Posts

Showing posts from July, 2013

Traveling along...

Image
As we travel along through our amazing country, I am struck by the parallels of this trip to those in the MTM-CNN Community I hold so dear. There are roads I am unaware of, paths that I have never seen, yet there is a common thread that we all share...the road. The journey is expansive, sometimes trying, but then we are struck by some small thing that takes our breath  away. Tonight as we were driving along, a Wyoming sunset appeared in all it's glorious colors. Others experienced the same sunset but I wonder if theirs was the same as mine?
These are the questions...if our journeys are different can I still help someone along theirs? What about those who are stuck and crying? Will my presence or support comfort them?
This weekend is a reminder of how far we have come and how far we have to go... 
I could never have found these travel mates on my own...our children brought us together yet, in the times if trials or joy, there is no one I would rather be with.

Act without expectation...

Image
Move forward, fear nothing...

Exhaustion taking over...

I am attending the 2013 MTM-CNM Family Conference in Minnesota. It has been an awesome event. The opportunity to meet with and learn from other families is invaluable. It is both thrilling and exhausting. Last night I went out with a group of families, then came home and fell asleep. No blogging. Expect a very long and complete blog tonight.

Getting to your goal...

Image
Pursue the dreams that are ahead of you. You never know what's in your future!!

Think Positive...

Image
Today things came to a head (again)...the crying, wishing to go back home, and the denial of a potential dream that has been handed over because of the inability to think positive.

My daughter, beautiful and smart as she is, is struggling to move so far away from home. I understand...it is going to be a struggle for me to have her so far away, but I know that it is for the best...this door was just standing there, waiting for her to walk through.

Here is the time to show what we're really made of...I know she will be successful and I am positive I am going to miss her so much my heart will nearly burst.

But tonight, I savor...savor that my girl is starting a new chapter and beginning a new love. I am proud of her...This is what the love of a parent is...

Be Awesome!!

Image
We all have choices as to how we will respond to different events in our life. We might yell and stomp, curl up in the corner and cry, some combination of both, or we all have a third choice...Being Awesome!

This summer I went to the Model Schools Conference in Washington DC and saw Ray McNulty speak (he is really worth hearing talk!). One of his mantras is that we only have to do three things each day: 1) Wake Up, 2) Be Amazing, 3) Go to Sleep. One could exchange "Be Amazing" with "Be Awesome" and get similar results. Each and every day, we need to be awesome. Whatever the day brings, we must look in a direction where "amazing" and "awesome" live...choosing anything else is a waste of our mental energy.

As I am on this journey, many things have been impressed upon me. One of these is that this is our one shot at life and we cannot look back, especially with regret. Wasting time being sad, frustrated, or irritated does nothing for your mental, e…

Women unite...

Image
We are our own worst enemy...women. When boys disagree, they fight it out, shake hands and move it on. Women, on the other hand, have a tendency to bury their feelings and put on a nice face for others. As a woman, I admit that I have done this before...pretending that all is okay when it is not...looking good on the outside while suffering on the inside. As I am looking inward, I realize that this is an area where I have struggled. I did not learn how to deal with women in my early life and as a result, this has been a challenge. As I think about it, I believe that many women have this struggle...we are not encouraged to work together in the same ways, but show we are "strong" in order to get on top. Strength usually means being the winner. It is sad overall.

My journey of discovery involves building friendships, being more open and honest, learning how to work with other women in a way that is not competitive, but rather collaborative. Women are powerful creatures yes we g…

A thought to ponder

Image
As we are pushing to the end, I found this. A good reminder that we never really know what our future holds, but if we allow it to be, great things will open up for us!! We just have to be willing to take risks and be open to all possibilities!

Just passing through...

Image
Traveling can be exhausting. Even though I am not driving, the rocking of the car wears on every sore fiber of my being. Don't get me wrong...I love traveling with my family and the cutest boy is certainly the best traveler we have...

This trip is representative of so many things...new beginnings, endings, big adventures. This trip represents a change for my family with our daughter's move, hope for our son's disease with the conference revealing new potential treatments and the opportunity to take the cutest boy to Yellowstone...

If I could (and had unlimited money), I would spend my summers driving the freeways, exploring our land, exposing us to hidden gems.

Life is a bit like this...moving forward, not really knowing what is ahead. Hidden gems and unusual finds along the roads of life encourage us to move forward and explore. May we never lose our curiosity.

Heat waves and rat on a skateboard...

Image
Today was the beginning of our trip. By the time we return we will have traveled over 4500 miles.

During this trip my baby girl will take a giant step into adulthood by moving away from us, we will meet researchers from all over the world who are looking for a cure for the cutest boys disease, and see Old Faithful!!

We will take pictures with Flat Stanley and Albert Einstanley, read out loud, and have frozen custard.

This is family and this is what bonding trips are about!!

TIme to be hopeful...

Image
Tomorrow my one and only daughter begins her move halfway across the country to Illinois. It is both scary and exciting. I realize that for now it is more scary than exciting, but I recognize the bounty of opportunity ahead of her and am excited to see what is in her future.

Each and every day is like this move...we wake up, not knowing  what is in our future...we pack up our possessions and then move forward not knowing what is in our future. It can be frightening and exciting. We have to trust that there is something positive in our future.

As we move forward tomorrow, I will send my girl into her glorious future...It is an unknown, but what I am sure of is that is will be amazing!


To-Do Lists...

Image
Whenever we take big trips, it seems like I write a long litany of To-do lists. I have lists of items to pack, items to purchase, books I want to read, things to remember...each of them written over time, over days so that I remember what need to be completed before I go. To-do lists can be critical in making sure that I don't go unprepared, missing some crucial piece of medical equipment for my son, something for my family, whatever...Forgetting something could be a life and death situation for us, making the lists even more crucial than the average person's trip!
To-do lists can also help people find balance. Formulating a plan and writing out the list can give a far better chance for success. 
In the past, I wasn't a real list maker. I have always kept ideas in my head and then worked to try not to forget anything. I have become a list maker, as of late...In this phase of transformation, it is important to know what it is that you're aiming toward. How can you know …

Cry from within...

Image
Have you ever heard a baby's cry? One that cuts deep into your heart? Tonight, my niece was in that place...crying from deep within, tired and hungry, not sure which direction she felt things are coming from.

Sometimes we, as adults, have these kind of responses....emotions welling up from deep within, not knowing which way is up.

This has been a year of transformation...a year of reaching deep within, finding out what I am made of, where I am going, which direction I should be pointing.

Transformation can be difficult...it is a process that requires stretching, pulling...forcing yourself to look from a place deep within. This change can't take place without emotion...emotion is the curtain that separated the dark from light.

Little pink Buddha...

Image
Pink...not my first favorite color, but definitely my second...This is a well known fact among my students, who know of my love for Dr. Who, The Tardis, and Star Wars and the color purple! My son's favorite color is red...red shirts, red shorts, and so on. If he has his way, he would wear red all the time! We brought an all red hat from DC home for him, yet he still chooses the blue and red one (our first choice!). It shows that I do not know his journey...only my perception of it! Tonight I am tired, but am continuing my thoughts on our journey's. Today, although I got an opportunity to validate some math problems and the way they are score, I am continually reminded of my own journey...
So this is my take away for tonight...I am tired, although I am struggling to participate in my work for the Oregon Department of Education, I am a part...a piece that will make things go around.  I will continue my work, but am reminded that I do not really have a plan...My plan is to walk t…

Get Comfortable not Knowing...

Image
I am one of those who likes to know what is happening. I don't like change and I like to have some control of the next moves. This has been true for as long time...maybe it is because when I was younger there was not a real sense of knowing. Everything was up to change at any given time for any given reason or no reason at all. It was a difficult way to grow up.

One of the things that I have been working on is being comfortable not always knowing...this is a serious challenge. After all I like to be in control. Not knowing means that I may not be in control all the time (not to be mistaken with out of control, but I digress).

Being willing to give up some control for emotional freedom is crucial to building happiness. Life is unpredictable, filled with twists and turns. Being in control at all times means that you may not follow a path that you didn't know about or wander a way that you didn't imagine.

Not knowing means the world is open to you...there are no limits on whe…

That's How I Roll...

Image
"That's how I roll..." A phrase such as this has so many meanings, "That's how I do things," "That's what you could expect from me," or literally "That's how I roll (as in using a wheelchair)." This has been a week where each and every one of those meanings has been true.

Life can bring with it many unexpected twists and turns...choosing how to handle those twists and turns can say something about who you are as a person, your character. It shows how you roll. How you react, who you are when life brings about rough times, shows your true character, it shows how you roll.

This last week I have been surrounded by young people in wheelchairs...many of these young people struggling with issues far beyond anything that many of us deal with every day. Their health and strength is challenged every day, yet they continue to "roll."

We could learn a lesson (or two or three) from these young people...when you are challenged or li…

Graduation Day, of sorts...

Image
Today was a Graduation Day, of sorts...a transition for a group of young people from their childhood to adulthood. Moving as young adults, away from a community that they have built, that they continue to influence. Some, in society, may not take complete notice of them. Some of them are in wheelchairs, others have an irregular gait, others still are shy and intimidated by those around them. This community they have built, look at them with an entirely different set of eyes...these young adults are their future leaders. These are the young people that are making a difference in their communities, their world. Each of them has touched this larger community in so many ways.

I do not know all of them well, but I have had the pleasure, over the years, to know a few of them, and I need to tell you, my life is enriched by them. One young woman, a senior next year, will be the president at her high school. She is a dynamic young woman...beautiful and smart, she recently went to visit college…

A hand to hold...

Image
Today the cutest boy had a few visitors...I was in town learning about Special Education Law, but he was having the time of his life. His favorite friend, the One in Seven Billion girl, came to see him, as well as his grandparents. From the pictures, it looks like a great time was definitely had by him and maybe them all as well!

I am reminded, as I uncover the lessons I am to learn, that truly the most important thing that we need is a hand..someone to give us physical contact. It is such a crucial piece that so many of us take for granted, personal touch.

Personal touch can be healing, bring comfort, encouragement, honor sadness, bring joy. I believe that personal touch is often looked over as unimportant. Imagine if you were very ill and in the hospital...would you rather have a hands-off policy or the caring personal touch that friends and family often bring?

I am thinking that you would prefer the second option...why not bring that same joy to someone else..."Be the change y…

a picture paints a thousand words...

Image
Imagine being part of a love like that...what would it take? What would your commitment have to be? Try...I think it is worth it!

Happiness...Freedom...Courage...

Image
I don't mean to write ad nauseam about the mental and emotional journey I am on, but if you are reading this, I suppose you already know it's coming...

Of the lessons learned today, or rather lesson reminded, is the sense of happiness, freedom, and courage. What it takes to find these three things, feel them, own them.

When looking at my cutest boy, this quote comes to full light. Happiness can have so many connotations, mean different things to different people, as does Freedom. When I watch my boy, in a body that doesn't work, I am reminded that I am free in so many ways that I don't realize. I have the ability to move my legs when they are uncomfortable, get up out of my chair, move my feet, trunk, toes, when they are falling asleep. He has to wait for someone to do those things for him...someone to notice, ask him, wait for his growl...yet he is happy. This makes me think that in many ways he does feel freedom...it is just different than mine. I need to honor and a…

Stand up to Obstacles...

Image
Today I witnessed something amazing...children and young adults doing archery. Now, this sounds fairly mundane and not interesting, until I tell you about these children and young adults. Each and every one of them are impacted by some form of Muscular Dystrophy.

It was an amazing sight, children whose strength usually limits them from participating in this type of event, holding the bow and arrow (sometimes with help) and firing. The joy and pride that could be felt in the archery area was palatable. Excitement was in the air (as was the occasional, "Yes!" heard by some.)

One of the more endearing moments was when a young woman in a wheelchair arrived to watch. She was encouraged to try her hand at participating in the "Art-chery" that was being created by campers hitting balloons filled with paint. A counselor, a young man of maybe eighteen, kneeled next to her, teaching her every step of the process, holding her bow to assist in her success. Helping her line up …

Teach me...

Teach me to stop and listen Teach me to stop and listen, Teach me to center down. Teach me the use of silence, Teach me where peace is found.
Teach me to hear Your calling, Teach me to search Your Word. Teach me to hear in silence, Things I have never heard.
Teach me to be collected, Teach me to be in tune, Teach me to be directed, Silence will end so soon.
Then when it's time for moving, Grant it that I might bring, To every day and moment, Peace from a silent spring.
Ken Medema

Finding the Magic...

Image
This week is about exploring what fuels my passion. I know it is children and learning, but this year has dampened the fire within.

The passion for life is located in the magical place...that place where all things that are important reside.

I am looking within...finding my soul, going to the place where the magic can happen...

Passion...

Image
There are so many times this past year that I have struggled with my place.

I have asked myself about my purpose, focus, and, most of all, passion. I want to take my passion and throw myself into it...it is not about what the world needs...this will be about me.

It's time to begin!

Freedom...

Image
This Land that we Love
How beautiful this land we love
We cherish all good people of
With pride we call this home our own
Oh how our seed of freedoms grown
American is what we are
Our time has nurtured us so far
For truth and justice we do strive
Our laws are meant to not deprive
We know we’re not the perfect place
As we are of the human race
In God we trust along our way
His goodness near, both night and day
So please do stop and pray awhile
Ask help in facing each new mile
And now I’ll end with words so clear
Concerning freedom we hold dear
Let Grateful Thought – Well Deep Inside
For Soldiers Brave – Our Country’s Pride
I found this poem tonight and it struck a nerve...Spending time in DC with my son and his girlfriend, watching the fireworks near the Washington Monument, reminds me of what a great country we can be. If we can remember to open our minds, help those less fortunate, go forth with love and caring, expect the unexpected, and extend a hand to others.
It is time for us to remember t…

The Elephant in the Room...

Image
There is a place, where people roam, talk and laugh, but the elephant also lives there. No one looks at it, no one talks about it, but it is there. The elephant stands majestically, hovering above all as if flying, weightless from gravity. People look about, wondering, who might slip and talk about the elephant, the color of it's skin, the timbre of it's trumpet. Standing in the corner, swaying it's trunk from side to side, everyone carefully moves so not to disturb or draw attention to the elephant. It stand, watching the crowd with it's beady black eyes, wondering, patiently, when it will be released from the man-made trappings binding it.

It is beautiful and ugly and painstakingly present throughout all other events. People come and go, but with them travels the elephant...waiting to be acknowledged, dealt with, and sent on it's way. It is an elephant, not thinking or wondering, but rather waiting for someone to say, "Hey, anyone notice the elephant in the …

Expectation vs Reality...

Image
Life is never what it seems...reading the titles of seminars in brochures can be a mixed bag. Sometimes the seminar that you get is far beyond what you could have imagined, while other times what you get is so much less than you ever thought possible. How is it that there is this complex dilemma regarding expectations? How is it that the reality of life can either far exceed (or be far more underwhelming) than one thought possible? You never know whether to expect triumph or tragedy...an ebb or flow. It's like coming to the table expecting the grandest feast and instead being served gruel and moldy bread. Where is the equity?

Expectations versus reality can be a difficult space to have in your brain. Wanting to be realistic about the expectations that are possible while not being defeated about what reality is serving up. Seeing ahead and knowing what the end game is, but being confronted with a winding maze with dead ends and obstacles not mentioned beforehand. The strong put on …

Unquestionable Wonder...

Image
Today was one of those crazy days...the first (full) day of the Model Schools Conference 2013, talks with many wonderful people, coffee that the coffee bar remembers (one of the girls said she tried it after I left the other day!!), and a four hour walk along the National Mall...it was pretty glorious.

I am really working on looking at our new world...a way for us all to work together toward a common goal. Realistically, it might be a bit of a challenge, but it is time to let the past (even if it is near) go and move forward...rebuilding...

There is something bigger here...more than about me or another...it's not about our feelings or whether we like each other or whether we would choose to hang out together at a bar. This is about making a move, being ready for the winds of change. It is time...we need to lay down our arms (not literal ones though, please) and be ready...be ready to have a transformational year. A turnaround year...no agenda, no hidden moves, just a plan to make …