June 29, 2014

You Are So Lucky

"You are SO lucky you are married to me," said I to my husband no less that 60 times yesterday.

He readily agreed.

Some husbands got sexy, toned and spray tanned.  This husband got punctual, efficient and organized and he wouldn't trade those qualities for arm candy any day.

Those qualities were manifest in their fullest yesterday.  You see, this isn't your mother's road trip.  Remember those road trips of our youth?  The ones where you rode backwards in the station wagon the entire day and with every left turn your dad made you had to strong arm the precarious tower of hard shelled suitcases stacked next to you to keep them from falling on you, and you would sit that way for 12 hours a day suffocating from the heat as the entire air circulation of the car was dependent on the three ac vents in the front seat - one positioned on your father, the other blowing on your mother and the third one in the middle pointed up therefore covering the ambiguious "everyone".  On the lucky days there would be a box of Wheat Thins and squeeze cheese that would be passed around.  Bt the only comfort you would have would be your Walkman that always seemd to have only one working earphone (unless you jiggled the wire just right) that you would cling to hoping your batteries wouldn't give out as you would play, rewind, and play again Debbie Gibson's, "Lost in your Eyes".

At least you thought it would be 12 hours of driving - it always turned into more like 15 or 16 because your dad never made hotel reservations because he didn't want to be committed to stopping in case we were on pace to travel further that day.  We never were.  So we were resigned to clinging to our Holiday Inn hotel directory as we traveled from town to neighboring town in the wee hours of the night hoping for vacancy.

Yes, classic nightmares memories from my youth burned into my brain.

My kids, just for a full and balanced life experience, will need to have a road trip like that sometime - just not this time.

All that I have been denied by having a large boat as my daily driver (namely not fitting under the maximum height bar of Chick Fila drive thru) has been compensated for in spades after a 17 hour day of driving in the big beastly van.
on a mission to fulfill Alan's bucket list to visit every Cabela's in the US

Ultra-stuffed captain's chair and 32" high def tv with surround sound make a great foundation to any trip.  But my over thinking, OCD, type A personality made the rest a traveler's dream.  The  overhead cabinetry was full of yummy snacks, new dvd's of seasons of Dukes of Hazzard, Cosby Show and all the other  great shows of the 80's.  There was a cabinet devoted to medical needs - vomit bag, Tylenol, spare g-tube and such.  A cabinet had our travel dishware for our fine dining experience of ham and cheese sandwiches delivered to everyone on their tray.  The thought of "fast-fooding" it across country makes me nauseous so we had our plug-in fridge that doubled as a very  convenient armrest for Alan and I that we had filled with fresh fixin's and cold beverages available to us whenever we fancied.  All of the kids had a yummy new squishy pillow on their seat for their travel comfort.  We had dual trash cans mounted, a roll of paper towels hung and plenty of room to move - because everyone was limited to one small duffel for all of their clothes, shoes and other personal belongings which fit in the box on the hitch carrier mounted on back.  We leave that locked and every night just bring a single, small communal "night bag" for the hotel that holds pj's, a toothbrush and a change of clothes for everyone.  Even Ty had his new travel accessories including a new bone to keep him occupied.  The finishing touch was suggested by Lance, which was some sort of privacy screen.  If Bridger catches even a glimpse of you playing any form of electronics he will pitch a fit and demand them.    So just before we left home the girls and I whipped up our homemade privacy screens made from some appropriate road trip fabric we found.  Of all of the travel comforts, Alan said those privacy screens were his favorite and worth their weight in gold.

Ahhh, yes.  THIS is the way to road trip.  We pushed it a hard 17 hours yesterday and have no major meltdowns to report.  Which means, according to statistics, that we are almost certain to have double meltdowns today.  Bring it, I say.  I have 3 cabinets still left untouched ready for the worst.

June 28, 2014



Who will be the ultimate Survivor?

Here we go.  This ship is pulling away from the harbor in T minus 20.  What will happen within the walls of that big black submarine is reality show worthy and will be coming to you nearly live on this blog.

The cast of characters:

Eva.  The darling of the show.  She is a peacemaker and will tune out and ignore all forces working against her. She will entertain herself just by looking out the window for hours.  The greatest threat she poses is to whomever has to share a hotel bed with her.  She weakens her opponent in the most critical moments - sleep time.  Just when you think you have fallen into bed for some much needed rest, she will kick and thrash and pummel you in her sleep.

Eliza. The teenager disguised as a 4 year old.  She is a stealth observer of all that happens around her.  She hears your every word -- so don't say words like "pool tonight, maybe" quietly to your spouse because she. will. hear.  Most likely, in a single day, to go through all 5 pairs of underwear you packed for her.  Her secret weapon is to her likelihood to wet herself at any inopportune moment.

Sadie.  The comic relief.  The one who keeps you laughing.  The one who . . .just when you thought all was stable, will break out into dramatic sobs over unexplained offenses - like an ant on her leg.  You have to be mentally sharp and ready for dramatic shifts in the game at all times with this one.

Bridger.  Everyone knows he is their biggest threat in the game.  Prone to frequent, glass-shattering screams, throwing of food, splattering you with his formula when you least expect it, wanting everything that you have (even if he has the same thing himself).  And if that doesn't crack you, he will proceed to ask you the same question over and over and over.  Just to give the others a fair chance, Mom did buy everyone their own set of earplugs.  That should buy you an extra 45 minutes surviving the game against Bridger. 

Lance.  In the real world, he is incredibly patient and tolerant.  But will 14 straight hours of Dora in high definition will make brain mush of him?  Will he start singing along with Map by the end of the day?  If he performs as he has rehearsed, he will focus his energy on using his negotiating power to limit the dvd selection into a tolerable Tom and Jerry.  He will surely be weakened by Mom's hovering that will require equal amounts of reading and looking out the window to balance electronics time - where he usually derives his power from.

Mom.  Says she prefers to drive (her secret strategy is that it just makes Dad deal with everyone in the back), likes to sing along to the radio and will break into whistling during any song which is prone to drive certain "people" nuts.  She likes to make time - which means no bathroom stops before lunch - if lunch is even offered as an option.  She likes to push lunchtime until 3 and has killer skills when it comes to eating with one hand and driving with the other - to further her game plan of No Stops.  She was the force behind this whole idea so no matter how many regrets she has midway through the painful state of Nebraska, she has to keep her game face on that everything is just peachy.

Dad.  Thinks that every good roadtrip begins and ends with rootbeer barrels, does not like to eat in the car, prefers to use the restroom at least 5 times between 8am-11am and lives 90% of his life surrounded by calm quiet co-workers in a climate controlled environment.  How soon until the other players crack him?  He has no idea what is about to hit him.  Dun dun duuuuunnnn.  The joke is really on him.

Ty.  Really no threat.  He is just there to maximize the traveling circus image to all spectators.

Stayed tuned for upcoming episodes of Survivor - Larson Edition, as we zig zag our way across the United States hitting every accessible and/or family fun (and even the not-so-family fun) location in our path as we head to a specialized physical therapy program for Bridger. You just can't script material this good.

June 19, 2014

Do You See What I See?

Yesterday I wrote about the many emotions I was feeling at Evie's elementary school graduation last week.  I was feeling reflective, happy and tender feelings.  But my weighted heart was crying during graduation for a different reason.  It was because of what I saw.

An observer in that gymnasium might see hundred of proud parents -- snapping videos, taking pictures.  They would have seen children lining up and climbing the stairs to shake hands with teachers and administrators as they received their diploma.  Observers would have heard student class speakers talking about their wonderful school experiences and memories.  They would hear the entire class body performing musical numbers followed by a 20 minute video presentation of the pictures taken throughout the year of students participating in class parties, field days, field trips and other fun events with captions attached to each photograph of what that child wanted to be when they grew up.

I saw something else.

In that graduating class was a sweet boy who is severely handicap.  Camouflaged in the crowd, I saw his father sitting through that assembly listening to the cheering pride of the other parents as he watched his own son laying sleepily in his complex wheelchair.  I watched the father listening to the choir of children singing as his eyes welled over with tears watching his son.  He would look down at his phone, checking text messages as he regained composure, and then his eyes would be back on his son.  His son was rolled along the front of the stage and his aide held his diploma for him.  As they wheeled back to his row they paused in front of this father who lovingly rubbed his son's leg as he continued to sleep.  The father's eyes were turning red from holding back his tears and I could no longer hold back mine.  I could feel his thoughts.  This moment stung for him and I felt the sting for him.  All of the memories, dreams and future hopes that were presented by students and administrators for this graduating class were his dreams that he had to bury many years ago and that ceremony was a reminder of that loss.

Through the entire ceremony I observed, with hundreds of other parents and family members the singing, the diplomas, the video. . . I took pictures of my daughter and proudly clapped for her and the others.  I observed all of that.  But what I saw was something else.  It was the image of a father watching his son.  It is something that still and probably always will, bring a lump to my throat when I think of it.

At the end of the ceremony as the parents gathered to take pictures of their children posing with their friends, I went up to this father and introduced myself.  I told him that of all of the hundreds of parents in that room, that I recognized that no one worked harder to get their child to that moment than did he and I offered him my sincere congratulations. The boy's Grandma was next to the dad and she was tenderly beaming. His eyes got wet again.

This journey has opened my eyes to truly see.  My peripheral vision is too clear now.   I see so much more than I used to.  While at times it hurts way too much to see the things I do with such acuity, it has also provided me the opportunity to see the most beautiful images too.  They are tender images that, despite being surrounded by dozens, even hundreds of people, I realize that I am the only one who is seeing them.

Do you see what I see?  Come sit by me for a spell.  I can see the forest through the trees and the view is too beautiful not to share.

June 18, 2014

Don't Blink

It happened so fast.  In the mere blink of an eye she went from my itsy bitsy girl that was 3 parts hair and one part face. . .

to a lovely young woman who just finished her elementary school career. . .

How did that happen?  I feel like I am still 28 but somehow she became 11.  I have loved every minute of the journey with her.  She has never had a tantrum, has never colored on the walls and has never tried to cut her own hair.  She has never hit anyone, has never had an accident in her underwear and has never spoken disrespectfully to me or anyone else. It has nothing to do with how she was mothered.  She was born truly perfect and my job as her mother is to just not mess her up. . . and to try to get her to eat peas.  She won't eat peas - her only flaw.

Her childhood has not produced a shelf full of sports trophies that gather dust.  But, rather, her childhood has produced the most rare medals that are invisible to others -- medals of humanity.  She is caring, sensitive and gracious and those qualities have already changed the world.  Her most frequently spoken phrase is, "What can I do to help, Mom?"  Those words have brought such a wonderful peace to our home.  It was the trend in her class last year to make fun of a particular child that has autism.  She stood up to her peers about their inappropriate treatment of him then bravely shared her concern to school staff to help.  She gave the boy her phone number and told him to call her whenever he wanted to.  When classmates made fun of her for that, she replied, "I don't care.  He is my friend."  She had him come over to her house for a playdate.  She has befriended every child that needed a friend and her frequent compliments and encouragement leave them and every one else that crosses her path uplifted because of her.

As I watched her walk across the stage of her elementary school graduation a few days ago, my heart was full of gratitude to God for blessing our home with her.

Happy Graduation Evie!

I have toothpicks prying my eyes open now.  I won't blink.  I won't.  It will all go too fast if I do.

June 11, 2014

Keeper of the Nest

There has been a beautiful story unfolding in a small tree right outside of our front door. We have been observing a Robin build her neat little nest and lay her clutch of eggs. We watched those eggs hatch and the chicks be cared for, then saw those baby Robins take flight.  This week, now that all of the babies had found their wings and left the nest, I peeked inside and saw what remained.  This. . .

One perfect little egg all by itself.  All of the others in that nest got to hatch, find their wings and soar.  Not that one.

I have a nest full.  Four of them are finding their wings and taking flight.  One remains. No longer just a toddler, but in school and more exposed to the world - Bridger watches other children running, chasing soccer balls, jumping on trampolines and racing down slides.  I fear he wonders why his wings have been clipped.  His siblings have been by his side since day one.  However, they are growing up and finding their own wings to carry them.  Bridger will always be number one in their heart, but they are spending more and more time pursuing their interests and not at home as much as they used to be.  I fear he feels like this little egg.

I have been asked a specific question no less than 100 times in the past two weeks as people have seen Bridger with his new service dog, Ty.  It is, "What does he do?"

People see Ty and see Bridger, and wonder how that works.  I answer the standard service dog answer that he opens doors and drawers, he picks up dropped items, etc.  But a large part of what Ty does is hard to describe in a quick answer to their short question.  I can't describe it even in a long answer.  You just have to see it to understand.

So, what does Ty do?

He holds down the fort while Bridger is chillin' inside.  Everyone wants a friend to play in their accessible treehouse.

He says goodbye. When you stand at a bus stop all by yourself and you are the only child on your bus, it is fun to have someone by your side.

He says Welcome Home!  While other kids have their friends riding the bus home with them for playdates, Bridger has a eager friend waiting for a playdate every afternoon of every day.

He plays Bridger's games.  They aren't kickball and video games, but they are games that Bridger can play and Ty thinks they are just as fun as Bridger does.

This little bird will hatch and find his wings too.  Until then, Ty is the Keeper of the Nest.

June 09, 2014

He Prefers Blonds

Among Bridger's gaggle of therapists and caregivers over the years, there have been brunettes of all varieties, mingled with a smattering of red heads.  Bridger responds, obeys, complies to their requests and demands.  BUT, every now and then a blond will come along, and Bridger turns into an entirely different child.  He is extremely motivated to fulfill their every request.  He flirts.  He bats his lashes and adds a twinkle to his baby blues.  He giggles and hugs them - and might even sneak a kiss in every now and then.

He apparently prefers blonds.

A certain blond entered his life last year and he would speak her name with such angelic love. I had to meet his new blond lady love interest.

Her name is Jordain, and her heart is as lovely as her name.  She is a Fellow with Jill's House - the amazing respite lodge Bridger attends.  Bridger has a monthly weekend rendezvous with her as she is his attendant there.  Attendant is her official title to him -- really, he just knows her as his best friend.

I have a fierce, true and deep love for certain people in this world.  It is a love for people that love Bridger.  Not just those that say they love him as they are looking on from the sidelines, doing their own thing.  But those that love him by showing it.  I truly and completely love those that either by solicitation from us, or a self-issued invitation, jump into our arena and love him through their actions.  Jordain has wiped his nose, his toes and everything in between.  She has held him when he cried, has tucked him in.  She has dressed him and redressed him and worn his lunch on her sleeve.  She has held his hand and his heart.  She has demonstrated what love feels like, and I love her for that.

Her year-long fellowship program at Jill's House came to an end this weekend and she is off to tackle the next exciting chapter of her life across the country.  It was Bridger's last weekend with her and I was an emotional mess all weekend thinking about it.  Why was I crying? I wasn't losing the benefit of respite of Jill's House. He would still love Jill's House and the other fabulous and wonderful caregivers there.  I realized I was crying because I was losing someone who loved Bridger, and that list is already short enough.

I am so grateful for sweet Jordain!  Her ability to love so deeply that it just oozes out into action was inspiring to watch and has made me a better person.  On their final "date" together Bridger presented her a rose and said, "Jordain, will you accept this rose?"

She said yes!

She and Bridger have exchanged pieces of their hearts with one another and they will take that piece with them as they continue on their different paths.  I am so grateful that God allowed this brief intersection of their lives.  I take peace in being a Virginian, because our roads are a little different here.  We don't just have intersections of two roads that cross just once, never to meet again.  We have winding roads, that are long and will overlap, merge and cross paths with another road many times in the journey.

Thank you, Jordain! Until our roads cross again. . .

June 08, 2014

Take Me Out Of The Ball Game

No, that preposition is not a typo.  We did take everyone out to the ball game, but Bridger's message was sent loud and clear that he wanted out of the ball game.

Taking Bridger to mingle in a crowd of tens of thousands - ha.  I knew I had my work cut out for me.  The miracle of the experience -- we made it 3 1/2 innings!

We decided to be crazy brave and take the troop to a Nats game.  We take the older ones all the time and Alan and I enjoy our date nights in our favorite front row seats on the first base dugout.  Now it was time to test out the view from the wheelchair section and take the whole clan - Ty included!

It was the most beautiful day last Saturday -- one of those rare days in Virginia that for the rest of the summer we say, "Remember THAT day? Remember that day with a blue sky and no humidity or gnats?"

We had a great pre-game feast of all the best ballpark foods.  Bridger was obliged to feast on a bun and Ty got to smell all the happenings from his spot tucked under the table.  Ty and Bridger got to meet Teddy Roosevelt.  Bridger would have been content to spend the whole game looking at him!

The kids loaded up their peanut sacks and we found our wheelchair accessible row.  Ty was a little unsure of his latest adventure.  He nestled in next to Bridger and the boys enjoyed the opening pitch together. Content were they both . . . until. . . the Nats hit their first homerun.  That crowd of tens of thousands were now screaming and it was all echoing under our covered seating area.  Ty thought he should be happy but didn't know what to do - so he pounced up to me to help him get through it.  I calmed him down and put him into a "visit" on Bridger's lap, who also emotionally did not know how to handle all of the commotion.  They hugged their way through that difficult moment.  The runs that followed later in the inning with the accompanying cheers and roars would send Ty right to Bridger's lap as Bridger covered his ears.

It was a long first inning for Bridger and it was time to abort mission.  Normally the others would have to follow and leave the fun as well, but with Bridger's new responsibility with his service dog I thought I would see if I could buy some time for the others.  So I told Bridger he had to walk his dog.  We left the echoing loud covered area to the open sunshine and walked the perimeter of the stadium (over and over).  Bridger just stared around the corner of his pushchair to make sure Ty was following.  I couldn't resist the fun of stopping at some fun photo ops.  Several other strangers wanted to take a picture too.  How long a random picture of someone's service dog is going to sit on their memory card is anyone's guess.

Escaping the loud enclosed sounds for the glaring open sunshine was just trading one set of problems for another.  Bridger has sensory reactions to bright, full sun as well - including seizures, so I knew our game time was about to expire.  I didn't realize how that expiration moment would come with no warning.  Out of nowhere, Bridger snapped.  Time to grab the others and escape.  I raced through the crowds back to our seats to get the family trying to avoid hitting others with Bridger's flailing arms and legs.  Ty followed dutifully close to me and new he was a dog on a mission - Abort Game!

The others thought it was such a treat to have been able to enjoy the game for as long as they did.  They had their hot dog, soda, peanuts and saw a home run.  "Check" to everything that is on the game list for a 12 and under crowd.

We piled back in the van and drove home talking about our fun excursion.  Perhaps others would have thought it was a miserable day that they had to leave the game so early due to a child melting down.  Making it 3 1/2 innings?!  We call it  Mission Successful!

* sorry, not enough pics of the other children. Remember, I was pushing a wheelchair walking stadium laps nearly the whole time!

June 06, 2014

Gettin' Out of Dodge

When life gets snarly and we start to get a little rotten under the collar from all the stress and bustle of life, we know how to reset.  We get out of Dodge.

It was a hectic few weeks of being up in New York with Bridger for service dog training, rotating kids up and down from NY to be my helpers while the others remaining at home juggled through their activities, homework and daily routines with the help of an army of angels to keep our family going while mom was away while Alan maintained his 70+ hour work weeks.  I hit the ground running when I returned, playing catch up to the mound of laundry, pile of paperwork of all sorts (school, medical, insurance), and belated needs to be met from little ones that missed their mom.  Add that to attending to the focus that needed to be put on the important transitioning of Ty in his new home and new capacity as Bridger's service companion and I felt like a can of soda that had been shaken for quite some time.  Fearing my brain would pop, we took the weekend to connect, reconnect and renew in the best place possible - at our little stack of Lincoln Logs on Great North Mountain.

There is something that happens to your blood pressure every time you step inside and inhale the overwhelming scent of pine logs.  The one clock we have up there is always blinking.  We never bother to reset it because, frankly, we don't really care what time it is.  The kids disappear to climb the rocks and let their imaginations take flight in a dreamer's paradise.  We breathe.

This trip came with a fun and important addition, Mr. T!  For the first 30 minutes after we arrived we walked the perimeter and just let his busy nose have its fill.  He was so curious as to what all of these wonderful smells were.  It is important to love your job and the same is true for a service dog.  We were quite certain he was going to enjoy this business trip!

After the kids had been playing all morning outside, Lance rang the breakfast bell and we had a relaxing breakfast on the patio enjoying the fact that we didn't have kids and backpacks, Ziplock baggies and permission slips flying through our faces in the normal whirlwind of a breakfast routine to get the kids out the door to school.  After breakfast we took a family hike down to the creek.

Bridger has a fun way to join us on our hikes.  He sits with me on the atv as I troll along at a coasting walking pace with the others.  Bridger points out things he likes to stop and see and is getting quite a predictable pattern of requested sites on this hike -- the log over the creek, the waterfall, the bridge, the spring.  Ty was excited to pose with his buddy.

When we arrived at the creek the kids rolled their pants as high as they could and continued their hike upstream.  The best foot massage is Nature's version, which consists of walking along river rock in chilly spring water.  We let Ty play a bit in the creek.  All of his reserves of silliness that he had to keep under wraps at puppy college came out.  I studied quite a bit about dog's body language while at training and his body language was a pretty easy read -  he was ecstatic!  He could not believe that this is what his new job entailed.  He was on cloud nine!  At one point he was so excited he didn't know how to contain it any longer and so he gave me one big pounce!  He was immediately repentant and knew that was not appropriate and went into a forgiving "sit".  The family thought that was hilarious!

While the other kids ventured up and down the creek, Bridger sat on the side of the bridge and threw rocks and sticks into the water.  It was Ty's job to retrieve and he performed his job with gusto!  Bridger just kept laughing and enjoying the splash of the sticks and rocks he threw and enjoyed even more that they kept coming back to him.  We normally would not have been able to stay at the creek for so long but with Ty doing his "work" with Bridger it allowed the other children to enjoy the moment for as long as they wanted that moment to be.

The coming weeks are the final crazy last weeks of school mixed in with a medically crazy week full of appointments (you know how I love those weeks!)  We returned from our little mountain dirty and happy, ready to take it on!