Two Years

Two years.

I've sat here for a bit now, staring at that first line.  Two years.  I'm not quite sure what to write, though, to commemorate (is that the right word?  celebrate? acknowledge?) this day.

Two years + one day ago we were still blissfully living in the before, and two years ago we learned how very quickly life can change.  In the amount of time that it takes a bike wheel to go over a rock, our lives were upended.  We've traveled a long road since that day and, as cliche as it may sound, we are stronger now than we were then.

I've learned a lot in these two years.  I now know that happiness is not the result of certain material conditions, but is rather a choice we actively make every day; that love is made sweeter by challenges and difficulties; that I'm good in a crisis and can handle more than I ever anticipated; that successful navigation of the murky waters of insurance often relies more on perseverance, and an unabashed willingness to constantly call doctors and vendors, than anything else; that children (or our child, at least) are remarkably adaptable; and more and more and more.  With this blog, I've tried to focus on the positives, the strides forward, and obstacles overcome, as opposed to the challenges, heartbreak, and frustration that accompany a major injury.  The struggles have certainly existed for us and our family, but looking back, I'm glad that this blog is more a testament to our triumphs than our struggles.

This is a big day, medically speaking.  With this day, we reach an important milestone in the SCI-world.  Jason's injury is no longer classified as acute; he now has a chronic spinal cord injury.  We also move out of the marriage "danger zone."  The divorce rate is something like 75% after an SCI.  At two years post, it returns to levels comparable to what is seen in the rest of the adult population.  I can honestly say that I've never felt as if our marriage was in danger as a result of this injury, though there were moments of pure terror of the unknown in the beginning. (As an aside, I will add that I was terribly judgmental of the spouses who left after an injury.  After mentoring a few spouses, and having the wisdom gained by time, I understand--even if I don't condone--their actions.  There are NOT enough resources for spouses following an SCI, and more than one study has shown that it is the spouse, and not the person injured, who is at high-risk for long-term depression and other mental health issues.  The medical and non-profit sectors are failing families by not focusing on the whole familial unit in the aftermath of catastrophic injury.  Right now, surviving this type of injury with your marriage in tact depends a lot on 1) whether your marriage was good before hand and 2) if you have extended family members and friends willing to step in and help...for months.  We were lucky to have both.)

I want to recognize that this day is something different, that we are moving into a new world, a post-recovery world. So, I'm ending the blog.  Don't be too alarmed, though.  I'll still write about our family (mis)adventures, but I'll do so somewhere else. If you're interested in reading more about what we're up to, head over to http://leybas-after-recovery.blogspot.com/  Bookmark the page, sign up for email notifications, follow it--whatever your preference.  If you decide to no longer follow us, then let me give you my thanks for being a part of this two year journey.  Your support, virtual or otherwise, helped us get to the other side of this injury, and I'm profoundly appreciative of that.

I don't plan on completely abandoning what has been written here.  I'd like to write a book, even if it's just something for the consumption of family and friends (or maybe even a handbook for catastrophic injury for the newly injured), but I'm not sure how long that will take to put together, or if I'm ready to write about some of the harder moments in all of this.  

It is my hope that what has come through in the telling of our story is that, at the end of the day, this was a love story.  A story of a family that faced rather unique challenges and made it through; a family that didn't just survive, but thrived in the face of adversity.  And I hope you all got to a see a little glimpse into why Jason has such a strong hold on my heart.  He is amazing, and there's nothing in my life that brings me greater joy than being his wife, and Savannah's momma.  It's only fitting, then that I end this post--and this blog--with my favorite image of my two favorite people.

Thank you for everything.

All my love,
Ashley

Kennedy Krieger Care Packages: We Need Your Help!

As promised, your second post of the day, though this one is written by Jason's brother (with a few editorial additions on my part). Apologies for the random highlighting...blogger isn't cooperating with me tonight.

Hello, this is Nicholas, Jason's brother.

This year, much like last year, donations are being collected to help aid families who have recently suffered a spinal cord injury (or other traumatic spinal/brain injury). This year, though, the donations are not for Santa Clara, they are instead for the Kennedy Krieger Institute's Pediatric Rehabilitation Center (http://www.kennedykrieger.org/patient-care/patient-care-programs/inpatient-programs/pediatric-rehabilitation-unit), a rehab center that specializes in SCI rehab for children from birth-21 years of age. Our goal is to assemble 40 care packages (1 for every patient) and also collect items to form a entertainment lending library for patients to borrow (this is especially useful at night, which are easily the most difficult times in the hospital, since there is not much scheduled and you are left to reflect on the enormity of your situation).

There are several ways for you to get involved.  

1. You can mail individual items needed for care packages, or for the lending library.  Some ideas for this include:

• Hygiene Products (toothbrushes and toothpaste have been donated).
• Face Wipes
• Baby Wipes
• Dental Floss
• Travel Size Shampoo/Conditioner/Body Wash
• Body Lotion 
• Nail Care Items (filing boards, clippers, etc)
• Entertainment (for various ages from toddler to young adult)
• Puzzles (crosswords, sudoku, word search, etc)
• Reading Material (books, magazines, etc)
• Art Supplies (crayons, coloring books, sketch pads, etc)
• Miscellaneous
• Water Bottles
• Notes of Encouragement
• Items needed for common locations for all patients to borrow:
• Books
• DVDs (only G, PG, and PG-13 rated please)

These items can be mailed to: Nicholas Ng, 13100 Peach Leaf Place, Fairfax, VA 22030.  If you are in the NOVA area, I can also arrange to meet you to pick these items up.

      2.  There is an Amazon wish-list set up at:

• http://www.amazon.com/registry/wishlist/1146UYEGJ93TT/ref=cm_wl_search_bin_1
• If you buy something from the wish list, you can elect to have it mailed directly to me.  If you do this, please send it as a gift, so that I know who sent it--I'd like to be able to thank you for your help!

     3.  You can send me a check: 

• Mail to: 13100 Peach Leaf Pl., Fairfax, VA, 22030 
• If you make it out to Nicholas Ng, I will purchase remaining items that are needed.
• If you make it out to Kennedy Krieger Institute, it will be sent directly to them, and will be used to purchase gas cards (many of the families can not afford the gas required to drive to Baltimore and stay with their child).

All of your donations are tax deductible, just be sure to provide me with a mailing address so that the form gets to the right place.  

Thank you for your time and thank you in advance for all of your wonderful donations.
Sincerely,Nicholas Ng

PS (From Ashley):  Rehab is terrible and overwhelming and, ever since J left Santa Clara, I've been working, through the donation of care packages and other mentoring activities, to make it slightly less terrible for those who are there.  I'm super excited that Nicholas is stepping up to help in such a big way.  KKI holds a very special place in our heart--I truly credit them with a lot of Jason's recovery.  We're swiftly approaching the two year anniversary of Jason's accident, and I could not think of a better way to honor him, and the strides he's made, than to donate to this drive.  

Wheelchair Travel: Boston Edition

Today, dear readers, you get two posts for the price of one.  I'll be writing a bit later to tell you about a fun service project Jason's brother, Nicholas, is doing for the inpatient children at Kennedy Krieger Institute.  But, for now, Boston!

I feel like we're becoming pros at this wheelchair travelling thing.  The initial fear I had about flying post-injury is more or less gone, now that we know what to expect, and I know what I need to do to ensure that all goes smoothly for us both in flight and at our destination.  We flew to Boston last week, and outside of some issues boarding our flight out of SFO, everything went great.  We flew Virgin America (seriously, if you've not flown them yet, do so...so much better than the alternatives!) and arrived into Boston super early in the morning.  Thankfully, our hotel didn't make us wait too long to get a room (we arrived at 8am, check-in was not til 4pm) and, even better, upgraded us (for free!) to a concierge level room.  I'm not sure what motivated this upgrade, but we think it was what Jason and I refer to as a "gimp perk."  Whatever the reason, I'm glad of it--we had beautiful views of the water and got access to the club lounge (which meant free breakfast, snacks throughout the day while I was writing up there, free appetizers and dessert at night....very nice).  While Jason did the conference thing, I worked on my dissertation.  I had originally planned to play tourist while in town, but the weather was not terribly cooperative, so, instead, I finished a dissertation chapter.  Not a bad exchange, and I'm feeling a lot less stressed about writing today, so all's well.

Jason gave the keynote address on the first official day of the conference, which he rocked.

Jason giving his talk--I sat way in the back, so this isn't the best of photos.  

Afterwards, we celebrated with well-earned margaritas!

The Selenium Committers

Dinner the last night of the conference...after 6 years in California, it's fun to be reminded that it rains some places in June :)

Miss Sav stayed in California with her grandparents, so the Boston trip gave Jason and me a chance to go on dates and enjoy conversations with other adults.  We enjoyed this tremendously (though, after our first night away, I was ready to be back with my girl).  We got back home last Saturday afternoon and Jason enjoyed a quiet father's day.  

I'm starting a new job on Wednesday as a teaching consultant, which will have me out of the house quite a bit--more than I've ever worked out of the home since Sav was born.  I certainly will appreciate all the good thoughts you can send me as we transition into this new working arrangement.  I'm excited about the position--I'm passionate about teaching, so this is a good fit for me--but I'm worried about what this will do for dissertation writing (this post is through UC-Berkeley, and they are very supportive of my writing goals, so in theory this shouldn't be a problem) and, of course, for our family.  Changes can be scary :)

Wishing you all a happy Tuesday.  I'll be back in a few hours with more info about the KKI project.

Love you all,

Ashley

Disneyland

We just returned from a wonderful 4 days in Disneyland, our first real vacation since Jason's accident (we've certainly travelled a lot since the accident, but always for work on physical therapy...this was just for fun).  We drove down to Anaheim, something I was a little worried about prior to leaving.  I wasn't sure how Jason would do in a car for 6-7 hours, or Savannah either for that matter.  To help Jason, we bought a special cushion for the car that would make it easier on him--it seemed to work, thankfully. Keeping a three year old entertained for a long road trip required a bit more thought.  We did the obvious--loaded up her iPad with movies/games/etc, but I also wanted activities for when she inevitably got tired of that.  So, I broke out the car tray we bought for our trip to Tahoe--it's made of a soft material, so in the event of a car accident, it would collapse and not hurt her.  It provided just enough stability for her to be able to color, play with dolls, and eat snacks.  She wasn't a fan of this at 16 months old, but at 3 it worked perfectly.  We'll definitely take it with us when we head East in July...we'll be driving from Baltimore to Beaufort this go round.

Ready to head off on an adventure!

In the weeks before we left, I also stocked up on lots of litte, $1-$2 toys/sticker sets/coloring books.  If she got bored with one thing, Jason was able to reach in the magic bag o' toys and pull something new out for her.  This worked perfectly...she was great for both car rides (and didn't sleep at all really...maybe a quick 20 minute nap?).

We didn't tell her where we were going--just that we were having an adventure.  When we asked what she thought the adventure was, she had two ideas that were repeated quite frequently.  The first was that we were going to San Diego (I thought this was rather specific, and odd, since we've never been there or talked about it, but she told us one of her teachers was going there, so I'm guessing this is where she got it); her second hope for our adventure was that we would milk cows...she likes farms, so I guess this wasn't too surprising....

When we finally arrived at our hotel, the person checked us in mentioned that all the princesses lived nearby...her little mouth just formed an "O" and she got even more excited.  It was awesome.  We stayed at the Grand Californian, which is one of the Disney hotels...I can not say enough good things about this place.  From an accessibility standpoint, it's hands down the best hotel we've stayed at--unlike other places that seem to just follow the letter of the law re: ADA, the folks at Disney seemed like they actually consulted a wheeler to see what would make life easier for them.  The shower was set up so that J could actually use it independently--a first for us.  Most of the time, the shower requires you to push your chair so far away (in order to prevent it from getting soaked) that you can't reach it post-shower.  They even thought of little things...like a small threshold ramp, so that J could access the balcony.

Beyond being incredibly accessible (which carried through the entire park...we didn't run into any problems the whole trip...so so nice), the hotel was just beautiful, and made it so easy to get to the parks.  We will definitely stay there again.

Now, to the fun bits--the parks! Savannah enjoyed (most) of the children's rides.  She was less excited about the indoor rides, but eventually worked up the courage to do some of those (she really liked the Little Mermaid one...especially because we got a special car that the wheelchair could roll directly in to).  The carousels were her absolute favorite..but more exciting than rides were the princesses.  I totally underestimated the amount of time we'd spend waiting to meet princesses.  She wanted to meet them all....so we did.  We did a special lunch at Ariel's Grotto, which besides being pretty yummy, also allowed us to meet several princesses (less to stand in line for later).  Sav was in heaven.

Happy to have met the princesses...and to have had a really big dessert!

After lunch, she napped (another good thing about staying at the park--can easily get back for nap time), and then we went to meet more princesses and watch the first parade.  Jason's wheelchair gained us access to a very good parade spot.  There's not much to recommend an SCI, but getting to the front of the lines and parade areas is certainly a perk of this injury.

On the Dumbo ride...nearly all of the rides were accessible.  

I asked her to show me how excited she was, pre-parade!

She got particularly excited about Peter Pan and Captain Hook!

Our second full day in the parks was spent mostly in CA Adventure...again, lots of carousel rides (and very slow train rides!).  Thankfully, Savannah is not a big fan of the Cars movie, so we avoided the huge lines there, spending most of our time in Bug Land and at the various Little Mermaid attractions. We also decided to try out the ferris wheel.  This ride offers a twist on the traditional ferris wheel--some of the gondolas swing.  From a distance, this looked like nice, gentle swinging, so we all got on. Jason transferred out of his chair and we enjoyed a nice, gentle ride up to the top.  And then we came down...fast.  And the swinging was not gentle anymore.  I hate heights (and ferris wheels), so I was not feeling great.  Savannah freaked out, and was clinging to me and then, from across the way, I could hear Jason yelling that he did not have enough trunk control to hold himself up with that type of swinging (there weren't really any places for him to get a good grip on the seats...).  We were quite the spectacle...thankfully it ended before we all ended up in a puddle on the floor...in the future, we'll do the cars that don't move.

On the ferris wheel, pre crazy swinging!

That afternoon, we spent a good bit of time tracking down a balloon vendor so that Sav could get a Mickey balloon....she was very excited when we finally found him (this was way harder than it should have been!).

We wrapped up our trip with another character meal--this time breakfast with Chip and Dale (and friends).

Mickey mouse waffles!

All my fellow Nutmeg parents can probably appreciate how excited Sav was to meet some bears...

We had such an amazing time, but are glad to be safely home and enjoying a quiet, long weekend. I hope you all enjoy the weekend, too!

All my love,

Ashley

April Outings

April wasn't all injury and illness...it was also a month of outings/parties/holidays/fun!  A few months ago, Jason and I started talking about re-arranging his SCI-FIT schedule, so that we could have more time together as a family.  Since October 2011, Jason has gone to SCI-FIT pretty much every Saturday, leaving home around 8am and returning around 1pm...by the time Savannah had her nap, this left very little time to do anything together as a family.  So, as of April 1, Jason no longer does SCI-FIT on Saturdays (we now have the standing frame/glider, so he is able to get a lot of the gym workout done at home...he's still putting in at least three hours at SCI-FIT a week, though).  We have made good use of our time together, going on lots of little outings with Savannah.  Without further ado, this is what April looked like for us!

Dying Easter eggs...a little tricky to do this one handed, but Sav did a great job!

The Easter bunny was good to her.

I spent a morning in Savannah's classroom with her, post-collar bone fracture.  I highly recommend all parents do this: one, I was super impressed with how all the teachers manage 18, 2-3 year olds (and the kids listen to them so well!), and two, I got to see what a normal day looks like for her, which was awesome.

Painting, one of her favorite activities.

Savannah and I went to a tea room in Niles (called Thyme for Tea..HIGHLY recommend!).  She got to have "tea" (apple juice in a tea pot) in a fancy cup, and lots of finger sandwiches and treats.

They even provide a big bin of hats for you to rummage through...I thought Savannah picked the perfect one for her little head :)

Cute kids plate of goodies.

Annual trip to Harley Farms to see the new baby goats...these had just been born within the last 24 hours!

Savannah was initially wary...

But she warmed up eventually (especially once one of her school friends joined in on the fun!)

Lots of picture walks....

Saturday morning "hike" on the Alameda Creek Trail

Sometimes, I forget how beautiful NorCal is...it's nice to be reminded occasionally!

Post-walk lunch...tired girl.

And tired puppy.

She's really been into dressing up the last few weeks...

At school, Savannah and her friends often talk about San Francisco, so we decided to actually take her there (horrible parents that we are, she'd only ever been once prior to this outing...)

She actually did enjoy the BART ride (I think this was her favorite part)

Ferry Building, views of Bay bridge and Treasure Island

We got ice cream soon after arriving, then Savannah turned to us and said, "ok, now I want to go home."  

We ended the month with a lovely birthday party for one of her best buddies.  She was super excited to try out his baseball equipment!

And ice cream sandwiches, a first for her...she was a fan :)

We're only a day and a bit into May, but it's already shaping up to be a great month.  Classes ended at Berkeley yesterday, so I'll have more free time to dissertate (trying to finish up my second chapter in the next two weeks...), though I still will proctor my kids' final exam on May 17 (we got the 8am spot....woohooo! Nothing like leaving Fremont at 6 something in the morning to watch students take an exam for three hours). But, perhaps most excitingly...we're going to Disneyland on May 20!  Our tickets and vacation package stuff came in the mail yesterday (we booked through AAA and, so far, I've been very impressed, both with price and the "extras" you get for going through them)...Savannah doesn't know about this trip, though I could probably tell her "we're going to Disneyland," and it wouldn't mean much to her....now, if I said "we're going to where the princesses live," that'd be something else entirely....  We're planning on just putting her in the car, and surprising her with Cinderella's castle....hopefully it works.  I've found that, lots of times as a parent, when you're very excited about something you've planned for your child, their reaction doesn't always match up to your expectations (see this: http://www.babble.com/babble-voices/roadside-assistance-kristen-howerton/2013/04/23/epic-fail-disneyland-surprises-gone-wrong-alternate-title-kids-are-the-worst/).  I'm hoping this is not one of those times :)

Love you all,

Ashley