The Gracie Update

It’s time for some serious catch-up on all things Miss Gracie. To set the record straight, it has not been my intent to exclude her from updates here. In fact, I have so many partially started posts sitting in blogger, that it’s shameful! The problem is, Gracie’s updates require a great deal of explanation and, well, truth be told, gathering my thoughts and getting them put to paper (or screen) has been very difficult the last several months. The move (so much surrounding that should be its own post!) and taking care of three kids (two of whom rely on me completely for everything) have made the more thought-full blog posts take a back seat. I’ve just been too overwhelmed with the day-to-day - - we are busy living!  

All dressed... and finally somewhere to go!
Gracie was super excited on her first day of school! (I was a nervous wreck!)

I’ll start with the best news… Gracie finally started school on Tuesday, September 18^th… after over five months total out of the classroom.   We weren't sure what she could handle after so long out of school (but for a couple of visits to her new class while we waited to find nursing).  In true Gracie fashion, she was gang-busters for her first day and when I stopped by the class just before picking Preston up (they are on the same campus!!!), they told me she was fine to stay the last full hour.  She was signing, responding to questions and involved in the day.  I walked out of the room with tears in my eyes.  Happy tears.  Relieved tears.

My quick snapshot of Gracie Girl before we wheeled her into class.
 I didn't want to make a big fuss, but still tried to capture her... It's not the best picture, but the moment was big and I wouldn't be me if I didn't try to capture it!

Before she could start school here, we had to establish private nursing at home  (and that nurse would attend school with her).  Accomplishing that task proved to be (just as I figured it would) quite difficult.  We don't exactly live in the most convenient community as far as commuting goes.  (That being said, we are finding that, even though this is a small community east of Mt. Diablo that was comprised mostly of orchards and farmland only two decades ago, it is proving to be very "special needs" friendly in many ways.)  Because of our location, we met only four nurses over the course of two months… one of whom basically admitted liking dogs more than kids (and was 30 minutes late and sans bra … and that wasn’t a good thing!) and another who, though super nice, would likely be relocating in six months.  Then we met Girlie, Gracie’s new nurse.  She worked a full week before we had Gracie start school and has now been with us a month.  Girlie has taken a definite interest in learning to sign the basics with Gracie and Gracie seems to like her.  (Because of the timing of our "modified year-round" schedule, Gracie has only had 8 days in the classroom - - the first two weeks of October are the fall break. I look forward to Gracie getting back into the real groove of school this coming Monday.  And, if I am being totally honest, I am just plain looking forward to both of the big kids going back to school!) 

I haven’t met Gracie's entire school team, but obviously know her teacher and aide… both of whom I adore.  Everyone within the district and county has made a huge effort to get Gracie into the classroom as fast as possible and has gone the extra mile to make her transition happy and seamless.  Thus far, the communication with me has been fantastic and the classroom has an open door policy, so I can drop in whenever to check out how things are going.  So far, so good.

As many of you know from communication outside the blog, we pulled Gracie out of school in April.  The details will not be posted here… at least not for now.  Suffice it to say, we take her education and school experience seriously and pulling her out of her program was not a hasty decision, but the circumstances surrounding (what turned out to be) her last day required quick action on our part.  As we searched for new placement and subsequently found what looked to be a great school, we learned that John was to be transferred back to Northern California.  It seemed unfair to start Gracie in a new program in late May, have her attend for a few weeks of the regular school year and only two weeks of the extended school year before moving her 369 miles to start all over again.  More than any of us, Gracie was facing so much change in such a short time.   Her world had been full of goodbyes… some explained prior to them happening (like losing her long-time Occupational Therapist when she moved away in January) and some just happened.  Even though we felt she was better off not returning to her school placement, she lost her familiar routine and the people in it, including all of her peers.  With the move, she lost the familiarity of our friends, our neighborhood, our home, her wonderful nurse (tireless advocate, friend, park pal, playmate), Pearl, her great therapy family and her doctors (some of whom we adored).  Everything turned on a dime for Gracie and, unlike the move in late 2008, she didn’t handle it all that well.



Gracie cruising on her favorite trike during her last day of Physical Therapy before the move.
Behind her is the wonderful Director of that therapy unit, Kristen, and her beloved, dedicated PT, Laural.
We both miss our old therapy family so much!

 

Miss G working the stairs with Pearl and the top motivating her with toys and Laural helping her press on.

 

With Kelsey, her sweet as pie Occupational Therapist

With Laural... whom we not only loved as Gracie's PT, but also as a friend

The goodbyes were so hard for me - - not just because of my own feelings about leaving - - but because as Gracie’s mom, I knew that her world was in the process of literally tilting on its axis and I had no guaranteed way of helping her fully understand it or protect her from what she would feel as a result.  Our decision to move was family based… not Gracie-based.  That is, while we naturally must consider all of Gracie’s specific and particular needs first, we must consider the fact that we are a family unit and decisions like a big, life altering move must consider Gracie, but not only Gracie.  There were a lot of tears shed on my part… for all of us.  But the biggest ones have come since the move, wondering when and how things would start to settle for her… and inside those tears was (is) a lot of guilt for disrupting her world so much.

Pearl and Gracie heading out on one of their park outings.
We miss her tons!

For over two months, she was depressed.  Her feedings, though always challenging, became more of a struggle.  Her behaviors became more challenging.  She was unmotivated to do much of anything. Granted, in the first days at the new house, she was eager to check things out, but for the most part, she just hung out, unmotivated to play or walk much.  And, because it was extremely hot most days, she didn’t even get the chance to be outside much except for first thing in the morning - - a huge change from living just a few miles from the beach.   With the exception of our immediate family, every bit of her routine and the people in it, was taken away.  She even lost therapy time because she was wait-listed for the first two and a half months after we relocated.  Between July 13^th and September 18^th, her good days could be counted on one hand. 

Thankfully, there was good in there and... we took pictures! 



Life of leisure in the pool!
The first weekend after we moved, we drove halfway back to our old house to spend the day with family.
To say that Gracie thoroughly enjoyed their new pool would be an understatement! I think if Gracie understood the concept of a wish, she'd wish for this in her own backyard!

Hanging with Daddy... one of Gracie's favorite things.

Another good thing... John is off on Sundays.  This hasn't been the case in nearly four years!
On one of John's first Sundays off, we took a long family walk, stopping for lunch and park time.  Gracie spontaneously signed "happy" and "family" while we were lunching.  That, I can assure you, made up for a lot of really rough days for me.  Gracie's simple expression refueled me on so many levels.
 

Hanging with Gavin... Gracie seems to enjoy him as much as she did Preston at that age.
I think she remembers a lot from that time, too.  She chuckles at him regularly, even from across the room and has, on more than one occasion, signed "cry" when he's fussing. 

Hanging with two of her most favorite people in the world!

I love this!  I was loading up the car and signed to Gracie, who was in a different room than Gavin, that it was time to go.  I came back inside after taking my first load of stuff to the car to find that she had not only crossed the house, but had brought him his chewy ring, and was sitting up like this in his car seat to give it to him! 

So, it hasn't been all bad... just not an overabundance of good.  The important thing is we appear to have passed that really tough space and, with the exception of getting "medically re-established" (9 specialists, a pediatrician, a dentist and several therapists...), we are on the other side of a lot of hard stuff. 

(A little "good" teaser... Remember the blue feather from last November?  There was a "blue feather" day recently - - actually, it was more than a day - - stay tuned for that cuteness!)