April 28, 2014

Which One Could It Be??

Have you ever been so excited that you think you are just going to cry at any moment?

I have been living like that for the past 7 weeks!  Only 5 more days to go and I don't know if I can hold it in until then!

The history:  A couple of years ago we were playing at our favorite inclusive playground, Clemyjontri Park.  The park manager was there with an adorable little yellow Labrador in a wrapped in a yellow Service Dog in Training vest.  I sat down and chatted with her and Bridger was quickly enamored with this furry, four-legged ball of fun.  I had looked into different programs but after talking with her about the program she was a volunteer puppy raiser for, Canine Companions for Independence, and I knew we had found the perfect match.

We applied for a skilled companion dog - which is a very involved process including a lengthy application, doctor and therapist letters, several interviews, lots of photos, etc. We attended our final in-person interview last July at the training facility in New York.  I have never been more impressed with an organization in my life.  The trainers, facility, program and protocol were unmatched by any other organization.  We attended an introductory lecture for a couple hours about the program and dogs.  Lance, who joined me for the visit, had his choice to stay in the dorm room and play electronics or join me.  He chose to join me and took notes and asked questions to the instructor along the way. {insert swelling heart of love for this sweet big brother}  Also joining us was one of our favorite people of all time, Bridger's Special Ed preschool teacher for 3 years, Ms. Lisa. {insert swelling heart of love for this sweet lady that has given me a great path to start on and confidence in the educational side of the Special Life}  After the lecture we practiced some dog handling to see how Bridger would react.  It was going to be the perfect tool for him in the years of challenges that lie ahead of him.  We were told it would be a 2 year wait from that point to receive a dog.

Fast forward 9 months to last month when I unexpectedly received a phone call from CCI that they have two dogs that they believe would be a perfect match for Bridger and they invited us up for the intensive 2 week training to be matched with his service companion.  I couldn't stop laughing/crying/laughing all day. . . actually, scratch the all day part. I still am laughing and crying about it.  

Saturday, I received this postcard in the mail and I just about lost it. . . 

Either Bridger or I have been carrying it around in our hands for two days straight now and we can't stop staring at it.  It is the pictures of all of the dogs that will be at the team training with us.  Two of those dogs were decided to be good matches for Bridger and one will be going home with him.  Which one will it be?  Will it be Hickory? (We gotta work on saying that) Will it be Georgia? (We've been practicing - he has it down to "Jo-Jah")  Will it be Bo? (so very easy for Bridger to say and he already has a ginormous stuffed dog he calls "Bo" - how cool would that be?)

We take off for Medford, NY on Sunday for our 2 week expedition.  I have never been away from home with Bridger for 2 weeks.  Sizing up the equipment needs and planning for the unknowns is overwhelming.  This whole adventure is too exciting and important to overlook the littlest of details.  However, as long as there is time I will keep planning -- so I hope the rest of this week would just fly by already before my head explodes with excitement.

Never, in a million years, would I have predicted that a service dog would be part of my life.  There are so many unexpected elements to this Life with a Side of Special, and Alan and I just look at each other and laugh with every new twist and turn this journey takes.  Some twists are not as appreciated. . . but THIS one, it just takes the cake.

Stay tuned for daily updates during Team Training coming to you from Medford, NY, May 5-16!

Storybook Love

"Come my love I'll tell you a tale
Of a boy and girl and their love story

And how he loved her oh so much

And all the charms she did possess
Now this did happen once upon a time

When things were not so complex

How he worshipped the ground she walked

And when he looked in her eyes he became obsessed."
(Storybook Love vs. 1, by Mark Knopfler)

I love the movie the Princess Bride and I love the lyrics to its theme song.  It describes a love story that is happening right before me in the most tender and pure form.  Our story has truly begun with, "Once Upon a Time. . . "

Let me introduce you to our own, real life Princess Buttercup.

She has crystal blue eyes, dimples that melt your socks off, an incredible fashion sense with a strong preference towards adorable dresses and a heart that makes me cry.
We call her Ms. T, or, as Bridger will call her, "Tay-weh" (Taylor).  She is Bridger's classmate in his first experience in an inclusive classroom in Kindergarten and her charms have captured his heart.  She drew this adorable picture of she and her new friend on wheels earlier in the year. [insert that wheelchair stick drawings melt my heart! I collect them ALL.]

This Special journey has taught me about a different kind of heart.  Many of us have trained and taught our hearts in the various elements of learning and refinement that we need to acquire in this journey of life.  But sometimes you come across hearts that don't need any teaching at all - they are already perfect just the way they are.  What those hearts need are more students that can watch and observe and teach you what pure love looks like, even if that teaching heart comes in the unexpected form of a 6 year old girl.

Ms. T has been by Bridger's side every day in Kindergarten.  She has helped him with his coloring, his cutting, his snack and every elementary task in between. Instead of giving the report of her own day to her mother, she gives the report of Bridger's day. She bakes his favorite treat of homemade pumpkin bread and delivers it to him. She brags to her sisters about her Prince. She hugs him freely and those hugs fill him with so much joy on the inside that you can't help but see it on the outside.  
table for two
Bridger was the single requested guest to celebrate her birthday with her.  She sleeps with a framed picture of him next to her bed.  She doesn't care if he can't walk, or talk, or color, or participate in circle time.  She has loved him from day one for who he is and that natural, free-flowing, pure and tender love has made all the difference for Bridger.

"He said, "Don't you know I love you oh so much
And lay my heart at the foot of your dress?"
She said, "Don't you know that storybook loves

Always have a happy ending?"

Then he swooped her up just like in the books

And on his stallion they rode away"
  (Storybook Love vs. 3, by Mark Knopfler)

Or in this case, they rode away in his special needs jogging stroller. . .

April 27, 2014

The Squeeze

All too often lately I have been in Sadie's position in the above picture on the left -- pressed up against a wall with other people/things squeezing me from the other side and the whole world spinning without giving a darn if I am near the brink of losing my marbles or about to throw up my lunch.

April has nearly squeezed the breath out of me.  The ride isn't over yet.

I can't explain it in a way that 97% of my readers would understand. . . so I will just sum it up with hundreds of hours of insurance administrative work and appointments, including pre-authorizations, appeals, justifications, letters of necessity, prescriptions, prescription overrides, paperwork, IEP blehk, equipment orders and corrections to orders, accessibility remodeling and researching to find the most accessibility-friendly building supplies and accessories for such, supply shipment management, mri's under anesthesia, orthotic casting, all the prep work taking place for Bridger to participate in an IMOT (Intensive Model of Therapy) and hoping that some of the above mentioned work will bring it down from a 5-digit out of pocket amount to a 4-digit out of pocket payment for us.  And for the record, the above list is a pretty scant summary.  The long version is going through my head daily as I am juggling more balls right now than any clown ever should.

I realized I had reached my cracking point when the incredibly mischievous. . . charming, cute, BUT wickedly mischievous little 4 year old of mine took advantage of the 5 1/2 minutes of time I took for myself last week (in the form of a shower) and snuck outside and reached her curious hand in the Robin's nest she had been eyeing for some time and took a tiny little blue egg out.  That same mischief and curiosity overcame her and she couldn't resist the urge to crack it open. . . and. . . fingerpaint with the contents.  Yep.  Just, yep.  That is still all that I can say.  It took every ounce of self control I had to sit on my hands and tie my tongue in a knot and just rock in place for a few minutes.  Then I washed her hands a few hundred times over and called my husband (out of town) and told him I needed to get away.  When he got back in town that afternoon we discussed the options (or lack of them) I had at my disposal.  

Spring break hadn't really been a break for any of us, especially my older three who shoulder more responsibility than any child their age really should.  So I decided that I needed a spring break do-over with them.  I secretly packed an overnight bag for us and placed it in the trunk.  Sunday evening I told them that we were going to go for a drive while Dad put the two littles in bed.  They got in the car and we drove. . . and drove and drove.  We had delightful conversation for THREE hours without anyone the least bit suspect.  I was cracking up.  Every once in a while they would ask if I thought if Dad had the babies to bed yet.  I replied that he probably did and that we would be home in 15 minutes.  Then 30 minutes later we would repeat the same dialogue.  Not a question was raised when we passed by several rest stops down I-95 or even Kings Dominion.  We continued on to Williamsburg where I pulled in a parking lot of a hotel when, finally, a wondering word was raised from the back seat.  I laughed and told them about my secret plans all along and the surprise news that they would be missing school the next day as we were going to Busche Gardens. Ahh, it is so fun to be the messenger of such announcements and for a husband who took off of work to do other kiddos at home so I could steal away with them for a much needed break!  They were giddy for the next 5 hours in the hotel but finally fell asleep.  You know what was one of the things they were saying that they were so excited about?  That we could stay at the park as long as they wanted and not have to leave early because of Bridger.  That shows what an impact Bridger has on every facet of our lives -- even our vacations.

So the next morning we donned the sunscreen, hats and comfy sandals and had a entire day of fun!  I got to take off my Special hat and just be a mom -- a mom that can laugh and ride all the rides and not stand on the sidelines hold a wheelchair or calming a sensory meltdown, a mom that had patience enough to last me through a whole day of amusement park doing's and a long drive home, a mom that could focus on the needs, emotions and conversations of my other children with my undivided attention.  I got to be a Normal mom, and it was really, incredibly fun.

Now, 6 days later, I am back in the squeeze again.  Bridger is very sick and I am having to pump electrolytes down his g-tube in 15 minute increments in 15 ml doses all day long, carefully intertwining the dosages of Zofran and Motrin to keep his high fever down, seizures at bay and constant vomiting reduced so the fluids can stay in him to avoid a hospitalization (which is just the basic intervention to maintain the medically fragile - there is so much more beyond that to be concerned with.)  Vomit laundry is swirling around the washing machine with the next load ready to go and I lift, bath, brush, clean, hold, rock, sing and cuddle and hope that the others won't mind that cereal is for dinner and look at all those life-sucking tasks that I listed above, a to-do list that seems to grow before my eyes, that will have to wait until midnight tonight - when I will have a free hour to face it.

Until then, I will smile and think back to this past week when I got to be a delightfully refreshing person. . . I think we will call her "Normal Mom".

April 01, 2014

What Doesn't Kill You

You know that saying that "what doesn't kill you makes you stronger"?

Well, I have some thoughts on that which need to be shared.

And that is, I wholeheartedly disagree.

What doesn't kill you doesn't make you stronger.  What doesn't kill you just makes you nearly dead.

So here I sit and type -- very tired, feeling week and nearly dead.

That's all.