What I Have Learned In 15 Years

It was 15 years ago today that our 8-year-old son Ryan suffered a severe brain injury that left him unable to walk or talk or feed himself. He was in the hospital (in two hospitals, actually) for over six months, and ever since has lived with us at home. I thought I would share some of the lessons I've learned in these past 15 years:

• Some Run Away
  
  I thought I'd start out with the most unpleasant reality first. That in times of real trouble, some people you thought were your true-blue friends or close family members you thought were of solid character can turn out to have the proverbial feet of clay. For whatever reason, they're never around anymore. Why? I don't know. But you have to get to the point where you worry about this about as much as you worry that your pet ferret can't do fractions, which is to say not at all. Yeah, it hurts. But your not the first to stumble upon this disappointing fact by any means.
  
  
• Big Companies Don't Help
  
  These days the really big global companies have organizations for just about every group imaginable this side of white males of European heritage. If you're black, if you're Asian, if you're a woman, if you're gay, or even if you're a cancer survivor, there's a group for you. But have a crippled kid and son, you're on your own.
  
  
• Muddle through
  
  I've never seen a self-help book with this advice, but really it's some of the best advice I can give somebody going through a difficult stretch. Sometimes the absolute best you can do isn't that pretty, or elegant, or graceful, or frankly all that inspiring. When you're in one of those stretches, stop worrying about it. Nobody else could do that much better in your position either.
  
  
• Some doors close, some doors open
  
  I've had one vacation away from home in the past 15 years, not counting the summer I had off when I had my heart surgery. Since I couldn't get away, I started this blog. SeewhatImean?
  
  
• People are such wusses to-day
  
  Take that last item. Some folks would be horrified not to take an airplane trip vacation at least twice a year. While that's very nice, it's not a Minimum Daily Requirement for a Happy Life. People re-define extravagant luxuries as the bare necessities of life, and whine like a two-year-old when they don't have every last one of them. Keep the two categories straight and you'll be much happier.
  
  
• You gotta play out the season
  
  Every year baseball teams start spring training with visions of the World Series in their heads. And every year about May or June it's obvious to several of those teams that it ain't gonna happen. But they still play out the season. Your Big Lifetime Dream smashed to bits? You still gotta play out the season. Try to set the base-stealing record, or the record for triples, or the record for pinch-hit singles with two men out and runners in scoring position. Find the game within the Game, and play that.
  
  
• Let us brace ourselves to do our duty
  
  From Winston Churhill, it's my favorite sound bit from Charlie Sykes. It sounds a bit odd to our Modern Ear, but whose fault is that?
  
  
• Let people help you
  
  Gals, you don't have to remove your own gall bladders. Guys, you don't have to perform your own vasectomies. Being self-sufficient means being self-sufficient overall, not all the time. Let people help you when you need it.
  
  
• You never anticipate the really bad stuff
  
  Think of all the old Twilight Zone episodes that had a post-World War III theme. Now think of all the episodes with a big-jetliner-smashing-into-a-skyscraper theme. We tend to worry about a lot of things that never happen, and let ourselves get blindsided by reality.
  
  
• If all you look for is the bad and ugly, you'll never see the good
  
  If you search for The Stupid, you'll find The Stupid. If you search for The Worthwhile, you'll find The Worthwhile. If you don't get that, then it means that I've found The Stupid while looking for The Worthwhile. But you're The Exception, Bucko.
  
  
• Time marches on. Relentlessly.
  
  When Ryan was injured, he was in the 3rd grade. I wanted time to stop in some sort of magic fashion, so that he could get better and return to the 3rd grade. But his classmates moved on to the 4th, and 5th, and 6th, and 7th, and there was nothing I could do to stop it. I mention this because nobody really talks about it.
  
  
• On the other hand, sometimes Time doesn't move at all.
  
  Oh, if I could just become forgetful
  When night seems endless
  Does the extinguished candle care
  About the darkness?
  
  I used to think that the ultimate in slow time were those Midnight-to-4AM watches in the Navy. I had no idea.
  
  
• Everybody will have a story. And Yours is not the worst story.
  
  I used to think I was the only one with a Sad Story. I was wrong.
  
  
• Trouble comes in clusters
  
  When it does, muddle through!
  
  
• The social safety net can be odd at times.
  
  Let's say parents of crippled kids are eligible for a $3000 home improvement grant every year. Now let's say to install a home elevator to go down to the basement would cost $9000. You say, why not just save those grants for 3 years and install the elevator?  You a funny guy, you know that, Joe?
  
  
• Beyond The Blue Horizon
  
  Beyond the blue horizon
  Waits a beautiful day
  Goodbye to things that bore me
  Joy is waiting for me
  
  I see a new horizon
  My life has only begun
  Beyond the blue horizon
  Lies a rising sun
  
  Memorize this song. It's simple enough that when you're in real trouble, you'll still be able to remember it. If you're a Christian, you can substitute "Rising Son" for "rising sun" and nobody will know the difference when you sing it.
  
  
• Do you know who holds your hand?
  
  I learned these words from a friend of mine who was dying of cancer:
  
  I don't know about tomorrow
  I just live from day to day
  I don't borrow from the sunshine
  For its skies may turn to gray
  I don't worry o'er the future
  For I know what Jesus said
  And today I'll walk beside him
  For he knows what lies ahead
  
  Many things about tomorrow
  I don't seem to understand
  But I know who holds tomorrow
  And I know who holds my hand
  
  Every step is getting brighter
  As the Golden Stairs I climb
  Every burden's getting brighter
  Every cloud is silver-lined
  There the sun is always shining
  There no tear shall bend the eye
  At the ending of the rainbow
  Where the mountains touch the sky
  
  Many things about tomorrow
  I don't seem to understand
  But I know who holds tomorrow
  And I know who holds my hand
  
  
• Everybody wants to help Save The Earth, but nobody wants to help Mom do the dishes.
  
  When Ryan was in the hospitals for those 6 months, I was working in a group of 18 people at UltraGlobalMegaCorp. Guess how many cards I got from my group in those 6 months? Approximately? All of a sudden, don't you remember somebody you need to send a card to? Or make a phone call to? Or visit? You don't need to be brilliant, or wonderful, you just have to be there. You can do this. Off you go now!

Comments

[Stephen]

Wow...awesome post Tom.

[Jill]

Tom

This is a great post. As a regular reader of your blog, I never would have guessed the difficulties in your life, but that's where grace comes and cracks opens our latent strengths

[feather]

You have a row I wouldn't want to hoe......I know you are in the Milwaukee area, and as I am a Social Worker in Wisconsin working with disabled people, I know of some things/services/programs that you may or may not know of. Sounds like you know about the "Family Support Program" since you mentioned the $3,000. But do you know about The Brain Injury Waiver or The Children's Waiver or CIP II/COP? If you are in Milwaukee Co, they often do things differently, but I may be able to offer suggestions. If you are interested in discussing possibilities, I'd be willing to offer what little info/help I can. I'd just need an email address to respond to. I really don't want to post my email address here, tho. If not, good luck!

[TomInWestBend]

Nice post Tom, When I grew up in Michigan I grew up with a neighbore who's son had the same thing happen (well it was CIDS that cause the injury but you get my drift) It was them who taught me how to be joyfull of what we have in life rather than what we could have had.

Also a note to Feather, I think you are 15 years too late for Tom....

Tom I don't know how but I removed you from bloglines, I have readded you back (Thanks Owen for reminding me of Tom's blog...)

In Wisconsin, there are services available for individuals with disabilities from birth to the end. That is pretty much what I do. I help individuals and/or families figure out their wants and needs and how to get it, and how to fund it. Currently the youngest person I work with is in early 20's and the oldest is in his 70's. Help is there.

[Woody]

It was tough to read that, but likely not nearly as tough to write it. When I read and enjoy your site, I am guilty of forgetting the trials that you face. I admire your perseverance.

You stated many truths, most of them tough, and you do a better job than I could of facing them. With all the trials, we do have to do the best we can, and we are forced to deal with them whether we want to or not.

However, the one thing that I can't control is how others respond, and that can be the biggest disappointment even if it doesn't affect the problem or its cause. You find it's correct that you can count your true friends on the fingers of one hand. Your reminder to show concern or love with a card or a call or a visit means so much and is so easy. It just takes caring--and, then taking the action to show it.

[Charlie Sykes]

Tom:

What can I say? I've never met you. Never talked with you. But I am honored to know you and in some small way be associated with your courage, your wisdom and your humor.

Charlie

[GM Roper]

Tom, let me add to Woody's thoughts above. This is the absolute most wonderful post I have ever read. I'm facing serious problems, but absolutely nothing that compares with what you have faced and overcome.

Again, this is a terrific post. Thank you from the bottom of my heart.

[Guy]

Great post. You're not only wacky, but deep. Best wishes to you and your son...

[Raven]

Tom, I came here at GM's suggestion.
EXCELLENT POST.
I work with disabled children and BI young adults.

I see the parents who speak of everything you say here. They feel so lonely and unsupported most the time. They have no friends to speak of, take no vacations and feel guilty when they take a day off from visiting. The parents might have other children too, who need them but can't have them prior to the event that brought them to the place they're at. And I've seen many parents break up.

The parents are strong people. They deserve every ounce of respect we can muster out to them. And we do at work. But it's not enough. Society in general shuns the disabled, the sick, the elderly and frail. A
society that choses to show concern for all is my ideal and I work every day to try and make this better.

God Bless You Sir.

[david]

New tagline for your blog: "The strategy of bingo. The excitement of chess. The wisdom of Solomon."

Tom, I commend your spirit. And I very much appreciate that you share your thoughts - both humorous, whimsical, and serious - with all of "us" out here in blogland.

Best wishes.

[Karen]

Just wow, Tom. What you wrote left me with so much on which to reflect throughout the day that I couldn't comment until now. My severely cognitively disabled non-verbal daughter will celebrate her 15th birthday next week. Though our circumstances are not identical, I can concur with nearly all of what you've written.

"Everybody will have a story. And Yours is not the worst story." How very, very true, and something I will remember next week, when we take both our daughter and our son (who nearly died from cancer 2 years ago) for their checkups at Children's Hospital of Wisconsin. Each time we are there, one quick look around confirms that there are far worse stories we could be facing.

You, your son & your family continue to be in our thoughts, Tom.

[Stephanie]

Excellent post! I was directed here by Owen.

"Muddle through" is such great advice. Sometimes that's all you can do. As the mother of three children with autism I get a lot of hokey comments, both criticism and praise. In the end, sometimes "muddling through" is all I'm doing no matter what people say.

A quote I cling to and indentify with is this one:
I know God won't give me anything I can't handle. I just wish he didn't trust me so much.
-Mother Teresa

Thank you for sharing this perspective. More people need to see it!
:-)

[DRJ]

I came by from GM Roper's website and I'm glad I did. Our family has an autistic, non-verbal teenager who has a severe medical condition. So much of what you have written is a part of our lives. No vacations, no help, lost friends. I especially identified with your wish that time would stop so Ryan could catch up with his classmates. I held onto that dream for years.

I have no regrets for how this has changed our lives because we are all better people for having lived with such a special child. But I will never stop hurting for what has happened to our child, and I know you feel the same way.

[Jim]

Because of the business I'm in (respite care), I hear and read a lot of stories from family caregivers. Yours stands out. Superb post.

[Steve VT]

Your blog, your comments, tug at the very core of me.

I've worked with you in the past via Larry S. You are truly a man that could never have been created via evolution. Truly a work of God.

I'm very thankful that you have once again awakened in me what is truly important in life--the people I claim to love.

God bless you Tom. (I still can say that--yea!)

[Alan]

Tom,
Thanks for the insight, and the reminder of just what Christian Charity really means. With your permission, I would like to share this with some leaders in my church to help remind all of us what our calling truly is.

I pray that over the horizon, God's grace gives you all in your next life that you desired in this one, for all your family.

[Peter DiGaudio]

Added a link to it as well. Things haven't been easy here the last 3 or 4 years. There are times I have felt sorry for myself and wanted to give up.

I now have something to read when I encounter those feelings again. Your courage is truly inspirational.

[Carla]

Wow! It was nice to hear your perspective on things. My husband and I have a 22 yr. old daughter who is profoundly handicapped. Then I got dx with MS. Then cancer. You really learn about blesings and joy along with the disappointments and heartache. (My first lesson was friends who ran in the other direction after my MS. And it still hurts a little, even after 7 years.) My daugther has taught me so much and I'm a better person because of what I've learned being her mother. God Bless you and your family. Hope you're able to get a good night's sleep every now and then. If you ever want to "talk", feel free to e-mail.

[Darwin]

Thank you for writing that. I think there's a lot of things that happen in peoples lives that nobody wants to talk about.. and I appreciate you having the courage to talk about it to all of us out here on the internet.

=darwin

[John]

Tom,

You just put all the problems in my life into perspective. Damn, I worry about all the wrong things.

Thanks for bringing me back down to earth. I guess being stressed out at work is not a reason to be upset.

I just realized what stress can really be.

God Bless, I'll think of you and your son often.

[Will Allen]

I was just bitchin' about the pain I'm in from the surgeries I've recently undergone. I think I'll shut up and get back to muddlin' through again. Thanks.

[Patrick (BadgerBlogger)]

Tom, another true inspiration!

Please check your email when you get a chance.

[Gerald Hibbs]

Great post. My sister is developmentally disabled and I worked in group homes for quite a few years with this population. One conclusion I came to is that humans are on the earth to be tested (from a Christian perspective.) These folks, while fully human, are are in a different group. They aren't here to be tested. They are here to test us. And most of us fail the test.

[DeputyHeadmistress]

Thank-you. We have an 18 year old child who is profoundly mentally retarded. She doesn't speak, is only occasionally toilet trained, and she also had mild cerebral palsy.
The Social Security office tells us that she isn't disabled and she's not eligible for benefits because she's not in school (we homeschool) and we own too much property (we inherited a very rundown family farm. The income from it is 5,000 a year).
And like you said, I've learned that there is so much pain in other people's lives that our own problems just don't seem so big sometimes.