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

[Mastiff]

I have mild Cerebral Palsy, and I know for myself that what I have accomplished is due entirely to my parents' strength and perseverence in the face of everything. I can scarcely imagine the courage you must have, given that your son needs you so much more.

Ryan is incredibly lucky to have you, sir. May God watch over you both.

[Prentice Goodwin]

Tom;
You might be interested to know that "I Know Who Holds Tomorrow" was beautifully sung by Alison Krauss and The Cox Family on a CD recorded in 1994 on Rounder records, Rounder CD # 0307.

[Citizen Grim]

"I know who holds tomorrow" reminds me of a great old song - "Because He Lives"

last verse & chorus:

"And then one day I'll cross the river,
I'll fight life's final war with pain.
And then as death gives way to victory,
I'll see the lights of glory and I'll know He lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone!
Because I know He holds the future
And life is worth the living just because He lives!"

[David Giles]

Three years ago, our 7 year old son was diagnosed with a terminal brain tumor that we continue to fight. Your lessons are exactly right. I would add:

- While some people run away, others show up.

- Sometimes I used to be sad, now I know what sorrow means.

- Everyone over fifty is wounded in some way. The American deception is that life is ever better, ever upward. The truth is that life is a series of ups and downs. Be prepared.

- The most important response to someone who hurts is to BE THERE. Just go. Now. Your quiet presence will give comfort.

- There are areas that God controls and areas that I am in charge of. It is important to know which is which.

Be strong and courageous. A hundred years from now, you will be able to give thanks for current responsibilities.

[Theoccidentalman]

This is what I've been looking for. Our daughter is an "every needs child", because the term special needs really doesn't convey the reality of the situation. She is severely brain damaged, blind, autistic, and immobile. She will likely remain stalled at the 6th month of development until she dies. But my God is she a beautiful child. As hard as it is to care for her and give up all we can expect to give up, she reminds us daily of the preciousness of life, no matter how damaged or limited in scope.

Thank you so much.

[Squiggler]

I add my kudoes for a wonderful post.

I was caught off guard when my Mother had her stroke. Being an only child, the entire event landed on my totally unprepared shoulders. In the early days, I know I was on autopilot and going from one crisis moment to the next reacting. As the shock of the whole event began to wear off and I was able to get some sense around what had happened and how it was going to change not only my own life, but even more traumatically, how it would change the relationship of daughter to mother into daughter becomes the mother, I started first with asking questions, doing Internet research, and attempting to reach out to those I thought would be there as much needed moral support.

Unfortunately, I discovered early on just how "fair weather" many of my friends and my Mother's friends actually were. This added even more trauma and a feeling of real betrayal. By the time my Mother passed away 4 1/2 years later, I realized I had no one left. I hadn't even realized that it had been as much as two or three years since I'd had a phone call or even an email from almost all former friends and acquaintances.

On the other side were the so-called "well meaning" friends who were always quick to criticize every decision I made. I was accused of all kinds of cruelties simply because I was trying to honor my Mother's wishes to be at home and not confined to some kind of nursing home. For some reason, this was treated as tantamount to elder abuse in the eyes of the health care people and many of the older "friends" of my Mother's. One person even said to me, "why don't you do your Mother a favor and put her in a nursing home and visit her once a month on Sunday. Go back to where you came from and let her get on with the business of dying." Where I came from was 1000 miles away and in addition, the last thing my Mother wanted was to be confined anywhere. And she was into the business of recovery, not dying.

A couple of more strokes and the onset of stroke-related dementia made the last year of care especially trying. But, at the same time, even though my own life even a year after her passing has not recovered (I still don't have another job), I would not trade those 4 1/2 years for anything. My Mother and I became as close as any daughter could ever wish for. We shared in ways we'd never been able to do before. And we resolved all the old hurts or baggage and just loved each other.

I try not to be bitter about being abandoned by friends, family, even my husband of 32 years, who left me for another woman during this ordeal, but it is hard not to be. Then I remember that I did what was right, I did my very best to honor my Mother's only wish - to preserve her dignity, and I also did my duty. No one can ever take that away.

You understand what I'm saying. And I appreciate this posting in ways most people probably can't. Thank you.

[Maggie45]

Thank you for this. God bless you and your family. I can't imagine just how many people will have been helped by you today. Thank you again.

[The Unknown Professor]

Tom:

She Who Must Be Obeyed and I are believers whose son was diagnosed with Cancer (Neuroblastoma) at age 4. Three years later, he went into remission, and might have gone out of it recently (we don't yet know, but will next week).

The illness has taught us a lot, and you've hit most of the high notes. People ask how I can function so well under the stress. I answer that I know three things - God loves us and He's in control. So, it must follow that everything will work out all right. It might not be what I want, but He knows better than I what's best.

So, we wait. And muddle through.

All things work for good, but some people have harder lives than others.

[Mike]

This may seem stupid,(it is) because I cannot possibly understand your life (or life in general)but:

You only have two things to worry about, you are sick or you are healthy.

If you are healthy you have nothing to worry about, if you are sick you only have two things to worry about.

You will live or you will die. If you live you have nothing to worry about, and if you die you only have two things to worry about. Life and death.

If you die and go to heaven you have nothing to worry about, and if you die and go to hell you will be so busy shaking hands with all of your friends that you won't have time to worry.

[Scott in SoCal]

Tom,

God bless you for writing this. I too have been there. Different circumstance; similar pain, abandonment, hopelessness and heartache. And now years later after emerging from something which I was absolutely sure I would never emerge, I'm reading your post on a night when things are once again turning dark and difficult and confusing.

Thank you SO MUCH for reminding me what's important in this world and where to turn for hope and strength and courage. Seriously, you just made my night. Perhaps my entire week.

O fear not in a world like this,
And thou shalt know erelong,
Know how sublime a thing it is
To suffer and be strong.

- Henry Wadsworth Longfellow, The Light of Stars

[Zasdad]

A remarkable post, Tom. And some sobering and inspiring comments, folks. I've got some extra praying to do tonight.

Most blog output is just ephemeral, with no shelf life at all. This post is timeless.

D.Giles: those were great additions to Tom's observations.

[Lucas Cato]

Thank you.

[Chicagoray]

I read this post and subsequently your blog via free republic and am glad that I did. As a recently disabled adult this post speaks for many more than you may have intended. Brilliantly said, I must say.I look forward to frequenting your establishment.

[Mark]

All I can Say Tom is you got it dead on-- I have two children both born with significant life threatening illness and I have learned the same lessons that you wrote about.

Muddling along....

[Hillary Gravy]

Great post!

[John Fisher]

Came over here from Instapundit. As someone who has raised a disabled child, I can only thank you for clearly setting down what I know I and my wife have experienced and feel. What you wrote resonates with truth and humor.

God Bless you Tom. And God Bless your son.

[OhBloodyHell]

You didn't attribute that last one. I've heard it's from P.J.:

"Everybody wants to save the earth - nobody wants to help mom do the dishes."
- P.J. O'Rourke -

Nice piece, BTW.

[Cro]

Very inspiring...CNTRL-D

[Robert]

A classic.

[Cathleen]

My new favorite blog. THANK YOU!

My favorite hymn is, "O God Beyond All Praising"...the melody is "Jupiter" from Holst's, "The Planets." In addition to the magnificent melody, the lyrics are wonderful...my favorite excerpt:

But whether our tomorrows be filled with good or ill,
We will triumph through our sorrows and rise to praise you still!

Easier said than done, but it's brought me through a whole lot of pain and heartache...

[Dave in Texas]

Thank you very much.

[Tom McMahon]

Yes, the quote is from PJ O'Rourke. And the song snippet is from Elvis Costello/Burt Bacharach "Painted From Memory" CD. And I do need to get a copy of "I Know Who Holds Tomorrow", since I've never heard it sung, just spoken.

[PacRim Jim]

Tom, the main lesson I have learned from life is that intelligence and knowledge come cheap, but wisdom comes dear. A river of tears flows between knowledge of what one should do and the doing.

[C Soon]

I wrote this during a period of illness ... perhaps it may minister to you as well.

There's a time the world will say that you're a fool
There's a time the Father disobeys your rules
When the faith you have saved for a rainy day
Has washed away
You wonder why you even try to pray

For a sign that He's still there to care for you
Just a whisper of His voice would see you through
Just to know your endurance is not in vain
Oh, not in vain
But He won't give the word to ease the pain

Oh, believe in Him, believe in Him
Though He must be silent now, believe in Him
For the faith and hope you have in Him must be tested and true
For a trust that can't be shaken
He must let His heart be broken
For you

On your way to higher ground, towards the goal
In the desert of the dark night of the soul
Will you say, "Though He slay me, I trust in Him, I trust in Him"
Knowing He is closer than He seems

He has given us a glimpse behind the scenes
He has shown us what our perseverance means
We are put on parade for the world to see
The world to see
His Body still displayed upon a tree

Oh, believe in Him, believe in Him
Though He must be silent now, believe in Him
For the faith and hope you have in Him must be tested and true
For a trust that can't be shaken
He must let His heart be broken
For you

When your heart is poured like water
And your faith is running dry, remember
You're the apple of His eye
In His eyes ...

Oh, believe in Him, believe in Him
Though He must be silent now, believe in Him
For the faith and hope you have in Him must be tested and true

When you see Him on that day
You will hear Him say
"I believed in you"

"Believe in Him" by C. Soon ©
Based on the book of Job and other texts