Our Young People Get it-Helping out with Angelman Syndrome Research

Growing up, I never harbored any ill intent towards people with special needs. They were simply just other human beings, who were passing me by in the high school hallways, that I attended while just trying to get good grades and go on to the next journey in life. It was an honor and a privilege to have an autistic man in my Boy Scout troop, as he broke down a lot of barriers, and I'm proud to have heard later on that he got his Eagle Award. Yet, I was never passionate about working with kids or adults with special needs, even though I now realize in hindsight that they are among the best people in the world. They go through a lot of challenges, yet they refuse to give up, and shamefully I still take for granted my talents that some don't have. Of course, I don't have a lot of talents, but I don't have to be afflicted with something like Angelman Syndrome. This is caused by a deletion of chromosome 15, and in 2004 my son Tommy was born. He showed a lot of problems right away, was labeled a "failure to thrive baby", screaming for hours into the night. After some time, we got a diagnosis for him, and it was of course the condition named after the discovery of this, none other than Dr. Harry Angelman.

Angels as they are known, are beautiful boys and girls. They are so innocent, and while they may not speak, you can see everything in their eyes. Getting a hug from an angel, is something I recommend to everyone, because once you do you will feel something that is beyond spiritual, and far past the common realm of what we experience as joy in our lives. Tommy sadly lost his life in 2009, to seizures related to AS, and not a day goes by when we aren't thinking about him, nor are a lot of people that he met while he was on earth. I was very much moved yesterday, when I found out about a young lady, attending a school in Connecticut donating half of her lemonade stand proceeds to the Angelman Syndrome Foundation. (www.angelman.org) Her name won't be posted here, but from what I have learned about her, has left me impressed as she "gets it," which sadly my generation growing up did not. She is nine years old, and has the heart of an angel, as she is friends with both another young lady, who happens to have a sister with AS.

She spent a day of her time, helping out those, that will have that cure if the cards are playing as they seem to be. The past few years the ASF and other groups, have had great success in discovering potential cures, along with developments that can help people with Angelman Syndrome. One of her statements is impressive for someone her age, and its something that all parents, or those who love an angel can relate to. That is, "I wish she could talk for one day, and tell me what's one her mind." With angels eyes, so many wonder what they wish to state, and God willing that day is coming soon. The research at University of North Carolina Chapel Hill, and others is showing promising results. Also with Angelman Syndrome, as it is on the autism spectrum, might provide an eventual "blood test" instead of a clinical diagnosis, bringing relief to so many families not just in the USA, but around the world.

I hope to one day get the chance to thank this young lady personally, and many families across the US and in other countries, applaud your efforts to find that cure. Know that you not only made a difference to them, but also to so many, that miss their angels but still hope for that moment to happen. It would be a joy, tears of so many hearts, to hear an angel say exactly what's on their minds. I can't speak for them of course, but I feel that they have a message of love, because while this life is often confusing, there's just something about angels that seems far and above our understanding. For this young lady, you not only have my admiration, but you are also proof that "the kids are alright." That song came out prior to my birth, but what it rings is true, and some things do get better with time. This current generation of young people are incredible, and they are so giving with not only their time, but also with their hearts in an effort to help so many others. God bless you and thank you for taking a stand, and for not only helping out an organization that helps so many families, but also may allow angels to one day speak their minds.

The Majesty of the Caribbean Sea

There is something spiritual about the Caribbean region, and the sea that has its name. This past week our family went on the vacation of our lifetime, and there were indeed a lot of smiles and laughter. We met so many kind people from around the world at the resort we stayed at, and also many citizens from Mexico as we traveled around the country. It was an honor to learn more about the Mayans, whose civilization I began to get more of an understanding with years ago in a college course, where for once I did not skip a class due to how fascinating they are. Meeting Mayans was remarkable, and while much of their civilization was overtaken, their ideas live on in so many fields. As my wife and I watched our son who is now three, and looking more and more like his brother we so dearly miss, brought so many grins, although I do hope that he will loosen up a bit eventually. He did make a few funny comments during the trip, and seeing him in the pool, reminded us of Tommy who passed away in 2009.

One night I strolled the grounds of the sea, and just looked out, as the Sun went down over the horizon. Tears did go down my face thinking about Tommy, and other children I've met with Angelman Syndrome, Rett Syndrome, along with other conditions that so deserve a cure. My prayers I hope are answered, as I prayed for that and for so many families, who have been in our shoes. Some have been quite recent, and my heart breaks knowing the road that they are now traveling on, because it is one fraught with pain and one that no parent should have to. Yet it is the way of life sometimes, and that is why each and every day is to be considered a blessing. As I looked up at the moon and the sea, I prayed for these parents, these children, and all of their families. It felt good and painful at the same time, as there are no words to describe what it felt like.

A lot of thought went into this walk along the white sands, and the water that was so turquoise in color. While I do believe in Christian tenets, I prayed for all regardless of faith or lack thereof, and felt something among the winds on my back.  Those winds kept me standing. May they keep others as well. Life is such an arduous journey, and our world's history has been one with many challenges, both at a societal and individual one. It felt good to get this recharge of the batteries, because while that is a cliche, I felt like a boy again while playing with the sea lions at an aquarium. There is now some energy again, and while I'm not sure where it is going to lead, I pray that God shows me the correct direction and that I follow that exact trail. God be with all of those who are enduring the loss of a child, because while you never will get over it, you can get through it. Also, to those who have children with a medical condition that needs a cure, help is on the way, as our collective awareness at this point in time is better than ever. The following years with these developments, along with the genome and brain projects are promising. May they bear fruit, because there are so many people on this planet, that are waiting for the time when that light bulb turns on.

The Kids are Alright: The Younger Generation's Future is Bright

The goal of each generation, should be to be better, than the "old guard." This one has often been called "the facebook bunch" or other negative terms, that are far from the endearment that they rightfully deserve. We live in a skeptical society, whether that's human nature or a conflagration of our media and Internet based culture. Yet today I met a young man, who's another shining example, of how this up and coming group of young men and women, are going to be great for those with special needs. Yes we have seen this in classrooms, and parents of children who have serious medical conditions, have been so proud of young people, who show not only respect but love to angels on earth.

This young man's name won't be posted, but it was just music to my ears, hearing about what his plans are. He is seventeen years old, and getting ready to pick which college he wants to go to. Often he spends time with those who have special needs, and a lot of the kids he works with, are on the autism spectrum. He has decided to go  to college, and get a degree in Special Education. With this he will become a teacher, and he wants to incorporate some new ideas into the curriculum. One of these, is connecting further with those who have Asperger's, and trying to get people with this condition, to help him see the world through their eyes. Eventually his plan, is to have those with Aspergers teach at least parts of classes, and show what it is like to contend with this on a daily basis.

I wish him well and Godspeed in this endeavor, because while he is very bright, what impresses me the most is his compassion. May this world, which so often breaks even the toughest of individuals, cave into him rather than the other way around. We are making strides with regards to those who contend with autism and related conditions every day, yet there is still much progress to be made. With this young man, and so many more like him, I have a feeling life is going to improve for so many people and their families. Let's hope and pray that he and these other beacons of light, are able to cross that finish line, so that all people regardless of any ability get equal footing at enjoying life at its fullest.

Hope is Where the Heart Is

All of us at one point in our lives, have lost all faith in everything. Each and every one of us, that's on this planet, has baggage. I think I'm up to a complete Samsonite set by now, but what matters, is how you deal with it. Do you let it in a figurative sense, roll around on the turnstiles at the airport, or do you pick it up, and move forward with the lessons learned? All of us have made mistakes, all of us have sinned, all of us are imperfect beings, even with the kindest of intentions. It does not matter what country you live in, or any of the so called labels that all of us get caught in, because at the very bottom of our core, we all have souls that are often weighed down. Recently I read a book called "Changed by Faith," by Dr. Luis Palau, and I agree with him on his assertion that 80% of our problems, are due to unresolved guilt.

How do we deal with such an issue? By facing it head on. If I could count how many times I've been angry or sad, and there was a penny attached to each instance, I'd be a millionaire by now. For the the fleeting moments of happiness, joy, that are to be grasped on with full intensity, I'd have several hundred thousand dollars in my savings account. Life is not an easy ride. Its full of bumps, bruises, and pain so heavy upon the heart, that it does feel as if the world is walking on you. Actually, Hemingway's description of "the word breaking the most toughest of people," is accurate, because there will always be pain, tragedies, and events that make you not only question your sanity, but also "what is the meaning of life." The last one has caused me the most difficulty, and I think to be completely forthcoming, the biggest issue I face regularly is being too hard on myself. Is that a cop out? Nope. A lot of people I've met, in the throes of anguish, that is their dilemma. You aren't alone. Life is an adventure, and that is what we are put on this planet for, this blue marble that is covered with water and inhabited by idiots. Those are of course, someone else :).

You can think you've really "screwed up everything," but in all reality, someone else has "been there, done that." It took years for me to finally admit, and there have been tears associated with this, to realize that each of us has value, and also we are not always going to make the right decision. The learning curve can be harsh sometimes, but ultimately looking in the rear view mirror, I now am able to realize what went wrong, and make corrections on the trajectory of life. Am I now going to never make a mistake again? Never. Just kidding, of course I'm going to. All of us will, but that is where we learn what we are made of, what deep down that blood and guts that is coursing through our veins, can do not only for us but for the lives of others around us in the same heavy shoes.

So often we worry about being inadequate. It paralyzes us and we become complacent, not reaching out for that branch that brings stability, because of the "what ifs." There are no guarantees in life, other than we are born, we live, we die. Its pretty simple, and that is the beauty in a way, because while we don't know our day, those are etched in stone as mortal beings. A smile or laugh, by one of our fellow human beings, can make all of the difference in the world, and I bet you have made more of an impact on others, than you'll ever know. Some of the best things in life, result from quiet faith or what seems to be a coincidence. There's no such thing as that, because these are events, that are in fate meant to happen. Looking at the stars at night, I find it remarkable, that these lights from the cosmos are from years ago. Just reaching Earth now their brightness in the sky, is a reminder that each and every one of us, are a valued human being with unlimited possibilities for living a life of purpose and satisfaction, no matter what curve balls are thrown our way.

Spending a Weekend with Two Rett Angels: Spiritually Touched

This past weekend I did not make it to church, but you do not have to go to a place of worship, to feel spiritually moved. The Good Lord is with us always, and over the last couple of days, I've been thinking about a trip to Baltimore, that I will no matter how valiantly, fail to put into its context with mere words. I had met a little girl with Rett Syndrome before, which is a  neuro developmental disorder that affects mostly girls. Estimates of occurrence are somewhere in the 1 in 10,000-15,000 range, but be assured that girls are born with this each and every day. According to www.girlpower2cure.org, it is as prevalent as ALS, Cystic Fibrosis, and Huntington's Disease. There are several foundations, and scientists from international locales working on a cure.

My sister from another mother Lisa, has a daughter named Ashley. I had seen pictures of videos of her before, but never had the chance to meet this twenty four year old princess. The same goes for Ronna, a kind lady from fairly close by, who's daughter is named Amanda. She is twenty five, and both of them look like they are twelve, truly both are gorgeous. They are cherubic angels, and I am so grateful for the chance, to have spent time with these wonderful families, that are resilient in all aspects. As soon as I met these two young ladies, I was deeply moved. There were lots of tears and smiles, because looking into their eyes, you can see the power of love, innocence untouched by the sometimes conflicted environments we all live in, along with proof of a spiritual connection that all of us have. 

Both girls had their dolls with them, and I cannot even begin to fathom, what their mothers went through as they learned their beautiful girls had Rett Sydnrome. These girls and their families deserve a cure. Until then, they have earned our respect. Both were non-ambulatory, and have had to fight seizures and a whole host of health issues. They've both fought through numerous surgeries, including invasive ones, that left me in tears just thinking about what they involved. Yet they don't give up, and likewise their families don't either. Both Lisa and Ronna are fighters in every sense of the word, and my hat also goes off, to the siblings of these two beautiful young ladies. Grant and Rebekah, you have not only made your parents proud, but you also have made the world a better place. You have fought tooth and nail at every stage, along with continuing to educate the next generation, which is how a cure will be found. Sue, you are an angel too.

I cried upon leaving both of these girls. There is no shame, but rather a heavy heart, because just being close to them, meant so much. There were just so many lessons this past weekend, and while sadness was part of it, there was also joy, laughter, and much happiness to boot. If I had a glass of wine in my hand right now, I would toast these families, and both Amanda and Ashley. They are champions, they don't quit, and show us that life is to be valued. Looking into both of their eyes, or getting smacked on the head, was one of the best times ever. Thank you to both of these young ladies, and to their families for sharing them with me for a few moments, that have provided a lot of peace and more of an education that I had prior to this weekend.

We Walk in Circles: Another Angel Gains His Wings

We all are born, live, and die. That's the order of business, and while there are jokes about in between events, that's the bottom of line. Each and everyday is a blessing, to be cherished with appreciation, but far too often they are viewed as a menace. Yet they are far from that, because what is a menace are seizures. This past weekend, I was saddened to hear that yet another young man with Angelman Syndrome, passed on from seizures. There were a variety of emotions, ranging from anger to sadness, and all in the AS family are deeply affected by such tragedies. Kids with Angelman Syndrome are so cherubic, have so much heart, and truly are better than the rest of us. Their enthusiasm, their smiles, their laughs, and outlook on life are full of love that simply cannot be verbalized.

Right now, a family in a beautiful part of the United States, is facing gloomy clouds. All of our hearts and prayers should be with them, as they are going through the worst possible pain, that any parent should never have to contend with. It is the hardest possible road, full of rocks, that jut out when unexpected, even after the shock of losing a child. They are going to need our prayers, our support, our compassion. All of us have been looking at the pictures of this beautiful family, and have cried tears along side of them, no matter where on this planet we are at. This young man's smiles, and gusto for life, are dearly weighing heavily on this family, who so obviously loved him. He had a blessed life, and may the balloons around the world, be released this Saturday in memory of him.

All of us wish that we could "send the seizures away forever," and it is too late for this young man, along with so many other angels. There have been far too many taken by these, or had their lives affected by them. As a simple man, I do not know the reason why, but I do hope with everyone else that a cure can be found. I sit here this morning typing away, thinking of the beautiful spots of Hawaii that I've never had the chance to venture. The crashing of the waves on the beach, that gentle reminder that we are surrounded, by something so much bigger than each of us. That naturally musical from the soul  sound which has lullaby qualities, may it provide the family with some comfort, as well as them knowing they are not alone. They are far from that, because there are so many that have been through what they are going through right now, and each and every one of us that has not still has tears just as valuable, and just as noble during this time of pain.

Today Another Angel Gains His Wings

Psalm 116:15 Precious in the sight of the LORD is the death of his saints.

It goes against the grain, to have to experience, the loss of your child. There is no worse agony, no kick to your soul, that will ever test you as this one. This pain rips apart everything that you held to be sacred, and sends you into a descent that is tantamount to 10,000 deaths all at one time. There's nothing more brutal, more sharp, more jabbing of stabbing knives, and you will never be the same because of it. Today a young man with Angelman Syndrome lost his life, and while it is true that people die every day, every moment for that matter, it is hard to hear about a parent having to bury their child. That's because I've been there, and so many others have as well.

Child and casket don't go together. Young man and obituary don't either. Yet these are the reality, and all of our hearts, should be praying for the family of the young man who has no doubt entered the gates of Heaven, without the encyclopedia set of sins we have incurred on the journey. He got a free pass, right in there, because a child, or a person with special needs, is the direct opposite of the evil, the hatred, and the bad that each and every one of us carries in our hearts. We are all imperfect compared to a child, to a person with special needs, because of the issues we harbor with us each and every single day. These folks see better than what we do, without the prejudices and hardness of life, that turns us into what we swore that we would never become.

All of us must suffer. There are different battles that we must all face, and it is my sincerest wish, that no more children have to die. Yet I am a mere mortal, and it is beyond my power, although I do believe that if we all pray enough, the Good Lord will hear our cries and show grace. Often there is a disconnect from the spiritual realm, but if you walk with the man upstairs long enough, you know there is not a shadow of a doubt of His existence. Why do we have to endure such pain, why are so many families having to bury their children, and pick out what clothing they are going to wear as they are put into the earth? I don't know. It is frustrating, and as all of us like answers, there are reasons for everything, and there is not a thing as a coincidence. Prayers for the family in North Carolina right now, and for all families who've taken this journey, of tears, anger, and confusion that no parent should have to go through. Yet know you are not alone, not from the Heavens that cry along with you, nor the folks on Earth who stand beside you on duty, ready to carry on. 

You will never get over this, but you shall get through.