thought, and so many others believe, make you a weak human being. Rather it makes you stronger, and able to cope better with the pain you've been through, along with challenges following after such a tragic event. A church doesn't have to be at a building either, some of the most amazing spiritual experiences I've had, have been in the strangest of places.

Parking lots. With angry, rabidly foaming at the mouth parents. On the road. God doesn't pick out a building to be His temple, rather it surrounds all of us, regardless of who we are or where we are in life. This past week an immediate prayer was answered, and we'll see what the next chapter brings. There's only so much I can do, I trust the Lord as my rock, and am a better person because of it. My journey in faith has a long ways to go, but I feel much better after "letting go," and just taking the bricks being thrown one by one. Whether its someone in authority above my head red in the face yelling, what's the worst they can do, "take away my birthday?" :)

I don't know know the reasons for my son's passing, or why so many others are down this highway. I'm not sure about a lot in life, even though before, I thought I had it pretty much figured out. Its a mystery, and even though I cannot prove it, I thank God for having a sense of humor. That is what has helped me in many ways, and I laugh at things, that I previously would not have found funny, and have found new value in each and every day that I'm lucky enough to wake up. There's only so much we can control, and for the most part, that's our actions. Turn the other cheek, worship the good Lord, and trust in Him. At the same time, have fun, discover what your passions are, and just go with the ride.

A Cure for Angelman Syndrome: To the Finish Line

Its too late for many parents, as there are parents, grandparents, uncles, aunts, siblings, friends, and so many extra family that you didn't know, mourning the loss of a child with Angelman Syndrome somewhere. When Tommy was born his diagnosis was a slap in the face, as it was a wound, that so many know too well. It takes a lot to digest the news, that your child will probably never speak a word, and that in just a few years you'll probably be administering seizure meds rectally to them. Your dreams of that precious little baby becoming Prom King or Queen, along with maybe just being a happy kid on the bench of the baseball team are over. Its up to each and everyone of us to accept such news, which I declare to be like getting hit in the cranium with a fly swatter weighing a thousand pounds, but to each person being unique there are a multitude of responses.

Right now, there are probably a lot of young parents who just found out their child has Angelman Syndrome. Its going to be a game changer of your entire life, one that is going to have profound ramifications. I pray that you do not have to end up in the heavy boot category that so many of us have, which is to literally put the dirt on your own child's grave. There's nothing worse than that, but it is my hope, and there's reasons more than ever for optimism, that a cure will be found. Groups such as the Angelman Syndrome Foundation, Angelman Network, FAST, and a host of others are generating both awareness and potential treatments. Never in the world's history, have so many discoveries been made so fast, and this is due to the passion of angel families around the world. There's no giving up, or letting off of the accelerator, because I agree that the chances for a cure have increased at an impressive rate.

A lot of what's going on right now, is far past the scope of my simple Criminal Justice background, but for those whom find Biology and Chemistry fascinating, it would behoove you to go to school and become a member of the greatest scientific discovery of all time. Angelman Syndrome is the only autism spectrum disorder that can be identified with a blood test, and mice have already been given this deletion of chromosome 15, along with being cured completely. These aren't minor accomplishments, and these are prior to the recently revised brain project, that mirrors the DNA one of years ago. Scientists figured out how to do DNA mapping, with the brain study at NIH and other institutions, its only a matter of time before the curtain hiding answers is widened just a bit more.

To the parents of a child just finding out your child has this condition, my heart goes out to you, but know that you have lots of families and groups ready to assist you. Its a group collaboration, and your family will grow quite large, although it will have a lot of different last names. That's the beauty of it, as while AS can be challenging, you get to meet some of the most amazing people. Even after our unexpected terrible night in 2009, I can literally say we have been blessed to still do the same, and our entire family is grateful for the support and understanding of so many. We are on the sidelines now, but the smiles of angels carries us on, as does the hope that young people with AS today might just be cured tomorrow.

International Angelman Day: It Might be Too Late for Some, but for Others Its a Learning Experience

There were some tears leading up to yesterday's International Angelman Day Event, as I sat with my four year old son, and realized how much he looks like Tommy. We were at Ruby Tuesday's, which was kind enough to donate 20% of proceeds to FAST, otherwise known as the Foundation of Angelman Syndrome Therapeutics. They along with other organizations such as the Angelman Syndrome Foundation, and others across the world were involved on February 15th, which is of course a number all who are aware of this condition know. 15. That's the chromosome deletion associated with Angelman Syndrome, commonly called AS, and it and the related seizures, are responsible for the death of my son's older brother. He was five, and while having going through the grieving process hasn't been easy, I accept what has happened and have moved into a forward looking position.

What would cause such a change? Acceptance. There's not a lot in life we can control, even if we are freakish about it, and have never failed at anything. Yet we are meant to fail in some regards, because we are not Gods, but rather human beings. We sin, we error, we get kicked down, but yet we get up. Humanity. That's what we are all a part of, and whether we like it or not, each and everyone one of us is related to each other regardless of country, religion, or any other so called check box by 3% at a minimum. I sit here this morning smiling instead of crying, because my son has been asking very good questions about his brother, along with Taylor whom he met last night. While its a lot to grasp for a four year old, and my wife and I want to continue his education at an age appropriate level, I'm glad we had the opportunity last night to participate in this event with a wonderful family.

I'm in retirement mode for the most part, because I realized the importance of stepping back sometimes. Yet at the same time, my prayers, the little money I can scrounge up, along with any Angelman Syndrome related endeavor is an honor to attend. Seeing so many pictures of angels on facebook yesterday, as always, makes me smile and sometimes laugh out loud. Yet I want a cure for these kids and adults, and love their families, who continue to amaze me on a regular basis. That is why you should support any AS research, and much love to all of the organizations who participated in this event yesterday, and Ruby Tuesday's provided quite a delicious meal served with lots of generosity.

Much love to a Neighbor Next Door, May Faith be their Rock of Foundation

"Almost heaven, West Virginia 
Blue Ridge Mountains, Shenandoah River 
Life is old there, older than the trees 
Younger than the mountains, blowing like a breeze "
John Denver


Even people I know who loathe country music, universally admit to liking John Denver's classic. Some of them even like the more contemporary version, sang by Daryle Singletary, that is my personal favorite of "Country Roads" due to his powerful voice. I live one state over from the West Virginia line, although as most who read history books know, is that this was once all Virginia. No disrespect for VA, but I prefer the western part much better. This isn't to say that people in Northern Virginia or other parts are bad, but there's some wonderful about the Mountain State. "Wild and Wonderful" is the motto, and I've had the good fortune of spending many days there. Whether the southern part with the New River white water rafting, camping on the Shenandoah River, or in the more urbanized parts of Martinsburg, each trip has been a lot of fun.

You walk into a diner, and I guarantee you that a waitress will call you "hon." Respect for your fellow human beings reigns supreme in Buchanan and other parts of the state, where people still wave to you, and people will stop for a funeral procession. In all of my travels to WV, I've felt loved and cared for, and was heartbroken along with people around the world, of a young man with Angelman Syndrome passing away just a little while ago. He is in Heaven, without any hold up from St Peter, but rather a welcome sign with "Come on in hon."  The Father, the Son, and the Holy Ghost, the trinity are with this family now, and may He provide the foundation for them to carry on, to not get over but through, to persevere.

John Denver's song is a perfect description. West Virginia is "almost Heaven." Yet there is a place that there is no suffering, no pain, no heartbreak, just love from Jesus and God whom squeezes but does not choke.The state might be the most beautiful in the union, but its no where in comparison, to where our angels are. They are having quite a party up there, and while there is sadness on earth, may this family feel compassion, understanding, and we always have their back. The Blue Ridge Mountains, the powerful and long river of the Shenandoah, are nothing when compared to the beauty of God's love, and ours as well.

Nine Years Ago This Evening, Tommy Was Born

I'm not alone as a father, who has been preceded by his child in death. Nope, there are many out there, and all people grieve differently, although the pain is the same. Nine years ago this evening, I was in the hospital with my wife, as she gave birth to our son Tommy. I'll never forget that night, as we were just so excited, about the little boy who was "on the way." He emerged crying, and I couldn't stop either, as he was just so beautiful. Both of us were thrilled to be parents, and the fact that it was a boy, my concerns of having to get another shotgun went clearly out the window. It was a thrilling night at Virginia Hospital Center in Arlington, Virginia, and my parents and mother-in-law, along with my brother were with us to welcome Tommy to this world.

Of course, Tommy did pass away almost four years ago. Not a single day has gone by without thinking about him. This has by no means been an easy process, and for those who haven't gone down this road, I pray that you never have to experience such pain. There are no words in English, or probably any language, to describe what its like to find your child unresponsive, to have to make their final arrangements, or put the dirt on the casket that they are interred in. Yet there have been lessons. There has been rage, tears, but at the same time, there also has been hope. So many good people have entered our lives, and stood by us at our time of need, and have continued to provide support. Thank you for that, because I wish I could express how grateful we are, but there's no way that this can be done with mere words.

Later today we are going to visit Tommy's cemetery. My parents have placed a red balloon on it, since that was his favorite color. Its hard to believe that he would be nine years old today, if he was still alive. Time flies and it doesn't, but what doesn't change, is that he is still very much in our hearts. He might be gone, but yet his legacy lives on, as we tell his younger brother all about him. This sometimes is very painful, but it must be done, because that is the best way to honor Tommy. The past few weeks have hurt, I'm not going to lie about that, but we accept that our boy is gone. I don't know what tonight will bring, nor tomorrow, nor the coming days ahead. Yet even with the tears, there is a smile, even with the heartache, there is hope. Hug your kids, and tell them how much they mean to you, because you just never know.

Obituaries Don't Get it Right with "Was"

I had some down time at work the other day, and was reading the obituary section. That tells you all you need to know, as there was no activity, and to put it mildly, "Boredom" was the word of the day. Dr. Joyce Brother's obituary was the featured one, and while she did live an impressive life with a lot of accomplishments, I don't like the word "was." I'm sure her relatives and loved ones don't feel this way, although I don't know for sure, because whether you live to her ripe age or less, "was" doesn't seem to be the proper way to describe one's death. Yes its permanent of course, and people can argue all day about life after it, but I do firmly believe in my heart that our soul's leave our bodies into the Heavens. There is renewed interest in this area through some religious scholars, and also through the medical profession. Yet the word "was" isn't really true about our children when they go home, and we don't.

Death is not a comfortable subject for most. We try to avoid discussing it, or looking the other way as a funeral home, is on the side of the road. I plan on living until 100 years if God is so willing, just so I can finally accomplish something, that won't be mentioned here but its quite hilarious. Yes my own son passed away four years ago, and Tommy is thought about and missed each and every day. Even through the tears, and the occasional smile, he is still very much a part of our family's life and always will be. That's correct, "IS!" His younger brother is learning about him at an age appropriate pace, and other parents who've been met, also feel the same way about the "was" and "is" wording too. Some might say, that semantics are a bit anal retentive, and in most cases I'd have to nod my head. However, with death, even though its permanent, our children are still very much a part of who we are, that are part of this club that's not wanted but very much the reality.

You can run all day, lift weights, drink vitamins, but you are not avoiding that final curtain call. When its your time, I hope that you have lived a life of purpose, and one where you can say "job well done." That's my goal, because even though we each must face challenges and tragedies beyond our worst of nightmares, it is imperative to stand up, dust yourself on, and continue to keep your child's memory in your heart. If I was struck by a vehicle tomorrow, or manage to land on a bicycle with no seat from a tall building, I want my wife and son, and immediate family to remember "is." The obituaries have it wrong, because while our loved ones have left us, they are very much a part of our daily lives. "Is not was."