Monday, October 31, 2011

LA Half

Despite my lack of training, I finished the Los Angeles 1/2 marathon and I wasn't the last one across the finish line. Yay!  It was a lot of fun, especially because it was Halloween weekend and there were a lot of crazy costumes amongst the runners.  There was a group of Elvis runners pushing jogging strollers holding ice chests full of beer.  They were drinking while they were running.  I'm really not sure how they finished the race and they even finished in front of me! (should I admit that?)

Pre-race pictures
Downtown LA

Part of our Cure CMD team

I don't have any post-race pictures and if I did, I doubt I'd share them. :)  I did something to my foot this race - when I took my shoe off after the race it was swollen, red and painful on the top (and still is today).  Based on my Google diagnosis, I think I might have a stress fracture.  I'm not sure whether I need to have it seen by an orthopedic doc or not.  I guess I'll wait a few days and see if it improves.  Whatever the issue is, it better resolve by January because I have another half marathon to walk!


Eric went trick-or-treating with one of his friends from school.  You can guess who is who.  

Jack's birthday is Friday.  So many thoughts and ideas in my head ... transforming them into something I can share with you will be the challenge.  As all my special needs moms know, birthdays are so, so bittersweet.  Stay tuned.

Sunday, October 23, 2011

Just Pictures

Have a fabulous week! 

Wednesday, October 19, 2011


We are home and settled back into the routine of every day life.  Most importantly, we are home where we have help with Jack.  I don't want to harp too much on how truly exhausting it is to travel 3000 miles with a ventilator dependent, essentially quadriplegic, almost thirteen year old, eighty pound child because the fact is - I choose to travel to St. Louis - I'm not required to travel there.  But, I don't think it's possible for most people to really understand the amount of physical work involved in traveling half way across country with Jack.  Jack does not travel in his wheelchair, he sits in one of the captain's seats in the van.  Therefore, when we stop for the night at a hotel, Mark has to lift Jack out of the seat and carry him out of the van, the whole time Jack is disconnected from his vent and I'm right there assisting with the transfer and hooking Jack up to his other vent once he is in his wheelchair.  This lifting of Jack alone is back-breaking.  Add to that the unloading and loading of his equipment and supplies - which requires two trips with a fully loaded hotel dolly.  I counted that on this trip - because we did it over three days each way and we also had a minor delay due to car trouble which required an additional, temporary hotel stop - we loaded and unloaded Jack and all his stuff 14 times!   I need to get a video of the loading and unloading process just to give you an idea of all that is involved. Mark says we look like a traveling circus.

I'll also not complain too much about having to provide all of Jack's care 24/7 for 10 days straight with no help because I know some of you who read my blog don't have nursing help and you provide all your child's care all the time.  However, I can tell you - I could never be Jack's full-time caregiver.  I'd be dead by now. Seriously.

My whole point being that even though I took a trip to St. Louis and I was away from the office for six days, I was NOT on a VACATION people!  (what I want to scream when people ask me how my "vacation" was.)

In any event, we made it home safe and sound, Jack is well and Mark and I are slowly recovering.  It takes us about a year to recover and erase from our memory the hell of this trip.  Just in time to do it all over again! :)

Okay, so we did have one "fun" day. The last day in St. Louis, the weather was beautiful, so Mark and I decided to take Jack to the St. Louis Zoo.  Jack didn't really enjoy it too much because it was windy and he was probably still recovering from the prior day's eye surgery.  Oh well, we made a valiant effort at trying to have some fun with Jack while in St. Louis.

Mark's awesome picture of us on the Merry-Go-Round. Granted, he was trying to get a picture of a moving target.

Lots going on over the next few weeks.  I'm walking the LA 1/2 in less than two weeks and I haven't trained one bit for the walk.  Not sure what I was thinking agreeing to do this knowing that I haven't trained like I did last year.  Then again, I'm only walking it - I'm not running it.  But, there is still a time limit, so I do have to walk with some speed.  Wish me luck!  

Jack's 13th birthday is fast approaching.  So much I want to share, but finding the time to put my thoughts to words (and maybe a video) - therein lies the challenge.  Hopefully, I'll come up with something that does justice to his reaching the milestone of being a teenager.  (can you believe that?!)

Thanks for checking in my friends.  Have a fabulous rest of the week! 

Friday, October 14, 2011

A Story of Compassion

Yesterday, I had a lunch date with Jack's neurologist. I'm fortunate that every year when we come out to St. Louis, she takes time out of her busy schedule to meet me for lunch.  She was seeing patients in the "Center for Advanced Medicine" ("CAM") building and Jack and I went there to meet up with her after she finished. Housed in the CAM building is the Siteman Cancer Center, a non-pediatric cancer center.  The CAM building is a large, modern, glass building with a huge lobby - it looks like a hotel lobby with a valet counter, information center, coffee bar and even a piano where a woman was playing music along with an older gentleman who was belting out "Danny Boy" as everyone milled about the lobby.  Jack and I had to wait awhile for Dr. C to finish seeing her patients and as I was sitting there, I did a lot of people watching.  I saw tired eyes and weary bodies of people being pushed in wheelchairs by husbands, wives, daughters, and sons because they were too weak to walk. There were people walking with canes, people carrying oxygen tanks and people who were obviously in the throws of cancer treatment.  My eye caught a man who was, I'd guess, to be in his mid to late 40s.  He was being pushed in a wheelchair by who I assume was his father.  It was obvious that he had some type of cancer of the jaw, neck or throat because of the incisions on his face.  He had a trach and sitting in his lap was a suction machine.  His eyes looked sad and distant.  However, as his father wheeled him past Jack - the man looked at Jack and then crossed his arms on his chest to show the sign for "love".  It was such a simple, yet profound gesture.  A gesture of compassion that required no words.  What an amazing way to end our week at SLCH - to experience the kindness of that man who felt a special connection to Jack and who showed love in the mist of his own suffering.  It was a very touching and memorable moment.

Wednesday, October 12, 2011

St. Louis

We arrived safe and sound in St. Louis on Monday.  It's been a fairly stress-free week being that we are only seeing one doctor this time around.  Jack had his eye surgery today and only one eye needed to have the laser procedure done to relieve the pressure.  The ophthalmologist did mention that it may be time for new lenses because he's grown and things have changed inside the eye.  We have a post-op appointment tomorrow and we'll talk about everything then.  I have a feeling these once a year trips to St. Louis (rather than every other year) are going to become the norm for us.  I can say with certainty that our next trip out here will be in a different vehicle.  It's just too much for Jack to sit in a seat for 8+ hours without the ability to change his position.  And, it's just too difficult for Mark to lift Jack in and out of the van anymore.  If only I were a rich man, then I'd buy me one of those houses on wheels and travel in luxury to St. Louis.  If only ....

Jack was very popular in Same Day Surgery today - lots of visitors stopped by to see Jack.  It's so nice that so many people remember Jack and stop by to visit with him and me.  I was also able to request - and get - my favorite anesthesiologist who is so good with Jack and who knows Jack very well.  I can't say enough how much I love St. Louis Children's Hospital.  Just walking around the Washington University Medical School/Children's Hospital campus is such a neat experience - the place just has the  feel of academia and excellent medical care!

Some pictures from our week so far ....

The view from the deck of our friends' house  

My handsome and happy Jack. 

Where I've eaten every day since we've been here 
(at least once a day, sometimes twice a day!)  

Definitely a place of "advanced medicine"

the place we come for

Friday, October 07, 2011

22 Years

Today Mark and I celebrate 22 years of marital bliss. Not bad considering that for 21 of those years we've been parents of children with special needs. Although, technically, we didn't find out Hilary was deaf until she was a year old. So, we always say, we had 2 "good" years of marriage.  The key to our lasting marriage - despite the overwhelming odds against it lasting - is HUMOR.  If nothing else, we both can still laugh.  And, anyone who knows Mark knows that he is darn funny.  He's quiet- but funny!  Little known fact - Mark was a theatre major in college.  He's a great actor with a great sense of humor. I've encouraged him to get back into acting by joining a community theater.  Unfortunately, his work schedule just doesn't allow it right now. But, maybe some day ....

The following pictures are really lousy for a couple of reasons.

1. They are old (22 years old, to be exact).
2.  We didn't have money to hire a professional photographer when we got married - so the quality is crappy to begin with.  But, I thought I'd share them anyway.

The priest in the left of the picture (who you can only partially see) married my mom and dad (and taught both my dad and me in high school). The other priest - he was also one of my high school teachers.  He was a friend of my dad's growing up and he said my mom's funeral.  He's awesome.  If all priests were like him, I might still be going to church.  (But, that's a whole other topic!) 

Time for me to shut down the computer and finish packing.  We're hitting the road tomorrow and 5am comes early.  

Wednesday, October 05, 2011

Aaaahhh . . .

So much to do and so little time.  T minus 2 days before we leave for St. Louis and I'm probably more ill prepared than I've ever been in the past. Part of me just doesn't want to go and the other part is really looking forward to seeing my St. Louis friends, savoring a pumpkin muffin from the St. Louis Bread Company (aka Panera), and breathing in some cool, crisp Fall weather.  But the laundry and packing that needs to be done in a short time frame has kicked the stress level up a notch.  If only that thing called a "job" didn't suck up all my time.  But, alas, whenever I feel overwhelmed with too many things to do, I just head over to my friend Christy's blog and she keeps me in check. (Christy is one crazy, busy lady and she still finds time to run marathons.  She's amazing!)

When given the choice of staying or going, Eric elected to not go with us to St. Louis.  It was a difficult call for him because he enjoys seeing Peggy, but in the end, he just couldn't face the three days in the car (each way).  We decided to make the trip over three days instead of the usual two days. It's just getting too much for Jack to tolerate 12+ hour days in the car.  We'll spend more days on the road (6) than in St. Louis (4), but we're hoping it will be a more enjoyable tolerable trip doing it at a slower pace.  We'll see.

Last Sunday, Hilary turned 21 years old.  Seriously, how is it possible that she is 21 years old?! She was just a baby, darnit!

If you recall, when I decided to re-enroll Jack in school, I took the position that I would keep my expectations low.  I have not been disappointed.  The first quarter of school is finished and Jack has received ZERO hours of the OT, speech and life skills/academics set out in his IEP - an IEP that was signed in early August.   At the end of the day, whether or not Jack goes to "school" will have no impact on his future and, for this reason, I try not to get too upset with the lack of compliance by the school district.  But, it's this lack of compliance that caused me walk away from the hassle of it all three years ago.  And, it also comes down to what is right and what is wrong and the actions of the school district are just wrong.  I could file a complaint with the Department of Education, they'd find the school district to be out of compliance with the IEP and mandate that the missed hours be made up.  However, I've been there, done that and you see how much of an impact it had on the school.  At this point, I'm just not sure if I'm ready to play hardball or say WTF.

Adding insult to the injury, I received this in the mail today:

Jack's very first report card.  First of all -- I still can't wrap my head around the fact that Jack is in 7th grade!  I've never met the "Counselor" and I have no idea what "P" means.  "Pass"?  I really didn't need to receive this report card. It contains absolutely no meaningful information and it's just a reality check that makes me sad. Pfft...

Anyway .... I'll do my best to update our travels to St. Louis. Thanks for checking in.