Doodlebug Dawsyn

Merry Christmas from Dravet's Kids around the world!

2011-12-22T08:58:00.000-08:00

This is a beautiful video montage of children around the world with Dravet's Syndrome. They are beautiful, beautiful children!!

http://www.facebook.com/photo.php?v=10150443890296938

A Blast from the Past

2011-12-16T18:15:00.000-08:00

Had a nostalgic moment this afternoon as I looked at the wall of fame. Again found myself missing our 2010 4 Paws family!

Stood in front of this "Wall of Fame" thinking it looked suspiciously like the one we signed the last time we were here!

We searched and searched for Hudson and Lorelai and the other families but couldn't seem to find them. Miss you all May 2010 class!!

Graduation Day

2011-12-16T17:54:00.000-08:00

Today was the big day. All the families passed their Public Access Test and succeeded to graduate this afternoon.

Here's a glimpse ...

Wall of Fame

Jeremy in front of the Wall of Fame

Awaiting the festivities

Team Cassie and Maggie

Team Ollie and Hazy

Team Dawsyn and Lilly

Team Alex and Clifford

Team Logan and Hattie

Team Jackson, Denver and Harper

Team Meghan and Yoyo

Team Ethan, Alex and Sega

Team Joey and Stormy

Dawsyn with Lilly and Jeremy

Dawsyn with Lilly and Yarden

Yarden and Lilly

Jennifer V.

Dawsyn with Lilly and Jessa

JennO with Hattie

Oh ya, let's get one more picture with Jeremy. Dawsyn got very attached to Jeremy!!

We met lots of new friends and have had a wonderful time but are really ready to get back home. We miss Matthew and need to settle back in to real life. We'll be up by 4 am to make the journey home.

Last Day

2011-12-15T17:35:00.000-08:00

Today was our last day of tracking and training. It was pouring rain and we were soaked to the skin by the time we finished tracking. Fortunately, it was 12 degrees Celsius so at least we weren't wet AND cold. We make a quick trip back to the hotel to change into dry clothes and then spent our last training afternoon.

Tomorrow each team does a public access test and then we have graduation in the afternoon. We know from experience that it will be a bitter-sweet day. On the bright side, we get to graduate with our dogs and go home. On the down side, we will be leaving new friends.

Training - December 14, 2011

2011-12-14T16:41:00.000-08:00

Stormie

Julie and Stormie

Heather and Hazy

Connor, Training Assistant

Me and Lilly, Heeling off leash

Pretty Stormie

Connor sitting pretty

Yoyo's little girl likes to dress her up!

Janet and Hattie doing "lap"

Julie and Stormie doing "lap"

Dawsyn playing with Megan

Tracking - December 14, 2011

2011-12-14T16:29:00.000-08:00

Waiting in the rain for our turn to track.

Ollie - doing what boys do best when puddles are available!

Julie and Stormie

Heather and Hazy

Hazy

Dawsyn and her latest crush, Jeremy

I do believe they are rather taken with each other!

Yup, the feeling's mutual!!

The Atwell family and Clifford

Heather and Ollie heading out to hide

Lilly just waiting for her chance to "seek"

Still waiting! Notice huge muddy feet ... hmm?!

Julie, Paula, Joey and Stormie

Dawsyn and Yarden (Jordan) heading off to hide

Lilly did her job and now Dawsyn is heading back with Jessa and Jeremy, her parents all but forgotten!

It's Beginning to Look a Lot Like Christmas!

2011-12-13T19:17:00.000-08:00

We visited Santa's wonderland this evening. Who knew Santa hung out in Ohio? You can visit too at http://www.cliftonmill.com/

The covered bridge at the entrance was beautiful.

The Mill itself is gorgeous!

I have never seen so many Santa's in one place!

This was my favorite!

Dawsyn and Kaitlyn

The miniature village was fantastic. There was a cool drive-in theatre, a log house on fire with fire engines engaged, a train, and so much more!!

This was the COOLEST teeny little campground!

An airport

A school house

The drive-in was complete with fare skippers crawling out of trunks!

A carnival with ferris wheel and carousel.

House on fire

Dawsyn was really intrigued with Santa Claus. Every now and again he'd leave his busy work in the workshop and pop out the chimney to wave and "Ho Ho Ho" to the children. She would shyly look up at him and wave every time. If we were a ways away, she'd take off running toward the workshop when he'd appear. Prior to this evening, she's never shown any interest in Santa at all.

What a fun evening and the weather cooperated by staying above freezing.

Oh Puke!

2011-12-12T18:27:00.000-08:00

The days are beginning to run together. Everyday is a combination of working the dogs with the commands we've learned and the addition of a little new stuff.

From now until graduation day on Friday the real priority is getting a handle on being 100% consistent as dogs do not understand "sometimes". Just like with our kids, we really should not give a command unless we intend to carry through.

Miss Campbell would be a GREAT service dog owner!! I bet Jetta knows who the boss is. I may have have to take an occasional "consistency" lesson from the Consistency Queen!

Tracking is going great. Lilly is much easier to read while tracking than Milkyway ever was. We understand what she is doing with every move, we handle her with confidence and know that we will be able to track down our runner if she ever gets out of our line of vision. We are also quite confident that we could track down a sneaky teenager if he tried to pull anything funny!

Tonight we had supper at the hotel dining room, everything was going fine, until Dawsyn puked! She got up from the table, walked towards me and puked all over the floor between us (hitting another child's jacket in the process). She straightened herself up and puked again all over the table. Yippee! Two messes to clean up. Ben grabbed her a got her out of the building in time to save the carpet and other diners from two more episodes! I stayed behind to clean up the mess with the help of another 4 Paws Mom and hotel staff.

When I got back to the room, Dawsyn was sitting like a princess on the sofa. She spent the evening watching movies, singing along to her favorite songs and "fake" puking into a bucket. Within a very short time, she was asking for cheese.

She has gone to bed now and hopefully will have a good night.

4 Paws from Dawsyn's Perspective

2011-12-11T18:29:00.001-08:00

After running a couple of tracks this morning, Dawsyn toured around the 4 Paws facility with her camera. Here's a look at what Dawsyn sees every day.

This is Paula. Her grandson, Joey, is here getting an autism assistance dog. Dawsyn really likes Paula!!

This is the training room. Trainer Jennifer is great at her job and is able to get all our dogs to do things that we still can't do!

Some of the families working their dogs.

Janet is here with her family from Texas.

This is Joey's Mom, Julie.

The play area is a great place for this children to hang out while parents are learning dog handling. The beads are Dawsyn's very favourite.

I think she took great pictures of them!

This is Joey. He loves to play with this truck. He is here with his Mom, Julie and Grandma, Paula. His Dad had to stay home in St. Louis with his little brother and sister.

Dad reading the training notes for the day. Mom paying attention!

Dawsyn loves the trainers here at 4 Paws. This is Jessa, Jennifer and Jeremy.

Lilly relaxing between workouts and getting a friendly pet.

More information to absorb and implement !

Cassie and her dog Maggie

Self portrait!

Training Day #4

2011-12-09T18:36:00.001-08:00

Just a few pics of Lilly and some of her classmates. I'd name them, but I can't even remember people's names at the best of times!!

We spent the first half of the morning practising tracking and the second half practising commands in the midst of distractions. During the afternoon, the rest of the class headed off to practise in the mall. We are not going to have Lilly certified* for work in public places so we didn't join them.

We took the opportunity of the free afternoon to start our Christmas shopping. I managed a visit to Marshalls and The Burlington Coat Factory. Tomorrow I hope to hit TJ Maxx and Kohls. I know Matt sent his Christmas Wish List with me but I really have no idea where it is at the moment or what's on it ... hope he's not too disappointed! ;)

* Lilly has a wonky skin sensitivity and can't wear a harness. Therefore, she will not receive service dog certification. We were aware of this prior to coming and chose to take her home as an In-home Companion.

Training Day 3

2011-12-08T17:13:00.001-08:00

The first order of business today was tracking ... and it was COLD! Really, it was only -2C (28F) but the wind made it really really cold. For a girl who is used to (and complains about) chinooks, this was NOT a warm wind.

Dawsyn was fully prepared for the elements. She even had new winter boots to keep her tootsies warm and dry. I had rubber boots so my feet stayed dry but warm they were not!

We returned to the 4 Paws facility about 11:00 for some training in a warmer environment. After lunch, Jeremy gave some further information about tracking and how the dogs do it.

Throughout the day, Lillith just looked cute and did her job impeccably!

When it wasn't her turn to demonstrate her expertise, she had a nap.

And then she looked cute again ... it really is her speciality!!

Her favourite thing in the world is a tennis ball. It is her very best reward for finding Dawsyn when tracking and for alerting us of a seizure. With this in mind, Ben went to PetSmart and bought two. Apparently he went for the economy variety because she had chewed right through one in no time. We dug out an old one of Milkyway's that was better quality and she destroyed it! We are going to have to get a recommendation on tennis ball brands safe for her to chew on!!

I am sure that we will need many of them because she is an absolute star at seizure alerting. Dawsyn was pretty sleepy when we got back to our hotel room around 4:30 so I let her curl up on the couch with blanket. Lilly also had a little nap. All of a sudden, she jumped up and loped over to Dawsyn. She sniffed around her mouth for a few seconds and I praised her up and gave her treats. Seven minutes later, Dawsyn had a Myoclonic Jerk. Lilly smelled it coming! Since she is so consistently telling us about the seizures before hand, we will continue to work on the "bark" command so that she can tell us even if we are not watching them at the moment.

We are absolutely over-the top-impressed with everything about this dog!!

Day 2 - Part 2

2011-12-07T17:23:00.001-08:00

Ben just took a couple more pictures that I couldn't go to bed without sharing!

It's a good sign but I'm wondering where Daddy and I are supposed to sleep!

Training Day 2

2011-12-07T16:59:00.001-08:00

Another day of bonding and basic training. I remember it all beginning to feel repetitive last time and that feeling returned quickly. I know it's important to work on the basic commands because we are a new partnership but I am thinking it might begin to feel like a long two weeks!

The bonding process is going very well. Dawsyn loves to hand-feed Lilly her dog food and her treats.

Yesterday during training, Jeremy stopped what he was doing and asked if Dawsyn was okay. We said that she was fine, just watching a movie on her iPod. Lillith sniffing at her rather intently so he said just to see what happened. Two hours later, she had a myoclonic jerk as we were driving back to the hotel. We are quite certain that Lilly smelled coming!! How exciting it is to see her picking up on seizures so soon.

We ran out to find a camera store for Ben tonight but I decided not to do any shopping this evening. I am particularly tired tonight as I didn't sleep well last night. It's going to be an early night for me so I will have the energy to shop tomorrow!!

Training Day 1

2011-12-06T18:56:00.001-08:00

How wonderful it was to meet Lillith today! She is a real fuzzy wuzzy beauty! She is already very attentive to Dawsyn and I'm sure they are going to be great friends.

I like her a little bit too!

This morning was just meet and greet for the staff and families. It was nice to get reacquainted with the training staff. They do such a great job with these dogs. After we all had a chance to introduce ourselves, the trainers brought out the dogs to meet their new boys and girls. It's so much fun to watch the reaction of the families as they meet these new important family members.

After a short lunch break, we spent the afternoon doing basic training. We did lots of "sits" and "downs" and that was it for training day number one.

We did a little shopping this evening and had a good supper at the hotel.

Back in Ohio

2011-12-05T18:30:00.001-08:00

We have arrived! Our long day began with a 4:00 a.m. wake-up call. We left for the airport before 5:00 and got through check-in and customs with no hassles or delays. We managed to trek from one corner of the Minneapolis-St. Paul airport to the very opposite corner for our connecting flight and even had time for a quick pizza lunch. We arrived at the Wright-Patterson Airport in Dayton by 4:30 p.m. (Ohio time so 2:30 back home). By the time we retrieved our luggage, picked up our rental car and got to our hotel it was 5:30. We dumped all our bags in the room and headed to the dining room for supper. We took a quick trip to Meijer to pick up a few groceries ... and by groceries I mean cheese and sour cream for Dawsyn. It's 9:30 now and I've got the bags unpacked and am feeling settled. Ben and Dawsyn are already in bed!

Dawsyn has been absolutely unbelievable today! Up so early in the morning, playing the game of "hurry up and wait" through airports, sitting countless hours restricted to an air plane seat and dashing (and we really did move!) from one gate to the other through Minneapolis and there has not been one word of complaint or whine out of her all day! She napped a little on the plane but mostly was content to watch a movie on her iPod and play a couple of games of Go Fish. She never once asked to be carried, which is a good thing because we certainly can't do that any more! Miss Campbell would be very proud of how well Dawsyn behaved like a ten-year old today!!

It is amazing how quickly everything felt familiar. It seems like yesterday we were here! However, now that we are settled into the suite that will be our home for the next two weeks, I am feeling distinctly lonely! As we moved into our room I commented that this is the block that Joel and Lisa were in last time. In the dining room we sat at the table we shared with Sean and Bethany. I know that we are going to meet a whole group of people who will be added to our 4 Paws Family but I'm sure going to be missing those of you who already have a place in my heart! I know that I will catch myself looking for you every day!

Well, I think that's it for tonight's update. It has been a long day and I think I'm going to join the "sleepers".

Lillith

2011-11-30T18:26:00.001-08:00

Here's a newer picture

It's Official!

2011-11-30T17:35:00.001-08:00

Dear Dawsyn,

My name is Lillith and Iam a member of the L litter here at 4 Paws. In fact I am the only L Litterpuppy left and that is because I am super special and was waiting on YOU! I ama Goldendoodle and was born 9-3-2010.

I have had quite a life here at 4Paws. I have been to prison and spent time with Jeremy at his house too. It wasfun, I played with his boys.

I am pretty excited about moving to Canada. I lovesnow! I am not sure about the people called snowmen though. They are quitestrange. They have orange noses that look quite like a carrot if you ask me andthey never move, well except one I saw on TV that was called Frosty and wassinging and dancing. From what I can tell he was pretty rare. I have never seenone like that. Have you?

Well my friend. I have been dreaming about you everynight and hoping that you will love me. I think you will. Sometimes at night Ilook up in the sky and see a thing called the Milkyway and for some reason itmakes me think of you and know you will love me. I can't wait to meet you!

xoxoLillith

2011-11-17T10:06:00.001-08:00

I wrote this poem just under one month before Dawsyn's first seizure. God was already teaching me that I had to change my mind-set to survive my parenting journey. I had all but forgotten about this poem until recently in conversation with a number of young mom's who were commenting that they were reluctant to have people over because they can't seem to keep their homes clean enough. To that I say, invite ME, I wear blinders!!

My House is Not Clean

My house is not clean

It’scovered with dust

But spending time cleaning

Justisn’t a must!

‘Cause my kids are growing

Upway too fast

To waste my time doing something

Thatjust doesn’t last!

But the hours I spend

Playinggames, reading books

Will last through the ages

Whenon them we look.

Childish days, they are numbered

Theysoon pass us by

Kids grow up and leave home

We’releft to ask why

Did I spend all those hours

Washingfloors, cleaning house

When my kids really needed

Meto watch Mickey Mouse.

So the dust and the dirt

Willnot make me fret

Matthew’s calling “Hey Mom,

Canyou play with me yet?”

Yahtzee or Trouble,

GoFish or Uno

Or down to the basement

Toplay Nintendo!

Dawsyn’s still easy

She’sonly a babe.

If I hug her and feed her

Contentshe is made.

But the day’s quickly coming

Whenwe’ll put away toys

Spending our time

Talkingmake-up and boys!

So when at our house

Don’tlook at the floors

You will quickly discover

I’venot done my chores.

But look at the faces

Ofmy daughter and son

And see how they’ve blossomed

‘causethey’ve spent time with Mom!

MarvelMcAmmond

January22, 2002

2011-10-17T10:08:00.000-07:00

The sentiments expressed in this article are not only true of parents of children with terminal diseases but also of those of us with children suffering from chronic diseases that prevent them from becoming all that other "typical" parents plan for their own children. Great article. Great Dragon Mom. Great lesson for us all!

OPINION

Notes From a Dragon Mom

Alexandra Huddleston for The New York Times

Emily Rapp and her son, Ronan, who has Tay-Sachs disease.

By EMILY RAPP

Published: October 16, 2011

Emily Rapp is the author of "Poster Child: A Memoir," and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means "little seal" in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He'll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn't think I needed the test, since I'm not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan's birth make little sense now. No matter what we do for Ronan - choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training - he will die. All the decisions that once mattered so much, don't.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them - and therefore us, the proud parents - apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua's "Battle Hymn of the Tiger Mother" is only the latest handbook for parents hoping to guide their children along this path. It's animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan's scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We're not waiting for Ronan to make us proud. We don't expect future returns on our investment. We've chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician's office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he's clean and warm and well rested and ... healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn't understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won't prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say "Mama," and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we're too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there's this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don't want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won't. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I've come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that's all there is.

2011-10-11T11:28:00.000-07:00

Borrowed from the blog "Special Needs Mom" (http://specialneedsmom.typepad.com). Once again, she's nailed it!

To The Author of The Anonymous Note Left On My Car Window

I think I recognize you! I do.. I used to live in your world of Black & White, everything in order- in it’s place- I got a plan- got a schedule- a list of finished projects- checked -off checklist and all. How wonderful for you that your life is so structured , so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines.
This time though, in your hurry to keep things neat and orderly.. you didn’t see the whole picture. I guess you didn’t see the accessible permit hanging from my car mirror, giving me permission to park close to the entrance. You didn’t see the wheelchair lift permanently installed into the back of my SUV, and you didn’t see me unload my nine year old daughter’s pink manual wheelchair that we use for “ quick “ trips. Maybe from your view you only saw my 11 -year old daughter and I, and not Zoe’s pink wheelchair.

But forget all that, it could have only been my older daughter with me that day, parked in that same spot,and depending on her health at that moment- in your eyes, we would have appeared to be at fault- even though her doctor almost nags me, reminding me to use the medically authorized permit to conserve her energy when needed. Even though she has the same progressive metabolic disorder as her younger sister. She doesn’t have a wheelchair, but she has the same rights- all invisible to you from the perspective of your world.
I recognize where you are from. I used to live there too. I used to have checked off lists, awards of accomplishments, perfect hair, great skin, sparkly eyes, a quick wit, a clean car, a social life, a large social network, an organized calendar , vacation plans set in stone, and a no overdue library books . But then I became a Mom. A mom of a special needs child. A child with no lifelong guarantee, no definitive prognosis and no detailed treatment plans. We have good doctors, we have a good attitude and we have a good family life.
My life is good, but not so easily structured. My skin not so healthy, my hair often flyaway, my eyes most often tired. I am up multiple times throughout the night, I rise at 5 and go full speed until 9 at night, still stymied and determined to do more each and every day. I miss the friendships I used to have, the once- so- easy to -achieve professional accomplishments- but I don’t miss that world you live in.
I am a kinder woman who lives in a world that is no longer black and white. Sometimes gray is good, a salvation, a retreat from something that could be much worse. My priorities were reshuffled for me, and now I would never think to judge another.
I am always in motion and I am grateful . Grateful for the touch of my child who needs my hands to steady her, grateful for my child who craves my words to calm her, my child who needs my hugs to soothe her. I am even grateful, that I no longer live ...in that black and white world.

Life on the Rollercoaster!

2011-10-06T21:12:00.000-07:00

I'm a bit of a procrastinator and I had procrastinated and procrastinated but finally buckled down and on Friday booked our flights to Ohio in December. The only thing left to do is book a rental car. We are almost ready to go.

On Monday Jeremy, the Lead Trainer at 4 Paws, called to tell us that the dog being trained for Dawsyn would not be eligible to be licensed as a Service Dog. Although she was training very well and could all the things we needed her to do for Dawsyn, she has a skin sensitivity and cannot wear a harness without scratching uncontrollably. No harness = no service dog license! Jeremy assured us that he could probably have another dog ready for us by next spring.

On Wednesday Dawsyn had an appointment with the neurologist (everything is great and we are weaning off another medication. YAY!) and we asked his opinion about getting a dog that was NOT hypo-allergenic. He didn't like the idea of her possibly have an allergic reaction but agreed that allergy shots would be an option. I asked Jeremy if that was a possibility for December but he didn't think there would be one ready that would be a good fit with Dawsyn.

This morning I started the process of cancelling our airline tickets. I quickly discovered that our insurance was not going to cover this particular set of circumstances and that we were going to lose close to $1,000 in penalties and the remaining $1,500 would not be refunded but would be a credit with Delta airlines to be used within the next 12 months. I wanted to cry!

I took a couple of hours, focused on something else and waited for Jeremy to return my phone call. I got lots of work done today staying busy and trying not to think about losing a whole schwack of money!! Jeremy and I managed to miss each other a number of times throughout the day but finally connected this evening. We talked more about options and it really looked like we were going to have to cut our losses and hope for something in the spring. He said that he was so disappointed because he felt this dog would have been such a good match for Dawsyn except for the sensory issue. He told me that she would be placed as an in-home companion. I asked some questions about her abilities and learned that she has a great nose on her for sniffing out seizures, is good at tracking, is well-trained in behavior disruption and is very loving. The only thing she can't do is wear a harness and therefore, cannot go to the mall or the grocery store or into a restaurant. I got to thinking that really, the things she CAN do are much more important to us than the things she CAN'T do. Jeremy suggested that Ben and I talk about it and get back to him.

It didn't take us very long to make a decision. We will be flying to Ohio as planned and will be bringing home a lovely in-home companion that is trained as well as the best service dog! Jeremy was great about talking us through our decision but he still wouldn't spill the beans about which dog was coming home with us! ALWAYS with the secrets!! He did give us a few hints and narrowed it down considerably. We know that our new dog is a female golden doodle whose name starts with "L". We know that one of the two beauties below is coming home with us on December 17.

L
Labelle Lilith

I think either of them will be worth the new grey hairs this week has caused me to grow!!

December Dissapointment

2011-10-04T22:46:00.000-07:00

We received a call from Jeremy, the head trainer at 4 Paws for Ability, yesterday with some very disappointing news. They had a whole litter of Golden Doodles in the final stages of training and we new that one of them would be Dawsyn's. They were all gorgeous, smart dogs and we were excited to have one of them come live with us.

As it happens, this particular litter has a quirk. They all have skin/sensory issues and cannot tolerate the harness or other skin "annoyances". This means, that after all this training, they cannot be placed as service dogs. Having previously been through a ten-day training program with Jeremy, we have full confidence that if this problem could have been trained out of these dogs, he is the man to do it. He can't. What a great disappointment for us and for the training team!

Because Dawsyn needs a hypo-allergenic dog, this means another wait until they have another poodle cross suitable. Possibly April.

We are reeling from the news and wondering why, exactly, we have had such a run of bad dog luck. Milkyway wasn't even two years old and had only been with us for 50 weeks when he died of cancer and now a WHOLE LITTER of dogs that would have been suitable cannot be placed. We can't help but wonder if we are just not meant to have a service dog. Please pray that we will have clear guidance over the next days as we have to make a decision about what to do.

Also, we have already booked our flights for December so pray that we can cancel them without penalty.

NT vs SN (stolen from a friend)

2011-10-04T21:30:00.000-07:00

Neuro-Typical (NT) moms volunteer in the classroom to help out.
Special needs moms volunteer so they can take notes on whether the school program is appropriate for their child.

... NT moms look forward to an "empty nest."
Special needs moms wonder who will take care of their kids after they're gone.

NT moms read their children stories.
Special needs moms read their children social stories.

NT moms try to cope and accept their child's imperfections.
Special needs moms whose children are labeled imperfect or defective, nurture them to the full beautiful gifts from God that they are.

NT dads wrestle with their boys for play.
Special needs dads worry their child won't recognize when wrestling would be inappropriate and instead must teach them, "Keep your hands to yourself."

NT moms are asked to chaperone for field trips.
Special needs moms are required to be there just so their child can go on the field trip.

NT moms take their child's developmental milestones for granted.
Special needs moms realize what a miracle the human body is to be able to do what it does after spending hundreds of hours teaching our kids to roll over, crawl, walk, eat, play, etc.

NT moms cringe when their daughter misses a step or gets confused during a ballet recital.
Special needs moms cry special tears as their child painstakingly holds up one foot while leaning on a chair and says, “Look, mommy, I’m doing ballet.”

Is no news, really good news?

2011-09-28T08:35:00.000-07:00

I have been horrid at blogging our journey! It seems that living life just gets in the way of writing life. I will start writing my Christmas letter soon but figured a quick update was in order before then.

Ben works hard, fishes as often as he can and doesn't golf nearly enough. He enjoys photography and started his own blog to post weekly pictures. He's not been happy with the format so has been about as faithful to his blog as I am to mine! Stay tunes as we are searching for a better way to share his photos.

Marvel still hates doing laundry and cleaning house. Some things never change! Weekly golf was a favorite summer activity. For the first time ever, summer was over too quickly. I would happily have kept the kids home for another couple of weeks.

Matt is in Grade 9 at Didsbury High School. He loves school, not so much for the education part as for the social aspect! We enjoyed a summer of teenagers in our yard. Water fights, campfires, s'mores and hotdogs. I love having them around!

After many years of petitioning neurologists, Dawsyn has finally been weaned off Clonazepam. She is much more alert, is learning so much more easily and is having fewer tonic clonic seizures. It's been a great year! Next appointment is October 5 when we'll decide whether or not to start weaning another drug.

We have had a few dogless months but are planning our next visit to 4 Paws for Ability in December to meet our new Service Dog. We are excited about the prospect of welcoming a new dog into the family but are less than thrilled with the prospect of two weeks away from home right before Christmas.

I am having trouble wrapping my head around the idea that we will be in Ohio with a whole bunch of strangers. I know we will meet lots of wonderful families again this time but can't help but wish that some of our "old" service dog family was going to be there too!

Blessed

2011-09-28T08:17:00.001-07:00

2011-04-12T11:32:00.000-07:00

We have just heard back from a veterinary oncologist who has confirmed the tumour to be osteo sarcoma. He suggested that even with an amputation, Milkyway would only have a few more months. Our veterinarian has advised euthanasia sooner rather than later.

As you can imagine, we are heartbroken.

Three Months with No Post and This is What you Get!!

2011-04-11T13:40:00.001-07:00

Okay, so here’s how the story has been unfolding …

Last July, Milkyway hurt his knee. We let him rest it up and it healed. This February, he injured it again and this time, it did not heal on its own. We believed it was a torn cruciate ligament and would require surgery. For those of you more scientifically literate than I, this is the vet’s description:

On physical exam, it was found that he was Grade V/VI lame and had a cranial drawer present in his left hind stifle joint, indicating an injury to the cranial cruciate ligament. Cruciate ligament injuries are most successfully treated with a surgery called a Tibial Plateau Leveling Osteotomy (TPLO). Without surgery, the lameness will persist and arthritis will occur.

This morning, I took Milkyway in for his surgery. About the time the surgery was supposed to begin, I got a call from the vet. They had seen things on the x-ray that complicated matters and that made them decide that surgery was not the route to take at this time.

There is a tumour on the knee and the consensus is that it is most likely cancer. He needs a biopsy to determine what kind of cancer and whether or not it is spreading. If it is a localized, non-spreading cancer, we can amputate and have a three-legged pet for many years. If it is a spreading cancer, we can amputate and hope that it hasn’t seeded itself elsewhere. If it is a rapidly spreading cancer, amputation may just lead to further discomfort for a life that will be far too short anyway. From our financial standpoint, chemo and radiation are not an option for a dog; even a well-trained and well-loved dog.

I guess the question of what we do next depends entirely on the result of the biopsy. Regardless of what we do, we no longer have a service dog, we have a very expensive pet!

On that note, 4 Paws will provide us with a new service dog as quickly as possible at no cost. However, our next question is, do we really want another dog? We would still have the expense of travelling and staying in Ohio to train with a new dog.

At this moment, the thought of having a daughter with Dravet’s Syndrome, a disabled dog AND a second dog is almost more than I can bear!

Prayers for wisdom and grace will be greatly appreciated!!

2010 Christmas Letter

2010-12-14T17:34:00.000-08:00

December 2010

As Christmas cards and letters slowly filter in, I realize how desperately far behind I am! It is long past time for me to get busy writing my own annual missive.

I remember being told that every year will speed by more rapidly than the last. That is certainly proving to be true! This past year has, in many ways, been uneventful but in others has seen much change.

Matthew has grown from a boy to a man, complete with moustache and crackly voice! He switched schools this year and has benefitted greatly from the change. He quickly found his niche in his new environment and is doing well socially and academically. He is enjoying the opportunity to be part of a band and has learned two new instruments. In addition to continuing to play the piano, he also plays the tenor saxophone and timpani. In January he will also be trying his hand at guitar.

Matt played basketball last winter and baseball again in the spring. He is also part of our church youth group and keeps very busy with their weekly activities. We have found ourselves in that stage of life where a major part of our parenting job is taxi service!

Dawsyn has experienced a more stable year health-wise than some in our resent past. She has averaged only 24 seizures a month this year which is a marked improvement on past years. This decrease in seizure activity has meant that she is better able to learn and we’ve seen considerable improvement in her reading, math and verbal language skills. However, this past November, we met a new neurologist who is confident that we can have much better seizure control than what we currently have. He strongly feels that Dawsyn is overmedicated which is something we have been concerned about for years! He has suggested a number of possible treatments and we have made some big decisions. We are very excited to be reducing her medications and seeing the accompanying alertness and eagerness to learn. Dawsyn will also be receiving a Vagus Nerve Stimulator which is intended to interrupt seizure activity with electric charges (it is similar to a pacemaker for heart patients). We look forward to continued improvement in Dawsyn’s overall health and abilities.

For Ben and I, nothing much seems to change from year to year. Ben continues to work for UFA and enjoys fishing and photography in his spare time. We both try to golf a least once a week when the weather allows and are always sad to see the greens covered for the winter. I continue to do a lousy job of keeping house but do enjoy cooking so manage to at least feed my family decently! I am still leading a Ladies Bible Study once a week and thoroughly enjoy my preparation and teaching time.

We are at a loss to explain how we somehow went through the entire summer without a holiday or even a weekend camping trip! We love to camp and were quite disappointed not to have taken the trailer out at all. We hope to make up for it next summer! Fortunately, we were able to take our annual trip to Mexico in March and thoroughly enjoyed our time relaxing by the pool, walking the sandy beaches and spending precious time with Paola and her little family. Our tickets are already booked for our 2011 trip!

We are looking forward to Christmas here at home and then spending a couple of days with my siblings and their families at Mom and Dad’s over New Years. To you, we wish a Christmas and New Year filled with God’s peace and blessing!

Love from,

Ben, Marvel,

Matthew & Dawsyn

P.S. To see more of Ben's awesome photos, go to http://benandmarvel.wordpress.com.

A Mother's Story

2010-11-30T16:22:00.000-08:00

I received this from a friend we met down at 4 Paws. Her child has autism as a result of vaccinations just like Dawsyn has Dravet's Syndrome as a result of vaccinations. This will just give you a little glimpse of of what people really and truly have the nerve to say to us! It truly is inexcusable!!

Your child is more important than mine…

I want you to read these words and have them reverberate through your body like they do mine. Open your mind and put yourself in our shoes (the ones that know their child was a causality of the vaccine wars). This is what I feel in my heart NOW AND FOREVER. I gave my child for the greater good? But yet I'm called names and made to look like I'm crazy or that my child doesn't count? Why, because he was sacrificed to save yours? My friend Julie Obradovic’s words…

*******************************************************************************

This is the argument that keeps me up at night. This is the mentality that fried my baby’s brain. This is the rationale behind a vaccine program that is out of control, completely corrupt, and responsible for damaging millions and millions of lives. As long as the belief is that those damaged millions are justification for the billions, it’s okay. As Angelina Jolie says in her summer movie Wanted, “Kill one. Save a thousand.” But what about when that “one” is yours? When that “one” could have and should have been saved? When that “one” turns out not to be “one” but an entire generation of children across the globe? Well, that’s when I get angry. I have yet to meet one parent of a vaccine injured child, or a vaccine injured person, who is okay with what happened because they take comfort in knowing their sacrifice was for the greater good. The only people who believe they should are those that have the luxury of not having made a sacrifice, and worse, believe that sacrifice somehow made them safer. Only they don’t even believe they have to say “thank you” to those of us that lost. They believe they were entitled to it. To any and all who may feel that way, let me make this clear: You were never entitled to my child’s life, and I never had any intention of giving it to you.

*******************************************************************************

AND here's a quote for you.....

Who are you to judge the life I live? I know I'm not perfect and I don't live to be. But before you start pointing fingers...make sure your hands are clean.

-Bob Marley

You made the statement to me the other night “I know something happened to your son with vaccines but I’m pro vaccine and they save lives.” Fine, be “pro vaccine” but what you said was cold and absolutely HEARTLESS. I would never have said something like this to you as I am a mother. Would you say the same thing to a mother that had a child with cancer? No, but it’s ok to say it to a mother that has a child damaged by the very thing she was told would make her child safe.

There is so many things about this you can’t possibly understand so I will give you the benefit of the doubt…you really didn’t mean to be rude, ignorant heartless, self-centered, uncaring for the welfare of another child.

Before you make blanket statements about vaccines consider this, my child lives everyday with bleeding eczema, gut pain so bad you could only have nightmares about it. He can not communicate his wants or needs because his vaccine brain damage as rendered him speechless. He is not potty trained at 6 yrs old. He is in a special needs class.

My child was born perfectly normal. His Apgar scores were fantastic. There was nothing wrong with him physically or mentally when I gave birth to him. My son could draw at 15 months. He could feed himself. He had a great vocabulary. Then the Pediatrician gave him MMR, Verivax (chicken pox) and Prevnar 7 on the same visit.

You may seem to think this is excessive but it is now standard procedure to give this same combo to children as young as 12 months. That night my son had a seizure and never came back and when I take my son to doctor after a frantic evening in the ER, I’m told “No, he must be epileptic it wasn’t the immunizations.”

I want you to remember before you make these types of statements that there are REAL children behind the suffering. There are REAL parents that watched their baby never come back.

You may not believe that vaccines cause autism but you don’t know the whole story because you haven’t dug deep enough. You listen to what your doctor/the CDC/the media tell you to believe. Blanket statement about a subject that you have no real knowledge on is what Mr Lowry calls a fallacy. In all honesty, if you knew and read the peer reviewed studies that I have from our own government about vaccines and brain damage you would never stick another needle in your child. There is a whole world of special interests and back door deals when it comes to the multi-billion dollar industry of vaccines. The vaccine schedule has increase by over 600% in the last 25 yrs and a 6000% increase in autism. That’s not a typo, 6000% increase. If you caused a 6000% increase in a developmental disorder wouldn’t you try to hide it too?

I know you probably don’t have any interest in finding out any of this information but I can enlighten you with information that the government doesn’t want you to hear or know. AND NO, I’m not a conspiracy theory nut. This is in black and white and is there to find if you’re looking for it.

Take a good hard look at the picture I’ve given you. Remember that this is my beautiful child. This is the little boy that suffers everyday because *I* believed I was doing the right thing by vaccinating him I was a nurse, I believed in the system. I thought all vaccines were tested effectively and in combination with each other. I was wrong. One ingredient and one vaccine have been studied, MMR and Thimerasol/mercury. Too top it off, the mercury study is now facing some very harsh criticism and may not hold water. NOT all 16 vaccines on the schedule have been tested for cumulative effects on an infant’s brain.

I am a real mother that sacrificed my baby for the greater good and instead of thanking me…you told me that my child didn’t matter.

Your compassion is astounding.

Hope Rising

2010-11-27T22:48:00.000-08:00

The funny thing about hope is, you don't always realize that you've run out of it. That is, until someone give you a glimpse of what could be! I think that over the past couple of years, without really realizing it, our hope tank had run very close to dry. It makes sense now, actually. I can see that my negative attitudes, darkening moods and my pulling away from relationships were just that … lack of hope. Well, that and menopause!

How could I lose hope and not even realize it? I can trace it back. From Dawsyn’s first seizure in February of 2002 until early 2006, Dravet’s Syndrome had been a part of our life but we never let it consume us. In ’06, it took over with a vengeance! For over a year, we took weekly ambulance trips to Children’s Hospital because we couldn’t stop the seizures. Our happy, bright, beautiful girl was rapidly disappearing and was being replaced by a drooling, non-verbal child with dull eyes. We could barely recognize her anymore. Our hope, however, was intact!

We kept fighting to bring her back. For three years we tried everything, homeopathy, diet, meds, more meds, different meds. We tried anything and everything to help us gain control over the seizures. Nothing helped … but we continued to hope. In 2007 we began to keep detailed records. She had 1648 seizures that year totalling over 11 hours. We hoped she’d get better. In 2008, she had 1938 seizures totalling over 17 hours. We started a new treatment in November 2008 and hoped it would help. It did.

The monthly intravenous immunoglobulin infusions (IVIG) resulted in a decrease to 363 seizures (3.34 hours) in all of 2009 and only (can I really say ONLY?) 264 seizures (3.27 hours) in 2010 to date. We’ve stabalized!

Dawsyn started to return to us. The sparkle in her eyes, the mischief, the smile (although usually quite twitchy) and the laughter had returned to our lives. She ever so slowly started to recover lost skills and learn new ones.

We were pleased but couldn’t help but feel that we could be doing more. She could be better yet. The meds had not worked before we started IVIG; they were not working now, so let’s lose them. They cause behaviour problems and are definitely a deterrent to learning.

Every attempt we made to speak to our neurologist about this issue was met with a firm “NO”. The attitude we constantly received was, “She has stabilized. Don’t mess with success. Leave well-enough alone. This is as good as you’re going to get.” Our last appointment with him was when we decided to try the IVIG in late 2008. Other than a couple of brief (5 minutes or less) visits from him while Dawsyn received her infusion, we have not spoken to a neurologist for the past 24 months. Hope began to wane.

Two years of little change in seizure activity, we began to believe that this was going to be the way it was going to stay … unless it got worse. There was no hope of it getting better. “This is as good as you are going to get it” began to seep into our bones as hope seeped out.

I had to walk away just now. Sometimes the anger and the tears overwhelm me and I have to “take a breath”. The Oilers lost to San Jose, 4-3. Everyone is off to bed now and I WILL finish this.

Friday, November 12, during Dawsyn’s latest IVIG infusion, I received a call from the Neurology Clinic. Our former neurologist has moved away and someone new has come. He wants to see us … immediately! We could have an appointment as early as Monday. “Seriously, MONDAY? We’ve not been able to get an appointment for two years and we can get in by Monday?” Apparently, Dr. Rho is anxious to meet us and go over Dawsyn’s case.

I couldn’t wrap my mind around it and booked an appointment for two weeks down the road so that Ben could be sure to get the day off work.

Dr. Rho cut right to the chase. Epilepsy can be dealt with in a number of different ways. There’s drug therapy, immuno-therapy, diet and surgery. For Dravet’s patients, brain surgery is seldom an option because the seizures are not limited to only one spot on the brain. They have no one focal point.

One look at Dawsyn and he says, “She’s way over medicated!” The meds obviously were not working before we started IVIG, IVIG was definitely helping, why is Dawsyn still on the meds? Any of this sound familiar? First order of business, remove meds! Ben says, “Oh, I’m gonna like you!”

Next order of business, Dawsyn obviously responds well to immuno-therapy. We could bump up the IVIG schedule or add a week-long dose of prednisone between IVIG treatments. Side-effects? Relatively less that the drugs she is currently on.

Another option is to try a modified version of the ketogenic diet again. We tried the ketogenic diet for nine months back in 2006/07. It reduced the number of seizures for the first couple of months but then lost its efficacy.

He told us about a treatment they use often in the US but is not used much here in Canada. Why? We’re not sure. It’s called a Vegus Nerve Stimulator (VNS) and involves surgery. The Vegus Nerve is a major communication link between the body and the brain. It delivers impulses to different parts of the brain. The VNS consists of a pulse generator (a toonie size disc) that is fitted beneath the skin under your left collarbone or close to the left armpit where it is almost invisible. Two fine wires are run just under the skin to the left vagus nerve in your neck. These wires carry the impulses from the pulse generator to the vagus nerve. The regular impulses of VNS Therapy help prevent the electrical irregularities that cause seizures.

We were in just a little shock! What is this you are telling us? We have OPTIONS? Half of my brain was screaming, “WE HAVE OPTIONS!” while the other half was raging, “Why the H-E-Double Hockey Sticks are we just hearing about this now??”

We’ve been sent home with a plan! Really, a plan? I’m still trying to wrap my head around it. First priority is to wean Dawsyn off the drugs. We started today! We know that this will probably involve break-through seizures as her poor med-addicted little body will rebel against us taking them away after all this time. However, the end result will be a little girl who does not have to think through a cloud of medication. We fully expect to see a new child with unlimited learning potential when all is said and done!

Our next job is to study the information we brought home with us and decide what to do next. It was an easy decision for us. We will call the Clinic on Monday and ask them to set up an appointment for us with the neuro-surgeon to have the VNS implanted. We are anxious to see how Dawsyn responds to this therapy.

If, after a number of months, we do not see as much of an improvement as we would like, we can try the prednisone between IVIG treatments and/or diet modification. The point is we have OPTIONS!

On the way home, we couldn’t stop grinning. I felt downright giddy! At first I didn’t recognize the feeling welling up within me. It came to me in the middle of the night when I couldn’t sleep for all the thoughts running through my head. I almost missed it … it’s HOPE!

Encouragement

2010-11-27T18:45:00.000-08:00

I just received a private message from a friend that was very encouraging. I am sometimes reticent to post some of my writings for fear that my own rawness will offend others. This friend commented that one of my darker posts had spoken to her. Her brief comment make the writing and the risk worth while ... "I hear your heart". Now, those same words coming from someone else may not have meant as much to me. However, from this friend, they have meaning. Why, because she KNOWS. Not one of us walks in the same shoes, even when our children share the same diagnosis, but some of us walk in similar shoes. We share common concerns and common heartaches.

To you my friend, thank you for your encouragement and thank you for walking ahead of me in many ways and showing me that we CAN walk this walk with grace and with beauty. Even when our "shoes" pinch our toes and cause us pain, sometimes even changing our "gait" forever, they are beautiful. Like magnificent pair of stilettos! I wouldn't ever change them for a comfortable pair of sneakers.

Funding Appeal from the IDEA League

2010-11-04T12:05:00.000-07:00

International Dravet Epilepsy Action League

www.IDEA-League.org

Dear Friend,

Words cannot describe how agonizing one minute is, let alone 60 or 160 minutes, when you are helplessly watching your child suffer through a seizure. Tragically, this is what thousands of parents whose children have Dravet Syndrome, and similar forms of epilepsy, are forced to do. Every day and night, Moms and Dads are thrown into a combat situation where they must fight to save their child's life - EVERY day and night. Where does their strength and courage to deal with such constant trauma come from? It comes from love...love for their child.

The IDEA-League is dedicated to helping these loving parents and children. Our volunteer board is made up of Moms and Dads who know first-hand the unrelenting stress and destruction this illness creates in their children's lives and families. This dedicated board, along with staff and volunteers, have accomplished many valuable outcomes including: funded two research grants; soon to be published internal and collaborative research studies; co-sponsorship of a special supplemental Dravet syndrome issue of the medical journal Epilepsia; co-sponsorship with Vision 2020 of a report on The Public Health Dimensions of the Epilepsies by the National Institute of Medicine; hosted international family medical conferences; created 13 Comprehensive Coordinated Care Programs across the U.S.; reimbursed and obtained coverage of medications for patients; and continued an online exchange with phone support for parents.

But as parents, we know that our foundation has much more work to do! The IDEA League is one of action. We need to fund more research, partner with more doctors and researchers, provide easier access to medical research and information, distribute more educational materials, answer more questions, and link together even more families around the world. These are realistic goals we can accomplish together. And together we can help to relieve the suffering of these loving parents and children, and ultimately, help to save their lives.

THIS IS THE FIRST TIME WE ARE ASKING FOR YOUR HELP!

We have never sent out a request for funding before

and hope that you understand our need.

We are asking for love of our children. We are asking you to please make a generous donation so that we can create and deliver better lifesaving programs and services to help the thousands of Moms and Dads who are so desperately reaching out to us for help.

If you, or someone you know, has ever been helped by our organization...

If you have ever received comfort and support from us when you needed it...

If you have ever gained valuable, perhaps lifesaving information from our team...

Then you know how important our work is.

It is only by working together that we can find a cure for these seizures. On behalf of thousands of loving parents from around the world, thank you for your tax-deductible donation.

Click Here to Donate Now!

Sincerely,

Laura Cossolotto

President and Mother of Michaela, 13 year old daughter with Dravet Syndrome

P.S. Please send us your updated contact info to receive our newsletters!

The International Dravet Epilepsy Action League is a 501(c)(3) nonprofit organization recognized by Internal Revenue Service - we are not affiliated with any other foundation.

P.O. Box 797 Deale, Maryland 20751

443.607.8267

www.IDEA-League.org

Que Sera Sera

2010-10-28T09:10:00.000-07:00

There is a grief too deep to share

A mourning for things not yet lost

There is no understanding for those who have not lived it

There are good intentions, good wishes, good prayers but no knowledge of the searing pain that rips a mother’s heart with thoughts of memories that will not be made

Reluctance to share your fear

“be positive”

“speak life
“you have no faith”

Are the accusations your heart throws in your face while

“this will never change”

“how will I cope”

“WILL I cope?”

Rage through your over-tired mind

My heart aches from doubt and weariness

My eyes burn from tears

Too many unshed

Too many shed

Why me, why her, why us? Why not?

My back aches from carrying a body almost as long as my own, from being kicked, from being hit, from carrying the hurt

My heart hurts from the constant flow of words

“shut up”

“go away”

“NO”

From a mouth and heart that know no better

I am oh so very weary

Weary of worry

Weary of pretending not to worry

Weary of smiling and laughing while my heart breaks

Weary of carrying the burdens of others when my own are already too heavy to bear

Weary of judging those who don’t understand, who don’t know and are happy not to

Weary of the life I’ve been handed

How can I be so weary of all that but still not wish to give it up? Would I wish my girl away? NEVER! Only well and whole and complete and healed!

There is an aloneness, a difference that keeps you separate from those around you. Even those who would like to think they are your support and comfort. They are not. They are those who get to live normal lives with normal children who have all manner of idiosyncrasies that THEY will grow out of. They do not ever wonder,

“will my child ever learn to read?”

“will my child ever graduate high school?”

“will my child ever have a job?”

“will my child ever marry and have a family?”

“will my child mature past the age of four?”

“will my child live past their next birthday?”

Instead, they worry about them leaving home and starting their new adult lives.

“will she ever be able to live on her own?”

They worry about them being afraid in the night.

“will she ever be able to sleep without us worrying whether she will wake again?”

They worry about them having separation anxiety

“does she even care that I’m leaving her”

To worry is senseless. In the words of the old song …

Que sera sera
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.

New Blog

2010-10-03T10:52:00.000-07:00

I'm no longer the only blogger in the family. Yesterday my mother suggested that Ben start his own blog to share his photos with the world. Now, you've got to understand, Ben doesn't often listen to my mother! However, this time he did and quickly. By this morning he had his blog set up and posted his first photo, the beautiful sunrise as seen from our kitchen window. I'll weigh in occasionally with my thoughts!

For now you can find us at www.benandmarvel.wordpress.com. I'm certain I'll come up with some more creative eventually!

A Homegoing

2010-09-27T09:32:00.000-07:00

This afternoon we will celebrate the life of a Servant of God that I wish I had known better. He was a man from whom we could learn a lot. Last night, as I thought about him and prayed for his family during this time of sorrow, I remembered my own who have already experienced their Homegoing. People that I had ample opportunity to know but don't feel like I did as fully as I could have or should have. These are just two of the remembrances I've written to honor them.

Quiet and Gentle

Quiet and gentle, this was her way
Far from the Father she ne’er did stray.
Her arms, for her grandchildren, were open wide.
How we loved to sit and talk by her side.

Quiet and gentle, she loved us well.
With appreciation our hearts do swell.
To our loving Savior thanks we ascribe
For the dearest Grandma He did provide.

To cause others to love Him, her lifelong mission.
Many praises went up as prayers came to fruition.
Her life an example to all whom would see
Through heartache and joy, always faithful she’d be.

Quiet and gentle still is her way.
Now by the Father she will stay.
His arms for His child open wide.
Home with her Savior she will ever abide.

To our Heavenly Father, thanks be given
For lending to us this servant of Heaven.

Grandpa’s Knees

When I think of Grandpa
I see him on his knees
With one of us, pail in hand
Picking blueberries.

I see him out there, chopping wood
To keep winter fires going
Or in the garden, on his knees
Vegetables to keep growing.

On his knees we used to sit
When we’d come to Grandpa’s place
I’ve noticed that, in recent years,
Our own kids claimed that space.

I see him kneeling by a bed
He prayed so faithfully,
For help and strength for every day
And us, his family.

His children will remember
And grandkids, we will too,
Down on his knees
Grandpa was praying for you.

Grandpa’s heart beat for the Lord
All his earthly days,
On his knees, he showed us
A humble attitude of praise.

Dog Decisions???

2010-09-22T08:52:00.001-07:00

I am seriously wondering if I weighed the pros and cons of having this dog in our house if the pros would win. We are getting NO WHERE with the seizure alerting. Despite being offered yummy liver treats, he would not even lift his head for the three seizures this morning.

So, do I REALLY want to spend the next 15 years trying to keep one step ahead of the dog hair (impossible!) and coughing up a lung because said hair is so hard on my asthma?

I hear the wonderful dog stories from our friends with autistic kids but not so much for those kids with epilepsy. What to do, what do do? Either decision leaves me in tears!

Just doing what I'm told!

2010-08-06T23:57:00.000-07:00

After Dawsyn's birthday party, it was time to snuggle up with Dad and wind down. We still had company so, instead of heading up to bed, they curled up in Dad's recliner. Dad called Milkyway over to lay down on the floor beside them. However, he used the command we always give at bedtime, "Milky, lay with your girl." This was the result.

Okay, I'm here to lay with my girl!

Hmm, how'm I gonna make this work?

Getting comfy ... just a little more wiggle room ...

Aaahhh, all is right in my world! Nitey nite!

Why is it all about Dawsyn?

2010-08-06T23:49:00.000-07:00

That is a question that our son Matthew seldom asks out loud but I am certain must run through his head more than just once in a while!

The truth is, we have two kids. Two GREAT kids!! Sadly, because Dawsyn faces the challenges she does, she gets the most face time, concern time and blog time. Fortunately, she has been blessed with the best big brother EVER. Let me tell you a little about him ...

Matt is an awesome kid, well he was. Now he's an awesome teenager! That is a concept this mother is having trouble wrapping her head around. However, the calendar is not to be argued with, nor is the measuring tape, the scale, the shoe size, the fur on the lip or the grocery bill ... he definitely is a teenager!

Ice cream cake and friends to celebrate becoming a teen

In the past twelve months this boy has shot up to 5'6 1/4" and shows no interest in slowing down. I have a feeling that one day his dad at 6'2" will be looking up to him! His feet, oh my goodness, those feet grow a size every two months! Last baseball season he went through two pairs of cleats. He grew out of the first pair we bought him before the end of the season. This would not be so bad if we lived somewhere with a proper ball season but here it only lasts TWO MONTHS!

Not only does he play baseball, but also plays the piano and now the saxophone. This year he has the opportunity to be in a school band so we've dug out his father's old tenor sax, had it refurbished and it is getting a regular workout! Milkyway is not so sure he likes this particular instrument ... actually, he's quite sure that he does not like this particular instrument ... but we have great faith that we will be enjoying more than just chromatic scales soon! The big band sound will be new to Matt but, because he loves music of all styles, I'm sure that he will enjoy this experience. I hoping that he also takes a liking to jazz and gets involved in the jazz ensembles available.

Music is a pretty big theme in this home and Matt has been able to see many of his favorite groups live during this past year. He and his dad pulled our trailer up to Edmonton to attended YC at he end of May and, by all accounts, had a fabulous time. They enjoyed groups like Skillet, Thousand Foot Krutch, Manafest, Blue Tree and many more. After listening to some of the CD's they brought home, I am quite happy that I opted to let that be an annual Father/Son experience. I am sure there was some music there that I would have enjoyed, I'm afraid that there was more that I would not have!

Our trailer served as the gathering place for our

church youth group. This is at breakfast one morning as

huddled under the awning to stay out of the rain.

In a couple weeks the two of them will attend another big concert at Canada Olympic Park called Rock the River. I'm sure they will have a very good time.

Fortunately, Matthew's musical tastes are very eclectic and he shares with me a love for Southern Gospel. Ben is very happy to spend a weekend looking after Dawsyn so that Matt and I can enjoy our annual bonding weekend at the Great Canadian Southern Gospel Music Celebration in Red Deer.

Michael Booth is one of Matt's very favorite people.
They have had their picture taken together every year for the past three.
Next year, Matt's gonna be taller than Michael!!

It's really hard to catch the Booth Brothers all together so we had to settle for individual shots.

Matt with Ronnie Booth

Matt with Jim Brady

Another group we really love is Ernie Haase and Signature Sound. Matt loves how these guys dress and I ended up spending big $$ updating his wardrobe!!

There is so much more I could say about Matt like how he has a tender heart, how he is a great help to his Dad and me, how he's growing into a young man of integrity. I look forward to the coming days and years of watching him grow into the man God has designed him to be!

So why IS it always about Dawsyn? It's not! Dawsyn's big brother is pretty great too!!

Dawsyn turns Nine

2010-08-06T22:40:00.000-07:00

I'm having trouble believing that is beautiful girl of ours is nine-years old already!

Blowing out the candles

She received a pair of mittens (because she loves to wear them

regardless of weather) and refused to take them off ... it was fun

watching her try to open the rest of her gifts with them on!

Looking far too grown up.

She received one of her favorite gifts a couple days early

when her cousins were here. Auntie Shauna sent her a gardening

set. What a winning gift ... a pair of gloves AND a watering can!!

She's been in seventh heaven since!

A Trip to the Zoo

2010-08-06T22:32:00.000-07:00

My brother and his family visited us during the last week of July. We chose a beautiful warm day to visit the Calgary Zoo. Sadly, we were so busy keeping our eyes on the children, we forgot to take pictures!! I could say that the memories will remain alive without photographic evidence but, quite frankly, my memory is just not that good!

I decided that this would be an exceptionally good opportunity to work on tethering (having Dawsyn and Milkyway attached to each other by a tether). To my way of thinking, being tethered to Milkyway should give Dawsyn a greater sense of independence since she won't have to be holding the hand of an adult. Unfortunately, Dawsyn did not see the logic! She tugged and she pulled and she squealed and Milkyway, the good old boy that he is, stood there and took it like a trooper!! I'm sad to say that, because we actually wanted to ENJOY the day at the zoo, Dawsyn won this battle ... but I still have hopes of winning the war.

It may have been for the best anyway because Milkyway got a little skittish when we got close to the animals. I can only imagine the complete overload of scents in a place like that so I wasn't too hard on him. I just made him remain in a heel and tried to get him to focus on me as much as possible. It took him a good hour to calm down enough to behave as if there wasn't another animal in the world. I don't think that's too bad for a one-year old puppy in a ZOO!

I'm so happy that our trusty helper Emily had come along. There is no way I could handle Dawsyn AND the dog if they are not tethered together. We will definitely have to keep working at it in a less stressful environment. Fortunately, we had the foresight to take Dawsyn's stroller along. I was very handy for lugging the lunch cooler and purses in and eventually Dawsyn crawled into it and let Emily push her from sight to sight!

All-in-all, it was a fun day and we managed to arrive at home weary but in possession of all the children we had left with!

Just outside the front gate of the zoo.

Matt's on his tail, McKenna under his chin and Hunter on his trunk!

You can't see this one as well but McKenna is about to be

pounced on by a mountain lion.

Princess Dawsyn

2010-08-06T22:07:00.000-07:00

Princess Dawsyn LOVES to bathe in the jacuzzi tub!

The more bubbles the better!

Just treat me like the princess I am!!

Milkyway

2010-08-06T22:02:00.000-07:00

Just a few shots of Milkyway enjoying his back yard! These photos were taken on July 8 and I'm sure he's grown since then! He and Matt both seem to have had a real growth spurt this summer!!

Sadly, Milkyway had an accident this summer and has injured his back left knee. On Sunday, July 4, we were preparing to do a tracking exercise so Ben and Dawsyn left the yard to go and hide on us. Milkyway got all excited about his girl leaving the yard without him! He ran up to the higher deck so he could see them walk out into the field across the street from us. When I came out of the house with his tracking lead, he went berserk!! He came flying down the stairs to me but when he landed on the lower deck, his legs kept spinning like the Road Runner before he takes off. Sadly, instead of taking off, the poor boy wiped out. He limped a bit but was so focussed on finding his girl that he mostly ignored the pain. I strapped him up and away we RAN! Of course, he found her in no time!

Over the next couple of days I noticed that he was really favoring that leg so took him in to see the vet. He had indeed injured it and I was warned that if we didn't allow it to heal properly, he could need surgery. He's not been particularly impressed that I've taken away all his balls and have tried to keep him from running. Needless to say, there's been no more tracking practice over the past month!

After a couple of weeks of rest and medication, he was no longer limping but the vet suggested that we don't let him be too active until the end of August. That's a long time to go without tracking practice! Hopefully we will get the go ahead to resume normal activities soon.

**Photos were taken on the day of our first vet visit after the accident. Already he is wanting to play!

Riding

2010-08-06T21:44:00.000-07:00

Every spring and fall, Dawsyn participates with the Mountain View Riding Association. She loves loves loves to ride her horse Sonny! These are photos from the last day of this spring's session.

Dawsyn on Sonny being led by Adrian

Daddy is sidewalking tonight

(getting that close to a horse makes Mommy wheeze!)

Receiving her First Place Award

She received a trophy and ribbon!

Already she can hardly wait for riding to resume in September!!

Trip to Calaway Park

2010-06-05T21:03:00.000-07:00

Once a year a local amusement park, in cooperation with The Cerebral Palsy Association, opens its doors for free for families with special needs. So last night Matthew, Dawsyn and Milkyway along with Mom and our special helper, Emily, headed off to the world of whirling, spinning and coastering!

Milkyway was a real hit! Every child in the place wanted to pet him and many of the adults wanted to ask questions ... more about his breed than his job! Who knew that a labradoodle would attract so much attention? I've gotta admit, he is cute!

In the process we met a number of families waiting
(and waiting and waiting and waiting)
for dogs from Dogs with Wings...I had to zip my lip and keep my opinions to myself. Then we met one family getting a dog from 4 Paws! YAY 4 Paws!!!! They were still doing their fundraising but they were so excited to hear about our experience in training. I loved telling them about how wonderful (and tiring) the experience was!! I got a little carried away and got to remembering our time with our dear 4 Paws families and gotta admit, got a little misty missing you all!!

In fact, just being in an environment where there were so many families with special needs, I found myself looking around for other dogs and friends! I get a glimpse of someone and think, "Oh, there's Sean" (I never did see anyone as tiny and cute as Bethany) or a boy that reminded me of Hudson. I've got to admit, it all made me a little lonesome for y'all (SEE, now I'm talking like Lisa)!

Milkyway found the whole experience just a little overwhelming. I guess, since we've settled back into our regular routine, the biggest trip he's been on has been to the local Walmart so an amusement park was a bit of a shock! The poor little guy did not know what to think about his girl going off with Emily and whirling and spinning on all those rides. While we waited, I'd find a place to sit down and try to get him into a "down" but he was so antsy trying to keep his eye on Dawsyn that he kept jumping up and looking in the direction she went. Some of the rides created their own weather systems blowing wind right at us. Whenever Dawsyn would fly by, Milky would get a face full of "Dawsyn smell" and it almost drove him CRAZY! I actually had difficulty handling him sometimes because he was so desperate to get to her. He even tried to jump over the fence into the bumper cars!! The noises of the machinery really made him jumpy as well.

At one point, Dawsyn and Emily were making a speedy trip to the washroom and Milkyway was NOT impressed at the slow pace he and I were following at. He finally had enough and just BOLTED. NOTE TO MOM: When Milky decides he needs to follow his girl, hold on for the ride!! I didn't lose my grip on the leash but did have to run like the wind to keep up with him. I actually had to take him into the washroom so he could tell where she was before he would settle down to wait for her outside!

Four hours of wandering around an amusement park with an excited girl and a jumpy dog left me exhausted. I slept very well last night!

It's SNOWING!

2010-05-29T07:57:00.001-07:00

Ben and Matt are gone to Edmonton for YC. Ben says his ears are still ringing from the Thousand Foot Krutch concert last night! Matt had a good time though. It's cold and raining there and they are expecting all 50 kids from the youth group back at the trailer for breakfast!! Ben has all the muffins and yogurt out on the table outside ... I reminded him that I did NOT want 50 teenagers in our trailer!!!

It's snowing snowing snowing here. It's wet and heavy and my poor little plants (the ones I put in the ground) will be toast! The ones in my big containers will be crushed by the snow covered tarps on them. Milkyway ran out it in this morning and got quite a charge out of chasing snowflakes (they're that big)! Once he got cold and came back in he gave me look that said, "What the **** is THAT!" He may just choose not to pee again until it's gone.

All I have to say is "Baahhh Humbug"!

A Story Like Ours

2010-05-28T13:37:00.000-07:00

Kim Amend is a mother of a little boy with Dravet's Syndrome. Their story is very like our own and I wanted to share it with you. Thank you Kim for sharing your family story with the rest of the world!

http://www.youtube.com/watch?v=ZiZt6PgjMwA

Milkyway Does Children's Church

2010-05-16T21:15:00.000-07:00

Milkyway went to Children's Church with Dawsyn today! Ben and Matt had gone fishing for the day and controlling Dawsyn in a crowd is sketchy at best so I decided to put the working dog to work! We tethered up before getting out of the van and walked into church as a three-some. Smooth as Skippy Peanut Butter!!

We got up the stairs to the classroom where I truly had no intention of leaving that poor dog! I was concerned that having him in class would make more work for the teachers than Dawsyn alone. However, being the "Wonder Couple" that they are, they insisted that Milkyway stay. Michelle spoke to the children and reminded them that this morning, Milkyway was working and that they needed to ignore him.

I put him in a "down", unhitched the harness and let Dawsyn go about her churchly business.

By all reports, Milkyway stayed in his down the ENTIRE class!! Dawsyn did her very best to drag him around the room but he held his ground. I think he saw all those young children and decided to make himself as invisible as possible! One little girl decided that she was above the rules and continually tried to disrupt him and feed him treats but that situation was also put to rest.

So, the verdict is in, Milkyway is a STAR at Children's Church ... Dawsyn is, well, she's just Dawsyn! In my book, Teachers Michelle and Kevin, you are the very very BEST!!

Normal is Just a Setting on Your Washing Machine

2010-05-16T06:42:00.000-07:00

In one short week I've returned to my bad habit of NOT blogging! You've got to admit, I did pretty well for two weeks but the hum drum of home seems to eat up the hours in the day. Truth be told, the first few days at home, I felt like I'd been hit by a truck and had trouble getting anything done!

Sunday was busy with taking Milkyway to church and getting him baptized. KIDDING! But the poor fellow did have to make the rounds and meet everybody who has been so supportive in getting him here. A quick trip to the grocery store in the afternoon and company for supper rounded out the day.

On Monday morning it was up early, get the kids ready for school and say goodbye to my Mom and Dad who had so graciously stayed with Matt during our absence. On the way down the stairs to head out the door, I noticed something. Something nasty and vile! You see, when we first walked into the house upon our return, it was SPOTLESS. The windows sparkled, the floors shone, the surfaces were free of dust. And NOW, just a short 36 hours later, there were doggy footprints EVERYWHERE, there was doggy nose prints on my windows and the HAIR! Oh the hair! It has invaded every nook and cranny!! The corners of every step are full, the sofas are covered, even my bedding has dog hair on it! I frantically ran to the dog to see if he'd mysteriously gone bald overnight. There was no other way to account for THAT MUCH HAIR!

I must have been exhausted because I just broke down and bawled. My Mom felt badly that, after trying so hard to leave me with a spic and span house, she had to leave me in not only a mess but also in an emotional mess!

Despite the meltdown, my parents got away and headed back to their own busy life and I got the kids to school. By this time, however, there was no way I was going to put myself or Milkyway (who still had plenty of hair by the way) through the stress of having to "perform" for Dawsyn's class. I knew that the children were very anxious to meet him, however, so I did take him in to introduce him. I also took him to Matt's class to say hello.

Then, did I rush home to deal with the furballs in the corners, nose prints on the windows and footprints on the floors? NO, I went to bed and slept for three hours! I got up in time to take Milkyway for a good walk and waste an hour before heading back out to the school to pick up the kids. Tuesday was a repeat of Monday minus the doggy visits to the classroom.

By Wednesday, things were looking up. I replaced the going back to bed with an extra walk. Lucky Milkyway got two good walks that day! I got to enjoy the company of a different friend on each. I also got out for my first round of golf for the season on Wednesday evening. Any day that includes a golf game is a good day!

It took me until Thursday to get back to normal ... normal being that I DON'T CARE that my house is a mess and I haven't had time to cook so just make Kraft Dinner and hotdogs for supper! I really miss the part of the trip where someone else makes the meal and we just sit down and eat and the part where I leave in the morning and when I come back the beds are made and the vacuuming's been done!! On the other hand, Dawsyn is very happy to be back in school and back to her day to day routine and Matt is happy to have his family home.

Friday was a wonderful day. I picked up my bedding plants and got my planters all loaded up with wave petunias, pansies and ivy. I love a day spent in the sunshine and digging the the dirt ... well, dirt that comes in a bag and doesn't have the nasty surprise of the occasional earthworm!

So normal it is! I continue to look at my dirty house with disdain but do little to correct the problem. Instead, I take regular walks with the dog which should help my ongoing commitment to lose weight. The weekdays are full of activity, work for Ben, baseball for Matt, riding for Dawsyn, golf for me. Then the weekends are a flurry of activity. Ben golfs and does odd jobs that we don't have time for during the week. I chase kids, visit with neighbours and drink coffee ... a LOT of coffee!

Saturday morning sun bathing, in her nightie of course!

Dawsyn feeding Milkyway his breakfast ... piece by piece!

Today is Sunday and Ben and Matt have decided to worship their Creator in His creation! This act of worship includes a friend and his two sons, a quad, a boat and some fishing poles. Dawsyn had quite a late night last night because neither of her parents felt like going to bed when the evening was so beautiful! She and I will go to church and then spend another beautiful day in the sunshine. This evening we've planned to have a potluck with some of our nearest and dearest friends to round out a lovely spring weekend!

Home At Last

2010-05-08T22:48:00.000-07:00

We are home safe and sound! Milkyway did great on the airplane. In fact, he flew better than Dawsyn! She had to be entertained the whole time and he curled up in a ball and slept the whole trip.

There was a fabulous party to meet us at the airport. How fun to walk through the door and see so many friends and family to greet us!!

There will be four of us in our bed tonight. I planned to put Dawsyn and Milkyway directly into her bed but then I'd have to sleep there too and I REALLY want to sleep in my own bed!

Goodnight!

2010-05-07T20:09:00.000-07:00

We came to Ohio to train with and bring home Dawsyn's new service dog. What we couldn't know ahead of time was that we would also meet some really wonderful people while we were here. We knew this dog was going to be an unbelievable blessing to our lives. What never ceases to amaze me is how God plans "surprise" blessings for us along the way! These are some of the people we have been blessed with knowing and have been so grateful for these past two weeks. You will have seen them all in recent blog posts.

Sean, Bethany, Bella, Willow and Pepsi

These girls wiggled their way into my heart immediately! Bella and Dawsyn have totally different "issues" but are so very alike. I could have easily taken them both home with me!

John, Pam, Logan, Dawson, Ella & Hawkeye

I got great hugs from Logan every day and I'm gonna be missing them by this time tomorrow!

Joel, Lisa, Hudson and Lorelai

A beautiful family that I sensed from the start I would want to know better than these short weeks would allow.

Ben and I look forward to growing these friendships despite the many miles between us.

Graduation Day!

2010-05-07T19:50:00.001-07:00

Phew! Mom passed the test so we got to graduate!

This is our graduation picture.

This is our team of trainers Kayla, Jessa, Jeremy, Jennifer and Krista with Radar, Pepsi, Milkyway and Hawkeye

Kayla and me. We were good buddies these past two weeks.

Tomorrow we are going to visit the US Airforce Museum. The Wright Brothers who invented the airplane were from Ohio and their plane, the Kittyhawk, is here in the museum. We will see it and all kinds of cool airplanes. Then at 4 o'clock, we will get on an airplane and fly home! Yippee!!

See you soon,
Dawsyn & Milkyway

Yellow Springs, Ohio

2010-05-06T19:26:00.000-07:00

Welcome to Yellow Springs Ohio! Where you are far from the monotony of chain stores and restaurants. Experience something special when you Find Yourself Here.

Yellow Springs named one of 10 Coolest Small Towns in Budget Travel

We heard about a great artsy fartsy little town nearby and wanted to check it out. We drove there on Monday only to discover that most of the shops were closed that day. We had a nice supper with our friends and managed to buy a couple of really cute hats ... one for Dawsyn and one for ME!

Beautiful hat models Bella and Willow!

This girl likes hats as much as I do!!

The creamery we went to today also happened to be just out of Yellow Springs so we went back into town. I didn't get to shop in any more of those cute little shops but Ben did get me some good pictures.

I do believe this is the Granola Capital of Ohio!! For those of you too young to remember, "granolas" are those your grandparents labelled "long-haired hippees"! Think tie-dye and birkenstocks. I heard this week that Yellow Springs actually still has an operating commune that's been there since the 60's. Ben was afraid to go searching for it for fear that I'd stay!

Yellow Springs is the home of Antioch College, a private, independent liberal arts college. The College campus and buildings are very beautiful. I'm afraid our photos don't do it justice.

More information and better pictures can be found at http://antiochcollege.org/

The "artsy fartsy" always seems to come with a heavy dose of new age. This is evidenced by the signs for tarot card readings on every corner and crystals in shop windows. It seems to be a very liberal accepting little town which is home to many faith groups as diverse as buddism to baha'i to both liberal and evangelical christian churches.

I look forward to visiting again ... but who knows when!

This is from the town's website and describes this delightful little place better than I can:

Yellow Springs, Ohio is an eclectic village of 3,800 known for recreational attractions, unique shops, gourmet restaurants, lively arts and healthful living. The community is culturally diverse, values self-expression and prides itself on being open, friendly and creative. Recently Yellow Springs was named one of the Best Hometowns by Ohio Magazine and one of Budget Travel’s “Coolest Small Towns”.
The area - and more specifically, the Yellow Spring - was discovered around 1800 and quickly became a major attraction for those seeking its "curative" waters. For more than 100 years the town was a popular attraction with hotels, spas, boarding houses and a tavern to serve travelers on the nearby stagecoach road. With the completion of the Little Miami Railroad in 1846, Yellow Springs became the center of trade and recreation for the region.

The spring, which gives our town its name, still exists but the railroad has been converted into miles of biking trails. The Little Miami Scenic Bike Trail runs through the heart of Yellow Springs. The natural beauty of the 1,000-acre Glen Helen Nature Preserve features 25-miles of hiking trails, waterfalls, a Raptor Center, a museum and a nature shop. Additional hiking and camping opportunities are nearby at John Bryan State Park and Clifton Gorge.

Today visitors flock to Yellow Springs for shopping, dining, recreation and to enjoy a variety of events. The downtown offers a rich and rare assortment of shops and restaurants as well as live music and theater, a chamber music series, interesting galleries and a first-run art-film movie theater. Rich visual and performing arts abound in this vibrant community of artists.

In Yellow Springs, you are far from the crowds and retail chains of the malls. The vibrant streets and window-boxed storefronts invite you to explore. Here you will find health foods, herbs, hand-crafted jewelry, pottery, stained glass, toys, art of all kinds, books, bicycles, imported clothing and delight in a variety of dining choices.

Yellow Springs is an authentic small town with activities to fill a variety of interests.

Last Day of Training!

2010-05-06T19:15:00.000-07:00

FINALLY, we are all done training. Well at least we are all done the training in Ohio. Mom and Dad are still going to have to practice every day once we get home and I will still have to play at least one game of Hide and Seek a day for a long long time. I will just be happy to be in my own home and be able to come back to school to see all of you!

Mom & Milkyway getting ready to go find me.

Playing " Catch Me If You Can" after they found me!

After training today we went to a real dairy farm where you can see the cows and feet some goats and play on some tractors. They have an icecream store. We had lots of fun there.

Tomorrow morning my Mom has to do a test in the Mall. Dad thinks its a test to see if she can walk through the mall without buying anything but really it's a test to show that she can handle Milkyway in public and make him be obedient. I hope Milkyway does better at being obedient in the mall than I do! After that, we go back to the 4 Paws Training Center for our Graduation!

See you soon!
Dawsyn & Milkyway

Pictures just for fun!

Thought I'd check out Milkyway's Crate. Mom and Dad thought it might be a good place for me to go for a time out!

There's that soft fluffy pillow I like!

This is how my silly dog sleeps! Sometimes when he's dreaming, his feet move like he's running in the air!!

It's Still Time to Go Home

2010-05-05T19:40:00.000-07:00

Okay, I have shopped ALL the stores within reasonable distance and still have not found a pair of shoes to bring home so I done! Time to leave and buy shoes in Canada, at full price!! I was so excited to get to TJ Maxx but did not find myself one thing there ... oops, I have a pair of shorts laying here and can't remember where I got them, maybe it was there. The stores, like the days, are all starting to run together. I did find quite a lot of stuff for Ben and Matt. Tonight I went back to the Mall and stopped in some of the shops I'd been eyeing up while working with the dog. I ended up finding a few good sales at JC Penney.

I must be tired if I don't even feel like shopping anymore. I may need an intervention when I get home. Sherrie, I think this is your department! Line me up some sales!!

Day 10 - It's Time to Go Home

2010-05-05T19:31:00.000-07:00

I am really tired of doing the same thing every day! I know Mom and Dad need to practice with Milkyway but I'm ready for them to practice at home!! Today we went to the mall and we went first for a change. The trainer said that my Mom does a good job handling the dog in public. Milkyway found me really fast during our track so we didn't stick around. Dad and I came back to the hotel where I had a nap ... Mom shopped. My parents did more practicing during the afternoon, we came back to the hotel and had supper. This evening I played with Milkyway. I hide under a big fluffy blanket and he finds a way in! It's like hide and seek on a small scale.

Dad took almost 300 pictures yesterday but today he didn't take any so we don't have anything new to show you.

I will be back in school with you on Monday and I can't wait!

Love,
Dawsyn & Milkyway

May 4 Miscellaneous Pictures

2010-05-04T19:51:00.000-07:00

Ben took almost 300 pictures today! Normally I would be thrilled about that but today, not so much! It takes a long time to go through 300 pictures and I really like to share some of my favorites with you. However, this far into training, I am starting to whither and these blog updates have been keeping me up well past my bedtime. Anyway, this will just be a very small smattering and sadly, will have to go up without extra commentary from me. I may revise the post later to add names and comments.

County Courthouse

Beautiful old house on 15 acres. $397,000 ... we're moving!

Day 9 - Carnival

2010-05-04T19:40:00.000-07:00

Mom and Dad are really starting to wear out so I drove to training today!

This is just me checking my GPS to make sure I can find our way back!

We did two good tracks today and then I crashed! I guess I'm wearing out too. At least I wasn't still driving!!

I have the very best, soft pillow ... he's even furry!

I watched a movie with my friend Bella this afternoon while the parents listened the 4 Paws veterinarian talk about dog health. When they starting talking about giving a dog mouth-to-mouth respiration, I decided Dora would be more fun.

After doggy school we went to a carnival along with Bella's family. We really had a fun time! We went on lots of rides. Bella had a seizure on the elephant ride and had to go rest in her truck with her Mom for awhile but her sister Willow stayed with us and went on some more rides.

Driving the fire engine was my very favorite ride. I went on it three times!

We're all getting really tired and are ready to come home again to see you all.

Love,
Dawsyn & Milkyway

Day 8 - Take Me to the Mall!

2010-05-03T19:14:00.000-07:00

Today we all went to the mall, even Dad! We practiced having me tethered to Milkyway so I don't wander off like I like to. I really don't mind being tethered though because I have a special leash that only I get to use. After we did that for a long time we played a couple games of Hide and Seek in store. The first time Dad and I went to hide. Mom and Milkyway found us really fast. When Mom and I went to hide, we went a little further and found a great corner where I could rearrange the clothes on the rack until Dad and Milkyway go there. I like sorting clothes so wasn't very happy that they found us so soon!

This is some of our group waiting their turn in the mall

The afternoon was spent in the training room again. The training room is starting to get very boring for me! However, Mom and Dad need all the practice they can get handling Milkyway because they have to pass a handling test before we can take Millkyway home.

All the dogs are in a "down" and the parents are walking around and over them. This is to remind them that once they've been given a command, they must not break it even if there are distractions.

This evening we went out for supper with another family. They have two little girls that I played with. Milkyway went with us and I was tethered to him while we walked down the street. At the restaurant, we gave him the "under" command and he went under the table and laid down. He was so well behaved, we almost forgot he was there!

These are my friends Willow and Bella. Bella has seizures too but hers are because she has tumors growing in her brain. Her dog is called Pepsi.

There were so many fun hats in this store! My Mom bought herself and me one ... but not this one.

Love,
Dawsyn & Milkyway

Day 7 Photos

2010-05-02T18:52:00.001-07:00

Before we leave for the day. This girl knows the way to her dog's heart!

Morning in the Rain

Milkyway waiting for our turn to track. When it's raining, his hair gets all curly!! I love it!

Mom and Milkyway in the rain talking to Saphira and her handler.

Hawkeye and John on their way back with from tracking Logan.

Lorelai waiting her turn. She's a beautiful Burmese Mountain Dog and is a bundle of energy and is very playful. Lorelai will be moving to Alabama with her boy Hudson who has autism.

This is MiMi tracking her boy, Jamie.

Afternoon in the Training Centre

Dawsyn and Milkyway "bonding" over treats

Maestro, the trainer's helper! A very nice Golden Retriever

Sean and Pepsi practicing "over". The dog lays over the legs or body of their child when they need to feel pressure or weight. Pepsi's girl Bella lives in New Jersey and has a rare form of epilepsy but not Dravet's.

Hawkeye practicing "lap" and just chilling. His boy Logan lives in Denver, Colorado but his Mom was born in Calgary.

This is Radar, Hawkeye's brother. They have another brother named Trapper in our group. They are called the M*A*S*H* litter.

Tonight just before bed

Before we came I think I mentioned that if we could teach this dog to play Go Fish, we'd have it made! Dawsyn is doing her darnedest to fulfill that goal.

Just my goofy goofy girl!

Day 7 - No Sunday School

2010-05-02T18:46:00.000-07:00

Sunday is one of my very favorite days. I love to go to Sunday School and to Children's Church but today they worked us just as hard as every other day this week!! We played Hide and Seek in the rain today. My turn didn't come for a long time so I had a little rest in the back of our car for awhile while the others hung around in the rain.

Dad and I went deep into some thick bush and hid. Milkyway came barreling behind us really fast! My Mom kept having to slap branches out of her way so that she didn't get an eye poked out! We all came back with muddy feet and wet clothes.

This afternoon we learned to do tricks with our dogs. The dogs all know how to shake, give me five, high five, play dead and a bunch of others. It was quite obvious that the parents were not as good at getting the dogs to do their tricks as the trainers do. Mom will keep working at it and will hopefully be able to show you some when we get home! They were a little better and getting the dogs to do some of their "work" jobs.

This is an example of "touch". Mom pointed to my leg and said "touch" and Milkyway put his paw where Mom pointed. This is a good way to distract a child from doing something that his Mom or Dad doesn't want him to do.

This one was is called "lap". The dog puts his head on the child's lap to comfort them if they are upset. I wasn't very upset right then. I just wanted to give him a good rub!

This one has a really long name. Every time I would do this, Mom and Dad would say "Don't DO that!" I really don't know why they were telling Milkyway not to do that. I would have liked a ride.

I had kind of a bad seizure day today. I had five head drops (they only last about 5 seconds each) while we were at our training sessions and then had a three minute one when we were back at our hotel. Milkyway is getting lots of chances to learn that "seizure smell"! I think tomorrow will be a much better day!!

Love,
Dawsyn & Milkyway

Mother Mistake!

2010-05-02T14:18:00.000-07:00

I keep saying that I'm not playing out. I'm not too tired. I still have energy at the end of the day. Well, apparently I am NOT so on the ball at the beginning of the day!!

During the Friday night Dawsyn had three seizures. On Saturday morning I gave her her meds as usual. However, I made a mistake. I gave her Saturday evening meds rather than her regular morning meds. We didn't discover my mistake until it was time for her evening meds and they were missing but her morning ones were still there. What a screw up!!

We went ahead and gave her her morning meds at night. Apparently, that was a mistake! She had a good night with only one seizure but the poor girl's had a miserable day! She's had five head drops and one nasty three minute tonic clonic.

Mom's feeling like idiot and Dawsy's paying the price!

Day 6 - Downtime for Dawsyn (Letter to Class)

2010-05-01T19:25:00.000-07:00

Last night was a big test for Milkyway because it was the first time since we got here that I had a seizure. I had three seizures between four and seven in the morning. When I had the first one, Mom yelled at Dad to wake him up and he had to go hunting for Milkyway because he'd snuck out of our bed to the sofa in the living room! He probably thought he'd have more room out there than in the same bed as me and Mom!

Dad brought him in and got him up on the bed beside me. He was a little sleepy so didn't really know what he was supposed to do at first. Mom looked after me and Dad told Milkyway he was a good boy. When my seizure was all done, they fed him some hotdogs and told him "Atta boy! Good boy!" over and over. He licked my arms and face for awhile making sure I was okay. Licking also helps him remember what my seizures "smell" like so that when he smells it next time, he can bark to tell Mom and Dad. He snuggled up really close to me and we all went back to sleep for awhile. When I had the next seizure, he woke up more quickly and licked me and nuzzled me until it was done. Again Mom and Dad gave him hotdogs and told him he was the best dog on the whole world! In between seizures two and three, Milkyway was on one side of me and Mom was on the other ... like a Dawsyn sandwich. We are all sleeping so tightly but heard a "thump" and woke up. Poor Milky had slipped right off the bed and was wedged between the bed and the wall on his back with his feet sticking straight up in the air! Mom was laughing and told Dad to take a picture but Dad just wanted to help our poor dog out of his predicament!

Even after that traumatic experience, Milkyway still wanted to snuggle up next to me for the rest of the night! He did his good job when I had my last seizure. Pretty soon he will know my seizure "smell" so well that he will be able to smell it even before I have a seizure and will bark to let my parents know. He really is an amazing dog!

After four busy days of training, I was pretty tired this morning so Mom and Dad decided that I should take the morning off. Dad stayed at the hotel with me while Mom and Milkyway went to practice obedience at the Mall. It was agreed that it would be more important for Mom to be able to handle me while shopping than Dad. Mom LOVES to shop ... Dad, not so much!

I had quite a lazy morning of movies and naps, naps and movies! By the time Mom came back to pick us up for the afternoon training session, I was raring to go. Milkyway was worn out!! I think maybe Mom took full advantage of being in the mall without me and Dad because she came home with a lot of bags and one tired pooch!

During the afternoon training session Mom and Dad learned about dog health and grooming stuff. Did you know that even your dog needs to get his teeth brushed and toe nails clipped?

This evening we did some more Mall "work". Mom said Dad needed to practice. She came home with a bunch more bags!

We went to my brothers favorite restaurant for supper ... only he wasn't with us! If you ever travel to the United States, look for one of these if you are REALLY hungry. It's a big big buffet with everything from salad to steaks to pizza to chicken cooked half a dozen different ways to lots and lots of different desserts, even never ending ice cream cones! Matthew's going to be sad he missed it!

My big furry boy is sticking pretty close to my side tonight and I'm glad to have him there!

Love
Dawsyn & Milkyway

BONUS PICTURE:

Snowball bushes - these are one of my favorite shrubs. I brought one out of my yard in Lethbridge and have it planted in my front yard. It is being very slow about growing and producing flowers ... think it may have something to do with late April SNOW STORMS??

Day 6 - Why We're Here

2010-05-01T06:10:00.001-07:00

Dawsyn reminded us last night of just exactly why we've come here. At 4 a.m. she had her first of three seizures. Each time, I would attend to Dawsyn and Ben would drag Milkyway out of his sleep, put his nose right up close to her face and praise him up. When it was all over, we'd give him hotdogs and lots of praises. Next time we will encourage him to give one good bark. Eventually, that bark will be our signal that she's having a seizure.

After the seizures were over, he would lay close to Dawsyn and lick her hands and face. I know that grosses some of you out but that "smell" that he is licking will be his signal to alert. The better he knows it, the better he will be able to do his job.

At one point, Milkyway was stretched out on one side of the bed and I was on the other with Dawsyn sandwiched between us. I woke up to the sound of a "thump" to find that he had slipped off the bed and was wedged between the bed and the wall on his back! Poor boy!! It was actually kind of funny.

Today we are doing some obedience training in the mall. The last thing Dawsyn (and her Dad) wants to do is spend a whole morning in the mall. We also figured that she could use a quiet morning as she's been going hard every day. So she and Dad are going to chill out and I'm going to the mall. Honestly, who do you think really needs to be able to handle him in a mall anyway? I'm going to become the MASTER at shopping with a service dog ... look out Cross Iron Mills! Do you think I'll need to take Dawsyn when I shop at home?

I'll fill you in on how we do ... and what we buy!

Random Pictures - April 30

2010-04-30T18:48:00.000-07:00

We thought is was kind of interesting that the National Day of Prayer would make it onto the street sign posts ... all of them at major intersections. Do we even know when the Canadian National Day of Prayer is?

So why do you figure I am the one captured on film doing "poo" duty?? It actually sums up the job of motherhood some days!! Ben doesn't even remember taking this picture!!

Day 5 - Hide and Seek AGAIN! (Letter to Class)

2010-04-30T18:40:00.000-07:00

We did the same thing today as yesterday and the day before! Two games of hide and seek in the park and then a lot of boring talk among the adults in the afternoon. The hide and seek is okay but I am getting tired of always having to be the one to hide! I think Milkyway should hide and I'll go find him but Mom and Dad say that he has to practice his finding. When the other kids are playing hide and seek with their dogs, I hang out in the park. There is one family that I spend a lot of time with. Chance is 5 years old and loves to play soccer ... or football ... or basketball ... or anything with a ball! He has twin sisters, Cadence and Aubrianna, that I like to "help". They don't seem to think they need as much help as I like to give but we're having fun together anyway.

In the afternoon my Mom and Dad were learning more about tracking and tethering. I played computer for awhile but it was such a warm day outside that my Dad finally took me out to the trampoline.

We were very tired after training so didn't even go out for supper tonight. Dad and I hung out at the hotel and gave Milkyway and good combing. Mom went shopping ... she's never too tired to shop!

I really like Milkyway to sleep with me but sometimes he sneaks off the bed when he gets too hot.

They promised us that tomorrow we're going to do something new! I can't wait!!

Love,
Dawsyn & Milkyway

Random Pictures

2010-04-29T19:15:00.001-07:00

Didsbury REALLY must be God's Country ... He's been faithful to us since the beginning of time! Here in Ohio, apparently He's only been faithful for 50 years!!!!

Practicing putting Milkyway in a "down" and having him stay there until he's given the "free" command. Once given a command, he should not break it until given permission, even if it's hours!

Just a really good picture of our pretty boy!

Kisses!!

Out in the parking lot practicing "heel".

A dog and his girl!

In the rental car ... he likes to sit close enough to touch her!

The next two pictures were taken BY Dawsyn! She may become a photographer like her Daddy!!

Day 4 - More Hide and Seek (Letter to Classmates)

2010-04-29T19:04:00.000-07:00

This morning we went to a different park and played some more Hide and Seek. Sometimes my Mom hides with me and sometimes my Dad does. I hide really well but Milkyway always finds me really really fast! He has the advantage of having a really good sniffer.

In between our turns at Hide and Seek, I like to throw the tennis ball for him to chase after. The funniest part of that game is that my Dad is usually hanging on to the leash so when I throw the ball, Milkyway runs after it really fast and my tag gets dragged after him! :-D I also on the playground with some of my new friends. Hudson is 14 and has really severe autism so he has trouble speaking and doesn't like to look right at me. That's okay though because we still like to take turns on the slide and I do enough talking for both of us!

This is us in the park waiting to take our turns at Hide and Seek.

At lunchtime I got to take a break and play in the 4 Paws Playground. I especially like the trampoline.

In the afternoon Mom and Dad had to do a bunch more obedience training so I just watched a movie and then took a little nap. They practiced the sit, down, heel and under commands some more and also learned the stand command and how to make Milkyway heel when we're shopping. Dad said that Mom could learn that one by herself because he DOESN'T shop! Mom pushed the shopping cart around and said that Milkyway did great. That means we'll definitely be able to go shopping ... or at least Milkyway and Mom can!

Parents working with the dogs While they were doing that,

in our training room. I was doing this!

This evening we had lasagna for supper and I was so hungry I ate two whole helpings! That gave me enough energy to make a short shopping trip. Mom wanted to buy a couple of special things for Matthew. When we got home, we chatted with Matt and Nana and Papa on Skype. Now I'm wiped and am heading for a snuggle in bed with my puppy!

Getting Kisses!

Love Dawsyn

Day 3 - Hide and Seek

2010-04-28T19:04:00.000-07:00

What a fun morning we had! Today we drove to the Xenia Fairgrounds with eight other families. Once there, we took turns playing Hide and Seek with our dogs! One of the parents and a trainer would go and Hide with the child. About ten minutes later, another trainer, the other parent and the dog would start to Seek. We call it "Tracking". The trainer puts a special harness on the dog and uses a leash that only ever gets used for tracking. When the dogs see it, they get all excited and start sniffing the air and whimpering. Sometimes they even bark! The trainer talks them up like this, "We is she? Where's your girl? Where'd she go? TRACK!" When he says "track" the dog takes off sniffing the air and the ground until he catches the scent. Once he has it, he takes off at a run and the humans tracking with him have to run too ... that was kind of funny to watch!

Do you know what else was funny? I was one of the most patient kids!! Can you believe that? Most of the children here have trouble waiting for ANYTHING! Many of them have autism, others have two or three different things wrong and three boys here have Dravet's Syndrome! I have never met anybody else with Dravet's before. Two of the boys are brothers and they both have Dravet's but one is worse than the other. They both have more and worse seizures than me. The other little boy here with Dravet's is 4 years old. His name is Joshua and he has fewer seizures than me and seems to be doing pretty well. Our parents talk a lot while I play with him and his brother Nathan.

Anyway, back to Hide and Seek. I was the second last one to go hide. My Dad and I took off with Trainer Christy. We ran across the lawn and around some trees and across some grass and along some other trees and around a corner and found a great little nook to hide in. About 10 minutes after we left, Trainer Jeremy and Milkyway and my Mom came hunting. Mom said that Milkyway sniffed the air and then the ground. He snapped his head in the direction I ran and took off running with Jeremy and Mom running after him. Every once in awhile he would run in a circle, sniffing the air and then off at a gallop in the direction I had run. It took them only three or four minutes to find me!! Milkyway came around the corner and we all cheered! Daddy fed him tons of hotdogs and we all told him what a good dog he is! Mom was a few paces behind him and she was REALLY panting when she got there! I think that playing hide and seek a few times a week will convince my Mom to take up jogging!!

During the afternoon we went back to the 4 Paws facility and I watched a couple of Dora movies while Mom, Dad and Milkyway practiced "Sit", "Down", "Heel", "Free" and "Under". "Under" is the command we will use when we take Milkyway out to restaurants. He goes under the table and lays there quietly while we eat.

Sorry I don't have any pictures to share with you today. It was so busy that my Dad didn't even take any pictures! It's got to be busy to keep him away from his camera!

After training today we had supper and then Mom took me swimming while Dad worked with Milkyway. That all left me pretty tired so I'm off to bed. I'll write again tomorrow.

Love,
Dawsyn & Milkyway

Morning of Day 3

2010-04-28T04:56:00.001-07:00

The night was a little restless. Milkyway snuggled up on the bed ... and takes A LOT of room! ... but was a little unsure about being there. He got down a couple of times and I'd call him back up. Eventually I let him just sleep on the floor. At 4 a.m. he woke me up with a sloppy kiss and was really antsy so I thought I'd better get him outside. He hasn't had a poo yet so I thought he might finally be ready. He still didn't but did have a pee. Tonight I have to remember to put the water bowl away by 6 p.m. to avoid getting in the habit of middle of the night pottying!!

He will take a Pepcid AC twice a day for the next five days just to get him through the adjustment of joining his new family. Honestly, if he knew what he was getting into, he'd probably need something stronger than Pepcid!!

We are going to have to really work on him bonding with Dawsyn because so far I'm his girl!! He follows me where ever I go and he should be doing that with Daws.

We'll better get on with getting ready for the day. The skies are blue today and we're supposed to see 17C. Warmer still over the next two days ... yay! Sorry about the weather at home. It doesn't sound very nice. My computer is telling me that you are under a winter storm warning. Stay safe everyone.

Day 2 Continued

2010-04-27T18:01:00.001-07:00

The first post was a copy of the letter we sent to Dawsyn's class. We are trying to update them every day.

Other tidbits on the day:

- Milkyway is smaller than I expected but still a good size. He's only 10 months old so still has some growing to do. Zeke and Kacey are bigger than him but Mingo, Skippy and Quincey are all a lot smaller. A little taller and longer than Moshi but not as "thick". He's all legs and tail!

- Dawsyn and Milkyway played fetch with a tennis ball tonight! They both LOVE LOVE LOVE it. A match made in heaven!

- He sheds! I was really hoping for a non-shedder but 'twas not to be. :(

- He's going to sleep with Dawsyn and I tonight ... we'll see how that goes!