A Lot of Families are in Pain Right Now: Facebook Helps

The death of a child is the worst event that can happen to a parent. There is so much anguish, deep pain, and so many dreams shattered that it seems impossible to pick up the pieces. Yet there is hope, and as the father of a child whom went to God far too early, I am thankful for Facebook. Yes, the social media site, that is either loved or hated, but nonetheless changed the landscape of how folks from around the world communicate. During the hardest period of time, after burying my son, Facebook became instrumental to reaching out to others, and to have people talk to me. I didn't feel like talking to people face to face, or even over the telephone. It was just too painful, and while I still continued to love folks I knew all of my life, and others that I would soon get to know through this medium, I retreated into a shell.

That was in my house. I didn't want to go out anywhere, as I worried that I would just breakdown, or run someone off of the road by my "not giving a damn." Yet through Facebook and emails, the darkest hours were at least opened by a channel on the 'net," and provided much comfort during this time of grave indignation that just seemed to linger in every inch of my consciousness. Right now, families that have gone down the same road, are being helped by Facebook. People are able to send them heartfelt condolences, messages of support, and also let them know they are not alone, even though they feel that way right now. Others whom have lost a child have told me the same thing. They didn't want to speak to anyone personally, but behind the scenes of a computer, they were able to convey their pain and commiserate with others.

Each person handles the loss of a child differently. There's no right or wrong way, as long as you don't harm anyone else or yourself. It is okay to cry, to question everything that you've held to be true, to have anger, sadness, and guilt. Each of these are completely normal, as an event of this magnitude will rip your soul apart. Yet with time, and with Facebook, you can use these tools to not be isolated. There will be times where you will want that, yet sometimes its good to touch base with others when going through such a traumatic event. Is Facebook the only internet platform? Nope, there are blogs and traditional emails, but Facebook is good due to this being able to find online support forums and resources during these times. The road to recovery is a long one, and while you shall not get over the loss of your own flesh and blood, you shall get through it. Facebook deserves kudos for the service it provides to families in grief. I am thankful for it as are many others, all across the globe.

The Angel Quilt Project

http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848#!/pages/The-Angel-Quilt-Project/267961783227848


There is nothing worse in the world, than having to lose your child. We often complain about the most trivial of things, such as a bad day at work, or that the lottery ticket was just a few numbers off from winning some serious dough. Times are indeed tough for a lot of folks right now, but when you look at the grand picture, it is imperative to count your blessings. I do more now so, after having my perspective changed, with the loss of my son Tommy. He passed away from a seizure in 2009, and while I cannot say that I don't complain about being stuck in traffic or other things, I have come to the realization that there's so much in life that really doesn't matter. It is trivial, and even if having a crummy day, it is important to at least find something positive about it. That could be something as simple as "I have a job," or "Thank God today's almost over." These changes have really helped, but unfortunately I have not as yet learned how to forward the clocks.

The link up above, just take a look at it. This is a creation based out of love, that Susan was able to come up with, and she is an Angel Mom and a woman who has a big heart. She came up with the concept of quilts, throws that would be created for those whom have lost a child. This would include a picture of their angel whom certainly is in Heaven, surrounded by other children whom have Angelman Syndrome. (Angels). It would show them that folks around the world, and other angels care very much about their little one that has gone to God far too early, and that they are not alone. Alone. Yes, that is the feeling of a parent after going through such an ordeal. I felt that way for a long time, as modern medicine is so cutting edge, that certainly no other parent had to contend with such things. Yet walks around my son's cemetery, and meeting so many other folks has shown me, that I am not. In fact, its more common than we would like to admit, but it is the sad reality for a lot of people, that at this very moment, would be comforted by a quilt or throw.

Please help the Angel Quilt page by liking it, and although its still a work in progress, sign up to help. Quilters are needed, donations are, or by helping to let others know about it, we can all play a part in this. That parent going through such tribulations, will be directly impacted by your kindness. Think about that Mom or Dad receiving that quilt, when they feel alone, in such pain, and what it will mean to them. Sure, they are not ever going to get over the pain, but they shall get through it. This will help in that process, and be a physical way that they can both see and touch the love that is being sent their way, when they need it most. We are all so interconnected, and soon a paypal account will be set up for materials. More quilt warriors are needed, but there are a few signed up. Let's do this, let's make this happen, and show these parents that there are people all around the world, coming together at their time of need, to let them know that they are being thought about. It means so much when you are at the time of your greatest heartbreak, the loss of your own flesh and blood, and its a way that you can show all of your love to a family crushed.

Carrying Your Child's Casket-The Weight is on Your Heart, Not Your Shoulders

This past week I spent some time, just quietly reflecting at my son's grave, and walking to the Oak Tree that's about ten yards away. It overlooks so many graves, and often I think about those other parents, whom I sometimes meet there. A lot of time it is empty though, and that seems to be the feeling when sitting on a nearby bench, listening to the wind chimes that families have placed upon the trees branches. Death is an uncomfortable subject, its not like discussing a favorite basketball player's triple double, or that the weather appears to be changing. Its a word that is synonymous with pain, tears, love lost, dreams crushed, guilt, and gloom that just seems to be a albatross around your neck. Its always there, and as I looked upon the sheer number of graves on my last visit to where Tommy is buried, I was struck by the sheer amount of little ones whom have gone to God far too early. There are hundreds of them, and I spent some time reading them.

There's not a lot of information on them. A name. Dates of birth and the day that little boy or girl was called home. Some having sayings on them, and there are a few that provide some solace during these walks in this place, that is beautiful even in the midst of heart pulling pain. My son's grave is close to the memorial hall where his service was, and looking at that building, I don't think I'll ever be able to walk in there again. I remember the funeral director, whom I greatly admire, as she has a special needs child, closing his casket. It didn't make any noise, it was silence aside from the tears of family members falling down their cheeks. Carrying my son's casket out the room, and down into the waiting limo was so painful. It wasn't the weight of his remains or the coffin itself, rather it was the weight of the pain on my heart, and the rest of my family's.

There are families right now going through this same experience. They are having to bury their loved, cherished babies. The pain of picking out clothes, coffins, and shoes and toys to be buried along with their child is a punch to their soul right now. They are going to have to make arrangements that they never could be prepared for, and may they find comfort one day in walking around where their little one rests. I never thought a graveyard could be a place to find refuge, but it is. I have seen all of the markers, and know that I am not alone, nor are these families whom recently have had to go down this road that no one wants to. At Tommy's grave, I have witnessed kindness, such as a young man putting back the flags after a storm. Hopping off his bicycle, in the middle of a workout, he didn't see me or anyone else. Yet I saw this act, and it made me smile, as it provided hope. The gentlemen whom tend this area are kind folks, and I am thankful for them keeping this area a sanctuary of reflection, that involves tears, depression, but also some smiles looking back at my boy's life. May these families find this to be the case one day, because while the pain will never go away, may they realize that they are not alone.

FAST (Foundation for Angelman Syndrome Therapeutics) Wins Vivint Contest

This past weekend, has been painful for the entire Angelman community due to children losing their lives to accidents and seizures. There have been a lot of tears, as if there wasn't already buckets enough over the years, but today was a reason to celebrate. FAST, Foundation for Angelman Syndrome Therapeutics, is an all volunteer organization that is working on finding a cure for this condition, which is caused by a partial deletion of chromosome 15. Today, due to voting of so many in the Vivint Company's contest, they have secured $250,000 in grant money to work on making a cure a reality. This is joyful news, and I make no bones about it, there's going to be a fine cigar lit up in celebration tomorrow due to this. To all of the families across the world that have an Angel or whom have been touched by one, this is a day for the history books in folks becoming empowered ,and this condition becoming much more understood as well.

I watched with anticipation on Vivint's internet feed, to see the Chairperson of FAST make a speech on behalf of this donation from this company, that truly does understand the importance of giving back. Other charities whom were helped by Vivint spoke about their organizations, and there were plenty of moving moments, and I was both crying and smiling at the same time seeing this. When Paula went on the stage, she spoke for the thousands of families across the world, and for angels as well, and although you couldn't see the halo, it was there. Her remarks were very touching, and I hope one day to get a chance to personally thank her, but for now this will have to do. The same for the sales staff and technicians, and all of the other employees at Vivint. Gosh, I hope I can thank you, and please understand that you might just get a hug. To know that salesmen and technicians, even in this tough economy were willing to donate commissions from hard earned sales to this effort, says a lot about their character.

Today is a good day. I look forward with anticipation, to seeing an already fine organization get even better, and grow in strength and influence. FAST is no doubt full of loving parents, whom want the best for their children, and that is a cure. This is one step closer to becoming a reality, due to the numerous folks across the world, who voted and partnered up with the compassionate souls at Vivint. There are celebrations tonight from numerous countries, and in the hearts of many people. Godspeed FAST, may you succeed in this endeavor and in others, and to an angel mom and all of the folks that participated in this, thank you for making the dreams of so many come true.

A Ride Home, My Son in the Morgue

The pain of November 4th, 2009 will never go away. A lot of events are simply erased from my memory, or in crushed, little pieces from that night. My son's body, CPR, flashing blue and red lights, panic, anger, shock, and a stupid red book on grief. After hours awake I finally laid down in the bed. How could I be in the bed while my son's body laid in a morgue? Alone! My boy was completely alone, and although I never set foot in here, him lying in a storage area surrounded by the bodies of others.

He was not alone, as He had already gone to Heaven, his body just being the physical remainder and his soul already with God. Yet I remember sitting upright sweating, thinking about this, and what a horrible feeling it was. Just a short time ago, I had wished him a good nap, and now he was dead. That's right, gone forever from our lives, this vibrant boy whom loved to smile and laugh. A house that had been full of laughter had been changed to one with a drapery of pain, a place that I wasn't sure I could even stand to be in. My son wasn't in the house, and although I couldn't sleep well, I did from pure exhaustion of which I had never experienced.

Right now, there is the body of a child in a morgue. There are families in grief, just grasping the fact that their lives are not going to be the same. All of their dreams, their children they have cherished and been through so much with, are gone. The initial shock of losing a child is different for all people, as we are all individuals, yet at the same time there is a shared pain. The past week has been especially hard for three families, one of whom lost their daughter in a tragic boating accident yesterday. They have to face a new reality, one that they might have thought could happen, but now realize it very much does so.

Their spirits are hurting, the very essence of their lives missed. In the coming days, they are going to have to go through even more pain. They are going to have to select clothing that their child wore, place it upon them, and say goodbye again. There will be tears, and a glassful of pain, that's going to seem as if its not ever going to be empty from all of the crying. Waves of pain will hit them as if its a tornado, followed by moments of reflection, and also levity. It is a strange process, but I hope they will be comforted in knowing they are not alone. This new reality stinks right now, as it always will. Yet the "new reality", may also teach them new lessons, albeit painful ones that cut right to their souls. Yet, even with this hurt, may they know that they shall get through, not over this. Along this road, this one full of pain and a knife to the soul, they will find out how much they loved their children, how many love them, and rest assured that your little boy or girl is no longer in pain. They are with God, and its okay to be angry with God as well. That's proof of His existence, and that your child is not alone, nor are you.

Death: The Harsh Reality

To answer some folks question, yes the passing of two children of seizures this past weekend re opens some wounds, but our hearts should be with them at this time. They are the one's whom are suffering, they are in immense pain, and they are the ones who need to know that they have people praying and crying alongside with them. All of us are going to die, and while this is not a comfortable subject, it is the reality. We do not know when we are going to be called home, as that is up to God and God alone. This is one of those times, where we have to take our hands off of the steering wheel, and just accept that sometimes God's wishes don't coincide with our own. When an older person passes away, we are able to celebrate that person's life, and while we will miss them, its much different than when a precious little boy or girl does.

Right now those two families, are in our hearts, as they are going through what can only be described as pure hell on earth. There is no worse pain, no more lonely of a feeling, it as if you've died yourself and your soul is crushed with a magnitude of misery that never seems to end. Emotions are all over the place, if you can feel them, but the prevailing one is shock. Nothing in your life prepares you for burying your own child, its against the grain, against everything we hold to be true. Yet it happens, as has been the case this past weekend, that has left two families grasping at everything they once believed in. Their hopes and dreams have been crushed, siblings are left without a cherished brother or sister, and they now as families have to do what you would not wish upon an enemy. That is to bury their own flesh and blood. Their babies. Their sister. Their brother. Nephew. Niece. Friend.

These families must feel our prayers right now, as they are experiencing gloom that is to hard to describe. When my son passed away, I just felt more alone than ever before, that the world had been turned upside down. I will never stop crying, nor shall these families. They will never get over it, yet my hope is that they shall get through it. This won't be easy, as the road that lays ahead of them, is going to be full of explosive charges and pitfalls that can best be called harrowing, and full of anguish. Each person is different, and handles such an event on an individual basis, but these families need to know that they aren't alone, that they have the support of family they didn't know they had. I don't know if others whom have been through this, and there are many, have felt this, but in my darkest days, it was if being kicked in the soul, and the pain emanated from everything and everywhere.

My message to these families is simple. Love one another. You are going to go through all kinds of emotions, anger, guilt, sadness, frustration, angst, anxiety, and so many more. There are going to be periods of time when the pain has a railroading effect, and there's no time frame assigned to it either. You shall not get over it. You shall get through it. Right now you are in the opening stages of a long road, and along this path, you are going to have to question everything you once believed, and face a new reality. Is it going to hurt? Yes. Yet at the same time, you are going to learn lessons that you never thought possible, nor wanted. And that is okay. Look out for those angels among us, and hold on to what they say. You might not catch what they are saying at the time, but look back at this when it is the right time, and know that you are never, ever alone in your pain. People across the world have been in these shoes, and while you cry and question everything from the value of life to faith, know that you shall overcome this crushing blow, and carry on. You shall stand upright again, and although there will always be a break in your heart, your spirit shall return in a new form. You will one day be reunited with your little ones, when God calls you home. He has them in the palm of his hands, and they are loved with such a passion, that does not exist on Earth.

Led Zeppelin's "All of My Love" : A Song Can Change With Time and Pain

Led Zeppelin has always been my favorite band, as their musical talents, are without needing to be even discussed. Their influence is even more so than the Beatles and bands from previous eras, and the vast majority of their songs I have always just been smitten with. Yet "All of My Love," was one that I never could get into until recently. Robert Plant lost his five year old son as well, and this song is a perfect representation of what a father feels after seeing his little one go to God far too early. Its painful to listen to, yet at the same time, it also provides some comfort due to Plant's passion, and the talents of band mates Page, Jones, and Bonham. If you are near a computer or have the CD, crank it up, and if you want to hear love, the 4:00 mark where Plant just wails "All of My Love," will aptly produce the dark shadows of missing that child of yours.

The lyrics of "At last the arm is straight, the hand to the loom, is this to end or just begin?" are so true. The pain never goes away ever. You never get over the passing of your child, finding them unresponsive, and having to just go through that knife in your soul, that just makes you bleed without the veins being cut. It tears you apart, and while there are good and bad days, that lyric of "is this to end or just begin" is a constant battle that you must face. You can get through the passing of your child, that is very much true, and face perilous days that make you question the existence of everything you valued previously.Your life will never be the same, yet it does not mean that it has to be a horrible experience. Instead, you must reflect on what is really important, and that is to continue on in the battle of life, as each day brings new challenges, but also possibilities. Each day is a blessing, whether good or bad, and full of valuable lessons.

So if you can, listen to that song, and hear Plant's heart pour right out on those vocals. With that voice, and the power of that song, be sure to give your son or daughter a bigger hug than ever, wrapping your arms around them to know that they are loved so very much. God works in mysterious ways, some of which coincide with our wishes, some of which are simply out of our control. I am not angry at God anymore, rather just a man whom misses his boy, and finds simple joys of a hug that much more fulfilling than ever before. In a couple of months the passing of Tommy's day will no doubt be painful. It is going to be rough, and the start of another chapter in life continuing on, through a cascade of emotions. Yet, his legacy lives on, as each of us only have a limited amount of time on Earth before being called home. Its what we do with that time, that really does matter, and none of us has to do anything special or over the top. Instead, what we can do is support each other, value the sanctity of life, and that each day begins anew. "All of my Love, All of My Love, All of my Love to You."