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."

An Ode to Matthew

Facebook and the social media world, have been a double edged sword in many regards, but I happened to find a picture on a friend's wall that says it all. I am thankful that she posted this picture, and if the family objects to it, I will honor their request to take this down. Since I don't know them, nor can I find them, it is with an honest heart to describe their son's gravestone. The picture says it all, but I was especially touched by it, having lost a son who often was in a wheel chair. My boy learned to walk the last week of his life at age five, and our entire family will never forget his accomplishment. That's right, he walked out of this Earth strong, and I have no doubt that he was ushered into Heaven immediately. I know that he's not in pain, that he is able to do so much of what he was determined to do on Earth with ease, and is in the loving embrace of God.

Matthew's obituary here http://www.findagrave.com/cgi-bin/fg.cgi?page=gr&GRid=7140314, is something that all people should read. It is inspiring. Also it is a reminder, that each and every human being on this earth, has a purpose and must give their best, whatever their ability may be. I pray that his parents have been able to carry on, because while I'm sure they miss him with every ounce of their hearts, they also are aware that there's a place where there boy is truly free. Funeral memorials are often viewed as reminders, but often they fail to convey a powerful message, other than marking a date with a name. Matthew's is far from that, and in fact says "Trusting in God, is what will set you free." Reading his life story was amazing, and his parents faith, and his perseverance are to be commended.

If I'm out where this is, I plan on stopping by, and paying my respects. This is a worthy testament, of showing not only what Matthew did on Earth, but where he is now. He is doing everything to his heart's content, and I have been looking at this a lot today. I  hope others shall too, and by all means, read his life story. It ended at a young age, but the impact he left on Earth, still moves people across the U.S. and around the world. Thank you to a friend who posted this, and also this is proof that our globe is becoming smaller, with our hearts growing larger for what really does matter.