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Ethan went to see Dr Rehab on Wednesday.  We came home with yet another prescription.  This is supposed to help Ethan with intestinal gas.  Don’t ask me how but that is the main reason it was prescribed.

Well another trip to the pharmacy today for refills and to pick up this new one.

The conversation is still stuck in my head.  The pharmacist asked me what was wrong with my son, that would possibly cause him to need this many medications.

I’ll give him this. Ethan takes such a cocktail that it makes the mind swirl. He takes anti-psychotics, anti-spastics, benzo’s and that is just the tip of the iceberg.

However I did not have an immediate response.  I was kind of taken aback by the question. I mean, where would you start?

I am envisioning pulling up a chair at the pharmacy window and saying well… HOW much time do you have?

But no, I just sat there with my heart pounding and my tongue tied.

I think I uttered, “Well there is a lot wrong with him” and got the reply “Well, ya, there must be!”

I know all the Pharmacists. This guy is either new or filling in

When he turned away from me, I picked up my purse and left.

Never to return.

I’ll take my business somewhere else.

Its Sunday again.  Something that never stops amazing me is how quickly time flies the older I get.

Sunday,  the declared day of rest,  the celebration day set aside to commune with Heavenly Father, bond with my family, and concentrate on my spirituality.

The day for pot roast and the smell of onions, carrots and celery seeping from the stove and infusing the house with the scent of comfort.

Ethan had a spectacular day.  He was happy go lucky through out the afternoon and brought a huge smile to my face as he laughed and giggled.

Brilliant days like this are gifts.  Rare, beautiful blessings.  I try so hard to capture them.  Like pictures or video, kept in the deep recesses of my mind. I want to savor them.  I want the ability to recall them at a moments notice.

I can’t help but remember the hymn I’ve sung my life long that prompts us to count our blessings when life throws us curve balls.

I am grateful to the very tips of my toenails that these days I see those blessings that are right here under my nose.

Hopefully, when the wind blows the other direction and everything seems dark and full of sorrow, I will remember.

I am feeling particularly sentimental this evening, I’m not sure what has brought this on.

I’ve had a particularly good weekend. It’s Saturday night, late. The house is clean, counters shine, lights low. I am reminded of my one of my favorite quotes.

In the evening,
when every sound lies sleeping,
when all the doors are shut,
and the soul is open,
MEMORIES…
like quiet visitors,
arrive.

And arrived, they have.

I wish I could explain why this song touches me so. It’s beautiful lyrics to some might sound cheesy. However at the end of the day when the world has taken its tole and my heart feels tattered and a bit broken, this song speaks to me. The weave of the emotion, along with the beautiful instrumentals are akin to the kind of feeling I want waiting for me at the door.

Someone once described their home as being their oasis from the world. The place they run to when everything else seems heartbreaking. Where they find solace and peace.

What a way to describe how a home should be. It conjures up a picture in my mind.

It’s beautiful. I just close my eyes and the imagery takes over.

“Hold On”

Didn’t they always say we were the lucky ones.
I guess that we were once, babe, we were once,
but luck will leave you cursed, it is a faithless friend,
and in the end, when life has got you down,
you’ve got someone here that you can wrap your arms around.

So hold on to me tight,
hold on to me tonight.
We are stronger here together,
than we could ever be alone.
So hold on to me,
don’t you ever let me go.

There’s a thousand ways for things to fall apart,
but it’s no ones fault, no it’s not my fault.
Maybe all the plans we made might not work out,
but I have no doubt, even though it’s hard to see.
I’ve got faith in us, and I believe in you and me.

So hold on to me tight.
Hold on, I promise it will be alright.
Cuz it’s you and me together,
and baby all we’ve got is time.
So hold on to me,
hold on to me tonight.

There’s so many dreams that we have given up.
Take a look at all we’ve got,
and with this kind of love,
and what we’ve got here is enough.

So hold on to me tight.
Hold on, I promise it will be alright.
Cuz we are stronger here together,
than we could ever be alone.
Just hold on to me,
don’t you ever let me go.
Hold on to me, it’s gonna be alright.
Hold on to me tonight.

They always say, we were the lucky ones.

I hope that at the end of the day you feel warmth and comfort, that your home welcomes you with open arms and that you know you are not alone. Even if there is no one else with you.

In September- at a parents Deaf Blind Conference, the commission went out, asking for a document written by the parents of children who are deafblind, listing all the things that our children have taught us.

Wow! That is quite an assignment!

I’ve tried several times to sit down and put my thoughts together. So here it is, in the final hour- and I am trying to force myself to finish this project.

I’m a completely different person since Ethan came to me. I feel differently about every aspect of life. To try to document those things, seems very daunting. The life I am living now, is the polar opposite of the one I envisioned for myself. Ethan is old enough, that those things seem in a far off past. I’ve been here in this place, for so long that it is familiar to me. I am content, very grateful for these lessons I’ve learned. At least on a good day.

From the very minute, I learned of Ethan’s existence… my life changed in ways I couldn’t even have conceived of. I was so over joyed. So, excited! I knew things this go-round, that I didn’t know before. I was older, more mature, more aware. I could do things differently. I would have a beautiful nursery. I procured everything new. I would have time with this baby. I would make time. I could change every little mistake I’d done before, and rectify all my parental misgivings.

That is hilarious to me now.

When Ethan’s birth was such a catastrophe, and my whole world turned pear shape, even then I didn’t have a very good idea about the years that would come after. About the changes that would take place with-in me, and in my world.

I think some of the first lessons that Ethan taught me, were trust and faith. I learned in the first three months of Ethan’s life while we were at Primary Children’s Medical Center, to trust my spiritual convictions. Not just to pray, and expect the answers that I wanted, but to recognize that no matter what happens, that life isn’t in our hands.

After we were home from hospital when things calmed down. I was somewhat at a loss as to what to do with this new little life I was in charge of. I gained knowledge. I learned and re-learned and re-learned again- medical terms. I gained the understanding of communication. How to speak to medical personal, and how to listen. I learned over the course of the first year, about the substantial effects, that Ethan would be inflicted with for his lifetime. With this, came confusion and concern, worry and heartache, pain and anguish and once again, the reminders of my first lessons in trust and faith

Unconditional love- ranks right up there at the top of the list. I’ve learned to love, despite the obstacles. I thought that unconditional love was a given. It isn’t. It comes with challenges and curve balls. I’ve been amazed, with how much love Ethan has to give. I’m constantly surprised and delighted with his genuine acceptance and love of everyone. He has no barriers. Everyone who is kind to him is rewarded his trust, smile, and love with-out effort.

Another lesson is perspective. This is one I keep having to re-learn. Perspective. Understanding that every person has their own challenges. Some private and others more open. That driving down the road, wishing you could be like this person or that person is simply foolish. Each person– struggles. We can’t possibly- compare. That has been a big one for me. Learning that NO matter what challenges we have, so does everyone else, those that might seem simple and easy to me, are not simple and easy to others. I’ve learned this in spades.

I’ve learned to look beyond my natural parameters. I see things differently. I see special needs kids in every corner and crevice of this planet. Everywhere I go, it’s like I have a unique set of spectacles that can help me search them out. They used to be invisible. I used to briskly walk amongst the masses, and never take a minute to reach out to people. That is no longer the case. Ethan has given me the gift of Awareness. The world that I live in now is bright and beautiful, filled with all flowers of the earth, colors and textures and beauty that I didn’t see before.

Patience. Ethan has taught me patience. Patience in every sense of the word. Patience with my family, with my fellow men, with my community. It’s not been a pretty lesson for me. I still struggle, and I suspect I always will. All the nights, walking, rocking, talking and trying to sooth or calm him, is barley reaching the cusp of the proverbial iceberg. I’ve learned to be patient with those who are quick to judge and are filled with censorship and criticism. I still will occasionally feel the sting of scrutiny and even much of that is self imposed, but these days I can accept it with a grain of salt. At least on a good day.

I’ve learned Passion from Ethan. That might sound strange, but it is very true. I’ve learned to advocate and educate others about my experience with him. I’ve learned to help others find answers to their queries. I’ve learned to challenge local, state and federal government agencies, when I think there is something unfair. I have testified to congress about gaps in service, and the needs that families face. I have educated myself on the way our State functions, and what it takes to get policy amended. This again, is a new experience for me, and I have found it fascinating.

The most important thing that Ethan has taught me, has been Consciousness. I’m very aware of each tiny, tiny thing that Ethan does. Things that I did not even notice with my other children are huge milestones to be marked, with Ethan. I take nothing for granted. Every time he rolls over, moves his legs, drinks his bottle, every time he does something new for the first time, is marked with awe and celebration. Each bottle of pears he eats, bath he takes, mess he makes, stereo speaker he destroys are things that I am ardently aware of. They are the fuel that keeps me going. They are the results of all the efforts. They are beautiful testaments to all I believe in and hold dear.

Ethan has taught me, that everything in life that I used to value, is meaningless and that the things I took for granted are really the most important.

These are remarkable lessons to learn. All from a little boy, who I was told would never be successful in life- if he lived at all.

Ethan’s face is covered in bright red marks that almost look like blisters and black and blue bruises are coming to the surface across his right cheek and along the side of his ear. The index finger on his left hand is puffy, swollen, cracked and bleeding in places. He has scratches on his torso, along his hips and across his neck.

Why? I so wish I knew. I would give up anything I own or pay any dollar I had if I just knew the answers. Why does he chew on his finger when he is happy? So often and so hard that it splits and cracks the skin open and bleeds. Why does he hit himself, over and over and over in various spots and places? He laughs, and giggles sometimes, but more often than not, his rapid smacks cause him to cry, which in turn causes him to hit more. Why is the eternal question I guess, and I do not suppose we’ll ever really know the answer.

We try to intervene. We try to take a guess as to what he is attempting to express or what is ailing him. We rock him, talk to him, play the music that typically calms him. We do all the tricks we know. A bath, a walk in his wheelchair, more stim, less stim, bottles, quiet rooms. Dark rooms, rooms filled with light. His favorite blanket, new blankets, no blankets.

There are simply no answers.

I feel scrutinized. “You give your six year old medications?” I am asked, in the most sensorus tone I could ever conjure up. I simply nod and change the subject, cringing inside. I remind myself that people, just don’t “get” it. Most of the time, it is easy to blow off. Other times it is not so easy.

Ethan has been doing well lately. Better than ever. He has a new wheelchair that has afforded him more comfort and safety. He seems clearer, happier over all and is far more content generally.

School has been so great for him this year. Though he misses a day or two here and there, he has attended a lot more than he did last year and he successfully stays there through out the entire day.

His tastes in music change and we try to bend and roll with it and adapt. Lately we are hearing more Martina McBride about her never promising a rose garden, as well as the steady stream of Nickleback. He is not as interested in Signing Time like he used to be, but he loves the roar of a football crowd, and basketball brings forth smiles too. When Jay is around they watch Create and Home Improvement shows, and Ethan giggles and laughs at them.

The every day grind of Ethan takes it’s toll. Though I feel like I am constantly complaining, it is very hard. Not knowing what is wrong or what he needs or where he hurts is the most frustrating situation I can think of. The guess work, and attemps failed and even the ones that work are extraordinary.

I feel guilty. Guilty because it is hard. Guilty because some days I throw my hands up in the air and walk away and let him cry because I have tried every single thing I can think of. I feel guilty because I don’t always respond to other people well. I swear if I could program every individual through out the day, with the exact response I thought I would want, they would still offend or bug me.

This is all stuff I have said before. It’s not new or intriguing or smartly written. It’s the truth though.

Tonight, he is sleeping. Not in a bed, but on the floor, where he finally passed out from the “fit” he was having. I look at his beautiful angelic face, covered in bright red marks and deep bruises and all I see, is my beautiful, beautiful boy. I don’t know or understand why he has to endure the bounds of this life, I don’t know why he suffers like he does, but at the end of the day I am so glad he is here.

And tomorrow, we’ll start anew and hope and pray for it to be better.

Its just the way it is.

The world is all a flutter with the ramblings about Tiger Woods. While I personally don’t know much about him, I have been somewhat interested in the way the world has responded to the media frenzy surrounding him currently.

I was listening to Bob Schieffer this morning and I thought his take on the entire situation was dead on.

Life is tough, relationships are work and I can’t imagine the pressure of having my life paraded in front of the entire world.

Here is what Bob had to say–

I was at a lunch in Houston this week where I met one of my longtime heroes, the great home run hitter Hank Aaron. After watching him shake hands and chat with the hordes of people who came up to meet him, I told him it was a pleasure to meet a famous person who was just the way I thought he would be.

Arnold Palmer, the great golfer, was the same way. If Palmer ever ate in a restaurant without being interrupted by a dozen people who wanted to meet him, it went unrecorded. But he always got up, shook hands, and wished them well.

Which is why I loved the story John Feinstein told in the Washington Post about the lunch Palmer had with a 21-year-old Tiger Woods, the year Woods won his first Masters.

Tiger opened up to Palmer. He said he couldn’t be a normal 21 year old because he had to sign autographs, talk to the media, do photo shoots for sponsors.

“It just never ends,” he said.

“You’re right,” Palmer replied. “Normal 21-year-olds don’t have $50 million in the bank. If you want to be normal, give the money back.”

Tiger Woods is 34 and close to a billion dollars now in worth, but as his life came apart last week, he was still complaining about being put upon, about being unable to lead a normal life.

Sorry Tiger, we all make mistakes, but if you wanted to be normal you should have taken Arnie’s advice, just played golf with your friends on Saturdays like the rest of us and I promise you no one would have cared what you did – except maybe your wife

It’s been forever since I posted, and I’m sorry I know I have caused fret with some of you, for the gaps in time I disappear. I don’t mean to cause concern and I apologize.

Our Thanksgiving was on of joy and filled with memories that will last a lifetime. I can’t even describe the differences we’ve had in our family since we have such great changes taking place.

We are grateful for The Bozark’s family who have been so great in helping cultivate relationships. I can’t say, thanks enough to all of those who have put so much effort and energy into it.

I wanted to say, I served our Thanksgiving meal on my “miracle plates”, that I received for Christmas last year. Such a stunning gift, that still leaves me in awe. They looked beautiful on my table and I was so happy to use them.

I feel enormously grateful for my many blessings. I’ve been so humbled by the outpouring of love and friendship that have been shared with us, this year.

Ethan is doing well. Great even. We have recently had some issues with his hip, but I am fairly certain we have identified the issue and it is being addressed. Ethan is successfully attending school all day this year, and has done pretty well. His deafblind interviner is completely amazing and so is his entire educational team. I could not have chosen a better place for him to attend school, if I had tried.

Lots of changes have taken place in our household this year. All of the older kids have moved out and are pursuing their dreams. Each of them facing their own individual challenges and they each are rising to the occasion. I am so impressed with them.

I hope you all have had a joyful season thus far and are looking forward to the celebration of Christs birth, and rejuvenation that comes with the renewal of the year.

I keep writing amazing blog posts in my head. I just never get them typed in and of course they sound so good until I try to write them down. I have hundreds of thoughts through out any given day, where I think to myself “I am going to blog about that”.

Though as I am sure you are aware, I don’t quite get it done.

I have to tell you it is a GLORIOUS day in Northern Utah. The weather is spectacular and we are thus far, having an Autumn. Which is unusual and neat.

I love it.

Just a little under a week ago, we were watching later in the evening, “The Secret Life of Bee’s”, and actually it was almost midnight. Just as we were getting to the reunion of Dakota Fanning with her Father, all of a sudden there was the loud boom, bang, crush, crack and thug of a car hitting something, landing somewhere.

The Bozark ran out of the house with out shoes on, in an incredible hurry. Victoria was trying to dial 911 and it wasn’t going through, and I grabbed mine and dialed.

“This is 911 dispatch, what is your emergency”,

This started a chain of events that took place.

The Bozark stayed with the driver of the car, who had managed to drive clear across the lawn, over a two foot high rock wall and basically land on top of a vintage VW bug and in a tree. The passenger managed to get out and she was terrified and in shock.

It’s all kind of a blur. Police and Highway Patrolman were there.

Our amazing first responder and ambulance team were the first to arrive. Wow.

I know most of these guys. Through the years, for one reason or another we have interacted with them in some capacity. I see them all dressed in their gear, sleepy-eyed and ruffled, hoping out of the ambulance and firetruck with determination and knowledge.

We stood there in the dim, watching the entire crew do their thing. The neighbors from down the road drove down to see if they could help and we watched and watched.

They had to literally cut the brand new PT Cruiser into pieces in order to get the driver out. We initially thought he was quite hurt but soon realized that he was literally so drunk he kept going in and out of conciseness.

They used saws and all kinds of equipment. They cut the top of first and took the doors off, and eventually got the driver out. Ambulances sped away with both occupants. A tow truck called, the mess erased.

Tho for us that see the view everyday notice the differences. The groves left by the tires, the rocks that have tumbled out of their spaces. The crack in the tree a mile wide and the limbs that are still hanging tangled. A little sparkle from the glass glistening on the pavement that didn’t get swept away.

The Bozark has seen hundreds of accidents. The “Crew”, thousands. This one wasn’t too bad. The guy was stuck, but he wasn’t dying. No decapitations, no blood spraying.

Yet, I keep thinking about it. I want to scream at the driver and yell at him. Does he know what risk he put everyone else at? Oh he will have legal consequences. He was taken to the hospital and then transported to jail. Is he really sorry though. Sorry about the things that did NOT happen, vs the potential.

Four or five months ago, there was yet another call. Mother’s Day. Where the same “Crew”, came to the field beyond our house and found a Mom who had been driving way too fast, taking risks. On her way to see her children. She rolled and was thrown 80 feet from her car. One of the responders was her brother.

Potential. The what if’s. The rippling effects of the what-if’s, fluttering through my mind. Thank goodness, my kids were not driving home on the road, so glad another car wasn’t hit. A tree, some rocks, even a vintage car can be replaced. Not life though.

I wonder about our Crew. This amazing group of men and woman who answer a page in the middle of the night, throw on their gear and head out for the unknown.

I’ve had the experience of calling 911 for our family three times. Each of these three times, the “Crew” was there. Folks we know, love and respect there on the cusp of our own personal catastrophe, they rush in, competent, prepared, comforting.

The feeling is pretty indescribable.

As I stood in the cold windy night, watching from afar, these men and woman take command of a scary situation- In awe, I just kept thinking to myself…

Thank you. Thank you. Thank you.

The wind and rain drones on and on outside the walls of our home, and while for the most part I love this type of weather, the weather is just physical evidence of how I am feeling inside.

A year ago today “Then Sings My Soul”, was playing softly through out the house and we had “sugar cookie candles” burning in several different rooms. The tone was quiet. My sister and her family came for a few hours and her husband gave my Mom a blessing.

Blessings are private, spiritual, quite and humble things. For those of you who read, who are not LDS, this is a prayer that is given to those who are weary, ill, heartbroken or over come with life challenges.

I did not, go into my Mother’s room, during this blessing, though invited, I could not do it. I stayed in the kitchen with the little kids. I closed my eyes tightly and prayed for peace.

Hours, later in the comfort of her room, surrounded by the things that brought her comfort. Her bedding, her pillows, the quilt her Mom had sewn for her. Her breathing more shallow and more shallow, my hand in hers, she passed from this life and on to her next journey.

It hurts. Not just her being gone, but once again the reminders of the circle of life. Of my own mortality. I wondered how my children will say their goodbyes.

The days afterwords in my mind are a swirl of activity. The Bishop visiting, planning the funeral. It’s all a whirl.

Over the course of the last year, I have started to remember things. I remember her not ill. I remember the light and love she had. I remember how beautiful she loved things and how important her family was to her. I remember the love she had for her husband. As much as I loved my Dad, not many people could have been married to him.

I am a different person now. Her passing away has effected and changed me.

While I will never understand why we have to endure the lessons in life, that are so hard, I do have a testimony that those challenges are blessings. Even when we fight them.

I miss you Mom.

If ever there was a day that would be perfect for pumpkin picking and apple gathering, today would be the day.

Getting pumpkins were always such a big thing for us. When I was quite young, my Father would bring them to us from his far off travels. Huge bright orange beautiful pumpkins just right for carving or jack-o-lantering.

I love this weather. I love scarecrows, and corn stalks, pumpkins and gourds. Bright fall wreaths adoring the doors and the smell of leaves and the first scent of fires burning cast iron stoves.

It is a perfect fall day. Blue azure sky, puffy white clouds, vivid color all around and the grasses all green after yesterdays rain.

Cider anyone?