Hurry Up and Wait

After a long wait, I was able to meet with the ENT specialist yesterday. I received a mix of good and bad news.

An audiologist performed a second hearing test, confirming that the ear nerve is functioning properly but my hearing loss has increased. I'm down to nearly 50% loss across the board, and 90% loss in upper ranges. 

Next my ear was checked out via microscope. What was a cholesteatoma growth behind my ear drum has now spread and pushed its way over and down through the top of my ear canal, creating a cyst in my outer ear. This change has occurred in just the last six weeks, which means surgery needs to happen as soon as possible to prevent further growth.

Unfortunately, the doctor's schedule us booked out eight more weeks. I've been put on the writing list for cancelations, so I'll keep my fingers crossed for an earlier date.

The good news is that the recovery time is shorter than I expected. With a busy schedule of events already on my calendar for September and October, I've been worried about how I could shuffle things. Luckily I'll only be down for about five days I stead of the two weeks I expected. 

The surgeon also said that he's confident he can restore most of my hearing with plastic implants to replace/repair any inner ear bones that have been damaged. Because of this information, and inspire of the rest, I'm feeling better after my appointment. 

The next few weeks will still be a struggle, both managing symptoms and keeping up on my schedule. Thankfully everyone I'm working with has been extremely supportive, so I'm sure things will fall together smoothly. 

Let the count down begin...

Hear Today, Gone Tomorrow

It's been almost six months now since I began losing the hearing in my left ear. I joined a local choral group in March and shortly afterward developed what I assumed was a sinus infection. My ears and throat glands have always been the first to suffer when I'm under the weather so this seemed like a normal Spring event for me. 

As the weeks past and the rest of my symptoms cleared, I continued to feel as if there were cotton in my left ear. Voices became muffled, I found myself turning my head to hear. By late May, when our choral group performed, my ear was beginning to hurt. Thus commenced my first doctors appointment in six years, and second in ten. 

The fact that I called a doctor is big for me. I've had a long history of odd medical problems that usually result in lots of appointments, much confusion, and rarely any answers. I've learned to document my symptoms for several months, do as much research as possible, and then contact a specialist when the treatment is outside of any homeopathic options. This is precisely how I went about having my gallbladder removed six years ago. I knew the problem, presented it to the doctor, and it was taken care of. 

This time I was truly naive of the severity of my problem. I honestly thought it was just an ear infection. But after my family doctor couldn't find anything wrong and I was referred to an ENT, it was clear this wouldn't be simple. The ENT was also confused, not seeing an obvious problem and not initially seeing that my hearing loss was a concern. Then he said a phrase I've heard far too often. 'Oh, I've read about this!' He quickly ordered a CT scan and full audiology report. 

As the audiology test proceeded, the doctor's attitude slowly shifted from casual and joking to very serious and cautious in his choice of words. Twice he stopped himself from saying the word 'surgery' and by the end he would no longer make eye contact. I had completely lost just over 25% of the hearing in the left ear, but in higher ranges it dropped to a 75% loss. 

The scan went quickly and easily enough, but when the results came in I had to hear them from a nurse who didn't have any explanations or answers to my questions. The scan showed a cholesteatoma growing around the bones in my middle ear. The doctor himself wouldn't return my calls or schedule an appointment to clarify things. I was referred to another specialist, three hours away. 

The wait to see the specialist was six weeks, sometimes referred to as an eternity. During that time the pain increased, there has been intermittent bleeding in my ear canal, constant pressure as if someone's fist is being pushed into my ear, and I have now developed vertigo that is near constant. Don't ask me to walk any straight lines for a while. My hearing has worsened and my voice echoes in my head oddly when I speak.

I've had to stop singing completely because it just hurts too much. This alone has probably been the hardest part for me to deal with. Music is like air for me.

Today I finally see the specialist, who is expected to run his own tests and then schedule surgery. The only option I'm aware of is cutting behind my ear and removing the cholesteatoma. Because it spreads and essentially eats through bone and tissue, it is expected that the bones of my middle ear are greatly damaged. My hearing is unlikely to be restored. 

I'm a realist, very aware of what the outcome of today's appointment is likely to be. I've had six weeks to prepare myself, so at this point I only hope that we can move forward quickly to surgery. Quickly toward recovery. 

Bad Joke Tuesday

So there's an insurance adjuster, a neurologist, a Russian sales manager, an optometrist, and an 18th century Austrian composer. No really, it's not a bad joke -that's my Tuesday. 

Hoping that the first few on the list lead to some answers. Answers such as 

Why is the toilet flooding the house? 

Should we give up and build an outhouse?

Why does my child keep having full body twitch fits and trouble walking?

Is it diagnosis A, B, or X? What test is next?

Has the computer system been fixed? Do I have a contract? 

Just another Tuesday... wishing I could add a magician and a chef to the list!

 

Distant Cousins Who Live Distantly

I often discuss how certain experiences can bring otherwise strangers together, sometimes closer than family. This is true of my military friends, now scattered around the world. We have a bond, a survival experience, that is unbreakable and incomprehensible to anyone that hasn't lived some thing similar.

My Autism family is much the same. We've been sent on a journey many will never understand, never have to walk. A journey that can sometimes feel lonely and out of our control. Finding those connections with other families on the same path, whether down the street or another country, can instantly make that weight of the journey lighter.

In seeking answers and support, Facebook is the go to gathering place, and thus I found myself in a group of moms from around the world facing my same daily struggles. After a few weeks I began noticing another mom frequently commenting, offering suggestions, that seemed to have children closer to the age of mine. Teens instead of toddlers. Then I realized we shared a maiden name, a name with an uncommon spelling.

And so I reached out to this woman three states away whom I'd never spoken directly to. We did searches, and found our connection beyond just Autism and the coincidence that we both have T-shirt businesses. Sixteen generations back, in a small village in England, our great-grandfathers were brothers.

Two years later we share a sarcastic sense of humor, cheer each other on during moments of chaos. We share triumphs and pains. We share a name, genetics, a history, and a journey. She's my distant cousin who lives distantly but helps daily . A reminder that life's adventure really is all relative.

Thirty One

There's a card game, called Thirty One. My husband loves it, but he never wins. It was one of the first things he taught me after we were married, even before my indoctrination into Star Wars. He didn't realize, and still somehow doesn't believe, that I'm great at card games. At least card games with face cards, Rook is a whole different story. 

It is a simple game, everyone only needs three cards. The goal is to have the total number equal Thirty One or have three of a kind. Nearly every hand he magically deals me the cards I need to win or the final card for my set is at the top of the draw pile. I notoriously continue to draw and discard without entering the cards into my hand just to let him have a few rounds to possibly gain a winning hand. But it rarely happens.

He just asked me to play and I suggested he play with the kids instead. So I'm listening as he teaches our 15 and 12 year old boys how to play. And our younger son is catching the loopholes in my husband's directions. Jokers are wild? Then I say this one is thirty one!

My poor husband... nearly twenty years and now I'm having to teach the kids how to let him win.

Where There is Water...

...there is usually even more water. If it is connected to a pipe, it has probably flooded my home. In the last five years we've enured water damage from leaking toilets (that have flooded the room below them), exterior faucets that have frozen and poured water inside, sinks, water heaters, air conditioning units, etc. 

We've seen everything from full spray from a faucet-less sink to a foot of standing water in the basement. From the ceiling crashing down from water weight to parts of a toilet dropping into our kitchen. 

We even had one home where not a single window was properly sealed so water poured in every time it rained... and we lived near Seattle, where it rains a lot.

For us, the sound of dripping is one of the first signs of Spring.

In high school Home Ec class, I was paired up with a group of other kids as a "family."  Our family spun a wheel and drew cards from a jar to determine our life's triumphs and disasters. Two guesses what type of disaster we drew several variations of... yep, floods. Come to think of it, I believe I took the class in Spring. 

In the Beginning

August 1974- July 1975

 

 My parents had gone to rival high schools in central Washington state before meeting as performers at the 1974 World's Fair in Spokane, WA. I'm sure there's an 'I come from circus people' joke in here somewhere. The World's Fair has only been held in the US again once since then, in New Orleans 1984.

They dated for mere weeks before marrying that November and moving into the student housing at Eastern Washington University while my dad continued his schooling. The day after their wedding my mom announced she was pregnant, and just shy of nine months later I proved her right.

My twenty year old mother had her hair in braids during delivery making her seem even younger and convincing the nurses that she was a teen mom planning to give up her baby. Thus it was hours before she could convince them to let her hold me. 

I was named after, wait for it... my mom's high school boyfriend's wife. Yes, you read that right. But since my dad has brothers name Mike and Mark, my sister was named Marcia to make it appear we'd been named after our uncles. What my parents didn't realize is that Mark had been named after grandpa's old girlfriend Marcia. 

Many years and a dozen moves between 5 cities later I would become close friends in high school with two other girls born at that same hospital that same weekend. Fast forward another fifteen years and ten moves- I discover that another new friend was the daughter of the woman I'd been named for!

I've always found it interesting how the world brings people together, how much more connected we are than we ever realize.

More Answers, More Questions

Two nights ago I had nightmares that my son collapsed from his tremors. From tremors... When I woke up I realized we haven't used the word 'tremor' in a few years. We've been referring to his recent episodes as 'seizure like' or 'Tourette's explosions.' But 7yrs ago, at the age of 11, on his list of diagnostics just below Asperger's and Tourette's is the word Tremors....

He's had 3 more episodes in the last 2 weeks, he had a doctor appointment last week and we've been referred to a Neurologist but everyone seems confused. I KNOW these dreams were my push to search for help in the right direction. Just like fifteen years ago I KNEW something was wrong with Geoff's skull.

I didn't sleep much, was awake for good at 4am and started searching... First I came across MS info that seems close but not quite. Then I saw Parkinson's and I just knew. Reading through the symptoms it was hard not to cry. Out of 10, 8 are a solid fit and the other 2 have occurred just not as consistently. At the same time, I feel relieved?? It's like the sun came out when I saw the list of symptoms. Such a twisted combination of known and unknown, relief and fear.

I finally said something to Doug last night as the kids were getting ready for bed. My husband, who is the fact checker, the one who doesn't believe without 3 witnesses and a signed document. He stopped, thought for a minute, and nodded his head. Then he went into the kitchen to talk to Alex, returning with a grim look on his face and nodding again. It all fits. The full body tremors, the recent hearing loss, the trouble swallowing, the legs buckling when he stands...

I told him that I don't plan to say anything to the Neurologist until he's fully evaluated things and then ask him to rule it out if he hasn't already. Doug told me I should say it up front, because I've never been wrong yet on a diagnosis and we can't wait for them to figure it out on their own. I've been down this road before, with the Spirit literally yelling at me to help one of my children because no one else could see what was wrong.

This whole last month has been so insane, swinging from the realization that he's an adult and mentally capable of doing all those adult things I somehow never planned for but now the realization that while he may finally be mentally capable his body is completely revolting. And of course I can't tell him yet, can only assist him in tracking his symptoms while we wait for our appointment with the Neurologist. Continue living in medical limbo.

Run Aways

Today seemed like every other day until I returned from taking Madi to school. The garage light was on, doors open, and my younger 2 boys were gone. I'm sure you can imagine the panic running through my head as I went back and forth between thoughts of them playing a trick and hiding or being kidnapped. Neither were true. After 5 minutes of frantic searching and yelling I saw a shadow through the window by the front door... they were standing on the porch debating whether to come inside.

Life for my two middle schoolers has apparently become harder then they wanted to admit or could handle. They told me of their frustration with being overwhelmed in class, not being able to focus on the directions given, and then feeling they would get in trouble at home if they complained. 

My 14yr old had been planning this since Christmas, bringing my 11yr old into the plan in February.  Official plans has begun weeks ago. Geoff had printed maps at school saying, 'you'd be amazed what they let you do on the computer if they think it's for a project.' Water bottles had been filled and placed in the fridge days ago. Survival backpacks had been refilled with blankets, rope, extra clothes, books, CD players, a bag of change, flashlights, and an umbrella.

They planned to head West on their bikes toward Benton City, Prosser, then on to Seattle where they'd clean people's yards to earn money and eventually sell their bikes to purchase plane tickets. The goal was travel to LA, then Florida, New York, and finally Paris. Big dreams unlikely to happen but I have to give them points for planning.

Obviously my little actors had us all fooled that life was okay. We failed in a big way to see how much they were really hurting. Life will be making some big changes. I'm still not sure what changed their minds and made them come back home, they had already made it a few blocks away. I'm just glad they did.

Have you heard my story about Autism?

Another blog I follow, Welcome to StimCity, asked yesterday 'What is your Autism?' I saw the question when it first posted but didn't have time to comment. Today I read through some of the many beautiful words written and realized I needed to share as well. For each of us affected by Autism it means something different. This is what it means to me.

My Autism is...
Trusting that God has a plan for my boys that I can't yet see.

Being daily amazed at how far they've come, realizing that it's because of our combined strength, and knowing that I've been given a great gift to have them as my children.

Struggling to contain my emotions at school meetings, doctor visits, church activity, family gatherings or anywhere else where they may be judged as different. Avoiding taking them shopping because it's too hard for me to remember what I'm there for and still keep my boys from falling apart. Creating great adventures at home where we are 'safe' from the outside world.

Wishing I had more than 2 hands so I could hold their hands and rub their back at the same time. Finding new ways to make my little guy feel snuggled... without actually touching him. Wishing I had more time and energy to make all their food from scratch to avoid the dozens of allergies they each have. Making at least two, and often three, meals for every meal for my family of six because no one can/will eat the same things.

Having an extensive knowledge of all things Nintendo, Pokemon, Star Wars, Super Heroes, and Thomas the Tank Engine... because occassionally it can earn you extra 'Cool Mom' points or be the only thing that saves me from a public meltdown.

Going to school meetings, not just for my boys but for my friends' children, and fighting for changes in our local school districts. Being quick to call in the media when any child is treated unfairly. Fighting for teachers to attend our annual Autism Conference. Figting for a resource center to help families receive diagnostics and therapy. Creating a website for our support group that has information useful to families on a national level. www.aswtcc.org Printing piles of information to share with the pediatrician who's only reference for Asperger's was a paragraph at a conference six years ago.

Adjusting my work schedule as a bridal boutique owner to manage 5 trips to 3 schools per day to transfer my own and friends' children to and from. Making myself available to offer respite to other families as often as possible although I rarely receive any myself. Homeschooling part time because middle school is rough without being afraid of public restrooms, easily confused in crowds, fear of busy places.

Trying to explain to my mother why having my boys visit for a week or even two is more complicated than just getting them there, why I have to create a menu for her, why my youngest may become violently ill the night before the trip. Because that is his current pattern, how he avoided 4 field trips over the last three months. How her living at the top of a mountain away from the city doesn't mean it's safer for him. How she can NEVER let him out of her site. How eleven really means six, and how sixteen just recently meant older than ten with the possibility of fourteen.

Convincing my father that one on one swim lessons are the ONLY option because my son nearly drowned three times last attempt, and I was the one to pull him out each time. Convincing him that having the summers off is a good thing, lets my boys decompress, is the only way we can have a good start to the next school year. That not every boy needs to be an Eagle Scout.

Being the 'Mama Bear' more often than I wish I needed to, but being grateful that my oldest is finally coming into his own and not needing my defenses so much anymore. Grateful that he blends in at school now, that he is a defender for his friends that still struggle, that I know he will be okay living on his own soon.

Not sleeping more than four hours per night, because I can hear them tossing or getting up multiple times or the coughing tics that never quiet. Because I worry.

Having amazing people blessing my life with their support, their knowledge, their strength. Knowing that without them I wouldn't have known, wouldn't have learned so much, wouldn't make it through the hard days.

Learning a new language, a vocabulary of acronyms, therapy techniques to use at home because we will never quite qualify for anything official. Knowing that no one ever just has Autism, that there is a myriad of other diagnostic terms and languages to go along with it. Becoming friendly with the words tic, stim, squeeze, flap, OCD, ADD, anxiety, panic disorder, etc. Knowing that the doctor who diagnosed my son with oppositional defiance and told my husband and I we need parenting classes had obviously not read anything his teachers had written about how helpful and sweet he is. That just because the doctor said it doesn't make it true, it's all just based on opinions and an hour with my child does not make you an expert. It's okay to fight back, to trust your gut. Most times moms are right.

Quoting laws at IEP meetings. Having a list of resources at my fingertips to help the mom of a newly diagnosed child. Maintaining my composure as we talk, as I relive her moment of realization. Making an army of friends around the world I would never have known otherwise.

Losing my spontaneity, having to plan ahead for the smallest change or adventure. Knowing the fine balance between giving this child enough warning and that child too much. Refusing to give up my sense of humor, always being the one to see the silver lining. Making music and funny business a part of our routine, making change a part of our routine. Accepting that it's okay, even better, to be different.

Loving all my children for their uniqueness, celebrating every achievement, hugging them every chance I can. Knowing it will be okay, that I've been blessed to be their mom.

Have you heard the story about my sister Alicia?

My little sister Alicia's birthday was last week putting her at the front of my thoughts until I had to put in words all that's been swirling in my mind. She would have been twenty six years old but instead, due to uncooperative organs, she never saw her second birthday.

I've often struggled with how to reference her, especially in situations where people have known my family for a long time but have never known of her. Counting Alicia I have five sisters. I feel sorry for those who never got to know her.

A friend recently shared this story which was so incredibly painful for me to read. It's the story of a little boy who had a near death experience and met the sister his parents had miscarried before his birth.

This story has stirred up memories and reminded me that my little sis is never far away.


A Sister’s Song

Has it really been so long since I held you in my arms?
The years of agony and grief at not protecting you from harm.
In my childish unknowing I blamed myself for so long,
How could I understand at such an age it was God’s plan to bring you home.

Hallelujah, for His plan
To join families forever, offer mercy to each man.
Hallelujah, for His word
To share forgiveness with his people.
Offer praises to the Lord.

I can see you just as clearly as if you were standing next to me.
The beautiful young woman I knew you’d grow to be.
With Marcia’s long dark curls and Mary’s big blue eyes,
Angie’s freckles and ambition and Drew’s mischievous smile.
I see Mom’s grace, Evan’s chuckle, and Dad’s quiet reserve,
And I like to think in Heaven you and I once sang a verse

Of
Hallelujah, for His plan
To join families forever, offer mercy to each man.
Hallelujah, for His word
To share forgiveness with his people.
Offer praises to the Lord.

Although they don’t remember, I know you hugged our brothers
Before sending them off into this world.
And I’m sure I’ve heard your giggles playing with my little girl.
I bet you’re spending time with grandpa, so quick to join you there,
The two of you in Heaven must make quite an entertaining pair.

Someday I know we’ll meet again,
I hope I don’t disappoint you before then.
I’ll try to live in such a way
That you’ll be proud of my example every day.
Until we meet again I’ll sing

Hallelujah, for His plan
To join families forever, offer mercy to each man.
Hallelujah, for His word
To share forgiveness with his people.
Offer praises to the Lord.
~Michelle

Have you heard the story about April?

I love Spring. The flowers blooming, the sun returning, thunderstorms and new beginnings. April is especially important to me.
Today is mine and my husband's 17th anniversary. Seventeen years of ups and downs, drama and adventure. Eleven moves, eleven years with the Navy, four kids, four surgeries, and inumerable laughs. I'll come back to the anniversary bit in a moment...
Our oldest son was born at the beginning of April, turning sixteen this year. There's nothing like having a teenager to make you feel old, haha.
For the second year in a row, we spent Easter weekend at my sister's home in Idaho. Ten adults, fifteen kids, and surprisingly little craziness!
This April was filled with a few other exciting (and hopefully less annual) events such as Geoff breaking his nose and my purchasing the bridal store I've been working at. Both are changes that will leave a noticeable mark on our lives and hopefully improve our character a bit.

April is also Autism Awareness month. In the past few years that has meant more focused participation on local events to help promote awareness in our community. This year I've just been too busy to contribute as much as I'd like and quite frankly my kids are doing so well that I sometimes feel guilty attending free things with my 'normal' looking kiddos. I have been uplifted and inspired by many friends, both local and abroad, but have stayed carefully inside my bubble of content this month. Today, however, kicked my butt and reminded me that no matter how much I want to pretend the Autism is always there.
Our plans for the day included my spending a few hours at work while hubby and the kids spent time with friends at the park. We had hoped to make it to an Autism event but weren't able to squeeze it in before a birthday party for another friend at Chuck E. Cheese. I should have seen the warning signs as I watched Spencer play with his buddies, but I did a great job of ignoring them instead. He had wandered from the group, unaware of where anyone else was, and was gnawing on his tongue... something I hadn't seen him do until this week. Alex used to do it all the time. Once the party was finished Spencer started on a vocal loop of requesting to go home with his friend over, and over, and over, and over. Thank goodness the other mom was an understanding smooth talker and was able to assist in redirecting his request.
Two hours later the kids were fed and Doug and I were getting ready to go out for the evening, for wat is usually our one and only annual attempt at a date night. Then Spencer stumbled to the living room and dropped into my lap. My little man isn't so little anymore... At almost eleven he's not a big fan of mom's hugs so it was a rare thing indeed for me to have him snuggled in my arms for over an hour. He hurt but could only respond with 'I don't know' for most of the evening. After a lot of snuggling and blocking out the world he seems to be okay again but we are spending yet another anniversary at home.

The following is a quote I've borrowed from another Autism mom that seems to fit perfectly this last day of Autism Awareness month:
'Wouldn’t it just be lovely if after Autism Awareness Month was over we all got one day – just one, single solitary day when we didn’t have to be AWARE of autism? Just one, God. Please. For my friends. For their kids. Just one. Amen.'
~ A Diary of a Mom

Have you heard the story about the Armchair Activist?

I'm not sure what triggered it, but the phrase Armchair Activist has been buzzing in my head all weekend. Maybe it's our current political unrest. Every other news story seems to be about another politician making a major gaffe or attempting to enact an insane law... and then the commentary begins. There is such division in opinion betweent the population when for the most part (if you listen close enough) we're all really asking for the same thing.

I am a listener. I love a good story, I love hearing how someone made it through a challenge and how that has changed them.
What really gets to me though are the intensity of comments from what I consider Armchair Activist- a lot of talk and no action.

If you have survived or accomplished any of the following, pull up a chair and spin me a yarn. I want to know YOUR opinion of how and why things need to change.

If you (or your spouse) have ever...
1) staged or participated in any type of protest or rally.
2) attended and or spoken at a city council or town hall meeting.
3) chosen as a career or volunteered as a firefighter, police officer, or EMT.
4) chosen a career as a teacher or volunteered on a regular basis at your local school.
5) been part of a PTA, volunteered at an animal shelter, worked in a nursing home, donated blood regularly, or worked with such groups as United Way or Habitat for Humanity.
6) owned or managed a small business and navigated the complicated tax and employment laws.
7) served in any branch of the miltary.
8) been employed by or volunteered to work for the government.
9) run for and/or served in any government office.
10) fought for better treatment of a family member's injury or illness.
11) taught your child at home because the current education system is not equipped to assist them in achieving their potential.
12) volunteered with a support group organization to better serve and educate the public.

Now, since I can claim participation in all but 2 of these activities, I will share my opinion just this once.

We are blessed to live in a free country, to believe and preach as we wish. We are blessed to have a great number of our population willing to sacrifice their time and energy to make our world a better place. We are blessed to live in a time of connection and convenience.

Our system is broken, too many (but not all or even most) of our politicians are corrupt. Too often decisions made by our leaders are based on personal preferance rather than what is truly best for the public. Projects are short sighted and underfunded, red tape is thicker than many can ever cut through, and support for those in need has become far too corrupted with monies syphoned to those much less deserving and projects much less useful.

My request to all is that you stand up, stretch your legs, and take a step away from your armchair. There's a big world out there waiting for your help.

Have you heard the story about Sundays?

We coined a new phrase in our house this morning. We're not inactive, we're neurologically challenged.
Sundays and I have had a love/hate relationship for years now. Ever since my oldest boys were little, we've struggled with making it to and then through our Sunday church meetings. Our little family of neurological chaos combined with following Sunday standards has never been a joyful even. The OCD means layered clothes, zippers, buttons, & ties never feel right (and there are just so few modest dresses for little girls!) leading to multiple changes (and lots of sobbing) plus shoes come off as soon as we enter the building. Sensory issues mean church is always too bright, halls are too busy, music is too loud, and people are too close. The ADD means we are always fidgeting, talking when we shouldn't, and have trouble focusing on the lessons. The Tourrett's adds in a level of distraction with coughing & throat clearing, plus random stretching and neck rolling.
Let's just say we rarely go unnoticed. The anxiety levels increase ten fold on Sunday mornings just trying to make preparations for all the possible factors that could lead to a meltdown.
When the boys were little there was the added bonus factor of my being a "Westpack Widow." With hubby on the other side of the world, I fought my way through Sunday mornings if only for the reprieve that for 2 hours some poor Sunday school teacher would have the privilege of handling my kiddos while I soaked in the rejuvenating calmness of my own classes.
As they've gotten older the battle has become harder and I admit that I've begun dreading Sunday mornings. While meeting together with friends to learn Christ's gospel is still very rejuvenating for me, the process of getting my family through the doors had become overwhelming at times. By the time we arrive I am exhausted, rarely in a positive mood, and having a hard time not being distracted by my families idiosyncrasies. I miss the days when they were small enough we could hide in the mother's room.
So many mornings have been spent wrestling my water sensitive little man through a shower and into a tie; being kicked by him all through sacrament meeting as he repeats the words "I want to go home, I want to go home." Energy has been drained begging another child to come out of the bathroom or waiting in a corner with him until the halls are empty enough that he can calmly make it to class only to hear from his teacher that today he only hid under his chair for part of class. Meetings have been spent sitting in the hallway with my oldest son's head in my lap as I rub his back and try to calm his Tourrett's & anxiety.
I have to acknowledge how much I appreciate our wonderful church friends for not judging our squirrely little family or our lack of participation. Please know we want to be there and are grateful for feeling so welcome when we do make it through the doors.
Today we were so close. Three of us were ready, number four was almost there, and five & six had been given sick leave. Then number four fell apart, crumpled in tears because her OCD had pushed her over the edge. We were so close.
Today we made a new plan and pray the stars align for us next week. And thank a loving Heavenly Father for knowing our intentions, recognizing our struggles, and giving us the strength to deal with them.

Have you heard the story about Music?

Any one that spends any length of time with me knows that music is a HUGE part of who I am. I can't drive down the road without the radio playing, can't clean without my mp3 player on, and connect most major memories to songs. I'm constantly turning conversations into silly songs, this week's run has been little tunes about the kids to keep them moving.
Music is my key to surviving all the nonsense that life throws at me. Different points in my life have required different theme songs, sometimes ironic or funny and other times simply accurate to the moment. My latest theme song for several years now has been Rob Thomas's Unwell. All my kids know every line and Geoff can often be heard belting it out as he walks home from middle school.
Music is often also my inspiration and the only way to calm my sensory sensitive kiddos down on especially bad days. Today was one of those days. It began with Spencer crying his way to school for the second day this week and finally convincing a few watching administrators that something has to change. Immediately following that wonderful scene I spent some time on the phone with the assistant principal discussing the stress my middle schooler is feeling, also due to his sensory processing issues. After this particularly painful attempt in getting all my kiddos to school (and not fully succeeding), I rushed to work with a still crying little guy in the back seat.
Rounding the corner to work I got a new theme song. I've heard it hundreds of times, but today it hit me a little harder than before. As I felt the words sinking in, I cranked up the radio and listened as my Spencer hummed along. Thank you Rob Thomas for making it all okay again.

Someday- by Rob Thomas

You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry

And maybe Someday
We'll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Now wait
And try to find another mistake
If you throw it all away then maybe you can change your mind
You can run, oh
And when everything is over and done
You can shine a little light on everything around you
Man it's good to be so warm

And I don't want to wait
I just want to know
I just want to hear you tell me so
Give it to me straight
Tell it to me slow

Cause maybe someday
We'll figure all this out
We'll put an end to all our doubt
Try to find a way to just feel better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Resolute

After a quick review of 2010, I have decided on one simple goal for 2011: to wake up. I realized this last week that the traumas of 2009 seemed to trickle into 2010 and I all but gave up trying in many areas of my life. I closed my eyes and ignored what I didn’t have the brain power to acknowledge and let slide what felt like too much effort. Not anymore.
• I plan to take a closer look at how I schedule my time.
• I plan to review each week with an open mind and make adjustments.
• I want to look in my children's faces as they talk about their day and enjoy
their reactions to the new things they discover.
• I want to see those around me for who they are trying to be and recognize
how my actions might affect them.
• I plan to be alert to the opportunities presented to me, both for my benefit
and to benefit others.
• I plan to step back and absorb the beauty in the world every chance I get.
• I want to smile more and see my friends’ eyes light up with joy as often as
possible.
• I want to take a hard look at myself and make some much needed changes for
my health.
Here I go, into a new year with eyes wide open! Happy New Year friends!

Have you heard the story about my Friends?

School begins again for my four not-so-little-anymore monkeys in just a little over a week. As the first day approaches I always find myself thinking about all those first days I had, several of them being at new schools. Between preschool and senior year I had the joyous opportunity to go to seven schools in five cities. I was usually the quiet kid in the back of an advance placement class hoping no one connected me to my uber-smart and social younger sister or my extremely outspoken mom.
I had a close friend at each school and tried to hover in their social circle but never really felt like I fit in. This pattern has stayed true through most of my adult life as well, keeping one close friend and hovering around another crowd. I've never felt that I had "lots" of friends... until tonight.
In the first quiet moments I've had all summer, it hit me that the central theme of my entire last year has been friendship. I have had amazing, dare I say life changing moments, connecting with new and reconnecting with old and dear friends. The funny thing is I owe most of it to this crazy internet! Thanks to Facebook I've rekindled friendships with teachers I had in grade school and 5th grade time capsule friends; been able to cheer on middle school friends as their newborn underwent surgery; found, hiding in his hermit cave, one of my favorite high school friends; seen pictures of friend's weddings and children even though they live many states away; and kept in touch with my military wife friends who's husbands are still serving diligently.
I've also made friends in unexpected ways, like the wife of my sister's high school friend that has been mo-tivational in her drive for a healthier lifestyle; the friends of friends in the Autism community all around the country supporting each other as we watch our children struggle and succeed.
My job as the manager of a bridal shop has been another unexpected way that I've made new friends this last year, specifically with our revolving door of new employees. There are currently five incredible ladies that I work with, but five others have come and gone, none of which I would ever have bumped into in my "regular" life. It's been a difficult thing for me to learn how to juggle being in charge and still being a friend, I've learned a lot about myself because of this. Working with brides has been a bit of an eye opener to me on friendship also. Seeing those girls that wholeheartedly support their friends and then the others who tear down every choice the bride makes.
All of these little moments have made me more aware, and even appreciative, of who I am. Here's what I discovered: I am smart, I am funny, I am determined, I am cautious, I over think things, I am creative, I am an author, I am a musician, I am generous, I love history, I am allergic to much, I am not as healthy as I'd like to be, I am daring, I am a wife and mother, I like order, I don't like flying, I still get car sick, I love to laugh, I am a dancer, I like to talk in funny accents, I get tongue tied, I love to read, I like to build things, I have survived great challenges and I am prepared for more.
Who'd have thought it would have taken 35 years to figure this all out. So next time you see me, if I seem to stand a little taller and look a little happier its because I know you are my friend... which makes you just as amazing as me.

Have you heard the story about Tessera? part 1

As a grade schooler living in Spokane I was lucky enough to participate in the the Tessera program. It is similar to Kennewick's KOG and Richland's Gate programs... but, in my humble opinion, so much better.
To gain entrance, second grade students take a test to rate their academic, intellectual and creative ability. Those in the top 3% (yes, I was that awesome even at age 7!) of the district are invited to participate, but participation is always voluntary. From third grade through sixth I spent one day a week at Tessera (in a school across town) learning with a group of students from all over the district. The rest of the school week was spent with my regular classes.
My particular neighborhood, and thus elementary school, was much closer to the bottom rung of the social and economic ladder than the top. Yet there were about twenty students from our school that enjoyed the benefits of learning at Tessera.
I loved this weekly field trip and looked forward to the creative projects we worked on. One year was spent studying Japan, another Egypt (I had big plans to be an archaeologist after that!), another on creative writing, and in fifth grade we dreamed of the future.
In May of 1986 my little class of roughly twenty students hiked a trail along the Spokane River and buried a time capsule. We filled it full of our hopes for the future, sketches of what we thought that future may bring, letters to ourselves, an audio tape of our voices, and a trinket special to each of us. After counting our steps we drew what we expected to be a useful map and made plans to return to the site at noon on July 4th, 2010.
I had the honor of joining a few of my fellow classmates last weekend as we searched for our little hidden treasure. Wade, Jonica, Shauna, Vaughn, Aaron, Garrett (via phone call from France) and I laughed as we wandered the trail with our families. Two of our favorite teachers, Linda Andrews and Jayce Keeling, were also able to attend making it even more enjoyable. We discovered that we were not meant to be cartographers! Our humble map seemed to match a few locations but none contained our precious time capsule. As sad as we were about that, it was wonderful to renew old friendships and remember a time when life seemed so much simpler.
This last week I've thought a lot about those long ago times and friendships left in other cities. For me, that Spring was a turning point in my life, when innocence was lost and reality set in. The next year brought many changes- a move from the big city to the mountains as well as the loss of my youngest sister and favorite gandfather. Other changes were more internal and stirred by my participation in Tessera (see part 2).
So, while we may not have found our time capsule we were able to rediscover great friendships and long forgotten moments of our youth. That's better than any hidden treasure.

Have you heard the story about Rook and Kickball?

My siblings and I, like most families, are very competitive and love to play games when ever we get together. Dad was the main instigator in our gaming passion, but it was years before we realized just how integral he was in how we played the game.
When I was in high school I'd have friends over for game nights and it didn't take long to notice I was playing every game all wrong. You see, regular rules aren't good enough for my dad. He rewrote the rules to Risk because it wasn't challenging enough. Yes, our game board has hand written numbers on each country signifying how many pieces you must have to retain control and the animal characters have been aptly named Flipper and Moby Dick.
Rook is by far the game of choice for each family gathering but again, we don't play like "normal" people. I've been told that we follow the rules of Oh Heck, but never having played that game I can't be sure. My dad has a complicated scoring system that calculates the number of tricks you've bid with the number of cards dealt to create a magic number. What this really means is that he's the only person who can keep score and far too often has a top score.
Being a family of geeks and Trekkies, we aren't usually into sporting activities. The one exception is kickball. Some of my favorite summer memories are of my sisters and I dodging the ball when dad tried to get us out. Tried, who am I kidding? He had much better aim than we had sense of direction!
Over Memorial weekend we gathered the whole family in the park behind dad's house and had a mega game of kickball. Twelve kids and ten adults make for some interesting plays. It's fun to have a nine year old pitching, a two year old rounding the bases (whether it's his turn or not) and grandpa heckling grandma while she prepares to kick. I chose to not remember who won the kickball game, after all it really only matters that we got to play.
We've been lucky enough to have several game nights this summer, with more siblings in town than at random intervals as well as our favorite Uncle Mark and Aunt Deb. I'm glad we had extra time together, but sad that a few are going their separate ways again soon. I guess summer fun has to end sometime, but I'll keep the Rook cards handy.

(updated 8/21/10)

Have you heard the story about Newport?

On my 12th birthday my family moved to Newport. No not that Newport, or even that one, but Newport Washington. A small town about an hour north of Spokane, an hour and a half south of Canada, and across the street from Idaho.
Until last week I hadn't been back in several years, mostly because life is constantly moving but in part because it's a hard place for me to be. I don't know many people that didn't struggle through middle school and I was no exception. For me it was another new school combined with being 15 miles from civilization and friends.
I loved the land though. My mom owns twelve acres at the top of a mountain with a beautiful view. There's a creek, the start of the Spokane River, that runs alongside her property and enough evergreens to get lost for days.
A decade ago there was an old trappers cabin on the lower edge of the grounds where I used to escape when the trauma of being thirteen got to be too much. A county road project accidentally left the cabin under five feet of dirt a few years ago. My sisters and I used to target practice from the front porch and I have to say I was a pretty good shot.
Newport is a rare place where the ability to make deer jerky is commonplace and little girls (like my sister) aren't frowned upon for having animal skulls as pets. The local movie theater only plays one movie each weekend, but they make a grand production of it!
There are good memories of girls camp and cabaret mixed in there as well. Swimming and fishing in the Pend Orielle River, rollerskating in Sandpoint, performing my first on stage solos.
So much of this little town has stayed the same in twenty years though... maybe that was why it's hard for me to go back, I'm not the same. Back then I was shy and nervous, constantly worried I'd say or do the wrong thing. I like to think that I've found my footing in this world now, that I'm able to stand tall for myself, my family, and my beliefs. Newport was only my home for two years, but those years forever changed who I am.