2012 - What A Year

Consider this my 2012 Christmas letter because if I were to pen and mail out a synopsis of this year's happenings, I'd need extra postage and a whole lot more of your addresses.   

As you all know, it's been an exceptional year. 

January started out on a fit and fun note as our Cure CMD team participated in the PF Chang's Phoenix Half Marathon to raise funds and awareness for Cure CMD.  

friend and Cure CMD Founder - Anne Rutkowski, M.D.

February, I made the mistake of stating this in a blog post:

As I keep up with friends on Facebook and my IRL friends, I realize how fortunate we have been.  So many people I know are bouncing in and out of the hospital with their kids for one issue or another.  There's nothing more stressful than a sick or hurting child.  For us, it's been a very long time since Jack was in the hospital and at least a couple of years since he's been sick.  I know how remarkable that is and it's not something I take for granted.  I'm not sure why we've been so lucky as to avoid sickness and the hospital, but I do know that being able to "just live life" is a blessing to be appreciated.

What was I thinking? I should know by now to never, ever tempt fate.  

Jack was upgraded to the latest and greatest ventilator.   

I was so proud of myself that I bucked the system and was able to make it happen without the protocol hospital admission.  Pride goeth before a fall?

March brought us Spring Break travels along the California Coast with our youngest. 

 

A 10th birthday party

A 19th birthday

Our first hospital admission and discovery of the kidney stone from hell

And the (missed) roll out of the TouchStones program during Grand Rounds at Children's Hospital of Orange County.

April included a 26 hour turn around trip to St. Louis and another half marathon with Team Cure CMD

Surgery to get rid of partially remove the kidney stone from hell, fraught with complications and collateral damage 

May was a bit calmer, 

A birthday for me

What we thought was the last surgery to get rid 

of the kidney stone from hell

A rare evening of family fun 

feeling good and sharing smiles

June hosted the last day of 4th grade 

A fun week at Del Mar Beach, Camp Pendleton, California with my family who traveled from Arizona, Ohio and Alabama for a family reunion of sorts

A second trip to California to present the TouchStones-CHOC program at the Patient and Family Centered Care conference in Long Beach followed by the chance to catch up over drinks with one of Jack's former docs who now lives and practices in LA. 

And best of all, watching my once-terrified-of-the-water kid participate in summer swim meets

July hinted at what was coming with another hospital admission and a reminder of why I insisted on a PICU admission for Jack back in April.  

The month wasn't all bad and included a trip to the ball park with my sisters 

hiking in Northern Arizona

and the first day of 5th grade

August and September tortured us with 20 days of incarceration in the PICU at Phoenix Children's with a very sick and hurting Jack.  

Rubbing salt into the wounds was a missed Disney Half Marathon with Team Cure CMD.  













sidelined supporters.



October we hauled our weary selves 1500 miles to see doctors I trust and friends who love us.  It was an exceptionally tough week that brought disheartening news about Jack's heart and overall disease progression.  The bright side of our trip included a visit with Jack's first pediatrician and someone who stood by my side day in and day out during those many months Jack was in the PICU the first year of his life.  We also met up with Jack's former Phoenix physical therapist who we haven't seen in over six years. I was able to fit in dinner with a friend who was the owner of the nursing agency that cared for Jack the first three years of his life; dinner with three of Jack's former nurses (NICU, PICU and home care); lunch with Jack's neurologist; and an evening with friends who share a similar journey as ours.  We were welcomed again into the home of our friends David and Amy who, despite all the stuff we bring into their home, never make us feel like we are in the way or overstaying our welcome.  There were other friends to see and places to visit, but exhaustion and time limitations kept us from seeing everyone we wanted to see.  I try not to dwell on the fact that this trip was likely Jack's last trip to St. Louis.  Not necessarily because he won't be here to make the trip, but because of our shift in focus when it comes to Jack's care.  The trip was necessary and worthwhile, yet difficult in many ways.

our gracious host - happy to see Jack

nurses and friends

kindred spirits

Not to be forgotten, October also included a 22nd birthday for Hilary and a 23rd anniversary for me and Mark. 

celebrating on the road (on the way home from St. Louis).

November rang in a 14th birthday

We continued the quest to find the gene behind the disease as we shipped the blood that holds the key to the National Institutes of Health

and we celebrated family and a day to give thanks.

So far, December has been a month of relative calm and stability. (I should know better than to say that out loud, eh?)  I'm cautiously optimistic that it will be the first month since January that won't involve a visit to a hospital or doctor's office.  Jack has felt well enough to participate in a family Christmas card photo shoot.

And, he even tolerated an evening out with his sibs this weekend.  

December brings to close a year I'm all too happy to put behind me.  This year was hauntingly similar to Jack's first year of life.  Seeing my child in distress and not knowing why, the intensity of the PICU, too many doctors, lots of opinions, few answers, and too close to death for comfort.  But, we survived.  We survived because of the unwavering support of friends and family.  

So, I close out my 2012 recap with a huge THANK YOU to all of you who follow our journey, who offer words of support and encouragement from afar and who help in tangible ways from near.  Jack and I are blessed to be surrounded by the love of so many people.  We wish you all a ....

Merry Christmas

Happy Hanukkah

and

Happy Holidays

as the case may be!