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

[Peg C.]

What a wonderful post. In so many ways, time never marches on for you, and that to me would be the toughest - being frozen in time. We recently lost an immediate family member to a brutal murder. We will never get over or past it, but time is not frozen. As horrific as it has been, it will fade with time (especially after the trial, which itself will not happen for months and months).

God bless you and your family.

[George E. Rennar]

Sir, you have honor and decency.

[Sissy Willis]

It's true. You just have to be there.

[SWBarns]

In the last 15 years of raising my mentally handicapped son I have learned many of the same lessons. I would add a few lessons of my own:

1) You have to maintain a sense of humor.

2) Redefine what is wonderful. Potty trained at 8 years old is wonderful. So is a smile and the best of all is having a seizure stop.

3) Use what ever resources are available to you. This was the hardest lesson for me to learn. I spent the first thinking "I'm no charity case." If it is offered take it. Respite care and summer camps are wonderful things.

4) Never think what might have been, it will only break your heart.

[Matt Kaufman]

I know, in part, what you are going through, but my journey with a disabled child is just beginning. The fact that you and your son have borne this burden for so long helps me to believe that my son and I can do the same.

[Ted]

Tom, your son has a great smile.

[Single Father]

Be thankful you have a wife.

Once you have a retarded child that fact dominates all other aspects of your life. Every social activity has to cater to the retarded child, every minute must revolve around keeping the retarded child out of trouble and out of other peoples' way, and every "date" is simply a spectator to a low-intensity war to keep control of a kid who as an immutable matter of biological law cannot be controlled.

We stare the futility of parental investment in the face and willfully ignore it, acting out our role as mentor as if the rite of passage of adulthood for our lost progeny is somehow possible, going through the motions in the vain hope that someday, maybe, like giving CPR long enough just might raise the dead, our children might choose reading a book over chewing on its pages. It is a test of love which all parents of a retarded child must pass.

Be thankful, though, that through your wife you are loved.

[btorrez]

Tom,

Thanks for sharing your story. Having gone through a very tough time recently with my father, your observations about how life plays out are dead on. I can only add that I had to learn to trust my own instincts and feelings and allow whatever I felt: the anger, hurt, humiliation, etc. to play out. You put it so well, you just have to muddle through. Thank you again for a great post.

[Hisownfool]

As the father of an autistic son, I want to say "thank you." Everything you wrote is, from my experience, true. I especially appreciated the part about muddling through. It's my speciality.

[David Axley]

I am brother, Steve sent this link to me about a day ago. I was so moved that I thought I would share my story or actually, it is my son, Ryan's, story. Ryan was born with Spina Bifida (couldn't even pronounce it when he was born, much less knew what it was) 27 years ago. We were told that he probably would not make it through through the night but he defeated all odds and has made it 27 years. When he was born the selfish side of me came out and I thought it was all about me not being able to do things with him that most fathers and sons do. I thought I would never see another happy day. I thought I would be the end of a normal life (whatever that is) but instead, it was only the beginning. He has had operation after operation to correct certain conditions, with little success but I have learned that there is only one person who can fix the human heart and he did an outstanding job on my son.... and me. In Ryan's short 27 years I have learned more from my son then anyone else in my 58 years of life. I have learned that it's okay to cry when you are sad, to be angry when things don't go your way, to be fearful when the doctor gives you a diagnosis you didn't expect, to laugh for no apparent reason and to be understanding and wishing other would be when your son just pooped and peed his pants at 27 years old. Life is funny. Remember when we were in college and we knew exactly what we were going to do in life and nothing was going to stop us. We were not going to let any thing or person stand in our way. Not even Ryan. My life has changed for the better because of Ryan. My life is richer, fully and more exciting because of Ryan. Ryan has brought meaning to my life and I will forever be indebted to Ryan for changing my life. For with out him my life would have been normal. Praise God for Ryan. We all have lessons to learn and they are wonderful blessing from God....and sometimes we get them even when we are not expecting them.

[Dan Sharp]

You said that everyone has a story. That is true. I have one too, about myself, but I will not take up the space to tell it now. When I was in the hospital recovering, a friend of my mother's came and he told me that if everyone in the world would put their worst trouble in a pile, and then take someone else's trouble from the pile, everyone would end up taking their own trouble back. When he said that to me, I felt like he was a foolish old man, and I just wanted him to go away, so I wouldn't have to listen to his "silly plattitudes." But now, 30 years have past, and I often remember what he said. And now I know it is true.

[Matt]

Beautiful! Thank you for sharing and God bless you and your family.

[Alex]

Thank you for sharing. I know it sounds dull, but I mean it. Thank you.

[Charles]

Thank you, Tom! What a blessing and encouragement.

I have multiple sclerosis. And five children, the oldest two in college. I'm not disabled, just limited. I still work (self employed) and pay taxes.

Some Run Away - And we thank the Lord for our true friends!

Big Companies Don't Help - I have to give credit to Home Depot. They helped finish the interior of our house, a project that would have taken me many years of pay as you go.

Muddle through/You gotta play out the season/Let us brace ourselves to do our duty - That's number two on my list.

Do you know who wants to hold your hand? Do you know Jesus, the Christ? - He is number one and makes number two possible. He replaces despair with joy and peace (except on those occasions when I neglect to seek Him).

Let people help you - Yes. And first you have to accept that you need help.

You never anticipate the really bad stuff - That's for sure.

If all you look for is the bad and ugly, you'll never see the good - Yes. And you will be miserable. And probably alone in your misery.

Everybody will have a story. And Yours is not the worst story. - Yes. Be thankful. Be sympathetic.

Everybody wants to help Save The Earth, but nobody wants to help Mom do the dishes. - And words fail to fully express our thanks to those who help or encourage, even in small ways, year after year.

May God bless you and your family, Tom. May he give you strength and renew you each day.

[Dan Hall]

Thanks for a great post. My daughter was diagnosed with Wilson's disease (which pretty much destroyed the basal ganglia in her brain)in 2001 (she was 17 at the time) and spent more than two years in the hospital before coming home. At her worst, she had the physical capabilities of an infant: she screamed all day, wasted away to less than 80 lbs., and NOBODY could or would tell us it could possibly get better. But it did, and she improved enough to come home, where she continues to improve through a combination of the body's healing power and her own heroic effort.

Your post reminded me of some of the lessons I learned along the way, the two most important of which are:

1. NEVER give up on your kid, no matter what the "experts" say. There is always another hospital or rehab that may have an answer, and if you have to fight like hell to engage them, that's what you do, relentlessly, even when you don't think you can get through another day. And you do it with absolutely no guarantee it will do any good. You just continue to show up.

2. Accept this new reality. It's all you have, and each new reality offers things the old ones never did.

Good luck.

[silvermine]

Excellent post. Very well said.

I think part of the problem these days is that people are so isolated from calamity that they really have no idea how to act. I know I feel very bad about a co-worker I had. He was diagnosed very suddenly with cancer and died only months after. I wished I knew how to approach him, or how to help out his wife, but I just had no idea what to do, or what would be appropriate, and I was so respectful of the awful situation they were in, that I didn't want my bungling stupid uselessness to get in their way. So, instead, I hardly did anything. And I know that was the wrong this to do. But I didn't know what to do at all. :(

Now I have a much better idea. I wish I could have found a "list of things to do for people who have a calamity". I'd say the top things on the list are money or services to clean the house and get food on the table. Or do some yardwork or something.

Or, heck, it doesn't even need to be a calamity. I was so greatful ot my parents after I had my son -- they came over every day with a hot, yummy, healthy dinner, with enough servings to have leftovers for lunch the next day. Or they'd go run errands at the grocery store or Target for us, when they just happened to be going. It's amazing how much little things like that can help.

[Evelyn Anderson]

Tom - you have hit several nails on the head! I sustained a TBI almost 12 years ago and on some anniversaries have updated this "balance sheet," which helps me see how far I've come. Hadn't done it for several years so you inspired me. Here it is (if it exceeds space limits, let me know):

_________________________________
The Balance Sheet
Evelyn Anderson
March 2006

It has been almost 12 years now, and as good a time as any to think about what has changed since my traumatic brain injury on May 13, 1994.
“What doesn’t kill you makes you stronger.” Maybe there’s some truth to that. I nearly died, others tell me, when I was a pedestrian hit by a speeding driver. A dozen years later, with hindsight, I can see credits as well as debits on the balance sheet. In the early years, I wouldn’t have thought that a positive outcome was possible.
The debit list is easy to write. It includes physical pain, four surgeries and recoveries, continuing frustration with double vision and memory deficits, the loss of the job that once was a joy but turned into a nightmare of mistakes, loss of a new job in which I failed probation, incredible financial problems, many legal defeats and battles with insurance, restrictions on activities and mobility, and inability to connect with my teenage children when they needed me.
And that was all in the first five years. None of it would have happened if I had crossed that street a few seconds earlier or later. Or, if the driver hadn’t turned that corner just then. Or, if the police hadn’t been chasing him through downtown streets. Or, if it hadn’t been Friday the Thirteenth (it really was). Take your pick; it’s the luck of the draw.
So what are the credits, or the lemonade to be made from this very sour lemon?
First, my career and volunteer paths changed for the better, once I realized I couldn’t do the same work I did before the injury. Before, ironically enough, I had worked in public awareness in the disability field, helping others understand and relate. I was really good at detail. Not true afterward. But, post-TBI, I could use my first-hand knowledge in my work and volunteer activities. I found a wonderful job with people who actually understood traumatic brain injury. I didn’t need to try to hide it any more.
Second, I developed advocacy skills and more assertiveness, as I learned to obtain services, and often to fight the system.
Third, I found a community of support, people who had come through similar experiences. I formed friendships with people I otherwise never would have met.
Fourth, I learned to slow down and be more patient with myself and the rest of the world. I learned to let go of the little things and focus on what’s important. That’s probably the hidden benefit of traumatic brain injury. You can no longer do everything as well or thoroughly as before. It takes a while to realize that, and then you get angry at the loss. But in time you have to learn to let go, to be satisfied with who you are and what you can do post-TBI, to prioritize and focus on what’s really important.
Fifth, I learned to listen better and be a better friend, spouse, and parent. My religious faith became stronger as I learned I no longer could control everything. I am so much … cooler.
Is the balance sheet really balanced? That’s hard to measure. To change metaphors, the past 12 years have been a long detour from life as it once was; the road is under construction. I keep looking for a sign that says “End of Construction: Thank You.” But there isn’t a sign. It’s up to me to decide whether the journey is on track. Many days I don’t think about TBI at all, and I realize I can decide which turn to take on the road. That’s empowerment. I will always have a TBI but it no longer defines me. It’s good to be back.

[Wholesomedick]

This is one of the best things I've read in ages. I do think theres some peole I should send cards too.

[dbierness]

Thank you. And may our thanks help you, even if only a little.

[wtf]

This was an interesting post. I can't imagine the commitment it takes to raise a severely disabled child. When I see parents with a severely disabled child on the street or on television my heart goes out to them and I'm disappointed with our society and our government and myself for not doing more to acknowledging that commitment and offering some kind of assistance.

I was disappointed, however, by your comment about groups of women, cancer survivors and gays receiving preferential support from big, global corporations. I would imagine most of those groups were begun by prospective members, not by the corporations, and probably they had to make a case to senior management for whatever support they get. I can't imagine a group of parents of disabled children or their friends would have any more difficulty getting support for a group.

Also, you wrote that "companies have organizations for just about every group imaginable this side of white males of European heritage." Nearly all companies have groups for white males of European heritage. It's called "senior management." They don't let all the white males in and they do let in some non-whites and women, but the white men dominate and rule.

[hugh]

as someone who's been dealing with having AIDS for the last 20+ years, i can't tell you how true your words ring.

god bless you and good luck with your travels.

"You say, why not just save those grants for 3 years and install the elevator?"

ROFL!!

My 13-year-old son is severely autistic. You are so right.

Post-autism, my new theology is "S#$t happens, what matters is how I handle it." I just can no longer waste time and energy asking myself why things happen, they just do. The only part that I can control is how I respond.

[Chris Desmond]

When my little brother Mark (1960 - 1980) suffered massive brain damage (pneumonia, high fever) in 1961, the same sort of Unending Darkness descended over our family. We stuck together to take care of Mark until he choked to death on his own phlegm at age 20. Actually, my mom, truly a living saint, did the heavy lifting, with the rest of us "taking a shift" (he needed 24/7 care). From ages 2-5 Mark rose to walk (wobble, really) before my parents took him to a quack doctor ("any port in a storm," they felt), who debilitated him further. My brother never had a chance, and in his last 8 years his suffering became unspeakable as other maladies set in. During the thousand deaths that he suffered before he actually died, we endured unthinkable thoughts about quality of life and one's responsibility to another, such as how to deal with one who suffered unremitting pain yet no way to communicate it (watch "Johnny Got His Gun" -- the scenes before Johnny found a way to communicate). Imagine the worst tooth ache or ear ache of your life and not being able to tell anyone about it; hence there is no one who can know whether or not to give you any pain meds. Then imagine that happening on a recurring basis, for years. I know I’d beg to be shot, yet there would be no way to even beg for that. That was Mark’s existence. I think of these things when I hear people casually speak about "quality of life" issues, then abdicate to others (government officials, politicians) their responsibility to make tough choices in indescribably tough situations. We stuck with Mark to the bitter end, but to this day I'm haunted by whether prolonging his suffering was the right thing to do. His ordeal taught me many things, but especially this: Moral clarity is not always attainable, and this causes mayhem in the soul.... I am now privileged to help make sure that my now ailing mother reaps as much happiness and joy out of each day as possible. It was she who felt every stabbing pain of her dying son. She never gave up trying to soothe him, and all the while she was married to an abusive husband. One day my healthy son will fully appreciate why I keep reminding him how grateful he should be just to be healthy. I often feel dismissive of friends and acquaintances who whine about their aches and pains. If only they could’ve lived a day in my little brother’s shoes, I say to myself. If only....

[Quotidian Grace]

I just came across this post and linked it to my blog. It is the most memorable post I have ever read on the internet. My brother and his wife spent 5 horrific years fighting his daughter's neuroblastoma until she died. He told me he learned many of these same lessons.

God bless you and your family and thanks for sharing your thoughts with us. It will make a difference.

[j,too]

Thank you for sharing your life lessons. May God's Grace be abundantly in measure for you and your family. And yes, I'm heading off to my writing desk now!!