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Independence Day– My favorite holiday of the year.

I’m not sure I am capable of expressing my feelings regarding this day. I feel completely inept, when I try.

One thing I know for certain, is that our Declaration of Independence was inspired. The men who wrote, edited, re-wrote and wrote again before it was signed- were men of God.  They prayed, pondered and prayed again. They soul searched and researched and prayed some more.   I have no doubt.

This day– I hope you take a few minutes and consider that.

I am moved by a speech made my Franklin D. Roosevelt on July 4, 1942.

For 166 years this Fourth Day of July has been a symbol to the people of our country of the democratic freedom which our citizens claim as their precious birthright. On this grim anniversary its meaning has spread over the entire globe–focusing the attention of the world upon the modern freedoms for which all the United Nations are now engaged in deadly war.

On the desert sands of Africa, along the thousands of miles of battle lines in Russia, in New Zealand and Australia, and the islands of the Pacific, in war-torn China and all over the seven seas, free men are fighting desperately–and dying–to preserve the liberties and the decencies of modern civilization. And in the overrun and occupied nations of the world, this day is filled with added significance, coming at a time when freedom and religion have been attacked and trampled upon by tyrannies unequaled in human history.

Never since it first was created in Philadelphia, has this anniversary come in times so dangerous to everything for which it stands. We celebrate it this year, not in the fireworks of make-believe but in the death-dealing reality of tanks and planes and guns and ships. We celebrate it also by running without interruption the assembly lines which turn out these weapons to be shipped to all the embattled points of the globe. Not to waste one hour, not to stop one shot, not to hold back one blow–that is the way to mark our great national holiday in this year of 1942.

To the weary, hungry, unequipped Army of the American Revolution, the Fourth of July was a tonic of hope and inspiration. So is it now. The tough, grim men who fight for freedom in this dark hour take heart in its message–the assurance of the right to liberty under God–for all peoples and races and groups and nations, everywhere in the world.

It’s a bit humbling isn’t it?  Happy Happy Independence Day.  I hope, with all my heart that I never forget the sacrifices paid, the effort made and the valiant men and woman who have made the life I live now, possible.

May we maintain our vigilance and due diligence to keep those freedoms intact.  It is absolutely essential that we do so.  Of this, I have no doubt.

The sun has finally come out from its winter hiding place and the temperatures are starting to rise.  The grasses are green and everything is still in full bloom.  We’ve had quite a “spring”  here in Northern Utah.

Currently this picture is on my profile status on Facebook.  I picked it for a reason, and have been asked a couple of times about it.  S0, on this billowy afternoon, as Ethan is giggling on the floor and I am sitting here looking at the beautiful scenery outside my window–I thought I would delve.

Since having Ethan and the entire cornucopia of experiences he brought along with him, all that I have thought I believed in has been challenged. All the difficult questions we avoid night and day have been inescapable.  Truly teetering on the edge of the “do I really believe” fence- I have walked.

I was reminded last week after seeing a film at LDS Temple Visitor’s Center of my convictions regarding promises given to us by our Savior and Heavenly Father.   This film was a brief depiction of Jesus’ life.  It showed the miracles. The healing of the sick, the blind, the deaf, the afflicted.  Simple video images, accompanied by  amazing music–It was a humbling experience and a powerful reminder to hang in there, hold tight and to be strong.

With out question, I know that someday Ethan will be made whole.  The earthly ties that bind him will be removed and his spirit un-contained. What a transformation that will be.  A body perfect from disease and restrictions. What sheer delight  it will be to get to know Ethan, in a different window.

That knowledge provides sustenance. It brings you through the hard days, and is a reminder to be grateful on the good ones.

Well, that and diet cola, a bit of humor, good friends and supportive family.

So back to this picture.  I can see my boy, sitting in the warm summer sunshine- puffy clouds, hanging out with his dog. A smile on his face–

It will happen– I know it.

“Oh what do you do in the summertime when all the world is green….”

This is a picture of Ethan on the first day of school. He’s quite the handsome man, in his shorts and new t-shirt, all geared up in his chair and waiting for the bus. He has a great new mop chop (haircut) and he’s looking pretty spiffy.

Ethan has done great in school so far this year. I am elated with his progress and with the efforts from his team and all the work that goes in to helping him be successful.

At the Parents of children who are Deaf and Blind’s Annual Conference this year, we were lucky to receive a book as part of the tokens given to each set of parents. It is called, “In Jesse’s Shoes”, and it is a beautifully illustrated children’s book that is written by a sister of a child with a different ability.

I was touched by the beautiful message this sends to kids about bullying, about children that are different and how if we could really “walk” in other people’s shoes, our eyes would be opened in a way, that I don’t think we can pretend to understand.

I believe it is in our nature, to be empathetic and sympathetic. I think we work really hard to be generous and kind. I truly believe that most people strive, to do their best. This story is innocently written about a walk that a sister literally took, wearing her brother’s shoes.

After reading the book, we decided that a great place for this one to reside would be in our son’s elementary school library. So we donated it, with the hopes that when children come across this story, it might help with the conversation that all parents should have with their children (often) about others that are different.

I was incredibly touched this last week, when I went to volunteer in Ethan’s classroom, that our school Librarian had selected this book as the weekly reader. Meaning, that each class would get it read to them during library time. From Kindergarten to Fifth grade. It did my heart a good turn to see the efforts that the staff has put forth to help everyone included.

Ethan isn’t a student who will ever know, teasing. He won’t hear taunts and jabs, or be aware of other folks staring at him or whispering about him. We’re lucky in that regard, because Ethan’s spirit is protected from the knowledge of such things.

Other’s are not so lucky. I am so proud of the changes taking place across the world. I am excited to see awareness posters and disability billboards outreaching to others to promote acceptance and community spirit towards those individuals who are so different from us. I love it.

I think one of the most amazing things about us as humans, is the power we have to change our nature. We can arm ourselves with information, knowledge, understanding and awareness to help change our innate response to things we are uncertain about. What a gift our Heavenly Father has given us. What incredible opportunities we have to allow ourselves to grow past the hesitancy and reluctance that we might feel, when in a position of meeting some one who is disabled, or differently abled.

As a parent, this hope is manna. Sustenance.

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. Helen Keller

I have always been nocturnal. I am sure I was born that way. Early mornings have been a life time struggle for me and as time wears on it just gets worse and worse.

These days I am often greeted with nausea like you can’t imagine and painful cramps in my stomach. After I work through those, I just feel incredibly weak and tired.

No, I am not pregnant. Just sick. Someday, I’ll tell ya about it.

Getting Ethan ready and on the bus on time along with the typical morning chaos is about more than I can cope with. He takes so long to wake up and requires a bath and getting dressed, strapping in him in his wheel chair, and getting him out the door. It seems easy, but it is not.

He is getting bigger and heavier and taller and harder to manage. His fingernails grow at a fierce rate and I swear no mater what I do, I can’t keep them trimmed. Bathing is tough too. I realize I am complaining, again. Just ignore that part of my whiney post. (The Bozark suggested to me earlier today to call the Waaaaambulence…)

We have talked and talked, the Bozark and I about doing something to stunt his growth and doing something medically to him to keep him from getting much bigger. It is one of the most controversial things out there. I would love to have input on what everyone thinks.

There are so many questions. What if’s and how comes. But what it most adds up too is this. Ethan is never going to be capable of making his own choices and decisions. Ethan will never be able to communicate his dreams or his desires, we don’t even know if he has the capability of having them. He is an amazing kid and has done so much more than we ever though he would. Yet… what if.

What if someday we actually learn something about the brain? What if there is some amazing piece of medical technology that comes out that can fix brain damage? What if they can replace the optic nerve, and figure out a way for a brain to get oxygen to it, where before it did not.

What if we think he can’t, but someday he can.

Then where will we be?

When does what is easiest for us, infringe on his rights? What about his personal rights?

But, what if…he is like he is now, forever. What will he look like and how will he physically feel, if he is rolling around on my floor at the age of 45, sucking on a bottle, wearing a diaper. What about his back, will it ache? Ethan already has muscle cramps that cause him to scream out in terror. What will he be like then?

As I stumble around, through the day my thoughts are consumed with all of these questions.

I sure do wish I had some answers.

Up and coming is the annual Deaf Blind Parent’s Conference, for parents in Utah, who have a child with this particular diagnosis. This year the theme is SHOES; Strength and Hope through Other parents Encouragement

I have to tell you, that this gathering of parents is the one place I feel at home. Most of our children are quite similar in abilities and our stories are somewhat alike. They speak the same language as we do and walk a path that is very familiar. Our struggles and celebrations are on the same level and we “get”, the oddities that others outside of this “group”, over look or don’t even see.

There is much to be said for peer-to-peer support. That is what they are calling it, these days. The politically correct way of saying it, at least at the moment. Bringing parents together, to network, share ideas, swap stories, celebrate inchstones that we have discovered over this last year. This conference, provides us respite care for our children, an over night stay at a nice hotel, a great dinner and opportunities to get to know each other.

With the theme being S.H.O.E.S they have asked us to bring a new pair or gently used pair of shoes, to donate to a charity to help needy families. I think this is a fabulous idea.

Our keynote speaker this year, is John Bytheway, and I am betting it will be uplifting and full of encouragement. Which is something I need, and I would be willing to go out on a limb and say other parents need that as well.

Things like this are sustenance through the dark, long, hard hours. Some of the folks we will visit with, will have horror stories compared to ours. Others will be shocked with what we have to say. Either way it goes, there will be conversations that will stay with us. Next year, we will gather again. Mixing and melding and for one brief weekend, everyone there, will “get” us.

That is pretty remarkable.

Box Elder NAMI .

NAMI stands for National Alliance for Mental Illness. This is a nationwide, grass roots, not-for-profit organization that locally provides education for families and supports for individuals with mental illnesses.

The Box Elder affiliate, through fund-raising and volunteer efforts provides our community with classes, education meetings and support groups.

We contribute to a Christmas program that assists disabled adult consumers who have no other opportunities to have a Christmas.

We also provide the community with a Thanksgiving dinner, near the holiday to add cheer and support for the families in our community that are struggling.

We help with school supplies for families who have children with mental health diagnosis, that struggle continuously to meet the demands that families have while they are experiencing crisis.

We have a person that provides families links to community bases resources that are out of the realm of what we can provide. Along with peer to peer support that is so badly needed.

These are just a few of our efforts. Our mission is: To ensure the dignity and improve the lives of those who live with mental illness and their families through support, education and advocacy.

My mission to to complete a fundraising walk, that is being held on September 26, 2009 at the Franklin Covey Field. I will be there, with my team, we are called the PsychClones. Mostly volunteers and consumers alike, walking side by side, to A) earn some money for our programs, and B) to promote good health, and wellness and C) create an understanding amongst the populations that mental health is treatable, there are answers, cures and hope.

To support my “Cause” click on the link here. If you are able, join our team and come walk with us. There will be a great lunch and fun for everyone! I promise!

Eth loves laughter. On TV or off, he almost always responds to laughing.

He loves bantering with his Dad. They Ugg and Ugg back and forth and it is funny to watch. Ethan lays on the floor, arches his back (Like he is doing a back bend) and grunts back at his Dad. Jay can get a good response from him too. Vix and I are most often ignored.

Kambo and Hailey can do a boop boop booop up his stomach with their pointer fingers, ending at his nose with a loud boop, and he giggles and laughs at them, right before he tries to chomp off their fingers.  All is fair in biting and war with E.

He has a giggle ball, that he can grab onto and play with. This is the first toy after thousands of dollars worth of attempts to buy something that interests E.

E absolutely hates Avril Lavigne, Her voice comes on the radio and he starts screetching.  Sorry Avril (whom I am sure is a devoted Lisa’s Ramblings Reader) I have no idea why he doesn’t like your um, singing.

My son, whom I am thinking we might need to test that he belongs to me– does NOT like chocolate. Not even a little bit.  On Valentines Day, I put Nestle Quick in his Nestle Peptimun Jr. Bottle, and he put it up to his mouth, and before he could even suck on it, he threw the bottle across the room.  No chocolate pudding. Zip.  I think this is a crime, and clearly there needs to be some DNA testing.

Ethan’s feet are almost always cold. No matter what is put on them.

My gorgeous child who can not sit or stand on his own, can with in a nano second, wiggle and giggle his way out of his socks!

Ethan’s favorite color is green, and his talisman is a frog !

Ethan can’t tolerate quiet. Music or the TV is always on. Which drives Mom nuts (short drive), but we do what we can to make Ethan happy.

Ethan loves baths, but really hates getting dressed or undressed. He wiggles in the water and splashes so much that it is really funny to watch that kid move in the tub!

Besides biting human flesh, Ethan’s next favorite thing to suck on is the carpet. He licks, bites, tastes and smooches the carpet. No matter where he is. (IT IS SO GROSS)

Ethan loves to ride in his wheelchair as long as you are going over a bumpy surface. Bump, bump, bumpy.  Smooth- um that would be a big heck no.

Just a bit of trivia!

In the days and weeks to come, we will hear more about Larry H. Miller, than we did before he passed away.

For those of you who don’t live in Utah, or know who this man is, I would suggest getting to know him a little bit.  His life left a huge impression on Utah.  He was far more, than the owner of the Utah Jazz.  There is a lot more to his philosophies of life, than his movie theaters, car dealerships and racing parks.

He was funny. He was passionate. He was determined. He lived life. Really lived the American dream.

He will be missed. Greatly.

May his family have peace.

God Speed.

I always think I can change something about myself, and thus cause a change in someone else.

It’s a waste of energy.

I allow myself to be hurt, by others actions, KNOWING they are going to keep doing the same old thing.

A waste of emotion.

I need thicker skin. I need to worry about only myself, and let the cards fall where they may.

Knowing, isn’t the same as doing, and that, is a tough one.

Dear Mr. Gore,

I just drove seven hours in a blizzard the size of Kansas in order to get home from a small weekend trip.  The entire state of Utah received yet another blanket of snow, thanks to our dear Mother Nature.

Since you have been able to convince the world that the earth is getting hotter, and you are apparently positive that we are going into some kind of warming period, I would like to share with you my snow plight.

Please contact me so that I can give you my address. My driveway has needed shoveling 49 times, thus far this winter. We still have a good two months to go.  It’s been colder than ever.  For the first time this season I have seen it snow and be 13 degrees at the same exact time.  Wow. This warming trend is stealthy.

So bundle up my friend, who lives in a 10,000 square foot house and uses more electricity than the town I reside in. Come on over, and bring a shovel. There is much snow that needs removing.

While you’re at it, please bring the awards that you received for posing, quite possibly the largest fraudulent piece of dung to the world. I would like to showcase it in my ice sculptures that linger in my front yard. They were made in November, and yet still have not managed to melt away.

Thanks so much-

Lisa.In.Frozen.Land!

PS: A very good article on climate change