May 16, 2014

The Spotlight on Them

You know those moments when you step back and are amazed at the beautiful people your children are turning into - and you wish you could take credit, but you know it really has nothing to do with you?

I have lots of those.  Most recently, with Evie and Sadie.

They wanted to show their gratitude to Canine Companions for Independence for allowing Bridger to have this opportunity to receive a service dog.  They know it is Bridger's and that they won't be interacting with it or hardly touching it.  Do they care? Are they jealous? No.  They are extremely excited for Bridger.  I am so grateful that my children love to celebrate each other.

They chose to show that excitement by raising some money to purchase an item or two of the Wish List posted by CCI.  I thought they might be able to buy a toy or two with what their 9 and 10 year old efforts could produce.  Boy, was I wrong.

They went right to work making flyers advertising their services.  They cleaned baseboards - even calling themselves the "Baseboard Brigade" on their flyer.  They trudged around with their bucket, rags and cleaning gloves from house to house all during spring break. They made homemade bread, homemade strawberry jam and whipped up some honey butter and sold several dozens of yummy bread baskets to friends and neighbors. They had a cooking class for their friends to teach them to make the same and the friends were invited to bring a donation for the cause if they desired.  They did pet "sitting". They walked dogs in the rain, sleet, and {yes} snow.  It was a long, exhausting spring break for them.  Kind neighbors and friends sweetly supported them with donations and generous "tips" for their services.  Their energy became contagious as their cousins across the country hosted a party for the cause too!

When all was said and done, these little girls raised $1000 in one week!!!  They purchased almost the entire wish list! Included in their gifts (some not pictured below) were a couple large dog crates, four high quality dog beds, an agility tunnel and frame, lots of dog treats, training items, toys and more!

A special thank you to all who supported them!

I am so grateful in this Bridger-centric time, that I could sit back in the shadow with him, and have the spotlight all on those two amazing girls as they presented their hard work to Canine Companions for Independence.

May 15, 2014

Summary of Week 2

A blog without pictures is like an Oreo without the cream filling.  It is all you really want anyway, and you just tolerate the rest.

So I stole a moment to access a computer that I could post some pictures finally.

The Beginning of the Story. . .

Day 3 we finally got to see the actual dogs we were going to be working with for potential placement.  They rotated a few dogs through us.  Every dog had its charms for different reasons.  But then. . . along came the big T2 -- Tyrone II.

Love at first sight!  It was magical.  I think I even heard a choir of heavenly angels singing in the background.  This big guy came and plunked his large head right on Bridger's lap.  Bridger just lovingly leaned his face into his and just gave him all the love right back.

Tyrone and Bridger tolerated the class time while I was busy absorbing all the info being taught.  Ty already knew it all so it was just up to me to figure out my half!  So Bridger and Ty just hugged instead.

The first night together was a riot.  I put Bridger in his enclosed safety bed and encouraged a very uncertain Ty to join him.  Bridger gave Ty some goodnight kisses then I told Bridger to say goodnight to Ty, and I had Ty, in turn, say goodnight to Bridger by issuing the "speak" command to make him bark.  Bridger thought that was HiLaRioUs! As I zipped them up Bridger looked at me and said, "Mom, I Lub Him!"

I expected the tent to rock for a couple hours with all the new excitement in there.  But I had told Bridger to help Ty go to sleep, so he put his arms behind his head, squinted his eyes shut and the tent was perfectly still.  I would hear a little giggle every now and then but when I went to peek inside, Bridger was sound asleep.  This was the first night since we had been here that Bridger didn't take 2 hours to go to sleep.  It was also the first time he slept past 4:00 in the morning.  Unfortunately, I didn't enjoy the long night of potential sleep because I was keeping one eye on that tent the whole night - wondering when they both would be fed up with sharing space, when Bridger would roll on Ty, when Ty would roll on Bridger, when somebody would have too much paw in the face, or when Ty would have to go potty.  But, nope, it was a dreamy night for two in the big blue tent.

We worked really hard for the past two weeks together.  We have been in hours of class lectures, hours of practice time, field trips and grooming routines.  This morning was the written exam and this afternoon was the public certification test that we did at Sam's Club.  I am relieved to report that we passed both exams and so I now present to you:

Team Bridger and Ty!
(and me. I am the Service Facilitator to the team. just not as cute as these two)

Tomorrow is graduation day.  It sounds like a whirlwind of a busy day.  I am hoping Bridger is happy for it.  If not happy, at least compliant.  We'll see! 

May 14, 2014

The Home Stretch

Reinforcements arrive this weekend in the form of my sweet husband, Lance and little Eliza.  Alan drove up to switch out Lance for my older two daughters to be my helper for the week.  We had a lovely 28 hours together and enjoyed some relaxing beach time and yummy NY style pizza.  They gave me some needed Mother's Day hugs, met the new addition to our family.  

Alan came with roses in hand, Eliza came with the biggest hug.  Just so you know, Eliza's hugs are the cure for most everything.  I missed that little bug.  When I would call home and try to chat with her, she would oblige for a minute, but then she would ask to talk to Bridger.  The two of them would talk it up about who knows what - and then she would hang up.  Lance grew another two inches in the week I was gone. Seriously, how does that happen?  The girls packed up and in the same whirlwind that they came, they were gone.  It was just what I needed to regroup to be able to survive the second week.

And here I am. Smack in the middle of week two.  Information is pouring in, we are taking the dogs into the environment where all that you learned is tested in action.  But I see the light at the end of the tunnel.  It is the light of home, and right now, nothing has ever looked so good.

Busy day ahead.  I still have to do my homework (yes, homework!) before class begins, get Bridger showered and ready, fed, do meds, get myself ready and get the dog fed, ready and walked.

May 12, 2014

1/2 Way Point

For those that I am connected to on Facebook, don't let my recent post fool you. This isn't all dot-to-dots and seashells here.

This Team Training is not for the faint of heart.

I cracked.  Saturday at 9:30am precisely.  Everyone of us here has reached our breaking point already and we laugh comparing when that moment was for each of us.  Luckily, I bounced back (as I always seem to do) and put on my poker face and kept going.

The training is rigorous with 7 dog trainers staring at your everything you do -- right down to the flicker of your finger, your lack of proper expression, your shoulders that are too tense, your tone that is too high, your hips that are twisted a few degrees too far to the right. . . And they comment and pick apart every bit.  Add on top of this that I am trying to manage Bridger's movements, tone, expressions and wheelchair twisted a few degrees too far to the right, when he is in a very non-compliant state and you have a recipe for disaster.

Bridger is functioning at maximum boiling point.  He is surrounded by the commotion of dogs and people all shouting commands without reprieve.  There are none of his comforts of home here that act as his "reset" button to help him self-soothe and calm down.  He is sleeping in a strange bed, in a strange room, on a strange floor, eating from a strange table in a strange kitchen. . . all of those unfamiliar experiences stress him out in a way most people can't understand.  He expresses that in frequent meltdowns.  When others get to go on a break, I get to rush in our room to change Bridger's diaper and try to get him to have a drink or snack to snap him back into an agreeable state.  When others get to retire to their rooms to relax and unwind for the night I am going back to our room with Bridger who is not relaxed and wound up tight and try to shower him in a very oversized adult shower chair as I hold him with one hand so he doesn't fall through the hole in the center and try to rinse the shampoo out of his hair with the other simultaneously managing the shower handle with the same hand and not make myself soaking wet.  After that I try to entertain him in a 10x10 foot space with the 3 toys I have for several hours until bedtime.  Bedtime is not the relief it should be because it is a strange bed and Bridger won't just go to sleep without lots of noise (pleasant and not-so-pleasant) for a while.  He has been waking up at about 4:30 and letting me know he is awake in every way possible.

In summary, Week One has been really, reeeeally tough.

This is not a complaint.  This is just reality.  It is the reality that we chose to be a part of in an effort to help Bridger in every way we can.  I am seeing glimpses of what is going to come out of this, which is nothing short of miraculous.  That will make it all worth it.

** note: due to my extreme level of exhaustion right now, I am not going to proof read, spell check or otherwise even give this post a second glance.  So please pardon its raw form.

May 10, 2014

Beautiful People

One of the reasons the incredible blessings outweigh the excruciating challenges in this journey is because of the beautiful people that have come into my life that I would have never met if I weren't on this "alternative path".

My journey is full of beautiful people - people who have special needs, people who parent them, people who are married to them, people who care for them, people who teach them, people who love them.  My list of beautiful people has grown by 14 this past week of Team Training with Bridger to receive his service dog.

It is starting to feel a bit like college here.  All of the Training Teams live in dorm rooms connected by the same hall.  We all eat in the same kitchen.  We go to class together. We do our laundry together -- making sure (just like in college) that you don't leave your clothes lingering for too long after the completed drying cycle.  We all hang out after the day is done and chat.  You learn a lot about people after even just a week of such close quarters, and, what I have seen, heard and learned is beautiful.

There is an older couple in which the husband had a spinal cord injury a few years ago and has limited use of his arms and legs.  I am sure that a wheelchair and canes were not anticipated parts of their vision of the empty nest stage of life, but the husband is as jolly and friendly as any man I have ever met and his wife is just the same.  They are beautiful people.

There is another older couple, they are quiet and reserved.  They are here receiving their second service dog to help the husband, who is in a wheelchair, since the first dog has retired after many years of service.  Despite being quiet and reserved, they wanted to do a Mother's Day barbecue to honor the moms here this week and brought up several large racks of ribs, purchased a grill which he assembled last night bolt by bolt, and is busy stirring up his own special recipe barbecue sauce in the kitchen as I am typing at nearly 10:00 at night.  So incredibly thoughtful and generous.  They are beautiful people.

There is also a younger couple here.  The wife had a traumatic stroke two years ago and has left her severely disabled.  I can only imagine the dreams that young couple had for life that are forever dismissed, replaced by the husband lovingly caring for his brave wife and she pushes forward to take on challenge after challenge.  She is one of the most courageous and tough people I have met.  She knows what "normal" felt like, and now is holding her head up high as she faces her "new normal". Her husband is the most tender soul that sits in the shadows. He speaks quiet encouragement to her, supporting her from behind as she walks slowly down the hall as she practices using her walker to keep circulation and movement in her one functioning leg.  The quiet love he oozes combined with her bravery is beautiful.

There are two dads here with their sons that have special needs.  I'm sure their other friends are spending the week on the baseball and soccer fields with their sons, coaching their boys and bonding during games, practices and teamwork drills.  But not these two dads. These dads are taking notes during dog lectures and tenderly coaching their sons during practice attempts as they show a father and son bond and teamwork of a whole different kind.  If you want your heart to melt in a matter of minutes, just watch a dad interact with his son with special needs.  I have yet to witness more tenderness emitted from a man than in scenes such as those.  They are beautiful people.

Then there is the most lovely young woman that exudes such radiance that when she leaves the room you still feel the light she left behind.  She suffered a spinal cord injury a decade ago when she was in her early 20's.  She doesn't have function in her legs and limited function in her arms.  She is the most positive, energetic and fun loving person.  She keeps an entire class smile during the long rainy days. Even her new service dog has caught on to her radiant energy and reflects that too.  She is a beautiful person.

Her mom is here helping her.  She was the first person that caught my eye and caused my eyes to brim with tears from my observations of her - because she is the mom.  She is the stoic caregiver that I look at and see what I will be in 20 years.  I see that her face is filled with smile lines, because her refined perspective sees that there is so much to smile about in life. I see that her hair has plenty of gray, because she has had more worry in the past 10 years than 20 people combined and has done a few billion insurance submissions and appeals to get the care her daughter needed. She is always looking to help those around her, including me, because that is just who she is.  She is positive, energetic and chipper - just like her daughter.  She is a beautiful person.

What a lucky girl I am, in this little spot on the map in NY at the training campus for service dogs, to be surrounded by such beautiful people.

May 08, 2014

Matchmaker, Matchmaker

Made us a match!

Of the two dogs I mentioned as possibilities yesterday, it  is . . . {insert drumroll}. . . Dog #1.  Anticlimactic. Not enough info. I know.  They have restrictions on use of social media to talk about this until a certain point in the training process and picture and a name and all the juicy details of the budding relationship will be divulged soon.  So it is just as well that I can't get my pictures to upload yet.

But I can say that something magical is truly in the air.  Bridger and this dog have a connection that has elicited a response unlike anything I have ever seen from Bridger before.  Every time we enter the training room and wait patiently in the chairs for the portion of the class when we practice handling with our specific dog, Bridger will ask over and over, "Where is {insert dog's name}? I want him!"  This dog continues to lay his head in Bridger's lap in his wheelchair and Bridger just squeezes all the love he can into that head.  When we are working on commands, Bridger will just wrap his arm around the dog and hold him tight.  When I was giving Bridger a break from his chair and had him sitting on a cushion next to me, his dog was laying on top of him.  Bridger looked up and exclaimed, "He is MINE, aaalllll MINE" and gave him repeated hug after hug.  When that love fest was over, Bridger used the dog to hold up his iPad while he relaxed watching his movie on it [Frozen, for the umpteenth time], and his little hand was reflexively rubbing up and down the dog's back soothing Bridger as much as the dog.

All of the above is just the icing on the cake to what the dog will really do to assist Bridger in life, and I hadn't anticipated how sweet that icing would be.  In the past, Bridger hasn't paid more that a few minutes attention to a dog -  if he would touch it at all, or assuming the dog would even pay that much attention to him.  He now has a best friend, that will never leave his side.  

A feeling that hit me straight from Heaven to my core early in Bridger's life is that he can feel emotion perfectly.  I have focused much of my attention on filling him with the emotion of love, directing him to the emotion of happiness, helping him find his favorite emotion of silliness, and managing his emotion of frustration.  Now is the time that I can attend to his feeling of loneliness, which will hit him in the coming years more that it probably should to a little 7 year old as the rest of the ambulatory world takes off to go chase their interests and passions and he remains.   But now wherever his limited path  will take him - or at times, dead end, he has a best friend to be with him.

We have a match made in Heaven.  Truly.

May 06, 2014

Team Training: Day 2

Today things got more exciting!  We spent more time handling the dogs - rotating through a few potential matches as the trainers study behavior (both people and dog), handling and responsiveness.  I have been paying close attention to which dogs they have been rotating through us more often than others.  I have it narrowed down to two.  Bridger doesn't care for dogs that are all in his face and licking him constantly - although he does like a little bit of kissing.  Nor will he initiate contact if the dog seems indifferent to him.  We have worked with dogs on either end of the spectrum. . . then, we worked with one that was the perfect blend.  He came up and placed his big 'ol head on Bridger's lap -- and just stayed in that position.  Bridger wrapped his arms around that head -- and just stayed in that position.  When I had Bridger put his hands on his lap and issued the walking command to the dog, Bridger put his arm across the Doug's shoulder and held him in a hug as they walked.  Melt. My. Heart.

The other dog will initiate appropriate, subdued contact with Bridger too.  He is sweet and responsive.  There wasn't the obvious love fest going on between the two as there was with the other dog, but I am in awe of these trainers and know that they know the personalities of these dogs and will make the perfect match. 

The {preliminary} MATCH will be announced tomorrow morning!  Bridger is so wiped out he is falling asleep very soon after I place him in his tent bed (which is unusual for being in a strange place.) I wish I could fall asleep just as easy, but I am just too excited! Who is the newest member of our family going to be?

{I am not able to upload pictures yet, but will update entries with photos when I can.  Rest assured, we are snapping away when possible!}

Team Training: Day 1

We made it - with the van roof intact!  Apparently, Long Island has some very old bridges dating back to when the roads were full of little Model T's.  They have low height clearances and my van couldn't pass underneath.  We got washed off with the rest of the semi-trucks into a mess of little roads and alleys, lost for a while until we made our way back to the main streets again.

We checked in, had an orientation and they provided some delicious Chinese food.  We set up camp and unpacked our bags for our extended stay.

Day 1 consisted of lots of information, lectures and homework.  We haven't met the dogs yet.

Long day. Bridger was a champ. Eva, Sadie and Grandma were great Bridger helpers while I attended the lectures.

Classes ended at 4:00 and the 5 of us took off down the road to the beach.  It was such a relaxing way to end a long day.  We brought Bridger's beach wheelchair with us which made for a fun, easy less difficult excursion.  The shore was full of large shells (as compared to the small ones or the broken fragments we usually find at our beaches at home) and the girls loved collecting all that their arms could hold.

That concludes Day 1.  I am excited for what comes tomorrow!

Pictures can't load right now. . . Check back to see fun pics.

May 04, 2014

And, We're OFF!

The Mega Van is packed to the gills.  We have the massive special needs travel bed, mattress and bedding, several packages of large diapers/wipes/liners/etc., tube feeding supplies, medications, \portable cushioned floor, wheelchair, positioning floor chair because he can't stand to be in his wheelchair 24/7, push chair for every day movement and tube feeding when I don't want him to be mobile, beach wheelchair - the one item I was questioning bringing, but think I will be so glad I did when we have nothing to do each day after 5 and are minutes from the beach, electronics, toys, huge stuffed dog that is Bridger's bff and helps him manage his reflux as he sleeps upright, a huge assortment of items we are giving CCI - including 2 xl dog crates, 4 dog beds, a bunch of training items and toys, bowls and food.  Phew.  I don't think I have the kitchen sink. . . yet.

For the record, I am a notoriously light packer.  For a week long trip as a family we travel with one medium duffel bag for the 6 of us.  Bridger's travel needs are growing as fast as he is.

And now we are off!  I am assuming I can navigate this massive van through Manhattan. I'm not quite sure I can make right hand turns on some of those tight intersections.  I wish my gps 
had a special setting for our van that posted routes that only required left hand turns.  Maybe that can be my next bumper sticker, "Caution: Wide Right-Hand Turns".

Cross your fingers we make it!  Exciting posts, hopefully, to follow!

May 03, 2014

Fabric Therapy

I am leaving town for two weeks in a matter of hours.  I am leaving with Bridger - which makes the details of "leaving", oh, so very complicated.  With the exception of his hospitalizations, he has never been away from his home turf that long.  The details of planning for every known and the bundle of unknowns is overwhelming.  My to-do list looks like a ball point pen threw up all over it.  

So what do I do?  I walk away from critical-must-get-done tasks this afternoon and get some zen from the humming of the needle on my sewing machine.  I somehow thought that finishing Eliza's curtains deserved to be on my to-do list.

I have to say I am quite proud.  I have never taken a sewing class and I don't know how to read a pattern.  I clip and snip and measure and adjust until my vision takes shape.  I'm sure the shape would come together much easier and quicker if I did know how to read a pattern.  But I think it looks good enough for a DIY job and the zen it brings me to hang that around her window --  it is absolutely therapy with thread.

I finished the valance in my other daughters' room not too long ago and every time I walk by I still feel a little swell of satisfaction.

I will remind myself of that feeling when I am still up at midnight tonight packing and consumed by a whole different feeling. . .

May 02, 2014

Table for Seven

One of the "losses" we have had in this journey is giving up dining out as a family.  In past years such attempts have been a whole heap of cray cray.  Bridger couldn't handle the crowds, he didn't eat orally and the stresses to the senses with the sights, sounds and smells caused him to react accordingly.  Every once in a while Alan will have family-dining-out-amnesia and want to all go out to eat together.  His mere suggestion to do so will usually send me rocking in the fetal position sucking my thumb.  Occasionally I will give into his request and after the mad 48 minutes of dining fun is over we leave the restaurant and exchange the questioning glance of dismay that says, "We just paid for that experience?"

Well, guess what?  There is a light at the end of the tunnel. A teeny weeny little flicker, but a light nonetheless.  Through lots of work, planning, coaching, etc., we finally were able to dine as a family. The lucky restaurant . . .  Bob Evans!  It works because it is quiet, breakfast food always serves up fast so our "countdown to meltdown" time is maximized, and its menu includes Bridger exclusive #1 oral intake of pancakes.  If we were never able to eat anywhere else again, I was satisfied that at least we could go to Bob Evans.  
still working on chewing with our mouth closed
Over the months that followed our Bob Evans discovery, the hope of family dining grew as we added one more dining option - CiCi's Pizza.  Bridger's other signature food is pizza. At CiCi's we can have instant food since it is a buffet, Bridger sits there content with his iPad and being fork fed bite after bite of saucy, low quality pizza.  And, since we have full disclosure here, can I just say that I am obsessed with the Fanta Apple soda at CiCi's.  yum.

Not trying to be greedy, we pushed for more options and after a lot of failures we added Cracker Barrel to the list of venues.  Pancakes 'round the clock, store of toys to escape to in the event of meltdowns, and a huge fascination with those little golf tee wooden triangle games -- particularly with throwing the golf tees (watch out neighboring diners!) It was a winner.

Well, the recent addition of a 4th restaurant makes this success finally something to blog about.  Bridger's latest dining out obsession has earned a nickname of its own - "The Apple Restaurant."  That would be referring to Chili's.  It earned its name because of the little electronic tablets on every table that Bridger can play the couple of little games on (which is apparently much more fascinating than the dozens of app options on both of his iPads we tote along with us everywhere - aka the "apples"). His new food that he will eat which is served there -- tortillas (but only if they are solid white with not a fleck of black on them.) When we went there for the first time and he was at the end of the table playing on his tablet with a container of tortillas he exclaimed in his loudest and most excited voice possible, "I Lub Dis Ress-Raun!!!" (Translated: I Love This Restaurant!!!) He begs to go there, which makes me so happy to know that he can be happy and the rest of the family can be happy at the same time . . . and that I can get out of cooking for a night.

It's been a long difficult road of many plates being aborted mid-meal due to special issues.  My kids even know the "vomit plan" - each having their assignment as to who does what and takes whom and to where in the event that Bridger vomits during the meal due to sensory reactions to the sight of the various foods.  Ahh, we have come a long way.  We have a long way yet to go.  But for now, I am grateful for my choice of four. . . FOUR(!) restaurants to choose from.

Table for seven please.

May 01, 2014

Kiss My Bumper

Growing up, my conservative father had a hard and fast rule - no bumper stickers allowed. True to my roots my cars have always remained naked.  Although, I have recently softened briefly and let my girls slap on a field hockey magnet on the bumper of our van.  We'll see how long I can stand to let that last.  

The era of the cluttered rear end of the Pinto has been refined to tailgates and rear windows that become mobile statements about the every hobby, interest and affiliation under the sun.  People are telling me how smart their children are, or how athletic, or what college they go to.  Bumper stickers are telling me who you are voting for - or apparently did vote for an election or two ago.  Vinyl clings are telling me the exact size, age and favorite hobby of your entire family - all in stick figure form.  The rear of our car is apparently the way we need to advertise about ourselves to the motoring world.

I couldn't hold out any longer, I had to say something with my car too. My new statement wasn't resigned to a little corner of my bumper, however.  No, this message was was granted a spot right in the center:

Am I making a statement or what?  I hope that what I am saying with it is loud and clear, because I have been ready to pull my hair at at times.  Alan and I gave much thought to whether we should do a lift out of the side or rear of our van.  After hearing of the nightmare experiences of several friends that are never able to find handicap parking available with the extra lift space on the side, we decided we would go for the foolproof design of a rear lift.  We didn't anticipate that there would be so many times that people couldn't resist the opportunity to park nice and cozy, right up next to the back of the van, practically kissing my bumper.

Recently I was taking Bridger home from school early so I pulled up to the curb (a big, long, vacant expanse of curb.) When I returned, there was a car within a foot of the back of my van.  I couldn't let go of Bridger in the middle of the parking lot to move my car forward.  So I politely asked if they could move their car back several feet so I could open my lift to put Bridger in.  I was taken aback at her incredibly put-out reaction as she performed the apparently exhaustive task of backing her car up a few feet.  As much as I didn't like having to ask her to do that, at least she was there for the asking.  Other times there has been no driver in sight for the car that is blocking our rear access, which has put me in a pickle on more than one occasion.

I was so excited when my 4x6 magnetic solution to my ongoing problem arrived.  And, just to be trendy like that, I made sure it was in stick figure form.