Gratitudes

A wife who remains ever-faithful and strong in sickness instead of health.

Children who can't wait to ride bikes, climb trees and run around with their Daddy.

58 birthday cards (and five dozen holy cookies) awaiting our daughter on her birthday.

Family driving six hours to celebrate Thanksgiving with us.

140 financial donors giving over $27,000 to support our family.

A second city that we know like home.

Reconnecting with dear friends and their growing families that time and distance had nudged away.

Texts, emails, phone calls or Facebook PMs just to say "Hi" (even if they aren't always returned).

Two faith communities where we belong and are supported. 

A reading group (Russian literature, Dostoevsky) that is stretching me cognitively, emotionally and spiritually.

A career and an employer that allow me the dignity of meaningful work away from home.

Insurance that covers quite a bit of my care and (so far) has treated me like a person and a patient more than a number and an actuarial statistic.

Skilled and caring professions making medical miracles every day.

14,013 organ donors and families that gave the gift of life last year.

A generous person and family who may be making that decision right now.

One breath,

then another,

another,

and another.

Happy Birthday, Dear Adah!

Congratulations, Good Luck & Thank You, St. Xavier XC

Congratulations to the St. Xavier cross country team who won their second straight Ohio state championship on November 2nd.

Two weeks later they competed at the Midwest regional meet and finished runners up against the best competition from Illinois, Indiana, Ohio, Michigan and Missouri.  Senior Evan Stifel broke away from a pack filled with individual state champions to capture one of his very first individual victories!

Apart from their exploits on the cross country course, the St. Xavier runners, coaches, alumni and parents have been very generous in their support for us.  Between several fund-raisers and numerous individual gifts, St. Xavier cross country has supported us with almost $1600.  They even outfitted me with some new work-out gear.

All the best to the team as they head to Portland next weekend and try to best last year's ninth place finish at Nationals.  

Look who’s turning FIVE on November 24th!

This girl is strong, funny, precocious, intelligent and generally a sweet girl.  Adah was born with a strong personality and knows what she wants.  We are so proud of the little person she is becoming and are confident that she is going to be a very successful adult.
 

She has been a trooper throughout this process and in many ways has had to deal with more change than the rest of our family.  We have asked her to grow up a little quicker, be a little bit more patient, and be open to LOTS of different people swooping in to take care of her and her brother.  When we decided we needed to make the move to St. Louis we took her from a preschool she loved and where she had already made close friends - a place where she would be in school for three, half-days and home with mom and grandparents the rest of the week. 

Then we moved here and started her in a new school with new rules, new kids, uniforms, and five full days!  She struggled the first month: each day upset, refusing to get dressed, refusing to eat breakfast and I had to physically peel her off of me when I dropped her off.  However, for the past few weeks she has had a real turn around, enjoys school, knows LOTS of the students from all different grades and classes.  We got a great report from her teacher. She seems to be doing REALLY well and one day even requested to stay at school instead of coming home at the end of the day.  Now if we could just see that angelic behavior at home!

So in short Adah has had to deal with so much more than many people have had to deal with in their first two decades of life.  I know that she will continue to be strong and will triumph through more trials in her life.  I also know that she and I will have to be good buddies as we get through this life that we share.  As she grows I continue to reflect on that and work hard to keep all of this in perspective, especially when she struggles with her “listening skills.” 

So as she nears her fifth birthday away from home I would love for our mail box to be flooded with birthday cards so she feels all that love that we know you have for her.  

Here is our address if you don’t already have it - if you have a few minutes to send JUST a card for her birthday. 

4401 Chouteau Ave. #2110

St. Louis MO 63110

Thank you all in advance. 
 

Cucullus non facit monachum

Whenever we find ourselves on or around a college campus, Eileen and I like to ask each other if we could still pass for traditional undergrads - or at least for graduate students.  (Admittedly the game works best when we don't have children in tow). 

Lately, I've been spending a lot time around Washington University's Medical Campus as it adjoins Barnes Jewish Hospital.  A few weeks ago, a gaggle of young female students passed me, and a couple of them offered a brief, deflected glance and smile in my direction.  Whether med students, DPTs, or future pharmacists, I thought to myself "Yes! I still have 'it.'"

Tonight I pulled into a handicapped parking space at the grocery store and walked towards the entrance without my oxygen on.  Although my tank had run out earlier in the day, going sans-cannula is not unusual when I shop because a) I prefer not to draw attention and b) between a slow pace and the shopping cart to lean on, my oxygen levels stay pretty high.

As I walked toward the automatic doors I noticed a woman sitting in a motorized cart shaking her head in my direction.  I guess my label "End-stage, Obstructive Lung Disease; FEV1 18%; Lung Transplant Waiting List" wasn't big enough for her to read.  I just looked the other way, but even if I had looked long enough, I wouldn't have been able to see her label either (Congestive Heart Failure, Rheumatoid Arthritis, Type I Diabetes, or something else).

Before moving to St. Louis I had the chance to be interviewed by the local news about the issue of limited handicapped parking spaces, abuse of those spaces, looks and appearances.  You can watch it here:


Bringing three bags of groceries in to the apartment tonight took me 20 minutes - changing my oxygen tank, grabbing our little blue wagon, carting it back and forth, and resting a few times in between.  Sometimes I wear the hood of my illness pretty well, but when I don't have to, I try not to.

After the chance encounter with those students on Euclid Avenue near Wash U., my ego spent a few minutes absorbed in itself (and my boyish good looks).  As I passed into the glass-lined  Barnes North Garage elevator I caught my reflection and realized it was just as likely the oxygen tube that had drawn devotion's visage.
  

Katie Mosher Wright Update

Thanks for all those who offered up their prayers. My sister Katie's thyroid surgery was successful and she is healing well. She begins radioactive iodine treatments in a couple of weeks, but the prognosis is for a full, cancer-free recovery.

Katie with her favorite niece and nephew visiting in St. Louis the day before surgery.

 

Born to Run

I have had a lot of running on my mind lately. Here is a glimpse into that stream of consciousness.
 
Two weeks ago Eileen won the St. Louis Second Wind Women’s 5k - her second top-two finish since moving to St. Louis!
 
The St. Louis Rock n’ Roll Marathon was on Sunday and we enjoyed dining with and cheering on some friends from Cincinnati.
 
St. Xavier’s ever-supportive Cross Country team aims for its second consecutive and fifth Ohio State Championship this Saturday. (Exactly fifteen years since the St. Xavier Harriers’ first state title – my senior season).
 
Driving through Forest Park this afternoon, Eileen and I were admiring the very same resplendent sugar maples, sweet gums and gingkoes that used to carpet and cushion our SLU season-end stride-outs in crimsons, auburns and golds.

Last Sunday’s scriptures even came from the second letter to Timothy 4:7 “I have competed well; I have finished the race; I have kept the faith.”
 
As someone who ran and trained competitively for nearly a third of my life, running was part of my identity, my philosophy, my worldview, my faith. And in some ways it still is.
 
Running was one of the first ways this lung disease manifested itself, first in slower times, then diminished endurance, then a realization that something about my running was just not right or fun anymore. Losing my competitive edge, preferred stress reliever and even my identity as “a runner” was a cyclical unwinding that still isn’t fair.
 
But even as I can’t justify calling myself “a runner” there are aspects of that identity that I still maintain.
 
I have long found that my rate of perceived exertion or RPE (a subjective measure of one’s workload and breathlessness) is an unusually unreliable surrogate for objective measures of my oxygen saturation - a pattern I attribute to a long-trained “comfort” with and tolerance to shortness of breath.
 
After several weeks of pulmonary rehab I keep pushing the envelope as far as my heart and lungs will allow. So far my PR is 1.91 miles in 30 minutes on the treadmill. I hope to eclipse two miles soon, even though I’m quite the sight to see motoring through 15.5-minute miles with seven or eight liters of oxygen flooding my lungs and irritating my nasal passages every minute.

In some ways it feels like I just may have been training for this transplant all my life.
 
Last Fall, laying on a stretcher at our curb, fading out of consciousness, my last recollection is telling Eileen I loved her and hearing her tell me not to give up as the ambulance doors slammed shut. Like the cross-country runner who crosses the line not quite remembering the last quarter-mile of his race and whether it was his legs or his mind that willed him to the finish, I “came to” in an emergency room bay, gasping, cursing, and exhausted like I had never known, but relieved and satisfied that I had successfully finished that leg of this race for my life.
 
The Mount St. Joseph newspaper, Dateline, wrote a nice story about me a few weeks ago. The student author asked me about the role and strength of my faith through this transplant process. Paradoxically, the more one leans on their faith the harder it seems (to me) to answer such a question in a mere sound bite, quote, or even a single blog post.

While I didn’t think about it until after the article was published, I decided that the clothes bin under my bed could serve as a metaphor for my faith. That bin is stuffed full of my old running gear – racing jerseys, dry-fit shorts, racing flats, even some old track spikes. While I’ve thinned out other clothes for style, fit, or space, I haven’t been able to bring myself to get rid of that running gear. Something in the back of my mind tells me that I’m not quite done with it, I’ll want it, need it later.
 
Timothy Sweeney is a New York-Presbyterian/Columbia University double-lung recipient who ran the 2010 New York City Marathon with his transplant surgeon less than one year after his transplant. (The 43rd NYC Marathon takes place on Sunday after a year-long hiatus following Sandy).



Maybe I’ll run the 44th NYC, the 17th Flying Pig or next year’s St. Louis Rock n’ Roll marathon.

Maybe it is more accurate to say that this transplant process is just training for the rest of my life.