Running for Angels: A Group Based on Love, Sweat, and a cure for Angelman Syndrome

Running either makes you smile or groan. As an occasional runner, who is able to pick up the pace only by having an angry dog behind me, I won't be breaking any speed records. There have been no "runner high's" in any event that I've ran in, but what one group is donig, is creating a lot of joy. Created by Jason Bernstein in Sept of 2010, Angel Runners, are a group of parents who want a cure for Angelman Syndrome.(Caused by a partial deletion of chromosome 15, http://www.cureangelman.org/) for more information). Jason was so touched by young Reece, and other "angels," that he decided to have this group raise money for FAST, which is the Foundation for Angelman Syndrome Therapeutics, and they've been wildly successful. Much more is to come with his dedication and vision, along with his passion for other parents, and most importantly the angels whom we all care so much about.

Along with another group called "Miles for Smiles," the Angel Runners have raised almost $40,000 to help with Angelman Syndrome research. A lot of this is being done by Dr. Edwin Weeber, who's been able to give a mouse Angelman Syndrome, and cure it. We are getting closer, just like how the Angel Runners are to that finish line. When these kind men and women go out, they are as Jason says, "building awareness, raising funds for research, but also bringing families closer together." That is so beautiful, and they have events on a regular basis. One that is very exciting, is going to take place in the Windy City on December 3rd. That's right, Chicago where the FAST Gala is taking place, these brave and hearty souls are going to say "to heck with the Great Lake effects," and run a 5k in Santa clothes. Its called the "Santa Hustle," and while let's hope it won't be too cold for them, may they be able to hustle through this event to a warm place." This is an incredible effort, and just such another way of bringing the love of those with Angelman Syndrome and their families, that research in a fun and unique way.

Would you like to help the Angel Runners? Please do, by checking out their webpage at http://www.angelrunners.com/. They have all kinds of events for good causes, and in addtion to helping charities, are establishing partnershps and also getting folks "moving." That alone is worthy of kudos, but their efforts with the folks at FAST are truly commendable. Feel free to join this group for one of their events, or if you don't like to run, you can still get one of their cool t-shirts. I plan on ordering one, and hope others will as well, as its a good looking shirt that shows an organization that was built out of love, and a passion for generating enthusiasm for folks by a good deed. Thank you to Jason and the folks at the Angel Runners, may you have continued good luck, and keep bringing families closer, along with a cure to Angelman Syndrome that everybody dreams of.

The Angel Quilt Project: "Like it" on Facebook But Love It

Would you like to bury your child? Of course not. No one wants to have their child die before they do, it goes against the grain of everything we hold to be sacred. Yet it happens, much more often that we would like to believe. It doesn't just happen in some isolated region of some poor country, it happens in the most advanced hospitals and homes in the United States, or in parts of Europe that are considered "medically and technologically advanced," or places in Asia and Africa that have specialists that save lives on a daily basis. Yet its not always in the cards, as I'm the father of a child whom went to God far too early. Don't feel sorry for me, but rather do a good turn.

I know death of a child is an uncomfortable subject. That "d" word is uncomfortable for a lot period. However, by liking the Angel Quilt Project on Facebook at http://www.facebook.com/methanross#!/pages/The-Angel-Quilt-Project/267961783227848?sk=wall you are showing your love to parents in this great sadness. They are not going to ever get over, but God willing they shall get through their trial and tribulation, burying their little girl or boy whom they cherished so much. This project is going to help people who love to sew, design quilts with patches of pictures of this young girl or boy, who went to God too soon, and have them surrounded by other Angels.(Those affected with Angelman Syndrome, a partial deletion of chromosome 15). That is a powerful image, and shows that in the fabric and the pictures, the love that this family feels from all across the globe. They know that their beloved child, while in Heaven, is not forgotten here on Earth. These quilts can provide a little comfort, during their time of great sadness, and its something physical, they can either hang up, or cry into. Whatever makes them feel better, because there are going to be tears, feelings of anger and guilt, but there's also going to be hope.

It takes fifteen seconds to "like" this page. That's all, a couple clicks, and its done. You can feel good by just doing this simple thing, and families around the world will know, that you are thinking of them. If you can donate time by quilting, or even just $5 on the secure donation page on the left hand side of the page, that would be helpful with the materials, that aren't cheap. Any leftover money is going to directly help the Vanderbilt University Kennedy Center Angelman Seizure Research Project as well. Please at the very least, "like" this page. It means a lot for grieving parents, those whom love someone with Angelman Syndrome, and provides a powerful expression of unity with these fabrics being woven together with compassion. http://www.facebook.com/methanross#!/pages/The-Angel-Quilt-Project/267961783227848?sk=wall

Little Run, Waples Mill ES, and Tommy : Angels Help an Angel and Much More

Tommy lived with us for five years, and he certainly did a good amount, in the short time he spent on Earth. It was so devastating, right to the core, to find out that such a beautiful young boy had a condition called Angelman Syndrome. We were told 'point blank', that there was a good chance that Tommy would never walk. As if it doesn't hurt enough to hear about your child having severe intellectual disabilities, not being able to speak to you, having regular seizure activity, it was perhaps the hardest to think of him not having mobility. That just really caused a lot of pain, tears, frustration, and angst over his future. Yet "angels" stepped in, and these were the Administrators, Administrative Assistants, Teachers, and specialists that worked at Tommy's school. Who knew angels worked at a school, because as a young boy, I was convinced that it was only the friends of the devil himself whom tormented me with my free admission to the Principal's office on a daily basis. Looking back, I realize it was my fault completely, but I just had no idea of the impact a school could have on my son and also our family.

Until Tommy went to Little Run Elementary, located in a beautiful neighborhood just east of Fairfax City, VA, I thought school was where he would be "institutionalized," perhaps maybe get a chance to see other children. It was much more than that, as Tommy loved the bus that came each day, and the kind drivers and assistants who saw him safely to and from Little Run and Waples Mill Elementary later on. We didn't have a lot of hope, and I now realize that our family, although we loved Tommy, was in a cloud of constant depression that just seemed to linger until he went to school. There we saw people who cared about him, about us, and greatly wanted him to succeed. It was the complete opposite of what I thought, and I now admit that I was jaded and completely incorrect about the importance of special education to not only the child, but also the parents, grandparents, friends, and even neighbors.

Teachers taught Tommy "cause and effect," and he loved these lessons. There was one teacher, whom I am smiling of while typing this, who comes across as the most compassionate drill instructor from Parris Island of the United States Marines Corps. She promised us that "Tommy would walk, you shall see." I was skeptical at the time, thinking "that would be great, but I'm not going to bet the house at Vegas on this happening." She worked with Tommy everyday, along with kind occupational, speech, and physical therapists who didn't give up on him, or us for that matter. They taught us how to become involved, and this made us feel better about Tommy's chances, along with providing us an opportunity to lift this cloud of depression that just seemed to hang around. We felt a lot better, and the school became a part of our lives, as we enjoyed the home visits and interactions there as well. The smiles and laughter each visit, whether at our house or at the school, are proof of this. It cannot be put into a bottle, but I'm still smiling and laughing about some of Tommy's adventures, and how these teachers and specialists, were so intertwined in our lives. They still are, and I am thankful for them.

Later on Tommy went to Waples Mill Elementary School. He was loved at this Fairfax County Public School as well, and it was a similar story over there. At first, our family was a bit concerned about the distance, but that abated as Tommy got stronger, with his health and started to walk in the pool that previous summer. I miss Tommy while writing this, yet I am happy that he did as that teacher said, " he will walk, you shall see." She wasn't kidding, as her hard work and dedication to Tommy shall never be forgotten, nor shall all of the kindness and love that everyone who was part of Tommy's life. His last week of life, before a seizure took him, he walked across our living room. That smile said it all. He did it without assistance, standing strong, and refusing to give up. God bless you Tommy, we miss you, but are thankful for you and all of the kind folks we've met along the way.

A Seizure Cure is Needed Because.....

Right now a parent is up with their little girl or boy, watching them seize up, and monitoring their vital signs. They are stressed out about their cherished child turning blue from a lack of oxygen, and wondering "could this be the one?" Each day they live with this in their hearts and minds, and it greatly affects their quality of life. Parents of children with seizures have a special connection, that is more powerful than your traditional parent/kiddo relationship, in that they suffer together. If it isn't painful enough for a child to have hundreds of times a day, or have them so bad that their development is negatively affected, imagine their parents. These brave folks, and what they have to contend with every single day. That's right, 24/7, as most of them are sleep deprived, and how they get up every day, is a testament to their strength.

A cure for these parents would be so helpful. They wouldn't be stressed out as much, wouldn't be in and out of sleep on even good nights, worrying that they are not going to be there to insert diastat into their child's bottom to save them. These parents would be even more productive members of society. Each year at the Angelman Walks, I am amazed by how giving parents of children with Angelman Syndrome are, along with other conditions. They don't know the meaning of "quitting," but rather sharing their knowledge and helping out the communities that they reside in, even despite the multitude of challenges that they face every single minute. The same can be said for parents of all special needs children, as they show a resilience that is hard to put a finger on, but rather it is possible to follow by seeing what these folks contend with and still succeed.

If these parents didn't have the pressure of seizures, it would be like that "anvil of weight" described in Arthur Miller's "The Crucible" being taken right off of Giles Cory. There would be much more sleep, even more productivity which is hard to imagine but a beautiful thought, and children affected by seizures would have much happier lives as well. That would be a winning hand, a true grace and respite from so much pain, that so many parents and grandparents, along with siblings are experiencing right now.  These great parents would finally get to sleep peacefully, knowing that their children are fine, and not having to think about the game plan, or perhaps calling 911 or worse. Instead, right now there's parents up across the world. They are stressed because of seizures, and for that reason alone we must do everything in our power, to at least lighten up the load a bit.

Hug Your Kids, Tell Them You Love Them

Tonight, my two year old boy is acting up. That's right, he might be on Ebay with an opening bid of "We'll pay you to take him if here in twenty minutes." We've all been in this situation as parents, where there are times that we wish, "couldn't John or Susie just go the heck away for awhile? Can't they just behave? I never did that!" Your baloney-o-meter arrow just went all the way to the right on that, as we have all driven our parents or loved ones "crazy" at one point or another during our lives. I am thankful for my parents, whom were not my best friends growing up, but parents, for teaching me the values of honesty and loving an even difficult person.

Right now, that would include my two year old son, who's a real handful. Yet I am thankful for him, and will be even more thankful when he's a bit more "laid back" and not so "full of vinegar." I make no bones about it, that I am much more sentimental than I used to be. Every day I would just wake up, go through the motions of a day, and then just like everyone else, go to bed to start the process all over again. Now, often its full of walks in the woods, quiet periods of reflection by a nearby lake, or even just long country drives to the middle of nowhere. Sometimes a quiet prayer is said. Other times its a bit more loud. Rarely does it not happen, but sometimes that is the case.

My chronological age might be thirty five, but I feel as if I've have lived a million lifetimes. It has not made me any wiser, but I do believe that going through the loss of a child, has caused me to be much more reflective about life.  I meant what I said the night of Tommy's memorial service, "Hug your children," and continue to do so, for the very reason that we have no control over our child or our lives glass of sand emptying. Yet we can hug our children, even if we are tempted to sell them on ebay. Its a way of letting them know that you love them, that you are there for them, and will do the best that you can to provide for them. Yes, they may not have a huge house, or a trip on a luxury liner everyday, or that damn Lego set that costs a car note, but they will have your love.

You cannot put a price on that. Studies have proven that children of stable environments, regardless of whether there is one parent or two, do much better academically and socially if they feel loved. What does that mean, "feel loved?" Its simple. They know that a parent or responsible adult cares for their well being, would do everything within their reasonable power to help them, and shall guide them on the correct path of life. Its as simple as that. All of the late night walks, prayers in a car on top of a valley, that's what I've come up with. Could it be wrong? Certainly. Yet I believe, just as I did that night of Tommy's service, when family and friends came together, to celebrate his life, that hugging your children is the most important act a parent or loved one can do. It speaks volumes, more than words can ever convey. Don't go to bed angry at each other, and by all means give your boy or girl a hug tonight. Do it for them and do it for yourself, because no one knows but God what tomorrow will bring. Tonight my two year old boy will get a hug, because I love him, no matter what.

Susan Agrawal and Complex Child E-Zine: Bringing a Powerful Voice to the Special Needs Community

"The magazine actually started quite by accident.  I was writing 
medical articles for a newsletter associated with a parenting site 
that focuses on kids with medical issues (Parent-2-Parent.com).  I had 
finished three pieces when they decided they were no longer going to 
publish the newsletter.  People knew I was working on these articles 
and kept asking me about them, so I eventually put them up on a little 
website.  The more I thought about it, the more convinced I was that 
there needed to be a space on the internet where we could archive all 
of the important knowledge we have gained as parents.  Shortly 
thereafter, I bought the domain and put up the first edition, in 
February 2008.  You'll notice that the first edition, and a few of the 
editions following, are written mostly by me.

I can't say I really had a great vision.  If anything, the magazine 
was born out of frustration.  I would read print magazines for kids 
with special needsor visit websites, and the vast majority of 
information was on children with mild disabilities or common 
disabilities like autism.  I never found a place where I felt there 
was significant information about children with multiple severe 
disabilities and children with complex medical issues.  Also, most of 
the articles I read were either written by professionals for 
professionals, or were written by professionals for parents.  I often 
felt that the professionals knew their stuff, but lacked the practical 
knowledge that parents have.  Parents of children with complex needs 
are a wealth of untapped information.  I wanted to get everything they 
knew into one place, where it could help other parents traveling down 
the same path.

Right away we had success.  I found out a major children's hospital 
uses some of the early articles to help prepare families for certain 
procedures.  Articles have helped many families fight insurance 
battles.  In particular, the article on Special Needs Beds has helped 
15 families (that I know of) get their beds approved.  Our first 
editions on mitochondrial disease in 2008 and dysautonomia (also 2008) 
provided information that at that time was not widely available.   
We've helped multiple kids get a diagnosis, and improved the care of 
lots of others.  We've helped parents get organized and cope.  One of 
our authors even got a job, in part because of her writing for the 
magazine.

The magazine is 100% volunteer and unfunded.  All of the authors 
contribute on a volunteer basis.  I do most of the technical work.  I 
have an assistant editor, Shannon Gonsalves, who helps primarily with 
copy editing.  We don't have a budget.  I've chosen not to include 
advertising on the site, which means we have no income.  When/if I get 
more time, I would like to work on developing a non-profit arm that 
would fund the magazine and allow us to have some paid help."


**Written by Susan Agrawal of Complex Child Magazine, which can be read at http://www.complexchild.com/. Thank you Susan for providing an outlet for parents with children whom have a multitude of health concerns, and empowering so many. It has been a joy to have seen your work help others, and may anyone who is interested in making this publication even more available, by all means visit this website. **

Alarm Company LLC, Matt McMillen Touch an Angel and So Much More

"I happened to stumble across Alarm Security LLC.com while bored and clicking around on facebook. This was the first contest and I noticed a chance to win a free iPad II. The question was, "If you won an iPad, who would you give it to and why?" I was skeptical because there are many contests to win a free iPad on the internet, but the more I checked into it seemed legit, as I seen local friend's associated with family who had entered. The contest rules were quite simple: The comment with the most "likes" in 24 hours wins. I realized I may have a good chance and to win for Joshua. I then summoned my "Angel Army" and they were right behind me, because they knew what an iPad means to an Angel or any special needs child. I wanted the iPad because of the exclusive applications and know that they offer more than a typical communication device. I was running neck and neck with another contestant, during the contest Matt friend requested me personally and I began to realize what a wonderful man he was. I wanted to win, but the contest was so fun.

I had conceded to the other contestant who had 9 more likes than I did, but I walked away filled with joy and pride. I realized that I had 302 "likes" and that meant people behind me, which was a majority of my Angel family pulled together to support me. This was priceless that so many people cared! I even had Angel friends I had yet to meet who were in my corner, just because I had an Angel! When I went to write a congratulations to the other contestant on the while my notifications were going crazy! I had more than 70 within a minute, my chat box opening telling me I had won. I seen Matt's comment about giving us both one and I was reduced to tears! Not because I had won, don't get me wrong it was awesome, but because of the happiness that there are still people in this world with giving hearts. His genorousity amazed me and although I had never met him in person, I already could judge his character and know that he was an amazing man! (Winning the iPad or not)

Soon, we will go meet Matt when I get up that way for an eye doctor appointment. I have spoken to Matt over the phone and facebook and am proud to call him a friend. He and his wife are both beautiful people inside and out. I have never won anything really, so I felt guilty about accepting the iPad. I felt like there were other's more deserving than I was. This is why I wanted to pay it forward and I hope more people do, because what a wonderful world it would be if each person just showed one another a kind action. iPads are expensive, and Matt seems quite blessed financially. I am glad that he is not greedy and shares his wealth to make the world a better place. As I have said, many major corporations become greedy and lose focus on the customer, Matt on the other hand would hands down put his customer needs first. I want to continue to pay it forward, and realized you don't have to have a lot of money to do this, opening a door for someone, paying for their cup of coffee anonymously, helping load groceries for an elderly person. All of these are things you can do to help someone! And if you are blessed financially then you can help people on a larger scale. I hope Matt is proud of what he is doing and realizes the level he has helped people, including msyelf. I also hope that he continues to receive business and that one day Alarm Security LLC will be just as much of a household name as ADT, Brinks or even Vivint. Which Vivint is another great story in itself and we know that!

The iPad has really changed our life, and I am not sure how we made it all this time without it, lol! This thing does everything. I am not going to lie when I say I have used applications to budget the bills! Or that Joshua has shared it with his siblings. ;-)[Image] It's really cool!

For Joshua it has helped with so much. We are still learning and I am overwhelmed with the applications and possibility. I am starting to think there is an application for EVERYTHING! We have taken advantage of many of the "free" lite versions. We have one called Talk2, and Joshua was able to tell us that he would like a drink of soda. I realized he wasn't pressing buttons randomly, but that he really wanted Kenny's soda he was drinking. He usually signs "Please" for a drink, or really anything, but he was able to be specific and tell us!

We have also played several sorting games, association games, matching games and so forth. These are so fun and they have made me realize how much Joshua really knows. For instance there is this one that will show three pictures and play a sound. An example was a picture of a door bell, a cow, and a hair dryer. The sound was a bell and Joshua was able to point to the door bell.

I also have used it myself and downloaded lite versions of behavioral situations and how to properly deal with them. One potrays an autistic child who is having a "meltdown" and it is a simulation where you have different options to console the child. It teaches you how to properly deal with the behavior.

The possibilites on the iPad are endless and needless to say, I know that Joshua will be asking Santa for iTunes gift cards. There is an application called Proloquo2go that is an augmentive communication program that we would like to buy. We are using the lite version and it is amazing!

Joshua lives and breathes the iPad. He wants it from the time he wakes up until he falls asleep, in fact there have been a few nights that I have had to pry it out of his hands because he has fallen asleep with it. He loves it and it keeps him occupied and most importantly he is learning and able to communicate with us.

We are just so grateful!


**Angelman Syndrome is caused by a partial deletion of chromosome 15. For more information, feel free to visit the Angelman Syndrome Foundation at http://www.angelman.org/ or the Foundation for Angelman Syndrome Therapeutics at http://www.cureangelman.com/. Donna is a wonderful lady, and her love as well as Joshua inspire us all. Now, for a moment read about Matt McMillen, from Alarm Company, LLC, a business that in addition to having an incredible reputation, has an owner that understands the concept of hard work and love.

My name is Matt McMillen. I reside in a small town in Missouri, called Farmington. Farmington has a great feel to it. It is growing rapidly, and everyone knows everyone. I own a company called Alarm Security. We specialize in home and business security with alarm monitoring and video surveillance. I've been in the business since I was 19, and I'm now 30. I LOVE what I do. And I'm good at it. Around here, if you own a company and do good work (or bad work), everyone knows about it. Any company can spend money on advertising. Billboards, radio, newspaper, phonebook, etc. But no matter how much you advertise, people in our community trade with companies because of ‘word-of-mouth’. People buy from you, because they like you. Not because your face is all over the highway and your jingle is played on the radio 30 times a day.

What’s set me apart from a lot of other business owners is: I know that people want to get to know you as a person. As a business owner, I have a budget for advertising. The budget is there, and people DO need to know the Alarm Security name. But I’ve come to the realization that I can give it away, help those in need, and do even more with it. I’ve worked very, VERY hard to make my company what it is today. I’ve been blessed. I’m honest with people and treat everyone like they are my family. Showing love to others, in whatever way possible, is what life is all about. Just sitting down and listening to someone tell you about their struggles, issues, or accomplishments, makes a world of difference in their life.

I grew up poor and from a broken home. I have 3 brothers and a sister. Going in and out of foster homes was very difficult. But I look back now and realize it only brought all of us closer. We are all VERY close. Even to this day. My Grandmother eventually raised us from the time I was 12 and on. She is the one and only person on this earth that I consider a role model. She instilled love, forgiveness, and compassion in all of us kids. The sweetest woman ever. She made me, ME. She didn’t have to raise us, but she did. She is the greatest person I’ve ever known. Even now, in her 80’s, she will call me and tell me a story I’ve heard a hundred times, and I STILL get something out of it. In my eyes, she is the greatest teacher of love ever to walk this earth.

I was very successful at a young age, and I’ve always been driven to be the best at everything. So when I started my company, Alarm Security, I knew it would never fail. No matter what, I wouldn’t allow it. I’ve always been told that I was gifted with words and that I had a great work ethic. I’ve done things that most people would give up on because it was just too difficult. It’s been a long time coming, but my company has peaked is THE STANDARD for security in our area. People know us and love us. And ask for us by name.

We secure thousands of homes and businesses from harm, every day. 24-hours a day.
As the years have gone by and I’ve advertised, my wife told me, “You need to start an Alarm Security Facebook Page.” I looked at her funny and said, “Why?”. She went on to tell me it’s easy to start one and a lot of companies are doing it. This was summer of 2009. So, I did. I didn’t know what to post except security facts and specials we were having. I got some response, but not much. So I spent money on FB ads. Eh…didn’t really do much. Then one day, I had a phonebook advertiser ask me. “What makes you different than other alarm companies?” So, I proceeded to say this and that, like a sales person would do. Then the lady said. “No, what makes you stand apart? From everyone else.” My answer was, “Me.”. She said, “That’s a good answer.” So at that point, I decided to brand my company with ‘ME’.
It was weird at first, putting my face out there. On everything. But it worked. People started to see how much I cared about them, as a person. People got to know me, then my company. And that’s how it should be.

So, back to Alarm Security’s FB page. I decided to stop pushing my products and services. I wanted to ‘give back’. I wanted to make someone’s day. Now, I want to point out that Facebook has revolutionized advertising as we know it. There is no other tool, as a business owner, that you can connect with so many people on a personal level ALL AT THE SAME TIME. By me branding “Alarm Security” with “Matt McMillen” and my personality and values, Facebook was and is that final ingredient to bring all of this together. I’ve done MANY contest giveaways. And those contests usually require the person posting a comment to say something very personal in order to be eligible to win. It started out small. Not many people would post something SO personal, just to win. But as time went on and Alarm Security’s FB page became a place of love and sharing. Now, thousands of people tell their most intimate stories. Stories about love, friendship, kids, family, heartache.

One of those stories in particular was the story of Donna Sweet and her boy Joshua. I had a contest for an iPad 2. I asked, “If you won Alarm Security’s iPad 2 and had to give it away, who would you give it to and why?” Oh my God did the comments pour in! It went nuts with hundreds of comments. The comment with the most likes would win. I got MANY inbox messages both good and bad. The good, I thanked. The bad, I sternly said, “This page is not for you. We are about love. Go somewhere else”. In the end, a woman by the name of Kristin Hale won by just a few votes over Donna. Kristen wanted the iPad 2 for her daughter. Donna, for Joshua. Joshua has a disorder called Angelman’s Syndrome. And in Donna’s post, she very sweetly let us know how beneficial it would be for him, his development and communication skills. Bless Kristin’s heart, she was getting hate mail telling her she didn’t deserve to win because Joshua’s story was worse. Bottom line, KRISTIN DID DESERVE TO WIN. And won fair and square. When I talked to her after she won, she was upset. I assured her that I was glad she won and I hope she enjoys the new iPad 2.

Donna’s story touched me as well. And she was SO close to winning. I really felt compasion for her. So I gave her an iPad 2 as well. The amount of thanks that she has shown to me has been nothing short of amazing. I’m touched by the articles she's had printed in the paper about me and all of the publicity she has given Alarm Security. It feels good to help. Donna has shown an extreme amount of gratitude. And I’m thankful that she and her son Joshua are getting a great benefit out of one of my contest winnings. When it all comes down to it, life is about people. Listening to people. Forgiving people. Thanking people. Loving people. If what I’m doing is making a difference in people’s lives, then I’m honored and I’m proud. I hope to inspire all of my friends on Alarm Security’s Facebook page to live life like it should be lived. With love."


http://www.alarmsecurityllc.com/ : Check out Matt's company here. He is a shining example of protecting and helping others, and God bless him, his family, the Sweet's, and all of their collective dreams, which are so intertwined with beauty.

Rett Syndrome: A Story of Love and Courage From a Great Mother

This blog is dedicated to my son, Grant Robert Simard, who has been the best son and brother that anyone could ever hope for.  Miss Ashley B. and I are very proud of you and we love you so much. 

Rett Syndrome is a neurological disorder, occurring most often in girls. Typically, your child will develop normally, and then between six to eighteen months of age will regress, losing skills that have been acquired.   Rett Syndrome robs your child of the ability to speak, to walk, and to use her hands.  With Rett Syndrome your daughter may suffer from seizures, scoliosis, and Long QT Syndrome.  Breathing abnormalities can be found in girls with Rett Syndrome. 

It seems like Rett Syndrome has been a part of my life as long as I can remember.  I have distant memories of what life was like before Rett Syndrome and who I was and it is as though that is another person, a stranger that I do not know.  The hopes and dreams of what it will be like to be a parent can sometimes turn out to be just that; hopes and dreams.  Hopes and dreams that can never be fulfilled regardless of how much you want them and how much effort you put into making them happen.  Expectations, that at some point you realize were never meant to be.

For me, having children was really all that I ever dreamed about.  A chance to make up for the not so great childhood I had, and care for my children the way children should be cared for.  That fall night, 24 years ago, when I found out that I was expecting my first child was the highlight of my life.  I have never experienced that feeling since then and sometimes over the years when I have thought of that night, I cringe at how naïve I was not knowing what was in store for us.  Not knowing that fate was going to take me to places that I did not want to go and that I never thought possible. 

Miss Ashley Bernadette was born on June 18, 1988.  She was beautiful and perfect in every way.  At just a few months old, she made great eye contact and people used to comment on how social she was. She loved the camera and would always smile during pictures.  Although Miss Ashley B. was quite social even at an early age, she would have uncontrollable periods of screaming. The screaming could last for hours and there was nothing that I could do to console my daughter.  I felt so helpless.  I started taking her to the pediatrician on a weekly basis, begging for him to help my daughter, who seemed to be in some sort of pain. The pediatrician told me there was nothing wrong with my daughter and that maybe I should take some parenting classes.  I was devastated. 

As the months went on Miss Ashley B. would continue to have times of either extreme happiness or extreme agitation and although she seemed to be developing normal in many ways, she was still not walking at fifteen months of age.  We went to a specialist and were told that it was just taking her longer to learn to walk.  At sixteen months of age she started to walk and was still very social. When we went back to the specialist he said she was doing great and right where she should be developmentally.  But between the ages of sixteen months and eighteen months, something happened to my daughter.  I don’t know where she went, but she left me.  She was still with me physically but she would no longer look at me.  If I sat next to her, she would get up  and move.  She started rocking and humming.  She was in another world, a world so far away, there was no way to reach her. 

By this time I was expecting my second child and I was exhausted and terrified knowing something was wrong with my daughter.  She never slept and would scream and hit her face  for hours and hours on end.  We went back to the specialist when Miss Ashley B. was twenty two months of age.  And what we heard that day, the worst day of my life, was that my daughter was “developmentally delayed and would never be able to be on her own or take care of herself.”  That day, April 20, 1990, it was pouring rain.  I was seven months pregnant and I remember taking my daughter home that day and crying for days.  I did not understand what had happened and I could not even look at her.  My daughter was gone and she would never return.  I was left with this child whom I did not know. 

As the months went by, although I could not accept the fact that my daughter was disabled, I did learn to love this new daughter more than I ever could have imagined possible.   My son, Grant, was born.  A sweet, calm, beautiful baby, who had already experienced an emotional roller coaster before he was even born.  Although loved more than life itself, he would unfortunately take a back seat his entire childhood to his sister with so many needs.  Miss Ashley B. was continuously losing skills, one by one.  She was so frustrated not knowing why she could one day be able to do something and the next day she couldn’t.  Slowly she lost all of her speech. Slowly she lost her ability to use her hands.  And slowly she would continue to lose her mobility that at one time many years earlier, had been such a victory for us. I was very focused on finding a name for this mysterious disability that had taken my daughter from me, and so the search began.  Rett Syndrome was something that was mentioned when Miss Ashley B. was first diagnosed with a disability, but every physician and every hospital that I brought her to, ruled out Rett Syndrome.  From the moment I first heard the words Rett Syndrome and read about it, I knew that is what my daughter had.  And finally when Miss Ashley B. was seven years old, she was diagnosed at Kennedy Krieger Institute in Baltimore, Maryland by Dr. Naidu as having Rett Syndrome.  It was bitter sweet.  I had been trying to convince the physicians for all of these years that my daughter had Rett Syndrome but then when a physician finally agreed with me, I wished more than anything that it wasn’t true.  And the grieving began all over again.  Grieving because by this time, I knew what Rett Syndrome would have in store for my precious daughter. 

At nine years old, and weighing only 36 lbs my daughter had to have a feeding tube surgically  placed in her stomach. Seeing your beautiful frail little girl hooked up to all of the machines in the hospital was so scary.  After the surgery, she could still walk but she had to be stood up as she could no longer get into a standing position.  She continued to walk until she was eleven years old and then had to start using a wheelchair. The wheelchair was needed all of the time but for transferring, Miss Ashley B. could still stand briefly. At thirteen years of age, Miss Ashley B. started having non-stop seizures and had to put on seizure medication.  She had developed kyphosis and scoliosis and her spine was becoming increasingly curved.  She also developed Long QT Syndrome, which is a dangerous irregular heartbeat that can cause sudden death. Although she does still have screaming episodes, they have certainly decreased.  And just this past year, after having yearly xrays on her spine, I was told that spinal surgery was necessary.  Rods needed to be placed in my daughter’s back to help keep her spine straight. 

We were to be in the hospital for seven to ten days.  As it turned out, Miss Ashley B.’s lungs became compromised and she was in the hospital for eight weeks on the ventilator and having to have a tracheotomy.  I almost lost her several times during those eight weeks. Since the surgery, she can no longer stand briefly during transfers and I have to use a hoyer lift for all of her transfers. She can also no longer roll over and has to be turned every few hours for comfort and to prevent pressure sores.  I almost lost her several times during those eight weeks.  But she fought hard and she is still with me.  I have never met a stronger person than her.  So frail but yet so strong.

Having a child with a disability is something that cannot be understood unless you are living it.  It involves countless school meetings, and learning to advocate and fight for services that your child needs.  It involves scheduling your life around doctor appointments and never being able to get proper sleep.  It involves worrying about who will take care of your child should something happen to you. It involves not being able to spend as much time with your other children and struggling to somehow show them that you love them just as much and that they are as important as your child with special needs.   It is financially and emotionally draining.  It involves everything taking twice as long to do.  It involves having to have a respite worker with your child just to run a quick errand.  It involves planning every aspect of your life around your child’s schedule.  And not just during their childhood, but forever.  It involves seeing your child discriminated against at times. It involves your child, after finishing school, to just sit home all day because there isn’t any type of day program in your area.   It involves seeing other children doing things that you only dream about your child doing.  It involves letting go of all of the hopes and dreams that you once had so many years ago.   It involves seeing your child suffer mentally and physically on a daily basis.

But………………….it also involves learning to love unconditionally.  It involves learning to appreciate the small things that so many people take for granted.  It involves digging deep within yourself to learn to accept what is and not what you thought should have been.  It involves rejoicing seeing a little smile on your child’s face and celebrating every milestone, regardless of the size.  It involves exploring who you are and learning who you are.  It involves finding strength when you feel so weak.  It involves being able to steal hugs from your child at any time.  It involves having a best friend for life and having someone who truly loves you and appreciates everything you do.  It involves……………………JUST BEING.

**Stop Seizures Now Blog: With special thanks to mom Lisa, who is an incredible lady, that we should all be proud of. She does not understanding the meaning of quit, rather doing. Her son is a good man of fine character, and Ashley is a young lady whom deserves our respect and compassion. Way to go Lisa!!! You have an excellent family, and have made so many more aware of this condition, and the challenges and rewards of such a diagnosis.

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."