I’m Just Operation Jack, Not Superman

This is probably the last thing I should write while I’m trying to recruit people to the 6th Annual Operation Jack Marathon, Half Marathon, 5K and Virtual Runs, especially since I haven’t written a blog post in more than a year. But man, I’m cracking. Bad.

First Picture
Me and Jack after I finished the first Operation Jack Marathon.

Operation Jack, since it’s an always-evolving thing, and I never know who’s coming or going or aware of the past, is my way of doing what I can to fight autism. I’m just a guy, a father of three, and Jack, my middle child, is a severely autistic 12-year-old. This morning, he had severe, self-injurious meltdowns. He’s barely verbal. In fact, just two nights ago, 12 years and three months (minus a day) after he was born, he called me “Daddy” for the first time ever. Heck of a milestone, but to say it’s been painfully tough raising him would be an understatement.

Back in the spring of 2009, when I was a seemingly-young 34 and he was a 5 ½-year-old and I was trying to find a purpose for the severe early-childhood difficulties he was going through, I came up with some crazy idea of running 60 full marathons in a year (2010) to raise money for an autism charity. That would be my way of contributing to the cause and doing my part. I felt like it was my obligation to try to do something to try to make the world better. Running was my gift I could use. Hopefully it would raise money and help kids. Jack’s suffering would thereby help other kids and he’d make a difference in this world. Life would get back to normal (whatever that is) in 2011.

That’s not how it worked, though. I did run 60 (actually 61) marathons in 2010. But we ended up creating something called the Operation Jack Marathon out of necessity at the end of the year. With six weeks of planning and recruiting, we registered 151 runners and had about 200 more participate virtually in 46 states across the country. People asked me to put it on again the next year and I figured, why not? I could continue to raise money for charity. That first year brought in about $88,000 total (due primarily to the 61-marathon stunt and the donations that came from people throughout the year). The race brought in maybe $40K the second year and I did a few other things, raising money to fight cancer and putting on a small race to benefit the families of mortally-wounded troops.

Life took over in 2012 and we relocated to Colorado, thanks in no small part to autism. I still worked to do what I could to raise money and put on events, adding a new race in Kansas City to go along with the primary race in Los Angeles. 2012 was the worst year of my life, completely because of autism, but Operation Jack gave me a positive outlet. In 2013 we relocated to Pennsylvania, 100 percent because of autism, and life continues to be a grind. But I keep doing what I can with Operation Jack. I added a race in Las Vegas, somebody in Pennsylvania found me and I help her put on an annual event and build a few teams to raise money for charities out here. I’ve built an annual team at a race in Maine to raise money for charities there.

I guess I need to clarify, just in case, that the Operation Jack Autism Foundation is a 501(c)3 public tax-exempt charity recognized by the IRS and all that kind of stuff, with no staff, no office, and the purpose is to raise money for autism-related charities and to help parents and those affected by autism to find a positive outlet. None of the money raised benefits me or my family directly or indirectly at all. It’s just a sacrifice we make to try to help others.

I’ll be very blunt, though. Despite what looks like a success on paper (I’d estimate more than $200K has been donated to charities over the years), I have no clue what I’m doing and I feel pretty incapable. I try, though. I want this to do well.

Oh, and the reason I mentioned that Operation Jack is a foundation is that I was just thinking about it in this perspective on my way to work this morning, but Operation Jack is also my super hero alter-ego. I’m Sam Felsenfeld by day. I’m Clark Kent, a web developer working for a very large company sitting in a cubicle writing code all day. That’s what puts the food on the table. I eat that food with my other two kids if I get home in time, then maybe play a game or something, and then when the kids go to bed, I become Operation Jack. I want to help. I want to do good. But I am so terrible at this.

My organization skills are terrible. I’m overwhelmed and I dread answering to what seems like a million people I’m letting down. I have some pretty complicated problems of my own I’m desperately trying to deal with. Depression, lack of motivation, fears of everybody being angry with me … you name it, it’s probably bothering me. My wife is worried about me, probably rightly so. I’m working on getting help, but I’m breaking down and falling apart. I don’t like who I am. I haven’t for years. I just want to crawl into a hole and disappear and I don’t really know why. I may be dwelling on it too much and making myself think this way. I don’t know.

Anyways, the reason I’m writing this, and again, I know it’s terrible to do so while I’m trying to reach people to support this event and this cause, but every year around this time, I start thinking, “I have to stop doing this. This has to be the end.” And those thoughts are really, really strong this year. I’m totally falling apart mentally. Although I just can’t imagine giving up my alter-ego, because once I do, it’s gone for good, and it’s become such a huge part of me.

But I just feel like being as real as I can. I like people to know who and what they’re supporting. I feel like it’s wrong to do anything else. No matter what, you absolutely are raising money for small autism-related charities in need by participating. But you’re also backing the efforts of an autism dad who’s trying to help, and I feel like you should know who that dad is.

I’m getting on a plane in Philly with my oldest son Benjamin on Christmas night and we’ll be in Los Angeles for the 6th Annual Operation Jack Marathon the next morning. I have no idea if it’s going to be the last one. I tell myself I don’t want it to be, because I enjoy being able to help, I like the positives that come from it all. But I don’t know if I can pick myself up and continue to do this. I upset myself a lot over this. I let others down with this. I just don’t know if I can go on. And I can’t just stand here with a phony happy face.

I’ve been starting to tell people this might be it, which I guess makes this no different than any other December. Except that inside, I feel a lot worse than I ever have before. So, I guess, just in case I don’t do my annual mind-change the day after the race, I want to sincerely thank everybody who has participated and supported what I’ve tried to do over the years. Words can’t really explain it, so I won’t even begin to try. But thank you.

I'm Paying For Race Entries! For Any Race!

So, I haven’t blogged a whole lot lately. Last week, life got the best of me as my paternal grandparents died within 22 hours of each other, first my grandpa and then my grandma. I wrote a blog about how it was the best love story ever. Check it out if you haven’t already!

Anyways, I have a few things for today, all good in their own way.

Danielle Sterling Gets to Race 4 Free

Danielle Sterling only had to raise $100 to get a free race entry courtesy of Operation Jack. She’s raising money for the Autism Society of Maine and as part of my Race 4 Free program, all she has to do is raise $100 for them and Operation Jack will cover her entry into the Maine Coast Marathon. The way I see it, if she doesn’t go above that $100, but she raises money that wouldn’t have been raised, then effectively she’s helping me pick an autism charity to donate money to.

However, she aimed for $500 just for the heck of it, kind of a pie-in-the-sky goal. A funny thing happened when she did that, though — she surpassed her goal in about a day! Now she’s well over $800 and is eyeing $1,000. Autism Society of Maine wins, she gets to race for free, and the way I see it, about $100 of Operation Jack money resulted in $1,000 being raised for an autism charity that needs the resources. Oh, and I’m sending tech shirts to her donors, too.

Danielle's fundraising page. Took her 10 minutes to set it up and another five minutes to earn a free race entry.
Danielle’s fundraising page. Took her 10 minutes to set it up and another five minutes to earn a free race entry.

It’s a win all the way around, and I have to say, I really enjoy being able to do little things like this.

Let me know if you want me to cover a race entry for you. $100, that’s all you have to raise, and I’ll send you a tech shirt to run in, too!

Best Start To A Eulogy Ever?

At my grandparents’ funeral last week, my uncle and my dad both spoke for about 5-10 minutes each. My grandparents had three sons, no daughters, and like my son Jack, their third son has autism. He’s 54, so I’ve been aware of autism my whole life — well before Jack was born. Originally, my uncle wasn’t going to speak. But in the middle of the service, he changed his mind and ran up to talk after my dad was done.

Everybody was smiling, eager to hear what he would say, how he would remember them. He can be a wildcard, but we all thought it was cool that he decided to go up there and say something. What he would say would was the intrigue of the day. I spoke to him the day before to see how he was doing, because he was very close to his parents. He was upset, but handling things fairly well. He has an amazing memory and I was interested in his perspective when he decided to speak during the funeral. The way he started, though, … wow …

I’m going to be brief. [pause] In 1968, …

We all smiled and kind of silently chuckled because we had no idea what brief meant to him. He actually ended up giving a great, heartfelt speech, which wasn’t too long and wasn’t too short.

My Super-Kind Co-Workers

When I finally got back to work Tuesday after five days out of the office, I wasn’t sure how many of my co-workers knew why I was gone. I work on a small team (about five of us) but there are probably 100+ people at my office and I interact with a fair amount of them. When I got in, one of my teammates handed me a card and I didn’t know if it was from him or what and I said thank you and that I’d open it later. He insisted that I open it right then, so I did, and I was surprised to see that about 30 of my co-workers signed it. I thought it was really nice of them.

But then on top of that, there was an envelope inside, and they all contributed towards a donation that ended up being $300, which they gave to Operation Jack. I’m actually going to donate it to the City of Hope, which is a cancer charity. My grandparents worked hard as volunteers for City of Hope for years and years and it took me about half a second to make that decision when I saw that the donation.

It was super nice of my co-workers to do that, though. I really appreciated it — super nice action on their part that they absolutely didn’t have to do. I figured a few people might come over and welcome me back, but to know that they collectively donated $300 to charity in my grandparents’ honor and memory? I felt really, really happy and grateful and was pretty speechless.

That’s all for today, have a great Wednesday![subscribe2]

The Best Love Story Ever

I have some things I wanted to blog about this week, but they’re going to have to wait — as you’ll see if you read this, life takes precedence.

Anybody who knows me or has followed Operation Jack over the years knows how much my grandparents mean to me. My mom’s parents died back in 1982 and 1983, but my dad’s parents have been around my whole life and I love them in a way that I can’t really describe with just one sentence.

My grandpa is probably the best man I’ve ever known. Truly, genuinely nice and a great person. He’s been an autism dad (my uncle has autism) since 1960 — back before folks like me had places to turn to for information. He was a pioneer, blazing a trail without a map. I learned a lot about autism from him as a kid and when we learned in 2006 that our son Jack is severely autistic, I was very familiar with that. My grandpa also loves people more sincerely than anybody I’ve ever met. At any gathering with his sons, grandchildren and great-grandchildren, he breaks down in tears and talks about how he feels like the luckiest guy in the world for being around his family.

One of my favorite pictures ever, me and my grandpa circa 1978.
One of my favorite pictures ever, me and my grandpa circa 1978.

He’s the stereotypical fun grandpa, always having fun, speaking in his silly Donald Duck voice, acting like he’s 12 (I’m the same way, I know where I get it from). Everybody says the same thing about him — he’s the nicest, gentlest person they’ve ever met, a truly good person.

He turned 90 last August and considering health issues he’s had in the past — a quintuple bypass in 1989, seizures in 1994, cancer in 2001, onset of Alzheimer’s about three or four years ago — every birthday he has is something we’re grateful for.

Unfortunately for me, I live in Pennsylvania and he’s in California, so I don’t get to see him as much as I did when he lived two miles from where I worked a couple of years ago. He went into the hospital a few weeks ago and when you’re 90, hospitals happen. I wasn’t alarmed, but after a little while, the reports I was getting weren’t going in the right direction.

My wife and kids with my grandparents last summer.
My wife and kids with my grandparents last summer.

I went to Chicago last weekend and I was checking up on him frequently because things were getting worse. On Sunday, the day I was scheduled to fly back to Philadelphia, I was trying to get as much information as possible because I was considering flying straight to California from there. After a lot of consulting with my dad, I decided to go home to Philly, hug my wife and kids and cry in my own home. I planned to spend the week at home and head out to California this coming Sunday or Monday and say goodbye to him.

Mid-day Monday, though, I got a call from my dad and he told me to just get on a plane, that my grandpa wasn’t going to be around for long. Coming out for a week would cover saying goodbye and the funeral. My flight was scheduled to land at John Wayne Airport in Orange County, California, at 11:55 a.m. Tuesday morning, which would have put me at the hospital by about 12:30 p.m. I woke up at 3:30 a.m. in Pennsylvania after getting just 3 1/2 hours of sleep and saw the text from my dad I didn’t want to see.

Very happy about the "Peaceful no pain." part.
Very happy about the “Peaceful no pain.” part.

I couldn’t believe it. I mean, I could, but he was really gone. The day I dreaded ever since I was about 10 and I realized how much I loved him and that people who are two generations older than you tend to die when you’re still young. I didn’t regret not going out straight from Chicago. I know that he wasn’t coherent and probably wouldn’t have known I was there. He would have squeezed my hand, which would have been nice, but that wasn’t the memory I needed. The memories I have — going to baseball games with him, having sleepovers at his house when I was a kid, his silly Donald Duck voice and willingness to do anything to entertain children, the way he so deeply loved his family — I have more than 39 years of those memories and I’m content with the decision I made to come home from Chicago. I’m glad it was peaceful, without pain, and that my dad, stepmom and brother were in there with him.

I headed to the airport at 4 a.m. and my 6:15 a.m. flight was delayed until 1 p.m. after we sat on the plane for an hour. I was dead tired and very sad, but glad that I at least wasn’t stressing about getting to the hospital on time. They re-routed my itinerary and I only had to spend six hours in the terminal.

I was checking with my dad to see how my grandma was doing. My grandparents were as close to each other and in love as it gets. They bickered all the time, but you just couldn’t picture either one of them living without the other. They were married for 69 years, 11 months and 17 days — April 1 would have been their 70th anniversary. My grandma said some things to my dad last weekend and I was heartbroken for her. My wife Tiffany felt the same way. As sad as we were about my grandpa, we were more sad about my grandma.

When I switched planes in Minneapolis, I called my dad to ask how she was doing. She was doing fine considering what she went through — her life partner had just died, but she was with her sister-in-law (my grandpa’s sister) and holding up fairly well. When I landed in California, my brother picked me up and we went straight over to see her. She would always light up when I surprised her with a visit. I was in town in November and she didn’t know I was going to be there, and it made her month when I showed up. I hoped me popping in unannounced on Tuesday would cheer her up and sure enough, she was happy to see me.

Me with my grandparents the last time I was together with both of them, 11/15/2013.
Me with my grandparents the last time I was together with both of them, 11/15/2013.

My grandma is a different person than my grandpa, but I love her dearly, too. She is an autism mom and a true mama bear — she really defends my uncle. My wife developed a special bond with her over the years after our dealings with Jack. She loves her three sons and her grandchildren and great grandchildren and loves to see us. She smiled when I walked in with my brother and I gave her a hug and a kiss. That’s always the first rule with her — you have to walk over and give her a kiss!

She was tired, and she looked drained, but it was nice to see her. She wasn’t super talkative, because she was pretty tired and emotionally spent, but we chatted for a bit and hung out for an hour. I told her how my kids are doing, I laughed about all the snow shoveling I’m doing this winter, I asked her how she was doing. I could see that she was pretty overcome with sadness and exhaustion, but I was pretty surprised with how well she was holding up. She looked to me like she had aged and I was concerned with how she’d feel when the loneliness kicked in. She was clearly tired, though, and told us she wanted to take a nap. Me and my brother helped her into bed and tucked her in at about 6 p.m. I gave her a kiss, told her I loved her, she smiled, and we were on our way.

I went out to dinner with my brother and my folks and got back to my their house a little after 9. Maybe two minutes later, we got a frantic call from my great-aunt that they had to call 9-1-1 because my grandma wouldn’t wake up or something along those lines. We didn’t know exactly what was going on, but we knew something was happening so we raced up. I was communicating with the family — my dad was pretty panicky but I was staying calm and focused (probably because I was so tired!).

I wasn’t saying it at the time, but I was praying on the way up that my grandma had died. I thought she would be so miserable without my grandpa, and she had lived a very full life. I just thought that would be best for her. We parked and there was a fire truck outside the house but no lights on. A fireman asked me if I was a relative and I said, yes, I was her grandson, and he instructed me to go inside the house. A fireman inside had the same question for me and when I confirmed I was immediately family, he said a simple sentence that froze that moment in my mind, and I know I’ll never forget it.

I’m sorry, but your grandmother is deceased.

My grandma spoke to my uncle on the phone at about 8:30 p.m., then they gave her her meds, and she had a heart attack shortly thereafter. I was shocked. I had just seen her a few hours earlier. I was happy inside for her, but still, it was very surreal. I was tired from the travel and the sleep and the emotional strain of my grandpa dying. This was like a strange movie, but it was for real. This really just happened. My dad is keeping it together on the outside, but I could tell he was just stunned. He looked like he had just gotten punched in the gut and I’ve never really seen him like that, but I don’t know if he had ever felt that combination of shock and sadness — in less than 24 hours, he had lost both of his parents. My dad has a big heart, which he got from his dad/my grandpa, and I felt so bad for him. He was pretty flustered, but that’s understandable.

I told my stepmom (I use that term as a technicality, she’s definitely like a mom to me) that I was happy for my grandma. I went and communicated with the family. I was (and still am) in a state of shock.

My grandma liked taking selfies as much as any 88-year-old.
My grandma liked taking selfies as much as any 88-year-old. This was last November.

But I am really happy for them. Death is a part of life for all of us. For both of them, it was peaceful and painless. They were truly one, joined in marriage. Me and Tiff talk all the time about how we hope we end up like them some day, old and deaf and bickering at each other and still as madly in love as we were when we were 19. I lose Guy Points to admit that I like the movie The Notebook, but I really liked the way they die together at the end. I even admitted that once in a job interview, because I hope that’s how it ends for me and Tiff decades down the road.

Well that’s what my grandparents had, and it wasn’t a Hollywood movie. It was 69 years, 11 months, 17 days of marriage, and praise God she only had to withstand 22 hours as a widow. It’s the best love story I’ve ever seen, the way I hope my story ends. As sad as I am to lose two grandparents I loved so much within a 24-hour period, I’m very happy with how it ended up for them.

April 1, 1944. Starting of the strongest bond I've ever seen.
April 1, 1944. Starting of the strongest bond I’ve ever seen.
My grandparents at my wedding. They really loved Tiffany.
My grandparents at my wedding. They really loved Tiffany.

Two quick grandparent anecdotes:

1. We named Jack after my grandpa’s dad, as an honor to my grandpa. When I called up my grandpa to tell him, in typical Grandpa Milt fashion, he broke down in tears and told me couldn’t talk and hung up the phone. He was so happy to know that, so honored to know how we felt about him. His dad died of ALS in 1961, so I never got a chance to meet him. But my son Jack Felsenfeld was not the first Jack Felsenfeld. My grandpa was so happy to hold Jack in the hospital and told me (through tears, of course), how he looked up in the sky and talked to his dad the night before. He always asked about Jack, and was sad when we left California, but he always asked how Pennsylvania was working out and was happy to know that it was going well.

2. My grandma and I bet on the Super Bowl every year for 25 years. That was the only bet on the Super Bowl I ever made. The stakes varied from year to year. One year, when I was in college in Kansas, it was one dozen cookies for every point the winner won by. She shipped me 10 or 15 dozen homemade chocolate chip cookies. The year the Ravens beat the Giants (2001), I had the Ravens. She was at my house at my Super Bowl party and when they poured it on in the second half, and the beer started getting into my system, I started to get a little, hmmm, loud. It was all in fun, though, and we enjoyed having that bet every year.

A lot of people tell me that they’re sorry for my loss. But I got 39 years with my grandparents, who I thought were amazing, and I’m really grateful for that. If you got all the way here, that means you read the entire thing, and that took some time. Thank you for doing so. :)[subscribe2]

Doing as Well as Reasonably Possible

I should blog more often. It gives my wife something to read and it’s fun (or sometimes painful) to have something to look back at to remember what you’ve been through. Raising three kids, one of them severely autistic, and working full time and trying to run a charity makes everything fly by in a blur.

Speaking of flying by in a blur, today marks 11 months since I arrived in Pennsylvania. I can’t believe it’s almost been a year. In case you’ve never been to this site, here’s three quick links that explain the story:

OK, that out of the way, everybody I talk to, be it face-to-face, text, email, Facebook, Twitter, whatever — one question I get a lot is, “How are things in Pennsylvania?” For the amount of people who ask me that question, I have to imagine that those of you who have followed along off and on over the past four or five years might be asking the same question. I don’t blog as much as I used to, and we picked this state without even seeing it because we thought it would be the best situation in the lower 48 for our kids.

So, 11 months in (seven for my family — they didn’t get here until July), how are things?

We’re doing as well as reasonably possible.

I’d love to sit here and say life is great. And, well, I guess it is. It’s difficult. But I wouldn’t trade my path for anything, aside from Jack’s autism. But everything we hoped Pennsylvania would be when we chose it a year ago, sight unseen? So far, so good. It’s what we’d hoped it would be. Cost of living and the job are in place, although I got a job because we needed to move. We didn’t move because I got a job.

The services here are what we were told they would be. The collaboration has been what we were told it would be. Jack’s teacher is as awesome as we were told she would be. She cares about him, which isn’t something I can say about the folks at the school in Colorado. We love the neighborhood and the town we live in, we have nice neighbors we feel comfortable and there’s kids everywhere. We miss our neighbors in Colorado, but we did what we had to do for our kids and here we are.

That doesn’t mean that everything is fantastic, though. Jack still has serious separation issues from Tiffany, which I blame on what they went through in Colorado. He has meltdowns daily. There’s plenty of this:

This was Sunday. But this could have been taken yesterday or Saturday, too.
This was Sunday. But this could have been taken Monday or Saturday, too.

He still has issues with his gut and self-injurious behaviors. Tiff just a great job pressing forward to constantly learn more about what he can and can’t handle, but there’s still a ways to go. It’s heartbreaking to see a 10-year-old suffer the way he does on a daily basis. But that would be the case no matter where lived. Everything we thought would be a positive about Pennsylvania has been a reality so far. And there’s still plenty of this:

I love me a happy Jack!
I love me a happy Jack!

And we just had something cool happen tonight:

Is it unreasonable to dream of your kids playing with each other?
Is it unreasonable to dream of your kids playing with each other?

The five of us still have plenty of challenges — more than our fair share in my opinion. But we are in the right spot. Pennsylvania is everything we’d hoped it would be. So about a year after we decided another relocation was in order, that’s how we’re doing — as well as reasonably possible.[subscribe2]

 

I'm Gonna (Try To) Be Mr. Mom

I’m just posting here so that there’s a public record. I’m concerned for my safety and I figure that if something happens to me and nobody ever sees or hears from me again, the police will come look at my blog and know who to investigate:

My kids.

My wife is going out of town — heck, she’s going out of time zone — for a few days this week. She’s going to visit her sister and I’m watching the kids. All three of them. All three of them. There’s three of them. They’re gonna kill me.

I’m happy for Tiff. This is going to be a good trip for her and her sister and there’s three of these little people running around my house. I know that normally, taking care of the kids is not a big deal and it’s just something that dads do. But as you know if you’ve ever been here before, I have a severely autistic son named Jack (quick plug: Operation Jack), and he’s got a heck of a routine. I have four typed pages on the refrigerator on the step-by-steps for him. I have huge respect for the job Tiff does with Jack every day — she has it down to a science and does an amazing job. I’m really going to have huge respect for her after going through about four days of this routine.

How to take care of Jack.
How to take care of Jack.

Then there’s the other two kids. To say I’m intimidated by this is an understatement. I know, it sounds stupid. A dad should be able to take care of his three kids, especially if he’s been a dad for 12 years. Really, it’s just Jack. With everything he’s been through over the past year, he’s really become dependent on Tiff and they have his incredibly detailed daily routine down pat. We both do a lot of things to keep our family going and she definitely handles taking care of Jack.

It will be pretty challenging for me and I’m nervous about this and even though she hasn’t even left yet, I can’t wait for her to get back. It will be nice, though, to spend more time than I normally do with Jack. Ben and Ava will be fine. We’ll all (probably) survive. Well, maybe.

Operation Jack Stuff

OK, I haven’t mentioned this for a while, but I’m trying to recruit people to run races next year and pick charities for me to give money to.

Elevator pitch: If you raise money for an autism-related charity (your choice!) equal to the cost of your race entry, I’ll cover your race entry. If you’d rather just donate money to an autism-related charity equal to the cost of your race entry, I’ll cover your race entry. I will cover your choice of a race entry or a donation to charity and either way, there’s no cost to you. And I’m going to throw in a custom Operation Jack shirt and medal as a bonus. This is my way of getting people involved and letting you pick what charities the Operation Jack Autism Foundation will donate to. Click here for the details. No risk, no cost, help me fill up my list!

Operation Jack Marathon Stuff

We’re going to run a discount code this Wednesday through Sunday. Come back here or check out the Operation Jack Marathon Facebook page for the discount code!

Ahh, I love it when Jack is happy ...
Ahh, I love it when Jack is happy and we can take a picture …

Ok, that’s all I have for today … if I have time to write a blog tonight, I have some rad pics from a trip to an amusement park on Saturday. Have a great Monday![subscribe2]