July 22, 2013

There is Joy

Hanging on my wall, surrounded by a large old, battered, dinged up picture frame that has seen better days [kind of like me] is the quote, "There is Joy in EVERY sound, when there is Love at Home."
In our home, we have lots of sounds.  We have your typical laughter and giggles that abound.  We have the sound of pianos being practiced and squeaky scales on the violin and cello.  We have an abundance of "I love you's" that frequently come out of the children's lips (for which I am so grateful that those words flow so freely), we have the obnoxious music of a video game, we have the sound of squabbles mid-resolution, the sound of dishwasher and dryer that are always running, the sound of a vacuum that is not running enough.  Then we have other sounds.  In our home we call them Special sounds.  Lots of times those sounds resemble screaming.  They are Bridger sounds.  They are screams for happiness and excitement, screams for frustration, screams just to feel the extent of his vocal chords that he previously did not have power to produce many sounds with. 
Those that are near Bridger may be a little uncomfortable by those sounds sometimes.  I have to admit, sometimes those sounds are too much for me too.  People that see Bridger sometimes only see this cute little boy in a wheelchair and have no clue what there is to him beyond that.  Beyond the facade of the chair are some medical complexities that have yet to be fully understood.  One of those includes behavior.  During a particularly challenging period, Bridger would scream and scream for hours at a time, which went on for weeks at a time and then into months at a time.  Not the happy screaming.  He was frustrated and he was having severe side effects to medication to control his seizures.  It was an extremely difficult time being a stay at home mom by his side 24/7.  Home was a difficult place.  It was a place of stress -- full of his screaming and full of therapeutic equipment everywhere I turned.  Bridger would wake up for the day between 1:00-3:00am every day and would scream if you didn't come to him.  We were surviving on just a few hours of sleep a night for a months (which, unfortunately, is not an uncommon sleep pattern for us.)
One Sunday afternoon in particular, I just had to get away.  Not far, I just needed to step outside of the house for a moment and breathe.  I thought I would stop by a friend's house and visit to clear my head.  During the course of my short visit I was sitting at her computer pulling up a website to show her with my back to her when her husband came into where we were and asked why the family card game they were going to play hadn't started.  She made all sorts of gestures and eye stares and head nods gesturing at me and at the door.  Without say a word, her message she was secretly gesturing to her husband was crystal clear.  What she didn't realize as my back to her, was that the computer screen in front of me acted as a perfect mirror.  I saw it all.  I thanked them for the visit and immediately excused myself.  I have never dropped by their house again.  I returned to my screaming house.  I was so sad.  In my moment of desperate need and complete exhaustion, couldn't they just welcome me in their house for 15 minutes?  That experience taught me another amazing lesson. 
This journey is full of beautiful lessons which are learned both directly through Bridger and indirectly as well.  When I share of these lessons, it is not to solicit help or service on my behalf.  Quite the contrary, it is for the benefit of all of those that are in need of help around me.  There are very acute lessons in humanity that are flushed out because of my experiences that teach me how to serve and be a better help to families such as those around me -- or for that matter, anyone around me that is struggling with a long term challenge.  Everyone has the opportunity to interact with a family with a child with special needs.  Most women can think of a friend or acquaintance they have that has a child with special needs.  Some think that "help" has to come in the form of direct support to the special child.  Helping the caregiver IS helping the child.  In those critically challenging screaming months I sought help this one time, simple help I thought, which was just to escape to a comfortable place of peace and solace for 15 minutes before returning to my never ending burden and I was unwelcome.  Simple opportunities are all around us, it is not in the form of some magnificent three course meal we present to somebody, not necessarily in an entire day of watching a person's children . . . but I think more of those sustaining moments and instances that lift a burden and keep someone able to put one foot in front of the other can be performed in 15 minutes or less with very little effort on our part.
Our family has gotten accustomed to our special sounds - as evidenced by the experience of taking my boys out for ice cream the other day.  Bridger was full of sounds that he was sharing.  Everyone was staring.  The sounds became so loud that we had to leave.  As we were walking down the sidewalk back to our car, Lance astutely said with a chuckle, "I'm not sure what all those people were staring at - it is just every day life!"  I had a smile on my face and inside my heart.  Indeed it is.  Our life is full of all sorts of sounds, which I have now learned to deal with without having to seek refuge elsewhere. And I have come to fully believe, as have Alan and the others under this roof, that "There is Joy in Every Sound, when there is Love at Home." And I am so grateful there is.

July 20, 2013

My Favorite Things

It is time to resurrect a little blog series I used to do.  It was sort of an occasional "commercial break" between my musings and life happenings.

I am a huge advocate and believer in simple pleasures.  Life hits most people in stages that pass in a matter of years -- as you become a parent, you eventually get to sleep through the night again, you will put away the crib one day, you stop pouring your money into diapers and your child becomes one that can manage themselves and their needs within a handful of years.  Challenging periods pass.  Times and seasons they call it.

Well, I call myself "California".  I have one season.  I will never sleep through the night, I will never be able to put away the crib (I use that word loosely, it is a resembles more of a high-walled WWF ring) and, after doing the diaper thing straight for 12 years, I will give my optimistic  hope and say that I think I may possibly only have to be changing diapers for at least another decade.

Essential to me are those simple pleasures I come across in my life.  Those precious finds provide the same benefit as the grand pleasures others get to live out.  As a special mom, my time and money are critically valuable commodities, and I only spend them on the most fabulous simple pleasures - which I will share with you periodically. 
My computer guru friend tacked on some analytics of sorts to my blog, which I probably am profoundly underutilizing, but it does report to me that my average number of reads per blog post is now hitting just over a thousand.  I was shocked to hit over three thousand for a couple posts!  Alan thinks I should advertise and make a little money off this.  *gasp* Make money off my little journal of my secret thoughts that I open to the world?  No way!  These little promotions are coming to you without any sponsorship - just girlfriend to girlfriend.

The latest ultra fabulous simple pleasure. . .

Sadie thought it was a bra when she saw it.  (um, I nursed 5 babies.  nope.)  It is the Blinky Sleep Mask.  Love LOVE.

We have three large windows in our bedroom.  I love the open view of meadows and forest from them.  I love the light they let in, especially in winter when I need all the light I can get.  For those reasons, I have only covered them with light filtering shades that I can draw closed.  In the summer months, those shades do just that.  Filter. Barely.  So at 6am - or even earlier - my room is aglow in beautiful sunlight.  Which is not so beautiful if I was going to be able to sleep until 6:30 that day, or perhaps even to a miraculous 7!  I cannot sleep through the morning sunlight pouring in my room. I suffocate myself as I cover my face with my covers or put a pillow over my face.  It finds me regardless.

Enter that amazing little find.

It has contoured eye pockets so my lashes and lids can move, it is soft as can be in silky neoprene and I don't even feel it.  Today, I slept until my alarm at 7:20!  The greatest Simple Pleasure of my summer.  ahhh.

And while I am on the topic of Favorite Things.  Can I add her to the list?


This feisty, tenacious, bundle of determination, will power and love to melt you is right at the top of my list of favorites.  She just turned 4.  Which, is my favorite age.  I can not wait to see what the next year has in store.  She has marveled us with her ability to perfectly maneuver a manual wheelchair before she could even walk, she can make her own breakfast on Saturday morning - scaling the fridge and pantry shelves and countertop to reach the cabinets to access all of the necessary cereal makings, she asks questions and has the analytical power and vocabulary of a 12 year old, she knows how to perform enteral feeds, she has the sleek prowess of a Cheetah yet can only speak in the volume range of 120-130 decibels.  There is nothing simple about her, but she is one of my Favorite Things.  And Minnie Mouse and Barbie are currently her favorite things.  And to find a Minnie Mouse Barbie -- well that's just having your cake and eating it too.

And speaking of cake. . . mmmm.

Happy Birthday little Eliza Caroline! You are my favorite thing!

July 13, 2013

Puppy Love

You know when you have those moments that are just so beautiful to observe and your heart is so touched it starts leaking out your eyes?  Yeah, I seem to have those too.  Every day.  I have to learn to keep my composure better but my special journey and altered perspective allow me to see some amazing things.
The most recent moment was Bridger being introduced to a Service Dog. 
Bridger meet Dixie.  Dixie meet Bridger.
Now kiss hello.
We are entering a new phase with Bridger, it is scary and overwhelming.  I don't know how it will work, but as I put some "tools" into our toolbox it brings peace knowing that we are ready to tackle the challenges of the coming years.  One of those tools will be a Skilled Companion for Bridger. 
While frequenting our favorite accessible playground in McLean, we met the park manager who had with her a small adorable Labrador donned in a mini "Service Dog in Training" vest.    She shared with us about the remarkable organization that she and the dog are part of.  I had researched other organizations and none is a thorough and exacting to create such amazing Service Dogs as this one.  She is a "puppy raiser" who takes a puppy with the most carefully bred pedigree, she introduces them to the world of loud sounds, commotion and distractions and trains them to ignore it all and obey a series of 50 specific commands.  The puppy raisers keep them from age 6 weeks to 18 months.  After 18 months the dog is sent to the main center for "Puppy University".  This is an intensive training course where they receive an additional 6 months of training to become a Skilled Companion.  Not all dogs make the cut.  Some only receive the degree of Companion Dog.  Some don't become that.  After their intensive training and if they make the cut, individuals are selected for placement and go to the center for 10 days of intensive team training where the dog becomes specifically trained to the person, and visa versa. 
We began the application process 6 months ago.  I think it would be easier to adopt a baby.  We completed our 10+ page application.  We submitted photo collages of our family, our home, our yard, pictures of each of Bridger's pieces of therapeutic equipment.  We had phone interviews, documentation and letters of recommendations from our pediatrician and therapists.  Lastly, we had to travel up to Long Island for the final 4 hour in-person interview.  Bridger would be a part of half of that interview, so we brought his wonderful former teacher along to help care for him during the off-interview times.  We also brought Bridger's best friend, who happens to be his brother, who is so excited for the prospect of what may soon be for his brother.
We headed up to New York, managing rush hour traffic across Manhattan (which I was very proud of myself for navigating in my petite suburban) and up to the top of Long Island.  I was a little worried as we were driving down the small road in need of repair in a very old and industrial area.  We passed some auto glass shops, fencing companies, tow truck yards, as the gps said we were just hundreds of feet away from where we were going to be staying for the night.  Then we came across a large, gated compound that was meticulously landscaped.  Phew.  We had arrived.  We were let in the gate and welcomed into the beautiful building.  We were shown our dorm rooms for the night which were perfectly accessible.  They gave us a tour of the training facilities - amazing!  I was so impressed!  We ordered some delicious New York pizza and settled into our rooms for the night.
Night - I said NIGHT!  Bridger didn't get the message.  True to his nature, he couldn't settle himself into a new and foreign environment so he was awake until almost 2am.  He woke up at for the day at 5:30 and he woke up a few times in between.  Collectively I had about 2 hours of sleep.  He woke up in a screaming, feisty mood and I was worried that he would surely not pass his interview now.  I sat him down to brush up on his interview skills.  Really, there is no way to do that, it just made me feel better to try.
We attended the morning 2 hour lecture with three other families there to be interviewed.  Bridger was with his teacher and Lance insisted on sitting through the lecture with me.  He was so cute.  He chimed in with the others with his own questions about the program and how to properly utilize the dog.
After the lecture we went to the hands-on portion of the afternoon.  We learned three basic commands and how to execute.  The trainer was demonstrating the "Don't" command with its accompanying choke collar snap.  She would say it robotically over and over.  Oh no, Bridger thought that was HiLaRIouS! He kept laughing and laughing yelling, "Don't!" and smacking me over and over.  What if he hits me and we are disqualified, I worried. Oh dear.  I uttered some fierce whisperings in his ear, to which he then stopped smacking me, but he still couldn't control his giggle every time "Don't" was said.
These dogs were fascinating!  I knew they were going to be obedient, but this was something else!  They are trained to keep there nose in line with your leg and never be forward of that point.  They are trained to stay within 6" of your leg or wheelchair at all times - even when you move.  To watch a dog stay within that proximity of a moving wheelchair not knowing which way it will move and not get its paws run over was incredible!  We constantly get our feet run over staying within a few yards of Bridger.
We were called up first to try what had just been demonstrated.  They had me come up, as his facilitator, and give commands and corrections as needed to the dog.  Bridger loved watching this.  Then it was his turn.  They had him wheel up to greet the dog.
**insert teary moment for everyone**
He looked at the dog and the dog at him, then the dog was licking him all over and Bridger was beside himself in the cute giggle that melts all of us.  Bridger sat on the left with me on the right and the dog in the middle.  He would give the command in the best voice he could, "Dayton, down", and I would echo "Down" and the dog would lay down.  More giggles from Bridger.  We did it again and again with different commands.  Bridger was ecstatic.  He had power.  He had command to make something in his world do something.  He spends his life waiting for things to happen -- for someone to get the food when he feels hungry, for someone to reach the toy that he can't, for someone to turn on the tv, for someone to come see him because he can't come see them.  He had power with his simple words to make something happen - and he knew it!
Two older ladies had their turn, and then a sweet 14 year old girl had her moment.  She tenderly went up to greet the dog. . .
**insert one of those moments that are just so beautiful to observe that your heart is touched and starts leaking out your eyes**
It was so beautiful to watch this sweet high school aged girl who, despite her disabilities, probably feels all too perfectly frequent feelings of loneliness.  She was sweetly greeting this dog, who was so excited to greet her back.  They had a tender exchange and I saw the critical purpose and miracle of a Companion Dog.
**dried my eyes**
We had our final in-person interview and now wait another four weeks to hear if we made cut and wait the 1-2 years for our Skilled Companion.
We made the loooooong trek home munching on some delicious treats we picked up from an amazing Italian bakery.  Friday traffic, rain, etc.  We stopped at Cabela's [husband is so jealous] to get our wiggles out, have a delicious dinner at a restaurant nearby made the final push home getting in after midnight.  Bridger's teacher was a wonderful road trip companion and a true trooper.  My boys passed out on top of each other which made the last hour or two so relaxing.
I would have never imagined a few years ago that I would be trekking through Manhattan block by block to go be interviewed for a Service Dog that will hopefully become a wonderful addition to our family.  I continually reflect with awe at the places I am going, people I am meeting and beautiful sites along the way that I otherwise would have never experienced because of our unique journey.  A doggone amazing journey indeed!

July 09, 2013

Heroes Among Us

A little while back I was cornered in the hallway after church by a woman who proceeded to launch into a long one-sided conversation concerning the behavior at church that day by my 11 year old son.
It started as an unduly long reprimand, but soon turned into a full blown tongue lashing -- "inappropriate. . . [blah blah]. . . rude, disrespectful. . . [blah blah]. . . bad example. . . [blah blah]"  Did she see me actually look at my watch half way through her unsolicited lecture in disbelief on how long that could carry on for?  Unfortunately not.  Perhaps she just had her pantyhose in a twist because all of the other adults interacting with him that I spoke to that day, including his teacher, didn't seem to share her same concerns.
After I was released, I went to my car and shared the 'conversation' with my husband.  He sighed and shook his head in disgust and disappointment.  His conversation he then had with me had an entirely different perspective.  A perspective of love.  It started with, "Doesn't she know. . .?"

Doesn't she know that Lance gets hit, kicked, screamed at and smacked by his brother every time he is in the car, including to and from church?  Doesn't she know that almost every element in his life is interrupted by the needs and demands of his special brother?  Doesn't she know that he doesn't care - that he wakes up early to go join him in his bed and the first thing he does when a friend comes over is run to introduce them to his brother? 

Doesn't she know that he has been without a mom for over a collective year of his life as I have clocked at least that much time of his life in hospital stays and medical appointments? Doesn't she know that when his mother had back surgery and couldn't (and still can't) lift Bridger and the world is full of "let me know if I can do something" people that Lance was by his mother's side for 2 months, lifting and hauling his little brother's heavy body in and out of the car, in and out of his bed, in and out of his wheelchair - at times, his eyes brimming with tears from the tremendous weight that his child-sized body could barely handle? And all of this done in the heat of the summer without a single complaint, but only a "don't worry Mom, I've got this." 

Does she know the ultimate respect that every teacher and staff in his school has for him because of the love that he shows not only his brother, but every child - including every child with special needs in his school?  Does she know that he was elected by those same teachers to the Student Council for his own initiated platform of helping the school raise awareness and acceptance towards students with disabilities?  Does she know that he elects to play with his brother for several hours each day doing the silliest games and gets him laughing like no other?

Does she know that when I was going through his old Boy Scout stuff to throw it away that he insisted we keep it for his brother?  When I explained to him that I didn't think that the Boy Scouts was a program Bridger was going to be able to participate in Lance assured me that he was, because he was going to get every patch, award and merit badge with him.  Does she know that when Bridger screamed point blank in his ear at the most deafening decibels that would have caused someone else to reflexively swing their arm and strike, that he only just exhaled deeply and sighed, "oh, Bridger"? 

Does she know that when Bridger had a horrible fall and had to be taken on a 30 minute ride down a mountain to a hospital, pouring blood out of his face and dropping out of consciousness due to the severity of his concussion that Lance thought he was dying, but sat beside him in the car wiping the blood from his face trying to keep him conscious while bravely saying over and over, "come on, Bridger, you can make it"?

Does she know that he makes his bed every morning without being asked?
The movies are full of super heroes, the fictional type that move mountains and crush buildings and do all sorts of super-human feats.  I have a real live super hero living under my roof, in the form of a 11 year old boy who could teach everyone a lesson in love, acceptance, long-suffering, charity, tolerance and respect - without even saying a word. 

There is a hero among us. 

Did you know?