December 25, 2013

You Give Whatcha Got

 
The day has been full of gifts.  The past few months have been full of thoughts about gifts.  What would they like?  Did I find the perfect one?  Does everyone have enough?  Did I buy too much?  Who did I forget?
 
 In my moments of flurry, it feels like too much.  When I sit and contemplate how blessed I am, it doesn't feel like enough.  Then comes the feeling that I have more gifts to give.  Not gifts that are in the form of tissue-stuffed gift bags, or thin little envelopes of gift cards, and gifts that are not necessarily given at Christmas time.
 
Rewind to a couple months ago that opened my eyes to the most beautiful form of giving.
 
Our not-so-little family excitedly piled into our not-so-little van for our annual beach vacation.  We go to our same favorite spot each year.  The beach is tricky with Bridger -- sun, sand and water make for some extra challenges for a child with special needs.  But when we master those challenges then we have the recipe for the best family vacation ever - because EVERYONE loves the beach, especially Bridger.  We push him out in his beach wheelchair (favorite piece of equipment that we own!) but the sensory overload of the sights, smells and texture of the sand hit him hard and he knows he has to "shut down" after an hour and regroup.  So I prop him in my arms and do our routine that he expects of covering his eyes with a moist towel and I rock and hum.  If I stop humming he will give me a little shout to know to keep humming.  He then falls asleep and wakes up in an hour, recollected and ready to play.  So with my big babe in my arms I sit in the sand and hum as I watch my other 4 babes and husband play in the surf.  I have hummed the same song over and over for the past several years.  Can you guess what it is?  Louis Armstrong's, What a Wonderful World.  I get choked up every time. Because in those humming moments I realize I have everything I need right there.
 
This past time, I had Bridger in my arms for his morning oceanfront "shut down".  Then he shut down in a different way.  He felt too heavy in my arms.  I looked at his face and his mouth was twitching, his eyes were only partially shut.  He was going into a full blown tonic clonic seizure.  Bridger has several types of seizures, but this type for him is extra scary because he doesn't come out of them without significant medical intervention.  I waited out the two or so minutes in the beginning, hoping this time would be different.  I looked around and hollered to a woman under a neighboring umbrella for help and asked her to go and notify my husband who was in the water with the others.  He ran up to us and I turned my head just in time to see [divine coincidence] a life guard going by on an atv.  "Catch him!" I said to Alan.  Bridger's breathing was starting to fade at this point.  The lifeguard, who [divine coincidence] also happened to be a volunteer paramedic, pulled the oxygen tank out of his atv, called for backup and carried Bridger's seizing body up to the sandy grass by the condo parking lot. 

Backup arrived in the form of two fire trucks, two ambulances, a rescue truck, police and beach patrol/lifeguard supervisor.  They laid Bridger's little body down and began to work on him as he continued to lay there convulsively seizing for more than 35 minutes.  A life flight helicopter was also called in.
 
I was calm but sick.  Watching his little body in the grass with 10 paramedics hovering over top was surreal.  I looked around and said a silent plea in my heart, "Not here."  Please don't let our family's favorite vacation spot be the place we lose him, I thought.  I was helpless.
 
The moments that followed created the most beautiful scene that I have ever witnessed.  Even with the underlying sickening fear I was feeling, God showed me what giving truly means.
 
A bartender ran over to those attending Bridger and said, "Here is some ice and water.  What else do you need?"
 
A family ran up to us from the beach and said, "We have gathered all of your stuff, where would you like us to put it?"
 
Another woman came up to me as I stood holding the IV bag above my head in the hot sun and took it from me saying, "I've got this."
 
A couple of others volunteered to go clear the adjacent parking lot for the helicopter landing.
 
Two women ran up to the paramedics and said, "We are nurses, what can we help you with?"
 
A couple came up to us to reassure us with the report that Lance (such a heroic big brother) had done exactly what he was told, which was to gather his sisters and take them back to the room out of sight of the trauma.
 
A woman ran out from the condo building with her cell phone number and told us that she would be a liaison for communications from the hospital to our condo room for Alan and the kids, which did not have cell phone service.
 
A random stranger gave me a water bottle.
 
Trying to take it all in, I told myself (perhaps trying to prepare my mind) "this is the moment that we lose Bridger."  As I thought that, I looked around and saw others standing on the sidelines, gaping at us with their towels hung around their neck.   How odd and uncomfortable, I thought, that this moment in my life was open to spectators.

The helicopter was not arriving in time and we departed via ambulance (which makes for a very wild and bumpy high speed drive on a little beach road!)  Fast forward to the end of the story, Bridger was ok.


To Alan, myself, and my children, that memory will always be associated with the most beautiful lesson in giving that God has ever presented to me.  In a situation that may have seemed helpless to others - perhaps because it was not their specialty, or they didn't know what to do, or they didn't think that they had anything of worth that they could possibly give, we received the most beautiful gifts.  A bartender had water, someone else had an arm to hold something, someone had a phone number, someone picked up a towel. . . simple giving of something they had the power to give.  When we think of what saved Bridger's life that day, in addition to an amazing medical team, we credit those collective gifts.
 
Since that experience I have come to view giving opportunities differently.  Opportunities are around me more than I ever knew -- critical opportunities that I was blind to before.  Why didn't I see them?  Why doesn't anyone see them?  Perhaps we don't have time, or we don't have the money, or maybe we don't have either.  We don't have inclination or desire, or perhaps we lack the desire to have desire.  Maybe we don't have expertise or experience, or perceive it is someone else's stewardship.
 
I remember how sickened I felt watching the row of spectators watch me and I learned at that moment that we all have something to give.  It probably isn't novel or unique, pricey or profound.  But you can give what you got.
 
After all of these presents are now opened and I look around at what now remains of Christmas, I am reminded of all those gifts I received this summer and of all the gifts I have yet to give others.  I vow to not be the spectator.
 
 

November 14, 2013

There's No Place Like Home

 
There is no place like home, but I sure wish there was.  I wish there was some place with the familiarity, quiet and comforts that allow Bridger to feel at ease and allow us to be in public without all the stresses and angst that such appearances cause.
 
There is a reason that you don't see very many children with special needs out in public.  It is because there are so few places to go that are worth the trouble and challenge it is to be there (not to mention the incredible hassle just to get out the door.)  I keep testing that theory and have proven myself wrong nearly every time.  But for the sake of the other four and trying to keep their childhood normal, I keep trying.
 
Alan is away with Lance on the annual deer hunt [insert audible sickening sigh from me as my sweet, innocent first born excitedly donned the blaze orange and jumped in the suburban with the rest of the whiskered men for his first hunt].  My signature recitation to the children remaining is that 'When the cats are away, the mice play.'  So off went the mice to get some frozen yogurt this evening.  Off in our normal slug-like speed, that is.  After I change Bridger because he doesn't like to sit in a wet diaper, put his pants and shoes back on which might surprise you how long that takes [I invite you to come over and try to shimmy his long grasshopper legs through some jeans as he thrashes and wiggles], load him back into his wheelchair, wheel him out, load him in the lift of the van and then proceed to bend over his chair trying to hook all four tie downs as he yanks my scarf and suffocates me.  We arrive at the froyo shop and repeat the last few steps in reverse.  We go in and the girls get their treats. Bridger insists on sitting on the bench with the rest of us (and will scccccreeeeeam if he doesn't) so I lift him up and into the bench.  Then he spots the ipads mounted on the few tables.  Broken ipads that is.  Does he understand the concept of broken? No. So he proceeds to sccccreeeeeaam and there is no calming, convincing or redirecting with him.  I quietly declare, "abort mission" to the others who, pathetically, know what that means.  I put Bridger back in his chair - even more difficult this time as he is thrashing and doing his best ironing board imitation and going for the choke hold on my scarf again (why do I even bother with accessories??)  I am trying to wrangle both of his arms while I push him out.  Shoes are flying, he is practically frothing at the mouth, grabbing everything in his path - we are a site for the entire restaurant.  My girls nonchalantly walk out with their yogurt cups not phased in the least.  Repeat the above steps of lift, loading, tie downs - this time while dodging his kicking feet and whacking hands.  I wisely removed the scarf before leaning over to fasten the tie downs this time.  He continued his full blown tantrum as the girls and I sat in the car enjoying our ice cream while talking about their day.
 
3 hours have past since this latest incident and my left eye has finally stopped twitching.
 
It is not fun to feel trapped in my house.  It is even less fun to have experiences like that in public.  This is just a day in the life of our new normal and I could just cut and paste this blog entry into a new post every day and change the location.  Yet, I am determined that our family life will continue, and when we do things as a family - that he will continue to be part of it.  Just please refrain from public staring and gawking while we work out these *kinks*.
 
Until then, the mice will continue to play while the cats are away -- even though it feels more like a mouse trap and I am not sure the next time won't be the end of me.
 
 
 
 
 

November 09, 2013

Ahhhh...

Now isn't this better?

Now to start writing.  So much has built up in my brain over the last two months, I will try to let it out slowly.

Stay tuned.

September 20, 2013

Check, please

 
Over the years I have become wiser in some areas (hopefully in more areas than I have degenerated.)  Living in a home where my husband is gone nearly always, one critical wisdom that I keep in my pocket and pull out when necessary is that:
 
a good check can fix a bad thing 
 
When all else fails, hire out.  Stay tuned to see the wisdom in this for yourself. . .

September 10, 2013

Please Pardon Our Dust

I wish I could be one of those people that could snap together a creative little way to style their blog.

I'm really not.  My message is in my words, not what embellishments frame them.

I should have reminded myself of that before I started . . . um, {tinkering}.  I wish I could un-tinker, but that isn't one of my abilities either.  So here it sits, my twerked up, creatively flubbed, html-kinked blog face.  And it will sit here until I have the mental energy to do something about it - which, if you saw that the next five things on my to-do list said "Neurologist, EKG, Immunologist, write letters of medical necessity and paint the basement" you will understand why that will not be for quite some time.

Pathetic that my title (pre-children) included 'Software Training & Development'.

*sigh*
 
Until then, could someone please put a little construction cone in that big blank space at the top of my blog.  My creative instincts at least tell me that doesn't look normal.

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

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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.
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The most recent moment was Bridger being introduced to a Service Dog. 
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Bridger meet Dixie.  Dixie meet Bridger.
Now kiss hello.
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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. 
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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. 
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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*pause* 
**insert teary moment for everyone**
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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!
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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. . .
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*pause*
**insert one of those moments that are just so beautiful to observe that your heart is touched and starts leaking out your eyes**
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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.
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**dried my eyes**
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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.
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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.
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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!
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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?
 
 
 

May 18, 2013

What About Me?



We just hit the third anniversary of one of the scariest moments I have had with Bridger - when I walked into his room in the night to check on him and found him gray, covered in vomit and unresponsive.  I yelled for Alan and we gently moved him from his bed to the floor where he proceeded to launch into a full tonic clonic seizure that would not stop.  I was on the phone with 911 and went down to the front door to watch for the ambulance while Alan, with the most steady and calm voice, would shout down updates for me to relay to the 911 operator.  His dialogue went something like this:  "Ok, he is not breathing now. . . come on, Bridger, you can make it. . . Now he is turning blue. . . .Bridger, stay with us. . ." It is a side of our husband's that not many of us ever have to see.  But having seen that side, I love him in a whole new way.  He is a rock.  I have written about this incident before, but have left out some details in my previous telling.  My omission -- the part about me.
I was a mess.  I was trembling and shaking as I watched for the ambulance (as well as the trailing ambulance, fire engine, fire and rescue suburban, and two police cars) to pull up.  I opened the front door as they rushed in with all of their life saving gear in tow.  The first person in the door, however, did not rush up the stairs to Bridger's room.  She came to me -- the scared, trembling mom standing next to the door and she took me over to the couch and sat me down and put an oxygen mask on me.  She held my hand as people rushed up and down the stairs, eventually carrying a gurney out the front door with a small convulsing child on it and an EMT manually pumping oxygen into his lungs.  She drove me in her car with the emergency lights on (though it was against policy) closely following the ambulance and translated the updates that were broadcast over the radio.  She walked me into the hospital, transferred me to the care of the hospital social worker and then discreetly disappeared forever.  Despite all of the fear and critical attention needed for Bridger, she only had concern for me.
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That is not attention that is often ever cast my way.  From the hundreds of medical appointments we attend each year to the countless social pleasantries I exchange to others in passing, "How is Bridger?" are always the first words out of people's lips.  Often it is followed by, "and how are the other kids?"  Once in a while, I feel a little whisper inside of me saying, "and what about me?"
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Special needs moms are so smothered by the weight, commotion and overwhelming presentation of this special package that we are so far removed from anyone's radar.  I recently attended a play and watched all of those stage hands wearing black clothing, dashing across the stage making sure all of the backdrops are changed and props in place, all the while hiding, ducking and camouflaged from the common view.  That is what I feel like.
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Well-meaning acquaintances will offer their wisdom that, "You have to make sure and take care of yourself."  Doctors, who see all too well the demands of this journey, know better than to offer such lofty and trite advice.  They simply look at me with the most sincere and genuine eyes and tell me I am doing amazing.  Then they bury me with a new load of prescriptions, recommendations, follow up and new specialists to see and send me out the door.
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So what about me?  What about any special needs mom?  Though we don't want attention, praise or anything of the sort, a bit of respect is always appreciated for doing superhuman feats with a very human body.  Our "take care of yourself" time comes in the most pathetic forms -- we might browse the newest items of a special needs equipment catalog while we wait for an inherently late Special Education bus to arrive or we might go to the doctor for our own ailing bodies once in a while, or pause to give an extra long greeting to a friend we run into in the store as we ignore the screams from our child that come for daring to do so.  For me, my "take care of yourself" time has come in the form of a long neglected back surgery so that, after I heed my 3 months of restrictions to not lift Bridger (ha), I can lift him again with moderate pain instead of severe pain.  So here I lay absorbing a stack of magazines centered around life sustaining information like home organization and getting better abs, tuning out a home repair show, taking an occasional nap as I sleep off the pain meds, trying not to think about another surgery that awaits me in the future when Bridger grows from his 4' body to his 6' + one. 
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Yep, I got my wish.  Right now, it is all about me.
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*please pardon any grammatical errors, run on sentences or other nonsensical ramblings. This post was written fully under the influence of Percocet. 

May 07, 2013

My Tattoo


 

Don't have one.  Yet.  I am seriously considering getting one.  I have been thinking about it for a while.  What would it read and where would I put it, you wonder?



"He has Special Needs" - inked directly across my forehead.

There has to be an ink shop that has already done a couple of these because I am surely not the only mother of a special needs child that has wanted this stamp.

A weekend a few weeks ago was particularly challenging. (actually, who am I kidding, every weekend is challenging)  We were on a road trip and Bridger had been screaming quite a bit in the car.  Cars are challenging to him.  With his vision impairment he can't watch out the window, so I guess I would feel a bit of angst if I had to stare at my lap or the seat in front of me for a long drive.  It is especially fun when he gets in his "road rage" and reaches forward and yanks my hair from behind as I am driving. 


We proceeded to go into an activity center where Bridger was told he could not participate.  My previous thought that we were going to be having some family fun was sunk.  We left and went to Walmart for some groceries to continue in our road trip.  Alan was holding Bridger upright in the cart and I had dashed down the aisle for an item.  Bridger let out a shriek, to which the lady next to me whirled around to stare at him and say in her very loud voice for all to hear, "What is WRONG with him?!?"  Not knowing that his mother was standing right next to her I looked her dead on and said in my most even tone I could muster, "HE has Special Needs."  She let out a little "ohhh" and Alan and I pushed our shrieker and other little ones to the checkout and left the store.  

My retort that I was saying back to her in my mind was "nothing is wrong with him.  What is wrong with you?!  What is wrong with you that you have zero tolerance for anything that is outside of your realm of acceptable and normal that is so atrocious to you that you feel you have no choice but to comment?" *sigh* of course I would never say that.  But I think it a lot as the situation described above is something that happens nearly every day.

Our mistake was that we dare put him in a cart.  I sometimes am grateful for his wheelchair because it makes him look. . . you know, 'special'.  It serves as his 'tattoo' and hopefully is accompanied by some piece of a benefit of the doubt when others may be quick to judge, criticize or comment.  My friend who has her share of similar situations with her son that has autism has a 'tattoo' on her van in the form of a bumper sticker that reads "Autism Speaks".  When she is dragging an awkwardly heavy 12 year old to her car in the middle of a tantrum amidst the stares and shock of spectators, she is grateful for her tattoo - that perhaps allows judgment and criticism to be passed over.

People don't see how many medically complex children there are out there because there are very few places to go that are worth the hassle and extraordinary effort it takes to simply get out of the house.  But when we do, we just want to blend and be normal.

Just the other day I took my kids to a farm and a woman was walking towards us from the opposite direction.  For a good hundred yards away she stared at us, gawking with her mouth hung open.  I watched her out of my periphery through my sunglasses as she got closer, wondering when she would get her eye full and close her mouth.  She never did.  We may have some extra wheels, extra movements and extra sounds, but we are not blind.  It wasn't until I decided to have some fun with her, (because you have to have fun with people like this some how) when I looked at her the same way she was looking at me, that she brought her chin off her neck and finally looked straight ahead.  Brave woman - there were far too many flies swarming around that barn to leave your mouth hanging open that long.  Shocking that we would be more of a site for seeing for her than the newborn lambs or the milking demonstration.

 
So I want my tattoo.  Loud and clear on my forehead.  I want people to stop staring, commenting, sharing criticism masked as 'advice' -- and did I say staring?  Until then, I think my days of just being a wallflower are through.

May 03, 2013

Here I Am




AWOL, hibernating, underground, or perhaps all of the above.  Whatever you want to call it, I was off for the winter relocating my zen.  Where do you find yours?  You know, your zen, your inner-harmony, or (my new favorite descriptor) your flow?  Flow [the noun form] that is the mental state of operation, an existence where time doesn’t dominate, living in a complete state of contentedness and calm, experiencing and taking in the now, unaware of future happenings or to-do lists, absorbing  every single breath, sight and sound of what is.  Tricky stuff, that flow is.  But when I have it - and manage to keep it, I wouldn’t trade it for a million dollars. 

I find mine in the most unexpected places.

I find it here. . .


We started the New Year with Bridger quite sick.  Subsequently, we spent another week in the hospital in quite fragile health.  He had layering complications which ultimately were causing his liver to shut down.  One may think that would be a very trying period.  Indeed it is.  It is never easy to carry on with a normal life for the other four at home, managing activities, meals, homework and hugs while a mom is in the hospital and dad juggles being a busy attorney and a Mr. Mom when he comes home from work.  We go through it all too often and it doesn’t get easier, it is just part of our life.  But that is where I find my flow.  Our hospital room was so peaceful - Bridger oozes love even when he is in a practically comatose state and the nurses, doctors and staff feel it and comment to such.  I am told from the nurses that when the new nurses come on for the next shift our previous nurses boast to them how lucky they are to have us on their caseload that day.   This hospital stay was full of moments to reflect, time to chew on some deep thoughts that get buried inside me, wonderful conversations with nurses and doctors that resulted in a new possibility to be a presenter to medical students on the critical balance in maintaining a healthy, thriving family while caring for a medically complex child.   I came out as refreshed as if I had just spent a week in the Poconos.
So how do I find flow in our hospital stays?  I have to give credit to a couple of wonderful neighbors who are truly compassionate and serve because of that.  Too often people serve out of duty.  Service doesn’t necessarily breed compassion, but true compassion always breeds service.  Harmony came in the form of  a wonderful visit from a  dear friend that lives a parallel life caring for her daughter with special needs.  But I think the larger force in finding my flow here is realizing when everything is out of your control, that there is really nothing you can do about it.  So that takes away the need to worry, to plot, to plan.  You just exist where you truly are and savor what truly is.


I also find it here.

I really do.

Disney, for us, is just like the commercial states – Magical.  There was no better way to celebrate restored health than a week in Florida.  I will do this vacation justice in a separate blog post to come but will sum it up with three words.  Best week ever.  We flew down, rented a super huge white extended van complete with vinyl floors and a electronic back-up beeper (which the kids thought was the best car eVeR), stayed in our favorite off-site 3 bedroom  accessible condo, and hit all the parks.  Best week ever.
Bridger loves Disney in a way that is hard to describe.  Every morning since, the first thing he says when he wakes up is "I wah go DEEDEE".  No translation needed.  He cried every time he got off a ride, despite our best efforts to convince him that there would be another fun ride in a matter of minutes. 
I was told once by a woman that, “You people,” ('you people' was referring to you special needs families) “have it so easy!” She then launched into a nauseating monologue on how her son can’t stand in line for an hour for a ride at Disney either and how all of our perks make life so easy.  Comments like that are real zen-deflators.  May I interject that I would wait in line for a hundred hours for the Peter Pan ride if it meant that Bridger could stand on his on legs beside me.  I would trade bypassing the Splash Mountain lines if it meant that he wouldn’t have a seizure waiting in the parade line.  Disney World for us still comes with hours of Bridger screaming from over stimulation, with finding quiet cool places to tube feed, change a very large diaper or lifting 65 pounds out of his chair and into rides dozens of times a day, along with the regular challenges of herding the other 4 cats around an overcrowded park.  But despite all of that, I find my flow there.  It is a place where I see true excitement and utter joy screaming out of Bridger’s eyes at the same time of all my other children.  What is exciting to the others usually is quite the contrary to Bridger.  To have everyone smiling all at once is priceless. 

Lastly, I find it here.

The small and simple pleasure of taking a scalding bath in my extra long soaking tub filled with chocolate fudgy cake bubble bath from Sephora, an organic peppermint candle and a good book.   And when the lights go down in our big top at 20:00 hours, I can enjoy utter silence and my simple pleasure of my long bath.  I find my flow there too.

I don’t find my flow in yoga classes wearing the cutest yogini tops, or in exotic tropical destinations with my husband.  Groupon and Living Social are such evil teasers – blasting me with visual reminders of the incredible sites and travels I am missing out on for unbelievable low prices.   Those sites torment special needs moms as we realize we will never have those experiences.  It is a luxury  when we can go grocery shopping.  I won’t have palms and white sand any time in my near future. I can’t put off waiting to find my inner peace in a bulky bit if “me time”.  I won’t find my flow in any of these places because these things will never happen.  I find that time stands still in those every day moments like now, when I am having a second to think and type, while I entertain more medical phone calls in between sentences, crunching on some delicious almonds while my little spunky girl sits next to me drawing and spilling her juice box on my to-do list.  Yes, even in my flow, I still have one of those silly lists.