Words

There are words that I know you know, trapped inside your head
I can see them move your face, but noise comes out instead.
You can gesture all day long, but it's the quiet I dread.
It was thought that you're so flawed, that you should never breathe.
Guilt and shame take aim then they rename you special needs.
Why is hearing such small words, in all your daddy's dreams?
All of the experts said you'd be just fine.
Couple years therapy just a little bit more time.
Something came over you in the middle of the night.
Changed everyone's life.
We were told when you grew old, that you'd be on your own.
Best laid plans can turn to sand when facing some unknown.
Even through those bitter truths, you've always brought us home.
Oh sweet Jesus when you come and wash this planet clear,
will you tell me why I've come so far without this fear,
to watch alone in silence words I'll never hear.

A 'Moosical' version of this can be heard here- http://www.soundclick.com/bands/page_songInfo.cfm?bandID=1284204&songID=12651278

Teamwork

A couple of recent episodes with Mitch got me thinking about teamwork.

I hear a noise, she starts to panic

He's sick once more, that explains his manic 

I grab a can, Branden grabs a towel

I catch his barf, she pulls his hand from his mouth

I roll him over, she wipes him clean

I catch his fall, when he starts to seize

I turn him to his side, she strokes his hair

She calls 911, I fret the blank stare

She answers the door, I change his shirt

Branden grabs the bucket, EMT's go to work

Four strong men, winch and groan

While the big boy is hauled, out of his home

I ride the ambulance, she drives the car

I give his history, to the EMT so far

I pin him down, she calms his fear

She tries to explain, what he just won't hear

Just another IV, an intermittent BP

Pulse ox, a gown, maybe an EKG

She fills in the doc, I take a short break

She shouts and points, the brown pool he makes

I grab the towels, she holds her nose

Nurse grabs her mask, as the odor grows

I'm not quite done, his hand down the throat

projectile vomit give the floor another coat

I keep on cleaning, she helps but gags

The professionals scatter, leave us the bag

I start to mop, she calls home

We're left to wonder, why we're alone

Finally some drugs, a little too late

She is relieved, I ponder our fate

Six hours later, on our way home

I think of the future, when we're too old

This kid needs a helper, 24/7 care

I pray the right people, will still be there

She tucks him in, I boop his nose

Two minutes later, he seized up and froze 

She starts to cry, I just break down

I wish that forever, we'll be around

It comes to pass, paramedics arrive

twice in one night, their coffers thrive
But he's ok, he cracks a smile
To explain what he gives, would take a while

She finally sleeps, I stare at the dawn

The next day he's fine, like yesterday's gone.

Mom

I lost my Mom to old age on April fool's day of 2012.  She had a multitude of health problems that worsened with age, so I was fortunate she held out to 87.  I have trouble writing about my Mother because everything about her was bonded so close to my soul.  If ever there was an angel walking the earth it was Mom, solidly grounded in reality.  Her entire time on this earth was spent improving the welfare of others.  She practically raised herself after her younger twin sisters robbed the attention of her parents, yet went on to become a registered nurse for 35 years.  Away from work, every minute of her day was dedicated to the well being of my brother, sister and I.  She attended every concert, play, Christmas pageant and graduation all the way through college for each one of us. That smiling face in the crowd.  She rarely ever indulged for herself besides reading mystery books and an occasional golf game.
When the three of us all went our separate ways  I know it slowly broke her heart, and from then on she spent her days worrying about us and clinging to the hope that one or all of us would either move back home or a least visit. When the grand kids came along she slipped back into Motherhood on a moments notice.When her and Dad moved to Colorado it was pretty tough on her, because now the home she had dearly loved in Illinois was forever gone, and her children were scattered about the country.  Fortunately my brother and I and our families made our way to Colorado so things improved for her for many years.  Even my sister lived with her and Dad for a few years. Though it was never the same as having us all in one house all the time I could tell her spirit's were elevated for quite some time.
As Mom's mind slowly deteriorated we had no choice but to become more detached from her personally because small details seemed to confuse her.  She was our built- in nurse and counselor, and now it was time we had to deal with our problems on our own.  By 2012 she still knew who we were but the details of our lives were sketchy.
Mom and Dad were together 56 years, and although they didn't have many common interests, they were tightly bonded by a love I've not seen in many couples.  With her children and grand children finally weened into adulthood there didn't seem to be much to take care of on this earth anymore, so my Mother was taken to heaven to serve a family of billions.  Mom and I had a very close bond, for we had similar physical and emotional attributes.  She gave me the ability to express myself artistically in many ways, and she taught me patience, common sense, moral decency and most of all love.  I will miss her for the rest of my life, yet I know she is always only a prayer or thought away, and her spirit moves me through each and every day.
M

A Christmas perspective. (Make sure you're not eating)
A customer we refer to as 'the Princess' was complaining about her $50K wine room not working properly and her bonehead husband getting her flowers at Safeway instead of some fancy florist. Really? So I told her this story. I probably shouldn't have, but it got her to leave me alone. Yes this really happened

Twas the week before Christmas and at my fun house
The oldest turned 20 and freaked out my spouse.
And what better way to soothe savage beasts
than a traditional Olive Garden Holiday feast!
The Honda tilts right when big Mitch climbs in
but we can't deny pizza to that sweet happy grin.
Salad(yea right), lasagna, bread sticks galore
Desert? HA! We couldn't take anymore!
Suddenly Mitch is slapping his neck,
Which means it's re-flux, his innards a wreck!
I sign for the men's room, we go with a clatter
But re-flux wasn't the only thing the matter.
He lets out a yell from the handicap stall
I open the door-it's all over the wall.
I frantically clean with whats left of the paper
Try not to gag use the empty roll as a scraper
What to my wondering eyes do I see?
The potty is plugged with the chocolate debris.
As his tummy becomes the worlds loudest grumbler
My very own hand becomes an emergency plunger.
I'm frantic I'm freakin in frig-gin brown plaster
Hoping no one will see this utter disaster,
When what is the sweetest sound to my ears
But Branden's dear voice saying 'what's up in here?'
"Branden please hurry to the booth next to me,
Pull off the paper and slide it to my feet!"
4 flush 5 flush 6 flush  7
This better get me that ticket to Heaven.
Paper towel baths as the big boy complained
Walked out smiling our dignity sustained.
Clean as a whistle down to the corrosion
But why in public must there be such explosions?
I know it's a mess but why would I say
That I really couldn't have it any other way?
I make my living from people, you see,
Who buy stuff no one on earth really needs
If I'm not always up to my eyeballs in shit
I would not understand the life others don't  get.
I don't really say much without a few beers
I'm a little too focused on what really endears.
So take heed you clueless,wounded, the like,
You've got to know darkness to see any light.
If things are more sacred than the savior of man,
Then Merry Christmas anyway, I've done all I can.
ps
And don't feel bad for me, I'm all in grins,
My friend Kelly Krei, has Autistic twins.(Kellykrei.com)

Special K

Today we attended a memorial service for Janet Kay Zaborek. Janet Kay was born in 1996 with Down syndrome and multiple health issues. She was adopted by the Zaborek family and given more love than she ever would have received in 100 years. She was not expected to live more than a year, and defied the odds for the next 15. She died last week form a blood clot after surgery. She was an extraordinary girl, sweeter than candy and tougher than nails. She was also diagnosed with autism.
Janet Kay always seemed to be a twin of a different mother to our son Mitchell. She behaved much in the same way and even looked a little like him. The Zaborek's also have a son with Down syndrome, so they are no strangers to the condition.
We saw quite a few families a the memorial with children of all stripes and disabilities, but I must say among these parents I saw a bit more angst in the eyes of those with severe health issues. We know the road in the medical wilderness all too well. My wife and I consider ourselves extremely fortunate to not have to go down the roads of some of these folks. They often have to endure countless days and weeks in recovery rooms, all laden with the same fears that one day their child might not come home.
Mitch has to be put under in order for the dentist to work on his teeth. He is much too strong and wiggly to be restrained while he is conscious. So every year and a half we go to children's and grit our teeth for three hours in order to save his. He's on to us, so it's impossible to get him anywhere near those double swinging doors. The last time were able to coax him into a wheelchair and wheel him backwards into the OR and put the mask on (shots only seem to make him fight more). My mistake was being positioned in front of him and looking at him as the mask went on. The look on his face was terrifying as though I'd betrayed him his whole life. I felt as though I was deliberately killing him as his face distorted and he fell asleep. I excused myself and ran to the bathroom to cry for about 10 minutes.
That image comes back now and again, as it did today at Janet's service. I know what her parents went through each time she had surgery, and watching that stage as they played her favorite song to a video montage of her life, and looking at that poster of a smiling beautiful girl intensified every emotion I've ever had in dealing with it.
Needless to say I shed a lot of tears for Special Kay today, but I am a Christian and I do believe she has gone home to a much better place. No tears, no pain and everything new. We've gotten to know to Janet Kay's parents, Robin and Bob, because of our 'kids in common'. Robin, with the help of Linda Barth (formerly of Mile High Down syndrome assoc.) has founded the Down syndrome-Autism connection in Colorado. http://ds-asd-connection.org/ Janet Kay's picture is in the middle on top with her brother Tommy.
I gave Robin a hug today and told her I felt like the luckiest idiot on the planet. I knew a girl named Janet Kay Zaborek.

Theraputic riding teaches everyone

Littleton Colorado.

Tucked away between route 85, light rail and row townhouses, and below a massive dam lay Coventry Farms, a broken down ranch where we spend 30 minutes every Sunday for Mitchell's therapeutic horse riding. You would never know the place was there because it sits in a valley out of site from any road and too far south from the light rail. It's a cool place though, the buildings are all in dis-repair, the fence is jury-rigged together about every 20 feet, and there's old farm machinery sinking into the earth sometimes adorned with signs or filled with dirt for a planter.

It reminds me a little of the farm I grew up on in Illinois, except Dad would NEVER have let any of the buildings look this beat up. A non-profit called 'The Right Step' is allowed to use the facility for it's therapeutic riding program.

Mitch started riding when he was about 5 or 6 at a place called Praying Hands Ranch way east of Parker CO, and has usually enjoyed riding. Volunteer's walk on each side of him to steady his trunk (though he really doesn't need them anymore), and there is a licensed riding therapist who instructs the volunteers where to ride and also works with Mitch on communication and occupational and physical therapy. Mitch's teachers name is Ms. Paula, who worked with him at Praying Hands also. Paula is a very calm and quiet person who is able to sense the mood of her patient immediately and structure her session around that particular mood.

At first we could only afford a group lesson in which Mitch had to ride with 2 other disabled kids, and this proved hard for him because he didn't have the patience to wait while Paula worked with others. He just wanted to keep moving. So we managed to shift some funds around to allow him to have a private lesson with Paula which has made an incredible difference. His transition from house to car to stable sometimes is a little tough but once he's there and he sees Paula's face (or Cheryl, the manager of the program) his face lights up and he's ready to go.

Paula has gotten Mitch to sign more than anyone else at any time. He now signs three words in a row for her, telling her to stop, walk on, run, and even yes, no, more, and thank you without prompting him. The horses calm him down and allow him to focus on Paula more than he could anyone else, and Paula is extremely patient with him, never giving up on a command. Over the span of a year he has eliminated any complaining and stays focused on Paula.

The Volunteers are amazing too. They pull that horse around the arena and outside in freezing cold winters and boiling hot summers. That metal barn just roasts in the summer. And they keep requesting to ride with Mitch because they like him so much. He really is happy when he rides there, and everyone loves to see a happy kid. We are working on going twice a week since he has somewhat lost interest in swimming.

A few times we have been late in arriving and frustrated because of it, and it has reflected in Mitch's attitude. This was a great lesson for us, probably just as valuable as his lessons. His attitude reflects ours, so in this way we've learned just as much, and are forced to practice patience and restraint for the sake of the lesson.

Coventry Farms is a great place to visit. I would recommend it to anyone. The minute you open your car door the pressure of the busy suburbs falls away. With the exception of a train once in a while, there's very little outside noise. There's massive cottonwood trees all around that have obviously been there for hundreds of years. There's billy goats that walk up to you to see if you have any food, snort and then waddle away, all kinds of different dogs and cats wandering around and plenty of horses to pet. I often take a book and sit on the broken down patio furniture and try to soak up as much as I can before getting back on Mineral drive and dodging lunatic drivers on the way home.

Sometimes I wonder if we get more out of therapeutic riding than Mitchell does only without the horse.

A weekend with Dad

When my Mom and Dad visit from Walsenburg for the weekend, I usually plan a small project for Dad and I, because like me he can't sit still and we can get some quality time together. Last weekend I had him paint a used topper I bought for the truck. He's 87 now, but he remains the family auto painter, ever since he painted my '68 bug black in '78. He also still holds his own when he helps me frame, trim and tile.


A B-25 flew over the house and it brought back some memories of World War II, so I pressed him to get some more stories. Seems he was sleeping in a tent when 30 B-25's flew over high as the trees, sucking all the air out of the tent!


Dad enlisted in the Army Air Corps in 1942 in an effort to head of his eventual draft, so he could have his choice of which division. He had a fascination with airplanes but had poor eyesight, so he knew they wouldn't take him in flight school. He thought he was an ideal candidate for working on airplanes, but just like the Army they stuck him in radio school. He kept falling asleep during class so that ended that. The logic of the Army was twisted for Dad-get everyone up a 4 a.m. and then expect them to stay awake all day. He was stationed mostly in the south at first, mostly North Carolina where he was in one of the first units to try integrating with African Americans, some of whom would eventually join the Tuskegee Airmen. He was then shipped to New Guinea where they lost his papers and he wound up being a cook.


Dad always said the best way to see socialism is to be in the Army, where everyone gets their one job to do, and they don't make waves and sit tight so they won't have to work more than they have to. He also said whenever they ran out of things to do they just marched. If they weren't marching they were sitting in some mile long line to get a gas mask or something. Dad always had a good BS radar, so he didn't always go with the crowd. He didn't smoke so he sold his cigarettes and saved his money for when he had furloughs and then he would travel. Usually on foot. He was often amazed that the Army did so well because from where he stood it was a total disaster. He was and still is angry at Roosevelt for locking up the Japanese, and he always questioned Truman's decision to drop the bomb on Japan.


Being from Chicago he never experienced the type of racism that was in the south at the time, and it surprised him. Many of his bunk mates refused to even stay in the same barracks with blacks, and when a black couple was heading toward him in the street they would stand aside until he passed. Just like Dad, from then on if he saw them coming he would cross the street ahead of time so they wouldn't have to move.


His journey overseas was on board a destroyer, a month long trip much like a sardine can with rationed water and bunks only 24 inches apart. He remembers every time there was a dark cloud approaching the guys all got naked and stood there waiting for the rain (their only chance for a shower) just to have the ship turn away from the cloud at the last minute. This was because they had to zig-zag in order to elude enemy submarines. Dad was sure the captain had it in for all of them.



A cook in the Army overseas meant you get what you get and you better make the most of it. Sometimes they would get endless piles of dehydrated meat and he would have to make different types of meals with the same stuff over and over. The guys got pretty tired of it, but after a while Dad got good at hiding what was really inside. After the Army he owned a small bakery with his buddy in Georgia, but it never made any money, and after that he never cooked again. He'll make a sandwich now and then, but he won't cook.

It's always great to hear those old stories, especially the hilarious way he tells them, and I've done my best to sneak the video camera in when he's not looking. Dad has never bought that 'greatest generation' thing. He's always said that the just did what they had to do. He remembers huge anti-war protests in Soldiers field at the time, but he knew the storm that was coming, and that there was no way America could have stayed out of it.

Though I know it won't last forever, I still feel incredibly blessed that Dad is still around (Mom is still here too, but she'll be another blog) so I'm soaking up all that I can.