Normally, I try to keep things on the upbeat and positive here. We’re chasing a good cause and I like to have a good time, so typically, I’m going to try to write nice things. But after the weekend I had, that’s not going to happen today. I’m teetering on the edge and on the verge of calling off Operation Jack, and while what I write might turn some people off, I’m not going to sit up here and be dishonest with you guys. I’m a regular human being, which means I’m far from perfect. And here, my friends, is my imperfect side.
Let me start by telling you how much Operation Jack means to me. Simply put, it means EVERYTHING. I spent close to a year brainstorming ideas, talking with people, bouncing ideas off people, restructuring my plans, canceling my plans, resurrecting my plans, finalizing my plans, and then doing a ton of dirty work to get to where we are now. And of course, we’re not very far into it. If I keep driving this bus, it’s going to be 17 more months until I can put it in park.
For the past year or so, I’ve been thinking a lot. I’ve tried to change myself a lot to think about myself a lot less. God has had a huge part to do with that. I had a huge shift in my religious outlook, and my faith has carried me in the direction of Operation Jack. If I had to pick a verse that I would apply to Operation Jack, it would be Galatians 6:9. Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. That is the only thing keeping me going right now.
Operation Jack means the world to me. For starters, it brings purpose to why God saved my legs when I broke my neck on November 7, 1991. I was never athletic, never fast and I never ran when I was a kid. There’s a reason I have my legs still, and there’s a reason why they turn pretty well. I don’t think God’s main purpose for them is to run a marathon in less than three hours. I’m hopeful they might bring a little bit of purpose to Jack’s autism.
I don’t think words can sufficiently explain what it feels like to have a child struggle like Jack does. Jack will turn 6 next month. I remember my 6th birthday like it was yesterday. I was in the first grade, I had a party at Shakey’s Pizza, my dad bought me a red Schwinn and I got a booth full of presents from my classmates. I’m pretty strong at math and I was able to do long division. Here’s the extent of Jack’s math skills:
He can actually get up to 30, although about 1/3 of the numbers aren’t pronounced very well, and I’m not so sure he understands the concepts of the numbers. It’s pretty tough to think about it. I try not to, because it’s upsetting. He’s in a fog and realistically, he’s probably never going to mainstream. If he was 19 and chose to do drugs and ruined his future, I’d be upset, but I’d know that he did it to himself. But he didn’t do anything. He didn’t ask for this. It affects his siblings. He was supposed to bridge the gap. Instead, he’s the one who steals attention unknowingly. Ava and Benjamin have fun playing with each other, but it’s not the same and while it’s not what we planned for, it’s what we have and we don’t love any of the three any more or less than any of the others.
But it’s painful as a parent to know that your own kid didn’t get a fair shake. And this Operation Jack is a way to maybe make a purpose for his autism, for there to be a reason for what he’s going through and what he’ll go through for the rest of his life. So I’m all-in emotionally. This is a big deal to me. I can make something out of my son. I can put a purpose to it all.
And let’s be realistic: I’m all-in financially, too. We don’t have a lot of spare change, and we’re risking probably about $25K in expenses to make this happen, although I’m pretty optimistic I’ll be able to nickel-and-dime my way to that. Without Operation Jack, I have a ton going on in my world. I’m totally overloaded, and I would say I don’t know how I get to everything, but I don’t get to everything. I’m behind in every area of my life, and raising money for Operation Jack and Train 4 Autism is one of those areas.
Here comes my imperfect side, not that any of that was perfect.
I put about 8 or 9 months of planning into this. Before it launched, I’d estimate I spent about 125 hours on everything, capped off by an all-nighter of programming (do you know how hard it is to write code at 5 a.m. when you got up at 4 a.m. the previous day?). Since then, it’s been at least 30 hours a week of Operation Jack work. I’m in some money, but I’m not worried about it.
I feel like I’m laying a foundation to make something happen. I’m counting on a team of teams. It took a month of pounding the pavement, spreading the word and trying everything I could think of, and I finally got my first team. I was totally excited. But the team wasn’t what it seemed. It looks like the team got an idea from Operation Jack and then decided it wanted to secede from the Union. Call me Abraham Lincoln, because I wasn’t happy. I guess it’s a free country and I can’t control what anybody does, but it hurt me. I’m working so hard at this, and just when I think somebody cares, I’m wrong. And on top of that, I feel like I was deceived by quite a few of the things I was told, and I think that’s the part that really upsets me.
The way I see it, I’m driving a bus to get a bunch of people to the destination, which is Train 4 Autism. I don’t know how to drive a bus. But I’m trying to learn how on the fly and I’m getting a lot of input from a lot of people. If you want to take a taxi, that’s fine. We’re all going to the same place. But don’t confuse the bus driver with deception. If he loses his focus and crashes, a lot of people won’t get to the destination. The driver needs to keep going.
I can’t stomach this kind of thing. I took it really hard. I don’t know if this is going to be the exception or the rule, but I can’t stomach 17 more months of this. I’ve been thinking really hard about quitting this and just walking away. I put this up six months early to see what kind of support I could get. If I end up thinking it’s a no-go, then at least I figure that out before I start buying airline tickets. I was really upset this weekend. In fact, I pulled the site down twice and for the first time since I’ve had my Facebook account, I don’t have a status right now. I just don’t have anything I want to say.
I need to convince myself that it won’t be this way, that I will get the support I’m searching for. I can’t do this alone. I want to build big teams and make a big change for the better and do it for Jack. But if I wanted to do something for Jack and do it all by myself without anybody else, it would be to take him to the park. It wouldn’t be to leave him and the rest of my family 60 times next year. Anyways, I was supposed to get a lot of work done over the weekend, but I was too worked up to concentrate on my code, so until I complete my project, I won’t have time to write another blog.
I get a bible verse texted to me every morning. Yesterday, it was Proverbs 28:25, Selfishness only causes trouble. I think I need to keep that in mind. It’s not about me. And to a degree, it’s not even about Jack. Operation Jack will not succeed with selfishness. I got the following comments from somebody whose advice I take more seriously than just about anybody:
I have a feeling this whole Operation Jack is going to be a huge test in selflessness. You’re going to face lots of disappointment along the way (whether in marathon performances, support, etc.). But you’ll have to keep on keeping on… more so than ever before.
Be prepared to say, I don’t care if I only have 1 person supporting me (let’s say Tiff), and only $10 in support… I’m still gonna run 60 marathons because I love Jack. That alone would be worth it all.
I think he’s right. I know I have the physical strength to for Operation Jack. I just need to stay strong mentally. I’ll need to keep Galatians 6:9 in mind.
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
Phil Kasunick says
Sam, you are not alone. We too have a child with Autism. It’s a lifelong mission. Everything changes. Your focus goes from “normal” to adaption. Don’t stop. EVER..We must help these kids. We have a saying in our house..it is “Man makes plans…..God laughs”.
Phil (runnerlog on twitter)
Shelly Overton says
Sam, I’m so sorry you’ve gotten your first disappointment. I’m guessing it wont’ be the last. I’m reading your blog while getting Danielle ready for her day program. You know, things like tieing her shoes, making her breakfast and getting her lunch ready to take with her. And remembering that she is 23 not 4 or 5. Our daily lives with kids with special needs can be filled with disappointment, however, our days go on. I’ve worked really hard on my outlook of my current daily life. There have been times in my life that were just not that much fun, but I don’t dwell on that part. I look at life through Dani’s eyes sometimes. She has the best outlook, always making sure that today is just fine then always asking “then what”. So, now you have a group of people who have disappointed you, you’ve vented here, know that the support will come in droves for you’re doing and while it’s tough, you can let this go and remember “then what?”, there is always another team that will surpass the one you lost. We’re here to support you. I get very excited just seeing the faces of people when I talk about Operation Jack and Train 4 Autism. Let me know what I can do to help you feel better about your mission. I’m here to say, you can do this and I’ll be here to keep saying.
Happy Monday Sam!
Shelly
Melissa G says
Here at the local public school, the majority of incoming kindergarten students (aged 5-6) cannot count and don’t know their alphabet. It’s not fair to compare your advanced social and academic childhood with your son’s. Maybe he is not at the same place as his siblings, again I say, SO WHAT?
Wherever you go in life, someone somewhere will disappoint you. You have to decide whether you are going to let those people undermine what you’re trying to do. If you want to run 60 marathons, run 60 marathons.
Yes, you’re tired. You’re overwhelmed. You’re unsure. But you will never be handed anything in life that you cannot handle. Operation Jack is a gift.
RUN WITH IT.
Melissa G says
Question: any possibility of getting a donation button on your website? If you asked people to donate a dollar to help the cause, I think they would do it and those kinds of donations add up fast.
Tiffany Felsenfeld says
Sam,
Plus 1 to what Shelly said! Anybody who knows Jack personally knows that he’s got a fighting, “I can do it” way about him. Even with school and therapy six nights/week at home, he rarely falls weak…he keeps on. For a long time I thought, we’ve really taught Jack a lot of things since he came into this world. But really, the more I look at it, he’s taught us a lot as well. One things he’s definitely taught me is to just simply NOT GIVE UP, no matter what! Every time I struggle with something in my life, I think about him. I tell myself, if Jack can get through his challenges everyday, then I can get through whatever it is I’m going through. Jack doesn’t know it, but he’s been my “pacer” through all of my runs. Now, I could be wrong, but I’m pretty sure you’ve never dropped out of any of your races…why drop out of this one? Somebody disappointed you, even deceived you and it really hurt you. It’s a new week, move on and don’t look back. I want to be at that finish line in December, 2010…after all, I AM your biggest fan!
Tiffany Felsenfeld says
Sam,
Plus 1 to what Shelly said! Anybody who knows Jack personally knows that he’s got a fighting, “I can do it” way about him. Even with school and therapy six nights/week at home, he rarely falls weak…he keeps on. For a long time I thought, we’ve really taught Jack a lot of things since he came into this world. But really, the more I look at it, he’s taught us a lot as well. One things he’s definitely taught me is to just simply NOT GIVE UP, no matter what! Every time I struggle with something in my life, I think about him. I tell myself, if Jack can get through his challenges everyday, then I can get through whatever it is I’m going through. Jack doesn’t know it, but he’s been my “pacer” through all of my runs. Now, I could be wrong, but I’m pretty sure you’ve never dropped out of any of your races…why drop out of this one? Somebody disappointed you, even deceived you and it really hurt you. It’s a new week, move on and don’t look back. I want to be at that finish line in December, 2010…after all, I AM your biggest fan!
Tiffany Felsenfeld says
Sam,
Plus 1 to what Shelly said! Anybody who knows Jack personally knows that he’s got a fighting, “I can do it” way about him. Even with school and therapy six nights/week at home, he rarely falls weak…he keeps on. For a long time I thought, we’ve really taught Jack a lot of things since he came into this world. But really, the more I look at it, he’s taught us a lot as well. One things he’s definitely taught me is to just simply NOT GIVE UP, no matter what! Every time I struggle with something in my life, I think about him. I tell myself, if Jack can get through his challenges everyday, then I can get through whatever it is I’m going through. Jack doesn’t know it, but he’s been my “pacer” through all of my runs. Now, I could be wrong, but I’m pretty sure you’ve never dropped out of any of your races…why drop out of this one? Somebody disappointed you, even deceived you and it really hurt you. It’s a new week, move on and don’t look back. I want to be at that finish line in December, 2010…after all, I AM your biggest fan!
Deirdre Edwards says
Sam:
I can not even begin to understand what it must feel like for you and your wife, I have the utmost compassion and admiration for you guys, your children are extremely lucky to have you both.
You should not feel imperfect for letting this turn of events affect you, you are human and it is totally natural to feel those emotions. The difference is in how you let it affect you. If you let this bump in the road derail you then you let the negativity that comes your way win. If you jump over that bump and move on you win. All you can control is how you respond, unfortunately you can not control what comes your way, be it negative or positive. I do know though that the positive will GREATLY out weigh the negative coming your way during this journey.
So, are those words easy to type and say and is the reality of what you are doing incredibly hard in comparison? Yes, of course. I don’t think anyone is discounting what you are putting into this. It is easy to give you a pat on the back and say “hey great job”, tell our friends about it and say “hey this guy is doing this cool thing for his kid”. It is easy to sign up on a team and say “I would love to help in any way possible”. Although nobody can possibly understand how much you have put into this, we will all be here to keep giving you those pats on the back!
You can do this! You will do this! You are doing this!
Deirdre ๐
Phil Kasunick says
Sam, as you know we too have a child with Autism. The saying in our house is “Man makes plans, God laughs”..We strive for normal and at times it’s out of reach..so..we adapt.. Disappointing, yes..question faith, yes..get f’n mad at times, yes..slow down or throw in the towel, never. You won’t either. Sam, as they say..there is a reason for everything, we just don’t always know it. Sam, our race never ends.
Phil (runnerlog on twitter)
Erin Fortin says
I check your blog pretty much every day. I noticed it was down this weekend. I was bummed and thought I had the feed wrong. I’m even more bummed to hear why it was really down ๐ Keep your head up, Sam! You have followers and support from cities you might not even know. I’m already telling all my runner friends about you and Operation Jack, because I’ll be there running in Denver with you in 2010!
tricia smith says
I just found Operation Jack a few days ago but I already have started gearing up my plans for it and telling my friends and family. Just wanted to let you know you have my support and commitment to make this happen . I read something today that gave me a pinch of inspiration : There are those that watch things happen in life and there are those that make things happen . What you have done here is the foundation as you said . No one expects perfection from you as you find your way through this new part of your journey I imagine it will be trial and error. Please do not give up . I truly believe God has a plan for you . Sincerely your new supporter in Atlanta, Tricia S.
Aimee Blackford says
wow….thanks…
Toni Lapp says
Hi Sam,
I’m the mother of a 16-year-old with Asperger’s syndrome (and blog about our experiences at SpectrumConnection.net ) . It’s a journey filled with ups and downs, and as with any endeavor, it has its rewards and challenges. Keep the faith and know you’re making a difference — not only in your son’s life, but in other kids’ lives. You’ve got my support.
Jenn Fellrath says
I second Phil!
Remember 3 months ago we did not know each other now we share snippets of our lives. You’re shouting in the forest, but not alone. Soon our voices will grow in number, word will spread… your seed will take root and bloom…
I was writing a blog entry a few weeks ago and back burner it; I revisited it and published it today: http://mgwolf13.blogspot.com/
What my autistic son has taught me..
Stefani Faunce says
I follow you on Twitter and read your blog religiously. You are truly an inspiration. I am trying to figure out which race I can run next year – I wish there was one in Oregon but I will use it as an excuse to travel. Have you considered shirts or something for people to wear when they run to get other runners on board with your cause? It is great advertising and if we wore it running, runners and walkers alike would see it and might consider a race or a donation because they or someone they know is affected by autism.
Just gotta keep spreading the word – you can do this. It is a great cause. Don’t give up – you are an inspiration to more people than you know.