Race Day

Eric had his first running club inter-district race today. It was a lot of fun and Eric did great. It was a two mile course and grades Kindergarten through 6th graders from about five different schools participated. They gave ribbons to the top five runners for each grade (boys and girls). Eric didn't finish in the top 5 for his grade, but he did well. Out of at least 500 runners (all grades) he finished #186. I think running is the perfect sport for Eric and I'm hopeful he'll stick with it.

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Pre-race 

READY

SET

GO!

I almost missed him in the pack of runners 

at the beginning of the race

Coming around the last corner towards the finish

(they ran through the neighborhood near the school that hosted the race)

Everyone was rewarded with a popsicle

Enjoying the popsicle and contemplating his race

Yummy, that was good!

"So, how'd you do?"

Extremes

As another weekend comes to an end, I am reminded - despite my previous post - that sometimes, silence is golden. God blessed me with one child who does not speak and another child who does not stop talking! Such is my life .... a life of extremes.

Thank you all for your sweet comments.

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I was uploading all my pictures to my Mobileme gallery this weekend and I came across these pictures. Here's trouble and cuteness at its best.

Circa 2003

They grow up all too fast, don't they?

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My life has a superb cast 
but I can't figure out the plot.  
~Ashleigh Brilliant


I second that!

He Can Only Look at Me

It's just before midnight and as I went in to check on Jack before calling it a night, I noticed his pulse-ox was off. Yikes! That could have been disastrous. I have no idea how it got turned off, but when I turned it back on, Jack's sats were lower than normal and his heart rate was higher than normal. Jack looks fine. His airway is clear when I suction him, so that's not the problem. I ask him "what's wrong?" "Do you hurt somewhere?"

All he can do is look at me with his soulful eyes. My eyes fill with tears. As my tears drop, his eyes look deeper into mine. What is he thinking? What would he say if he could? I cannot stand that my child cannot talk to me - especially when I know he has much to say.

Dr. M

No, I haven't dropped off the face of the earth, I've just been too tired to blog lately. Fact is, I'm tired a lot lately. When my head hits the pillow every night my body literally aches and it aches when I wake up in the morning. I'm not used to feeling this physically tired and I don't like it one bit. My age and Jack's size/condition have officially caught up with me and I'm not sure there is a solution to the "problem". I am trying to get more sleep (unfortunately, it's never uninterrupted sleep) and I'm trying to get back into an exercise routine. I'm hoping with more sleep and exercise I can overcome whatever is making me feel 88 instead of 48!

So now that you know why it's been more than a week since my last post ... on to the topic of this post.

Dr. M

Ever since Jack's discharge from St. Louis Children's Hospital PICU in June of 1999, I've kept in regular contact with six of the doctors who provided care to Jack during his stay (and after). One of these doctors is Dr. M. Upon entering the PICU on a cold January day eleven years ago, one of the first doctors we encountered was Dr. M - a cardiothoracic surgeon. Dr. M operated on Jack two times during his PICU stint - first to divide Jack's vascular ring (ironically, 11 years ago today) and two months later, to plicate Jack's right diaphragm - which was paralyzed as an unfortunate consequence of the surgery to divide the vascular ring. Dr. M was also kind enough to do Jack's muscle biopsy (bedside in the PICU). I say "nice enough" because typically, cardiothoracic surgeons don't do muscle biopsies. In Jack's early PICU days, I wasn't tuned in to hospital politics and knowing who does what and, more importantly, who doesn't do what. Did I already mention, cardiothoracic surgeons don't do muscle biopsies? They have more important surgeries on their schedules - like heart and lung transplants. However, being the naive person I was, when I heard neurology wanted a muscle biopsy, I decided right then and there it would be Dr. M. I knew Dr. M; I liked Dr. M; and Dr. M adored Jack. The PICU staff seemed a bit uncomfortable with my request for Dr. M, but they honored my request and forwarded it on to him. In retrospect, I vaguely remember Dr. M not really being that happy about doing the muscle biopsy (you could see a lot more of what was going on in the PICU back in those days because the "rooms" were only separated by curtains, which were usually open.) But, when Dr. M came over to Jack's bed to talk with me, he said "yes" he would be happy to do the muscle biopsy (he really wasn't!)

The weeks following Jack's trach surgery (and no, I didn't ask Dr. M to do the trach surgery), I kept telling everyone that "I can't do this" and "I don't want to do this". Dr. M told me that if I didn't want to take Jack home, he would! I think he was serious. Dr. M really did adore Jack and I was told that when Dr. M arrived in the PICU every morning, he'd stop by Jack's bed first to get his morning smile.

Dr. M is one of the very special doctors who has helped carry me through the last eleven years because he truly cares. I know I harp a lot about doctors who care. However, when you are the parent of a chronically ill child, having doctors who care makes all the difference in the world. My personality needs to know that doctors care and because I've had the privilege of dealing with some genuinely caring doctors, I have zero tolerance for doctors who don't care. It doesn't matter how skilled a doctor is, if he doesn't show that he cares about Jack as a human being, I'm done with him (or her). The primary reason we travel 3000 miles every other year is to have Jack seen by doctors who care.

Dr. M cares.

Here is what Dr. M wrote in Jack's book that was signed by the PICU staff before he was discharged:

Jack,

Over the past 6 months, I've had a chance to get to know you inside and out -- all you have to show for it is a few scars! What I have to show for it is good memories of a handsome little boy with a wonderful family. My biggest wish for you is that you have a long, healthy life filled with love and happiness.

Dr. M

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Here's a letter I received from Dr. M after sending him a picture of Jack back in 2000:

Dear Ann,

Thank you very much for the absolutely fantastic picture that I received of Jack. You really know how to make someone's day. It was wonderful to see you and Jack recently outside the Intensive Care Unit and, needless to say, despite all of his circumstances, Jack is growing up to be an incredible young man. As I know is the case with you, I very much look forward to the day when I can see you and Jack bopping around with no ventilator attached.

Thank you so much, once again, for the beautiful picture and thoughtful gesture. I wholeheartedly welcome any such updates in the future as you are so inclined.

Dr. M

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Of all Jack's doctors I've kept in touch with over the years, Dr. M hears from me the least. I don't have the same rapport with him that I do with Jack's other doctors. But, I do send him an email update on Jack at least once a year. I sent my most recent Jack update to Dr. M about a week ago. Today, I received his email response. Please know that I share the following not because of what it says about me, but because it was said. I share it not as a reflection of me, but as a reflection of Dr. M.

Ann,

Thank you for the update -- it is very thoughtful of you to somehow find the time amidst your daily juggling act to craft such a nice note. You haven't changed a bit and Jack has really grown up. I immensely respect the way in which you have truly devoted yourself and obviously made sacrifices too numerous to count in order to provide an extremely high quality of life for Jack. It is a very touching story and you have demonstrated a strength that I am certain most others could not if they were under similar circumstances. A hug to Jack from me.

Warm regards.

Dr. M

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As I lay my tired body down tonight and hope for a minimally interrupted night of sleep, I will feel at peace . . . because Dr. M cares.

Dr. M and Jack circa June 1999

My Son

It's been awhile since I've put together a video of Jack. I've been wanting to use my new camera lens to take some pictures of Jack - pictures that document how he is affected by his disease. I decided to take the pictures and put them to a song that always makes me think of Jack when I hear it (and always moves me to tears). The end result is the video below. I don't intend for this to be sad . . . I only seek to tell his story.

The Mundane

I promised a weekly update and I've come up with nothing particularly interesting or profound to write about, so you get the mundane of every day life.

After a relatively short Christmas break, Hilary headed back to RIT on Monday.  She left sunny skies and 75 degree weather and now finds herself in 20 degrees and snow, snow and more snow.  She doesn't seem to mind though. Fortunately, she didn't have any flight delays on the way back to school.  Southwest has a direct flight to Buffalo and then I have a taxi service pick her up and drive her the hour or so to Rochester. She's a bit spoiled getting door to door service, but what the heck, you only get to spoil your kids for so long and then the real world steps in and socks it to 'em. Besides, it cuts down on the parent being 2000 miles away worry factor too.

Mary started back to school on Tuesday and then proceeded to be out Wednesday and today because she was sick. I'm not sure what it was (mainly just a fever), but she appears to be better today and will now have to play catch-up over the weekend.  Her hours have been cut significantly at Target now that the holiday season is over and I'm happy about that because school comes first.

Jack made his first visit in over a year to the pediatrician's office last week for an ear infection. Jack has chronic yucky drainage from his ears and I'm never too alarmed by it, but last week he was crying when we touched his ear.  If there is one thing  -- and it's about the only thing -- that will persuade me to take Jack to a doctor, it's pain.  When he's in pain, I react.  He had both an outer and an inner ear infection, but after a week of antibiotics he's feeling much better and is back to his happy self.

After being remiss about Jack's wheelchair for too long, I finally had someone to come to the house today to talk about some modifications we need.  The guy had some good ideas and in a few months Jack will be sporting a much more comfortable wheelchair.  He'll have the same chair, but with some modifications.  He's getting lambswool pads for his foot rests and his arm rests, a new headrest and a nicer, thicker seat.  A couple modifications are for me -- a higher handlebar so I don't look like the Hunchback of Notre Dame when I take him for walks and also a tray for his vent.  I'm excited for the new and improved chair.  It really is the little things, eh?

Eric likewise started back to school this week and the complaining has begun.  The kid complains that I wake him up too early in the morning and he complains that he has to go to bed too early at night.  He's not getting the connection! The homework challenge is also back in full force.  He can take a 15 minute homework project and turn it into a 2 hour project.  He pushes the patience button to the limit and beyond. We are seriously considering hiring a high school kid to come to the house a few days a week to work with Eric on his homework. I think 99.9% of Eric's issue with homework is a child-(attempting) parent control thing. If we bring in a third party to just get the job done, it might prevent bloodshed at the Schrooten house.  We'll see.

I didn't remember that Eric had running club today, so he didn't dress for the occasion. Mark sent me a text to let me know that Eric had running club and that he was running in his crocs.  Picture in your mind a kid running around a track in green crocs and no socks.  Nice. "Yes, that's my kid. Why do you ask?"

In other mundane news, after living in this house for over 6 years, I've decided it's finally time to get some window coverings up.  My sister Maureen was the one in our family who was born with the home decorating gene, so she's helping me put something together.  I bought the fabric last weekend. If all goes well, I'll have some color added to my windows by the end of the weekend.  If not by this weekend ... next.

Well, friends .... that's all I've got! Have a great weekend y'all.

Happy New Year

Happy 2010!

It's amazing how fast this last decade has passed.  The changes in my life the last ten years have been profound and unimaginable.  I can honestly say, in spite of all the difficult times, I have been very blessed.  What I have gained the last ten years far exceeds what has been lost and I have much to be thankful for.

We had a fun Christmas and I think it's safe to say that everyone was happy at the end of the day.  I am always emotional (fluctuating between being angry (resentful) and being sad) during the holidays, but I too managed to end Christmas day on a happy note thanks to an absolutely hilarious game of "Apples to Apples" played with husband, kids, sisters, nieces, nephews, and brother-in-law.  Eric was a hoot and managed to keep up with the adults and big kids without a problem.  (If you haven't played Apples to Apples, I highly recommend it as a fun, family game.)

Thanks to the suggestion of my friend Karen, Jack got the most awesome Christmas present this year.  It's a laser light projector that projects real life stars and clouds on the ceiling.  It's amazing! I took pictures, but they don't begin to do justice to the "wow" factor of the star show projected on Jack's ceiling. There are even shooting stars .... very cool.

Jack's "before" ceiling

Lights off .... the stars and clouds

(I had to use a different lens get a picture in the dark, so they are close up pictures that focus mainly on the ceiling fan. However, the star "show" covers his entire ceiling)

Mary on Christmas morning -

very happy with her "loot"

We've seen very little of Mary over the Christmas break because she has been working long hours at Target.  She really likes the job and the people she's met and she really likes the money she's earning! She hasn't had much of a break before heading back to school next week.

Christmas and cousins ... always a fun time!

Should I be worried that Eric's new favorite movies are The Three Stooges?  He spent most of the last week plopped on the couch watching Three Stooges DVDs

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As we close out the last decade I can't help but think of where I started and where I am today.  Ten years ago, I was at home in St. Louis anxiously waiting for the clock to strike midnight, wondering (given all the Y2K hype) whether Jack's vent was going to spontaneously combust at 12:01am.  As we all know, the hype was just that!

I entered the new millennium as a mom of this special little boy . . .

 . . . who was filled with so much hope and determination that "this" was all temporary and would be overcome so that we could get on with life as planned.

Today, I enter this new decade as a mom of this special young man . . .

. . .  who no longer hopes for things to be different, but who has been enriched beyond measure in ways too numerous to list.

I approach the next decade with both anticipation and apprehension.  The toll Jack's disease is taking on his body becomes more evident every day.  Jack's time on this earth is limited (well, all our time on earth is limited, but you know what I mean). Yet, Jack remains healthy from a respiratory and cardio standpoint and that bodes well for the present.

I approach the next year with lots of plans and hopes for Jack's continued health.  Hard as it is to believe,  I will be making appointments in a few months for our next biennial trip to St. Louis in the Fall.  Mary and I will be traveling to St. Louis over Spring break to look at colleges. She is bound and determined to make her way back to St. Louis - a place she's never forgiven us for taking her away from. I also hope to spend time with many of my friends scattered across the country and I have a few out of town weekends in the plans.  With the trip to St. Louis, I'm not sure we'll fit in a family vacation this next year, but a weekend trip to California (Lego Land) is in the plans for Mark and Eric. It looks to be another year where everyone is going in different directions, but it's all good.

I'm finding it harder to blog these days even though there's much I could share.  By the time I have the opportunity to sit down and write, it's late (for example, it's 1:47am right now) and lately, I've been choosing sleep over blogging.  I hope to continue to update at least once a week, but I can't make any promises beyond that.  Thank you all who follow our journey and who truly care about Jack and our family.

Happy New Year my friends!