Tommy and Balloons

I miss my son Tommy, who died from a seizure in 2009. Today I was mowing the grass, and thought about him at Dulles Airport, with a balloon in his hand. Honestly, I have no idea of why this memory popped up, but I remember this day in the summer of that year. Tommy was five, and we were at the airport with my wife, waiting for her mother to walk through the international arrivals area after a long flight. There was a lot of downtime, and we were sitting in those horrible chairs, that seem to be the same in no matter what airport you are at. They must be "prison industry" type of seats, because your back always hurts, even if you are in them for a matter of minutes.

Walking around I saw a black balloon, with a bright yellow smiley face on it. This balloon was outrageously priced at $5, but I purchased it for Tommy. I knew he liked balloons, but was not aware on this particular day, how much amusement this one would cause. As soon as I brought it over for Tommy, he grabbed the string, and its a good thing the seal kept the helium inside. He kept bringing it down to him, and just howling with laughter. The arrivals section was already noisy, but on this day, the decibel count was a little higher than usual. Yet it was also more cheerful, as he laughed so heartily, and generated smiles among us and others close by. He somehow managed to lick some of the happy face off of the balloon, and just kept laughing, and laughing, and laughing. As I type this, even though there has been profound sadness, this memory is a happy one.

Tommy teaches us several lessons with this balloon. It is to be happy, and enjoy the simple things in life. People around you will be more cheerful, if you are. This is a good, infectious spirit that we should try to generate if possible. I will be back at Dulles Airport this week, to drop my mother-in-law off, and shall be in that same arrival area later in May. Its probably going to be painful, yet I hope to see that same person selling the happy face balloons. If they are there, I'm purchasing another one, and giving it to a child, or perhaps Tommy's younger brother when I get home. You are missed Tommy, but your lesson of happiness lives on, and by the grace of God a cure for seizures will be found. Keep playing with those balloons in Heaven, while laughing and smiling.

What's It Like to Have a Seizure? Two Kind Souls Share This Experience

It is deeply touching, to have heard from two folks, who have experienced epilepsy in their lifetimes. They are brave, and my heart goes out to Eric and Fionnuala, for their kindness to help people understand what it is like. Millions of people worldwide are affected by epilepsy, and research institutions like the Vanderbilt University Kennedy Center, are working around the clock to find a cure. May God provide them the guidance and the road necessary, to make this discovery, that so many are waiting upon. Improvements have been made through medicine, devices such as VNS implants, and other advances. Yet until a cure is found, there should be no relaxing, as those who suffer from seizures, and those who love them, are deeply affected.

The past few weeks, both Eric and Fionnuala have been kind enough to have shared what it is like, to have seizures. After reading their stories, and also I hope by being touched by their willingness to describe these painful events, I hope you'll support the Vanderbilt Kennedy Center in their efforts. This is not easy reading material, nor was it without pain for them to describe what epilepsy has brought to their lives. God bless you both for being so open. To those who deal with seizures, we will find a cure. We are on the right path, and this battle is going to be fought with love, rather than anger, courage rather than fear. These two folks embody both love and courage, and here is how they describe what goes on while having seizures.

Fionnuala described, "when coming to, not knowing anyone." This would include folks she's been around for years, and has deep love for, such as her husband. In her words, "I don't know where I am, I'm scared, and I feel lost." She sometimes hits whoever is close to her, because she's frightened. She can't move. Her descriptions of "legs being weak and not speaking well," are heartwrenching, and apparently she speaks in jumbled sentences. After these seizures she sleeps for twenty four hours, and then she is okay for the most part. However, a full recovery usually takes a couple of days.

Eric talks in bold language as well, to describe these experiences. He has dealt with petit mal and grand mal seizures, and felt "extremely tired and weak" after them. This was especially true, after the grand mals, because every muscle in his body would be used. These would include muscles that normally don't, and he said "I had to fight to say the right thing, to do the right thing." During his most severe of seizures, he would be able to see and hear everything going on around him. He even sees "how people are reacting," so this is remembered after the seizures, which would knock him down for long periods of time. For two young people, this is troubling, and for our children even more so.

I would like to personally thank Eric and Fionnuala for this courage, to describe events that are painful, in the hope that it will help someone else. Tony Dungy, who was an NFL coach and now writes book, says something so true about what they have done here. That is "your life is of significance, if you have served your fellow human beings." They have done that here, as so many parents and caregivers of those with seizures, may now have a better understanding of what is going on during seizure activity. God bless both of these kind folks, for letting people know what it is like firsthand. Many who have children who cannot verbalize what it is like, now have more knowledge of seizures. Thanks to both of them for helping so many, and may we find a cure for this menace immediately.

May 21st 2011: The Angelman Syndrome Foundation Walkathon

As a good many folks are aware, the Angelman Syndrome Foundation, has a walk every year. On May 21st 2011, folks from across the United States, and hopefully some international locales, will come together and join forces. I will be without my son Tommy for the second year, as he passed away from a seizure related to this condition. Others share the same fate, and my heart goes out to them. While my primary goal is to get rid of seizures once and for all, no matter what condition is behind this menace, it is important to raise awareness of Angelman Syndrome. The Foundation is working hard to do this, along with developing new techniques to increase the chances for developmental milestones, and also for seizure research.

The ASF has the highest possible rating from Charity Navigator, and attending one of these walks, is an experience you will not forget. I'll never forget any of them, including the one after learning of Tommy's diagnosis. I was heartbroken, crying for a good part of the day, yet I also became more hopeful. Its so comforting to know that you are not alone, and that other families are going through a similar challenge. Last year's was especially difficult. I did not want to go, as Tommy had passed away only six months earlier, and the pain was so great. Yet I am happy that I went, along with my family, as we saw many friends and folks that we consider to also be "family." Many angels were in attendance, and seeing them walk across that finish line, was like seeing my Tommy accomplish it. There were more tears of joy than pain, and I am excited about this years one in Columbia, MD for us D.C. and Baltimore folks.

Check out the link at http://www.angelman.org/walk/. Watch the video, and decide for yourself, but I strongly recommend anyone going to see what "love in action" is all about. It is going to take a concerted effort to destroy seizures, and while Vanderbilt University's Kennedy Center and other institutions are taking the lead in research, the ASF is committed to these as well. Some of the money raised will go to these researchers, who are working day and night to find that cure, that all of us seek. It is too late for my Tommy, as it is for other parents of Angels who've had the same heartbreak. Yet, we must walk, and keep our heads held high. Through this walk and other efforts, we will destroy seizures, by wiping them off the face of the earth with our courage, commitment, and love for one another.

What Would a Cure For Seizures Be Like? Parents Explain

Recently a wonderful group of parents, described what it would be like, if a cure for seizures was found. Seizures cause so much pain for those who have epilepsy related conditions, and to those who love them. As my son went to God far too early due to seizures, and I am not alone on this, seizures have had a profound affect on my heart. Each and everyday I think about how my son would be almost seven years old right now, and I sometimes cry when I see a boy who looks just like him. When Tommy was alive I felt so powerless, as he seized up, and the way I can best describe it was I felt like a complete failure of a parent. How could I not stop him from seizing up, and ultimately losing his life due to this menace? If you are reading this, focus on this statement from a kind Mom, who had to go through the same ordeal, with her nearly five year old daughter.

"She would still be alive. I would be holding her in my arms, instead of staring at her urn." A five year old girl, didn't have a chance to live out her life, due to these seizures. Now you have a Mom, Dad, and loved ones who miss her so much, and the closest they will get to their daughter for now, is an urn. That is unacceptable, unfair, and a cruel jolt against the soul of good people. While we all do die, it is simply harsh and beyond comprehension, for their little girl to be taken away by these seizures, which needed a cure well past yesterday. Yet, parents wait, as they do not want to see their child suffer the same fate. If you can help Vanderbilt University's Kennedy Center Angelman Seizure Project, you can be on the right side of history, and that is to make sure that these tragedies simply do not occur again.

My thoughts and prayers are often with this family, along with others who battle seizures everyday. Their sleep deprivation and constant stress, is very much real, and seizures affect a lot more people than we often want to admit. The same can be said for what seizures do, they are a killer, and not just a condition that is "mitigated by medication." Here are what parents have to say about seizures, in their own words. Take them to heart, remember them, and by all means do everything you can to help these folks find a cure. This could easily be your child, because as we are all related in one way or the other, its time we stand up as a family to make seizures a "nightmare of the past."

The parents for this project, want you to know how they feel. These are their words, and decide for yourself, if their love and pain is worthy of your time. These are responses to the question "What would a cure for seizures mean for you?". They are as follows- "Real life, no more living in constant fear and on pins and needles." "Freedom from seizure medicines, convulsions, and more learning possibilities could occur." "Gains and progress wouldn't be loss with seizures, my child would not miss out on fun activities that life has to offer, less fear and worry, along with less crying for him-this would be more valuable than a million dollars." "Peace." "Quiet." "Not worrying about seizure activity." "Freedom for my son, no need for medications or fear." "No more progress lost, our hearts are always being ripped out." "Freedom from anxiety and stress." "No one else can help my child, so I can't just leave my loved one with anyone else." "No more facial twitching, shivering, better hand control, no headaches, no near fatal encounters, or debilitating effects." "Significant reduction in stress, no worrying about the school calling home, not worrying about carrying oxygen and diastat. Seizures are a bomb that shatter lives."

These are their words, that reflect their pain. The amount of that fills up a cup and then some. Wouldn't it be so great to ease their pain, to alleviate their stress, and allow them and their children to live a life that's filled with more happiness instead of dread? It is too late for many of our children. No parent should have to stare at their little ones urn, or have to visit their grave at a cemetery, because of these seizures. While life is not fair, there's nothing more terrible than seeing your child pass away in your eyes due to epilepsy. For those who live with the constant fear, it is so difficult, to find enjoyment in life for both child and parents alike. The lack of sleep and decline in happiness and productivity, that adds up to a lot. Therefore, if you can, by the grace of God, please help these parents live a little bit more, along with their children whom they love so much.

Maryland Recreation and Parks Association: Tommy Ross Memorial Fund

A few days ago, I had the distinctive honor, of seeing my father celebrate his retirement, and do something that's going to continue his long legacy of helping others. He could have received all kinds of gifts after retiring from the Maryland Recreation and Parks Association, but decided to present this gift, to people who will benefit from this unselfish generosity. That would be the Tommy Ross Memorial Fund, that's set up through this organization, and it is going to help people with special needs, get extra opportunities that may have not been previously available for them. Parents of those with special needs know of the great expense, that already comes out of their pockets, to care for their beloved child. Now, they might have a chance to see their son or daughter, get to participate in recreational opportunities, that will most certainly put a smile on faces all the way around.

Its hard to believe its about a year and a half since my son Tommy, who's named after my father, passed away from a seizure related to his Angelman Syndrome condition. Our whole family misses him dearly, and yet while there is pain, there's also a reminder of what is really important in life. Tommy taught us a lot, and his most important lessons, were service above self, and to laugh and smile as much as possible. My father gave a beautiful presentation showing pictures of Tommy, a lot of them participating in a recreational activity, such as swimming. The crowd of several hundred folks, got to see that smile, which is more than enough proof of the importance of "parks and rec". Although parks today are more inclusive than ever, such as Clementjori Park in Mclean, VA, there's still much to be done to guarantee that people of all abilities will be able to enjoy them.

I would like to thank my father, mother, brother, aunt, and all of those whom made a donation to the Tommy Ross Memorial Fund. A lot of kind folks at MRPA have donated to this worthy cause, and I wish that I could somehow adequately express what it means. There is a way that you will see this, as while I do thank you and tip my hat to you, its going to be when you see a youth with special needs get to participate in an activity. That's going to be pure proof of what your generosity means. God bless you all, and to my father, congrats on retiring. Now you can dress funny, and fit in on the golf course :). For more information, be sure to check out the MRPA at http://www.mrpanet.org/.

Save a Child's Life-Help Vanderbilt Kennedy Center's Angelman Seizure Project

It is so painful to lose a child. There's no words that can be printed to adequately describe such a tear in your soul, other than to tell you about my experience. Others have gone through this, and it is my hope that we will not lose another child with Angelman Syndrome, or any other condition that has epilepsy as part of it. Holding your lifeless child in your arms is so painful, and watching a crash team stop CPR while you hold your boys hands, is like dying yourself but far, far worse. I'll never be able to get that image of my boys lifeless glance out of my conscience, nor will I ever forget that howling of anger that emanated from my very being that terrible night in November of 2009.

Right now, a parent is with their child enroute to a hospital, as they are seizing up. Another parent is at a medical center, as another crash team of doctors and nurses is trying to get the seizures under control. A third parent is at home, having no choice but to insert medicine up their child's rear, to try to get their face to stop turning blue from a lack of oxygen. This is the reality of the situation, and it is too late for my son, and others who've been in the same lonely and full of water from tears boat. I wish that this was not going on right now, but it is. It has yesterday, it is now, and it will tomorrow, unless we step up to put a stop to this.

The Vanderbilt Kennedy Center Angelman Seizure Project is our best hope. Their research team is working around the clock, to make sure that what happened to my son, and other parents little ones never happens again. What does that mean to you? I am nothing more than a mere, simple man, who will never have a lot of money or be famous. That's fine with me, as I do not need anything more than the love of my family, and a roof over my head. Yet, I donate some money to Vanderbilt Kennedy Center's Angelman Seizure Project. It does not have to be a huge amount, but wouldn't you love to be a part of something so special,as to save a child's life? There's no price on that, whether its a donation of $1 or $1,000,000. They are so close to victory, and it is up to us to cross that finish line.

Please, if you can, consider helping the Vanderbilt Kennedy Center Angelman Seizure Research Project. They are at http://kc.vanderbilt.edu/site/giving/default.aspx. You can donate online, and if you mark it as "Angelman Seizure" your kindness will go to help those in the greatest of need. Spread the word on this fine organization, that is a part of Vanderbilt University in Tennessee. If you saw Darius Rucker's "Music From the Heart," on the Country Music Awards this is the same place. Its time for parents of angels, children, to stop having to worry about "is this the time?" There should be no more children passing away at such young ages, from a seizure that must have a cure. This is the best hope, and every bit helps. Thank you for your compassion, kindness, and reading of this plea for a cure. Its up to you and me, to make this happen.

Darius Rucker-CMA's-Vanderbilt University Kennedy Center "Music From the Heart"

Darius Rucker has a lot of talent, that has never been questioned. From his days with Hootie and the Blowfish to his solo career, there's no denying that his voice is incredible, and his song writing talents are nothing short of astonishing. Yet the other night, at the Country Music Awards, he "outdid himself". He sang a song called "Music From the Heart", along with folks who have special needs, that have been a part of Vanderbilt University's Kennedy Center. You can catch it on youtube or any other site by entering in those keywords, and it will blow you away. I was deeply moved by Darius's passion, and just the amount of love that was on that stage, and in the audience of the crowd watching this performance.

Vanderbilt's Kennedy Center Angelman Project is where the cure for seizures, is going to take place. So that angels, and all of those with special needs who suffer from seizures, will not have to worry about them anymore. They will be able to be a part of music, which as all people who know those with Angelman Syndrome do, music is something that needs no translation. My son Tommy is with God now, due to a seizure, but I'll never forget how his eyes lit up, and a smile went across his face, when I would turn up the stereo speakers in the car. He would just have this shine about him, and it didn't matter what genre of music it was, he'd just have such a grin on his face that made the day's worries just slip away.

I would like to personally thank Darius Rucker, and the performers from Vanderbilt's Kennedy Center, who helped him sing "Music From the Heart." There were tears watching this performance, but they were happy ones. It meant so much, and just to see the love that was on that stage, is proof of a loving God. If you haven't seen this, by all means, just take a few minutes of your time to witness this momentous occasion. Its something you'll never forget, and it is a testament to the fine work being done by Vanderbilt's Kennedy Center. Their work towards helping those with special needs succeed is incredible, and I am especially thankful to the Angelman Seizure Team. They are doing everything humanly possible to find a cure, and have given so much love to finding one. God bless them for their kindness, beccause their work in finding this cure, is music to my heart, along with the heartbeats of so many.

Patriots Tattoo in Fairfax, VA: Thanks to Artist Ty and the Ink That is Proof of Forever

This past week I finally got the tattoo, that I had thought about getting for some time. My son Tommy, age five, passed away from an Angelman Syndrome related seizure in November of 2009. The journey has been so full of differing emotions, ranging from a kick to the gut, to more compassion for other people. There have been sharp twists and turns, sleepless nights, questions of faith, and anger along with hostility that I wouldn't wish upon anyone. Yet the anger subsided, the hostility dissipated, and I am resigned that there's so much beyond my control. I am no longer angry at God, but I do intend on until my very last breath upon this Earth, fighting seizures until we have a cure.

There are so many people that have to contend with seizures.Its not just those with Angelman's, as those with Rett Syndrome and other conditions have to as well. Regardless of the cause of epilepsy, they must be stopped. The pain of watching a loved one writhing on the floor, gagging for breath, or ultimately dying from these terrible things has got to be stopped. It does not matter what the pigment of your skin is, your religion, or anything else, as seizures do not care. Nor should we, except when it comes to having love for those who fight these, and supporting those who regularly support someone with them. As I sat in the tattoo chair at Patriots in Fairfax, VA, I thought a lot about what getting this ink on my right bicep meant. Its in a spot that you cannot miss, and anyone who asks me about it, I tell them Tommy's story, about meeting Brother Bill who reminded me of the sanctity of resillience, and the journey of faith that has taken place.

Ty is a wonderful artist, who's kindness was greatly appreciated. He is now aware of the Vanderbilt Kennedy Center, and I cannot recommend him enough. A very nice person, who did a fine job in making sure that the angel on my arm would be a testament of things that have happened, and a future that will be without seizures. A parent's love is forever, and even though I know Tommy is with God, this tattoo is a reminder of the life lesson's he taught me are. I often see a boy who looks like him, and just cannot stop crying. Yet at the same time, I am reminded that he made me a better person than I was. Am I perfect? Nope, but I do have a lot more patience and kindness than before. We are still a work in progress, and much like this tattoo, I hope to be able to make enough of a difference, that my time on Earth remaining shall bear fruit towards ending seizures forever.