A Spiritual Experience

**As many of you know I lost my son Tommy at five years of age, to a seizure caused by his Angelman Syndrome Condition. He was unresponsive in his bed after naptime on November 4th 2009, and I can't tell you how painful this experience has been. Yet I wanted to share something with the Epinions community, because you've been so kind to our family during this challenging time. I have a lot of questions about religion, but I do believe in a higher power. Sometimes I wish my faith could be stronger, as I sometimes am skeptical by nature, but yesterday I think I was touched by the hand of God in a profound way. Here's excerpts of a letter to my minister about what happened. And again, thank you to all who've been so supportive. This experience yesterday has just totally blown me away.I cannot convey in words how helpful you've both been to us during this difficult time, and today marks the two month anniversary of Tommy's untimely passing. The past few months have been a whole series of challenges, and while we will never get over what happened, we will most certainly get through it. The "parents worst nightmare" is an appropriate term for the death of a child, and I was touched by reading Abe Pollin's obituary where he described the loss of two of his children. He said "Not a day goes by that I don't think about them." And I also think of Jim Moss, a great man who used to teach me to ride horses, and I've been in touch with his son. Jim sadly passed away from Cancer a few years ago, and he was a real character. Yet his approach to life of "Once you get kicked off a horse, don't let the fear overcome you, but hop back on the saddle and ride." I hope you'll understand that I'm usually very private about my religious beliefs, as I do have doubts about what the Bible says. For instance, I don't like the treatment of gays in Leviticus if I can remember correctly, and I wonder if however many writers wrote the book changed it to appease leaders from years ago, or emphasizing their own personal views. My core belief is all religions, whether Christian, Jewish, Islamic, Buddhist, or other branches all express their love of God in a different manner. One should never turn their back on those of other faiths, as a co-worker of mine believes, "who's a supposedly born again Christian." He told me I'd go to Hell if I acknowledged other religions beliefs, and I told him to kindly "send me a glass of ice water." Yesterday, was the the third time in my life, that I cried tears of joy. The first two were Tommy's and Alexander's births, but yesterdays was maybe even more profound. I was at work, and asking God "If you really are there, and you hear my pain, send me a direct message." It was a rough morning, cold, and I was a bit grumpy about handling service calls that were building up. I got dispatched to a call from a middle school that I thought was previously taken care of, and to say the least, a bit annoyed about having to drive out to Centreville's Liberty Middle School. I waved to the private company security officer who does the parking detail for the Baptist Church which has a conregation there. I went to check pipes that had burst the night before, and found out that additional repairs were needed. Since it was so blustery cold, I figured I walk around to the front of the building, and just wave to the officer out of professional courtesy, do the necessary paperwork, call our dispatcher, and have the necessary maintenance folks respond. Yet something compelled me, that I cannot in simple terms explain, to walk over this older gentleman doing security for the church. The wind kicked up and I wasn't dressed appropriately enough for it, but yet I walked to him and started to shoot the breeze. He had a former career in military intelligence, and we had a "shop talk " conversation about the nonsense we've dealt with. He talked about his upbringing in southern Virginia, and how when he was 14, his father left their entire family. His poor mother had to feed all of his brothers and sisters, and he had to take a role in helping out. This was back in the Jim Crow Days, and yet he told me that a white man who owned property nearby, helped out the family. Then he said to me "What year did you graduate from High School?" I said "1994." He said then "you've probably heard about my son at Herndon High School in 1983." I told him no, and he explained that his son had a congenital heart defect, and died on the football field. How devastated he was, but he realized what life is is all about the human spirit of resillience." I told him about Tommy, and we both hugged each other in the parking lot. It must have been a strange sight to see two big guys in uniform hugging and crying in the parking lot", but I think this is one case where a prayer was heard and answered. As I left for another call, I cried tears of joy that went through every bone in my body. The rest of the day was so busy, and it didn't bother me at all, even though I usually get quite irritated when responding to call to call.

Laughter is Good for the Soul

Life is not necessarily fair, as I've learned first hand on several occasions. Why did my son Tommy have to be diagnosed with Angelman Syndrome? Why did he have seizures? Why as a family did we have to be burdened with constant doctors visits, paperwork that could fill up a forest? Why did he die? These are questions that I cannot answer with certainty, as I'm just a simple guy, who's trying to make a living to support his family. Yet what I have learned is that you have to take what life throws at you, and just do the best you can.

In the past month, I've lost my competitive edge. That's not necessarily a bad thing, as getting ahead at work and life really isn't that important. Hanging on is what is, and doing the best you can is what really matters. As human beings, we have a lot of potential for decency, but sometimes we are too hard on ourselves. In the past month, there's been a lot of reflection, and I often wonder, "Did I do everything I could have?" There's no way to do just that, and there's been a lot of kicking at my soul, as I examine the past five or six years. Do I wish that I would have not been as depressed about Tommy's diagnosis when I learned he had Angelman Syndrome? Of course! Yet going through the initial sadness before accepting what we had to deal with, is part of the human spirit, that has to go through the stages of acceptance.

The same thing goes for his passing. There have been many tears, with a lot of depression and anger mixed in. Yet, when I think about Tommy laughing, or pinching his belly like I used to do, it makes me laugh. We called him "Porky", since he was such a big boy, and had a belly on him for awhile after gaining weight as a sickly newborn. I think about him looking at Christmas lights, or going to the ocean with us, and it puts a smile upon my face. Life isn't necessarily about how long you live, but how well you enjoy it. That's what it boils down to, and why in the near future, there will be some positive aspects to it once again. Its taken some time to get a sense of humor back, but last night I laughed looking at my three month old boy. He's now smiling and laughing, and while his laughter isn't going to be as beautiful as Tommy's was, it will suffice. He is going to know all about his big brother, who's certainly keeping an eye on him now.

Grieving Parents: How To Handle This

There's nothing worse than being a parent who's lost a child, but that doesn't mean you should avoid them. A lot of us are uncomfortable with such a situation, as its not the "natural order" of life, and I pray that no one else has to go through this kind of tragedy. Tommy's passing was almost three weeks ago now, and it feels like a lifetime already. Time has slowed down, and while our heart's are heavy with pain, I can't say enough thank you's to all of the people who've been so supportive during this difficult time.


So what should you do if you know someone who's child passed away? The first order of business is to give them some time, as they are going to need it. The best ways to support grieving parents, is if you see them, say how sorry you are. Let them know that you are thinking about them, and praying for them during this terrible time. Send them a card with a heartfelt message. The cards we received during Tommy's leaving us, left us feeling comforted while in profound sadness. We knew we were loved, and that he was able to make a difference to people, which gave us strength. The folks who brought food to us, even though we didn't eat a lot of it, will never know how appreciative we were. There was a lot of weight loss in the past few weeks, but the food we were able to eat kept us sustained, and better able to handle Tommy's final arrangements.

Each person handles grief differently, but those two things helped us a lot, and continue to at this time. There's going to be explosive anger and sadness that can't be controlled if you are in a similar position as we've been, and please don't take it personally at all. There's going to be raw emotional reactions, as I cried in the middle of a grocery store, and a school. Let that person cry, and if they want a hug, give them one by all means. An embrace or pat on the back can mean a lot, and while it might not stop the crying, it lets the grieving parent understand that there are others that care about them, and feel sad for them. Grief has many forms, and the anger and sadness that I experienced almost crushed my spirit. But the loving arms of so many, helped me to carry on, and the fight to find a cure for Angelman Syndrome and devote money to seizure research will go on forever.

Thoughts about Tommy's Passing

To lose a child is a parent's worst nightmare, and there is no more accurate way of describing it than that. We aren't alone with this trauma, as many families across the globe have suffered from it. Yet what a priest said makes sense, which is "Your loved one is no longer in pain, but you are." How true that is, and when I look up in the sky in anguish, I realize that I am nothing. This is not a negative feeling whatsoever, but a comforting one, as I now know that I am nothing but a body of 75% water, and miniscule in comparison to our globe's total population. Think about it, isn't it a marvel to human resilience to think of all the people right now. Imagine your city, or state and all of those people, and then multiply it by the United States, or the entire world.

Who are we, and what does it matter what we think, when you realize how small you are compared to the rest of the globe, or our planet, and the solar systems known and unknown that envelop our existence. We are nothing but "dust in the wind" like the famous Kansas classic rock song talks about. Yet even with our status of being nothing, Tommy was able to achieve so much in his short life. Against all odds, he was able to convey more about the importance of enjoying each day, even though he wasn't able to say a word. He expressed what he wanted through facial gestures, and nothing more.

I look back at my thirty plus years, and think what have I accomplished compared to him? Sure doctors might say genetic defect, but I ponder now that Tommy was the closest thing to perfection. He never harmed a soul with his disparaging vocabulary or actions. How many of us can honestly say that, since by nature we are nothing but a bunch of imperfect souls who make countless mistakes on a daily basis. We sometimes regret saying something negative later on, and rarely apologize for it. The leaders of our countries are engaging in "politicking" rather than focusing on the issues of human suffering, while they enjoy gourmet meals and service fit for a king.

Tommy is dearly missed, but his inspiration will live on, and a cure for Angelman Syndrome must be found. All of us imperfect souls need to find a way, to get to this done. That is our mission in life to help others, and I've been amazed by the decency that I've seen from fellow imperfect human beings the past couple of weeks. We might be pieces of dust blowing in the wind, or a body that is nothing but water, but we need to follow our conscience. That is a higher calling that comes from our very souls, and we must face our imperfections, and remember how perfect those with special needs truly are. They are angels that live among us.

If you can Donate to Angelman Syndrome Foundation, Please Do

http://www.angelman.org/tommyross/

The link above is for Tommy's memorial fund, and I'm hoping if you can, you'll consider donating any amount to help find a cure for Angelman Syndrome, or to help with medical research on issues such as sleep assistance and seizure control. The Angelman Syndrome Foundation(ASF) is listed by charity navigator as among the best, and as someone who's been supported by them over the years, I can tell you firsthand that they do a lot for families. One of the hardest things after getting the diagnosis, is thinking that you are all alone with this. The Foundation goes out of its way to connect families, so that you can be a support network for each other, and has conferences to learn about all of the new devices that can help angels succeed in their lives.

Any donation is worthwhile, whether its $1, $5, or $10. It doesn't matter, because those dollars add up, and are a wonderful tribute to Tommy's constant fight to be the best he could. Thank you for all of the support, and even looking at the angelman website (http://www.angelman.org/) would be a fine way to spend just a couple of minutes. You'll be surprised what you can learn from an angel, because while they are born with numerous learning challenges, they are as close to perfection as humans can be.

Tommy Ross 7/21/04-11/04/2009

Tommy Ethan Ross was the best son that a father could ever have, and I wish he could still give me one of his famous hugs. He was always smiling and laughing, and even though he never spoke an actual word, he touched a lot of people in his five years. At just a few months old, he was diagnosed with Angelman Syndrome, which is a deletion of chromosome 15.(http://www.angelman.org) It was devastating news, and we learned that he was intellectually disabled, would have sleep disturbances, severe delays, and most likely seizures.

His seizures started at age 2, and led to him spending time at our hospital's Intensive Care Unit. Thankfully he was able to overcome these with Keppra medicine, along with Valium for emergency use. Tommy had three awesome years of schooling, and a lot of credit goes to Fairfax County Public Schools for believing in him, and giving him every opportunity to learn tasks such as eating and walking. A couple of months ago, Tommy learned how to walk in a pool, which was truly one of the most inspirational moments of my entire life. In the past weeks, he was making teriffic strides walking unassisted in our living room. He always had that smile, and even though he would fall down, he never gave up.

On 11/04/2009 Tommy passed away from seizure activity/cardiac arrest while taking a nap in the afternoon. It's so distressing to find your child like this, and that day is going to be firmly entrenched in my brainstem for the rest of my life. Yet I'm willing to live with that, because I know he's not suffering, and I'm truly blown away by how many people Tommy inspired. He made our family stronger, and while there are more than enough tears to start a small stream, there have been plenty of smiles and laughs as well. Tommy had the biggest family in the world, as while we were his parents, and he had devoted grandparents and wonderful uncles, he also had folks at the Angelman Syndrome Foundation, Church, Schools, and neighborhood residents rooting for him every step of the way.

Against all odds, Tommy was able to achieve more than the majority of us ever will. As I type this I miss him dearly, but would be willing to do it all over again, even with this ride ending the way it did. In the next couple of weeks, I hope to submit pieces on Angelman Syndrome, the need to improve research for seizure control, and how to deal with the loss of a child, or those who are going through a similar ordeal. I'm not the most religious person in the world, but I do like the phrase "the crosses we bear." How true that is, and I hope you never have to deal with this type of experience in your life. Yet with how vulnerable with are as humans, I hope you'll consider hugging your children, and telling them how much you love them.