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.