Saturday, December 30, 2006

A Christmas to Remember

We've had a week of sharing memories, laughter, good times and ..... the FLU! Yep, the flu bug in spreading through my house like wildfire right now. So far, four of us have been "hit" -- including me, the one who "never" gets sick. Ugh! I was out of commission for 24 hours, but am fine today. Hopefully those in my family who have to travel back home on Tuesday get it asap or not at all as I can't imagine flying and being this sick. Jack is quarantined in his bedroom to keep him "safe". Oh well, I think for the most part everyone is having a good time.

Happy New Year to you all!

Wednesday, December 27, 2006

What a Group!

Jack and his cousin Jackilyn. Jack isn't too sure about sharing the ride!
This picture doesn't even include everyone who was at the house tonight.

Today was our big get together - all my brothers and sisters are now in town and we got together with our aunt and cousins (and their significant others and kids). It was absolute insanity at my house for about 4 hours. If I counted correctly, there were 46 people here - we almost needed to rent a banquet hall. Tomorrow is our "formal" family picture day ... and the fun continues.

Monday, December 25, 2006

Just some pics

My niece Shannon (Christmas Eve)
Eric got his bugs!
My nephew Joey with nieces Jackilyn and Jordan
My silly niece Kelsey with Mary relaxing before dinner
My sisters, Cecelia, Maureen and Joan and me
Jack, Mary and my niece Bridget
All of us watching old home movies -- good thing I have a big couch!

Eric after a long day.

Sunday, December 24, 2006

Twas the Night Before Christmas


Twas the night before Christmas ... the abbreviated version. Hope Santa is good to you all!

Love,
The Schrootens

p.s. Eric is not nestled all snug in his bed, he is in a sleeping bag on the floor in our bedroom!

Saturday, December 23, 2006

Hustle and Bustle

The hustle and bustle of the holidays is upon us. My sister and her family arrived from New Jersey yesterday and we've been hitting the stores ... we even braved Costco today! Last night we started watching old 8mm movies of us when we were kids. My grandfather was a camera buff and we have over 10 years worth of film (circa 1961 forward). It was fun for us, but I think our own kids enjoyed it more seeing their parents as babies and little kids. My mom had 5 kids in 6 years, yet she always seemed to have a smile on her face . . . no doubt she was just faking it for the camera! Jack was laughing quite hard -- not sure he knew what he was laughing at, but he always likes to join in with the laughing. It's just so nice that he can be out of bed and in the family room with the rest of us. My brother from North Carolina arrives tomorrow with his family and my other brother arrives from Ohio with his four kids on the 26th. I'll try and take pictures throughout the next few days to share.

Wishing you all a peaceful Christmas with family and friends.

Tuesday, December 19, 2006

Christmas Past









I had fun going through our pictures from Christmases past. Thought I'd share those from the year Jack was born through 2005. I hope to get a 2006 picture soon. I'm not sure why one year I only have a picture of Jack and not the girls.

(p.s. if you need a few minutes of some downtime - click on the link to the dash movie I recently added to my links. It's very relaxing. But if you are an impatient person ... it might move a bit too slow for you (a few people come to mind ;-)

Sunday, December 17, 2006

Weekend Fun

The kids had fun decorating cookies today with their friend Sara. Jack enjoyed watching all the activity and continues to do awesome in his chair. The last picture is of Jack this evening after a much needed haircut. He was really starting to look like a hippee! We are so thankful for our friend Michelle who comes to the house to cut Jack's hair. She is a very special person.

Have a great week!



Friday, December 15, 2006

The Lists

It's a little over a week before Christmas and I just looked over my kids' Christmas lists last night. Oh, what happened to Barbie dolls, play houses and bicycles? Now it's Wiis, iPods, cell phones and clothes. Ah, but there is that little boy of mine whose only request is a "bug collection" (which no doubt will be the most difficult gift to find!) Then there's Jack ... no list, no requests. A child who only gives each and every day ... through his smile, his sparkling eyes and his simplicity. A child who's on top of the world just to be sitting in his wheelchair. How interesting it is to experience the Season through the eyes of four unique little persons, who are at such different places in life.

We have so much to do this weekend to get ready for the 8 extra people who will be staying with us for Christmas. There's cleaning to do, cookies to bake, shopping to complete, packages to wrap ... and a whole lot more.

Enjoy your weekend ... I know I will!

Happy Hanukkah to my friends who celebrate this "Festival of Lights" holiday.

Wednesday, December 13, 2006

Look at the View

I found this on another webpage. It's a bit long, but well worth the read. As someone who spends entirely too much time at work, this definitely hit home for me and I'm determined to spend more time looking at the view this coming year.

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Anna Quindlen's Commencement Speech at Villanova

It's a great honor for me to be the third member of my family to receive an honorary doctorate from this great university. It's an honor to follow my great-uncle Jim, who was a gifted physician, and my Uncle Jack, who is a remarkable businessman. Both of them could have told you something important about their professions, about medicine or commerce.

I have no specialized field of interest or expertise, which puts me at a disadvantage, talking to you today. I'm a novelist. My work is human nature. Real life is all I know. Don't ever confuse the two, your life and your work. The second is only part of the first. Don't ever forget what a friend once wrote Senator Paul Tsongas when the senator decided not to run for re-election because he'd been diagnosed with cancer: "No man ever said on his deathbed I wish I had spent more time in the office." Don't ever forget the words my father sent me on a postcard last year: "If you win the rat race, you're still a rat." Or what John Lennon wrote before he was gunned down in the driveway of the Dakota: "Life is what happens while you are busy making other plans.”

You walk out of here this afternoon with only one thing that no one else has. There will be hundreds of people out there with your same degree; there will be thousands of people doing what you want to do for a living. But you will be the only person alive who has sole custody of your life. Your particular life. Your entire life. Not just your life at a desk, or your life on a bus, or in a car, or at the computer. Not just the life of your mind, but the life of your heart. Not just your bank account, but your soul. People don't talk about the soul very much anymore. It's so much easier to write a resume than to craft a spirit. But a resume is a cold comfort on a winter night, or when you're sad, or broke, or lonely, or when you've gotten back the test results and they're not so good.

Here is my resume: I am a good mother to three children. I have tried never to let my profession stand in the way of being a good parent. I no longer consider myself the center of the universe. I show up. I listen. I try to laugh. I am a good friend to my husband. I have tried to make marriage vows mean what they say. I am a good friend to my friends, and they to me. Without them, there would be nothing to say to you today, because I would be a cardboard cutout. But I call them on the phone, and I meet them for lunch. I show up. I listen. I try to laugh. I would be rotten, or at best mediocre at my job, if those other things were not true.

You cannot be really first rate at your work if your work is all you are. So here's what I wanted to tell you today: get a life. A real life, not manic pursuit of the next promotion, the bigger paycheck, the larger house. Do you think you'd care so very much about those things if you blew an aneurysm one afternoon, or found a lump in your breast?

Get a life in which you notice the smell of salt water pushing itself on breeze over Seaside Heights, a life in which you stop and watch how a red tailed hawk circles over the water gap or the way a baby scowls with concentration when she tries to pick up a Cheerio with her thumb and first finger.

Get a life in which you are not alone. Find people you love, and who love you. And remember that love is not leisure, it is work. Each time you look at your diploma, remember that you are still a student, learning how to best treasure your connection to others. Pick up the phone. Send an e-mail. Write a letter. Kiss your Mom. Hug your Dad.

Get a life in which you are generous. Look around at the azaleas in the suburban neighborhood where you grew up; look at a full moon hanging, silver in a black, black sky on a cold night. And realize that life is the best thing ever, and that you have no business taking it for granted. Care so deeply about its goodness that you want to spread it around. Take money you would have spent on beers and give it to charity. Work in a soup kitchen. Be a big brother or sister. All of you want to do well. But if you do not do good, too, then doing well will never be enough.

It is so easy to waste our lives: our days, our hours, our minutes. It is so easy to take for granted the color of the azaleas, the sheen of the limestone on Fifth Avenue, the color of our kids eyes, the way the melody in a symphony rises and falls and disappears and rises again. It is so easy to exist instead of live.

I learned to live many years ago. Something really, really bad happened to me, something that changed my life in ways that, if I had my druthers, it would never have been changed at all. And what I learned from it is what, today, seems to be the hardest lesson of all. I learned to love the journey, not the destination. I learned that it is not a dress rehearsal, and that today is the only guarantee you get. I learned to look at all the good in the world and to try to give some of it back because I believed in it completely and utterly. And I tried to do that, in part, by telling others what I had learned. By telling them this: Consider the lilies of the field. Look at the fuzz on a baby's ear. Read in the backyard with the sun on your face. Learn to be happy. And think of life as a terminal illness because if you do you will live it with joy and passion, as it ought to be lived.

Well, you can learn all those things, out there, if you get a real life, a full life, a professional life, yes, but another life, too, a life of love and laughs and a connection to other human beings. Just keep your eyes and ears open. Here you could learn in the classroom. There the classroom is everywhere. The exam comes at the very end. No man ever said on his deathbed I wish I had spent more time at the office. I found one of my best teachers on the boardwalk at Coney Island maybe 15 years ago. It was December, and I was doing a story about how the homeless survive in the winter months. He and I sat on the edge of the wooden supports, dangling our feet over the side, and he told me about his schedule, panhandling the boulevard when the summer crowds were gone, sleeping in a church when the temperature went below freezing, hiding from the police amidst the Tilt a Whirl and the Cyclone and some of the other seasonal rides. But he told me that most of the time he stayed on the boardwalk, facing the water, just the way we were sitting now even when it got cold and he had to wear his newspapers after he read them. And I asked him why. Why didn't he go to one of the shelters? Why didn't he check himself into the hospital for detox? And he just stared out at the ocean and said, "Look at the view, young lady. Look at the view." And every day, in some little way, I try to do what he said. I try to look at the view. And that's the last thing I have to tell you today, words of wisdom from a man with not a dime in his pocket, no place to go, nowhere to be. Look at the view. You'll never be disappointed. - Anna Quindlen

Sunday, December 10, 2006

Loving it!

BEFORE
AFTER
CRAZY BOY



Jack is doing well and is lovin’ being up in his wheelchair. He is up to 3+ hours at a time. Both times this weekend when we moved him from his chair back into bed, he cried and I thought maybe he was hurting. However, tonight I asked him if he wanted back in his wheelchair and he immediately stopped crying and got a smile on his face! I think it's much more than just being up in his chair, it's also the fact that we wheel him all around the house and outside and he really likes the change of view. Poor kid, he hates being confined to bed more than I imagined. You can really see how much taller he is and how broad his shoulders are by comparing the before and after picture. (okay, so the STL surgeon does deserve credit for doing a good job, even if he is not the most likeable guy). You can also see why his scoliosis was called a "collapsing" scoliosis. It makes me sad because it's obvious Jack would have been a good size kid and no doubt a heck of an athlete if he hadn't been born with his disease.

The last picture is of Eric wishing for "winter”?! He got out of the bathtub this morning and came downstairs with only his mittens on (thus the reason for only the waist up picture). What a crazy kid he is!

Tomorrow should be fun ... several people from Jack's school are coming over to the house to "meet" Jack. He's been a student at their school for almost 3 years and they are just now coming over to meet him. I've decided I need to be there, so I'll no sooner get to work and I'll have to turn around and leave to get to the house by noon (and then turn around and head back to work). I've yet to hear from either Hilary or Jack's school regarding the mandatory IEP meetings that are supposed to be held before December 22nd. I can't believe they are going to ignore the mandate of the Department of Education. **update: heard from both schools today ... I told them I'm not interested in compensatory services (in fact, I didn't even request compensatory services in my request for relief). The visit was good -- Jack "performed" well for all his visitors.

Have a great week!

Friday, December 08, 2006

Moving Forward Cautiously

I'm acutely aware that there are a few of you out there who may think I'm wrong for not following the recommendations of the St. Louis ortho - the guy who actually performed the surgery. Trust me, the decision to get Jack out of bed two months ahead of schedule isn't made without apprehension. Yet, sometimes common sense has to come into play and the textbook has to be thrown out the window. The golden rule of parenting is "go with your gut" and my gut says it's time to move forward. I'm so in tune to Jack, I practically breathe every breath right along with him and I truly believe that the benefits of staying in bed another two months (if any) don't outweigh the complications we are running into with pressure sores and contractures. The only thing we will do ahead of schedule is get Jack up in his wheelchair. We won't be putting him in the sling for the lift system or moving him all about. He will still be spending the majority of the time in bed. In general, I'm a high compliance person (really, I am :-) Therefore, to do something that is contrary to what is recommended is difficult for me because if I'm wrong, well ... I'll be wrong in a big way. We are moving forward very cautiously.

I'm not sure who this entry is directed to ... perhaps only me as I try and justify my decision to myself. When it comes to Jack, decisions are never easy. Stay tuned ............

Wednesday, December 06, 2006

Oh Happy Day!!








Today ranks as one of the BEST days of the year! We saw the local ortho and he told us to "can" the body jacket. He said it's time to get back to a normal life. Jack's x-ray looked great, all the hardware is in its place. He also looked at the pressure sore and he said it didn't look that bad - yet ... but, that was another reason to get Jack up and moving around. I feel like I just got a "get out of jail" card. I really like this ortho, he has the most refreshing personality. I've decided not to even ask permission from the St. Louis ortho ... common sense says it's time to get out of bed, it's been 4 months. I have to admit, for the first time in a very long time, I have a genuine smile on my face. As you can see from the pictures, Jack was happy to be up in his chair and he is very tall and straight now. He did get really tired after about an hour and 1/2 in the chair. We have to take it slow, but by the time Christmas rolls around he should be tolerating his chair much more. We decided to retire the body jacket on his big teddy bear that he got for his birthday from one of his great supporters (like it Kari?)

Mary made her Confirmation tonight. It was a perfect way to end a perfect day ... in church, giving thanks. The picture in church is with her Godmother and sponsor, Anne Marie (who I went to college with).

Thank you for checking in. I hope I have nothing but good news to report from here on out.

Sunday, December 03, 2006

Busy Weekend!



We got both Christmas trees up and decorated. Whew! They are real trees and I love the smell of them. It was too dark by the time I finished decorating to get a good picture of our big tree, but the above picture is the tree we set up in Jack's room. The smile that came across Jack's face when I told him it was time for bed, turned off the lights and all he could see were the lights from his Christmas tree ... was priceless! Eric told me tonight that he wishes he could be like Jack so that I would pay attention to him. Ouch! He wants to know why he can't have a Christmas tree in his room. How do you explain to a 4 year old that it's because he can walk into the living room and look at the Christmas tree. *Sigh*.

Jack's pressure sore is terrible. It's open and oozing again. Not good at all. The alternating pressure mattress Apria sent out is a joke. It's not a mattress, it's a pad and it has pockets that fill up with air and that's it. Seems to me that while the pad may have alternating air pockets, since Jack is not "alternating" it does no good. We need a mattress that has air that moves, or something that is continuously changing the position of the mattress against Jack's skin. I'm not going to bother with Apria, I'm going to call another DME company we have in town and see if they can help me.

As far as the pressure sore itself, we see the orthopedic doctor on Wednesday and I'm going to ask him to look at it and then call our pediatrician because something needs to be done. My mom (who is a nurse) says that a wound care nurse should come out to the house to care for Jack's sores. We'll see what happens after Wednesday. Of course, taking it to the worst case scenario, I've already got him in the hospital and on IV antibiotics right about Christmas when I'll have a house full of guests. I'll shoot myself if that happens.

We have a busy week coming up with Jack's ortho appointment and we also have Mary's Confirmation on Wednesday. I'll let you know what I find out from the ortho on Wednesday. Hope you all have a good week.

Friday, December 01, 2006

Score!

In September I filed a complaint against our school district because over two months into the school year, they still had not sent any therapists or a teacher to our house for Jack. As a general rule, I don't get too excited about what the school district does or doesn't do because we have enough people in and out of the house providing services to Jack. However, after finding out that the failure to provide services was coming directly from the top -- the Director of Special Education -- I decided I needed to make a point. I discovered this fact from an email that was forwarded to me from the company previously contracted to provide services and which, no doubt, was not intended to get into my hands. Since I was filing a complaint, I figured I'd also add that the district was in violation of Hilary's IEP as well because they didn't commence her speech therapy until school had been in session for over a month. Today I received the findings from the Department of Education after completing its investigation:

Issue: Whether the District provided the special education and related services, in John's (that would be Jack) IEP, at the start of the 2006-2007 school year.

Finding: Based on the fact that the District delayed implementing services, it is found to be in noncompliance.

Issue: Whether the District provided speech therapy according to Hilary's IEP.

Finding: Based on the District failing to provide the services, it is found to be in noncompliance with regard to this issue.

Score! Okay, so a little humility would be a good thing here. But, you just have to know that the Director for Special Ed made the mistake of playing games with me and, what's worse -- she is a dishonest person. Anyway, I've had my say, I made my point and I'm definitely going to move on. The Department of Education is requiring that we reconvene within the next three weeks to rewrite both Jack's and Hilary's IEP to determine the level of compensatory services the school shall provide, if any. I don't want any compensatory services and the last thing I have time for is to sit through 2 IEP meetings this time of the year.

How nice to get some good news on a Friday. It sure beats the handful of EOBs from United Heathcareless that are replete with incorrectly processed claims. I just threw those in a stack and won't open them until Monday. No need to ruin my good mood. We have a lot planned this weekend ... putting our Christmas trees up and getting the house ready for family that will be coming out for Christmas (i.e. painting). Hilary needs to get pictures of "wildlife" for her photography class. I can't understand why pictures of Eric won't meet this requirement :-) Looks like we'll be dropping her off at the zoo for a few hours tomorrow so she can complete this project.

Hope you all have a wonderful weekend.

Thursday, November 30, 2006

Not So Sunny Phoenix


My sister will appreciate this. Here is Eric this morning in the car on the way to school. The cold weather was too much for him!

Monday, November 27, 2006

Jack's Perspective

It's been mentioned by many of you – some who have seen Jack in person and others who see him only through the pictures I post – that in spite of everything, Jack appears happy. Yes, JACK IS HAPPY! How can that be? Some might believe it’s because Jack isn’t all “there” (these some bodies are generally found in the medical profession). While Jack may be labeled MR by the professionals, there is no question that Jack is “here”. I know this to be true. I know it because I see it in his eyes, I see it in his smile and I feel it in his presence. If you have any doubt, go back and watch his birthday video again. His eyes say it all. Jack may not be a genius, but Jack is wise beyond his years. To acquire wisdom, one must be an observer and Jack is the supreme observer. If Jack is so wise and truly “gets it”, then I ask again, how can he possibly be so happy?

I suppose one way to analyze this question is by asking what is it about Jack’s situation that makes me so unhappy? Unpredictability, confinement, lack of control and uncertainty . . . to name a few. Yet, from Jack’s perspective, life is very predictable, he has no place he must go, he has no need to control and he doesn’t need to know what tomorrow may bring. Jack lives for the moment and every moment of every day Jack is loved, he is pampered, he is adored, he is entertained and he is shielded from pain to the best of our abilities. Any parent would do for their child what we do for Jack – there is nothing unique about us as parents. The uniqueness lies in Jack. I can’t explain it, it’s just there.

As a parent, it’s my responsibility to carry the worry and burden of this journey, not Jack’s. Therefore, while I’ll no doubt continue to fret about the unpredictability, confinement, lack of control and uncertainty and yes, I’ll occasionally be unhappy . . . Jack will continue to live in the moment and, in his own unique and wise way, he will continue to BE HAPPY.

Sunday, November 26, 2006

Relaxing Weekend





We are coming to the end of a very relaxing and enjoyable four day holiday weekend. It was so nice not to have to get up early and herd everyone out the door for school. The pictures are of everyone just hanging out today (even our dog, Rylie). Mary, naturally, waited until Sunday evening to start her homework. I personally think it's ridiculous to give kids homework over a holiday weekend that should be spent enjoying time with family. Eric is watching Hilary play a video game on the TV. If you are wondering where Mark is ... he was outside putting Christmas lights on the house and decorations in the yard. It's somewhat difficult to get into the Christmas spirit here in the desert when it's 80 degrees and you are wearing shorts while hunting for the perfect Christmas tree! Since we are having a full house this Christmas with my brothers and sister and their families coming into town, I thought we should at least try and make the house look "Christmassy".

On the Jack front, we are now dealing with another pressure sore right next to the one that is finally healing. I predicted this! The pictures I posted a few days ago of Jack's back don't begin to do justice to what his back really looks like. The bumps all over his back make no sense to me .... I can't even tell where the hell his spine is. I think the nice, smooth "C" curve he had prior to surgery was much better than what I am seeing now. I really need to run my questions and concerns by the St. Louis ortho, but the guy is so unlikeable that I can't bring myself to even compose an email to him. Another concerning issue is the contractures in Jack's ankles, knees and wrists that are getting worse by the day. I've no doubt that laying in bed for months is contributing to this. I try putting splints on Jack's feet, legs and hands, but he just whines when I do (can you blame him?) I feel like there just isn't much I can do to make life better for Jack anymore. I so much want to get him OUT OF BED, but at the same time, I'm terrified of what our next issues could be ... i.e. broken hardware. When I asked the ortho how would I know if the screws were to break off, his response ... "you'll hear popping sounds". Okay, and then what? I'm beginning to wonder if Jack is at a point in his life that he will always have issues and will never really be the status quo again. I have a lot of questions to run by Jack's (St. Louis) neurologist who is supposed to call me this week. When I emailed her last week she must have sensed my frustration and despair because she asked for my phone number so "we can talk". I'm looking forward to talking with her, as she has a way of telling it like it is, but always tempering it with compassion.

That's the update from sunny Phoenix. Thanks for checking in.

(I have to rub in the "sunny" part for my sister, Maureen who thought it was a wise decision to move to New Jersey a few years ago. I'm trying to convince her to move back home. I mean really, who moves TO New Jersey on purpose?)

Thursday, November 23, 2006

HAPPY THANKSGIVING


EAT, DRINK AND BE MERRY!

Tuesday, November 21, 2006

Thanksgiving

A heartfelt thanks to all my wonderful and supportive friends who are always there ... standing by. You mean the world to me.

** To my sisters, this includes you. :-)


The Friend Who Just Stands By

When troubles come your soul to try,
You love the friend who just stands by.
Perhaps there's nothing she can do,
The thing is strictly up to you.

For there are troubles all your own,
And paths the soul must tread alone.
Times when love can't smooth the road,
Nor friendship lift the heavy load.

But just to feel you have a friend,
Who will stand by until the end.
Whose sympathy through all endures,
Whose warm handclasp is always yours.

It helps somehow to pull you through,
Although there's nothing she can do.
And so with fervent heart we cry,
God Bless the friend who just stands by.
- Author Unknown

Sunday, November 19, 2006

Jack's Back



This might be too much information for some of you, but I am posting pictures of Jack's back for those who might be interested. As you can see, the pressure sore is small, but if we didn't get on it right away, it could have become a very big problem. The second picture shows two lines which correlate to two separate areas on his back that protrude.* One line must be his spinous process (I have no idea which one) and the other line, I'm assuming would be hardware. Given their locations and the fact that they don't seem to line up -- I don't think they are the same thing. But, what do I know? We see the local ortho on December 6th -- we'll see what he thinks. I'm expecting to get the go ahead from the Phoenix ortho to allow Jack out of his brace and into his wheelchair. I needed a letter from the St. Louis ortho for our school district re: how long before Jack can sit in his wheelchair and in the letter he is still sticking to the 6 months schedule. I plan on emailing him regarding an early release, but I'm going to wait until we see the local ortho first. If the St. Louis ortho says "no", I'm inclined to get him up in his chair anyway because -- as I told the St. Louis ortho's nurse --- it's both insane and inhumane to keep Jack flat on his back for 1/2 a year! I'm also going to talk with Jack's neurologist before we get him up because I've got to believe that there could be some issues with sitting up after being flat on your back for 4+ months. If nothing else, I'd think you could get one helluva headache.

No word yet on how Mary or Shannon did in their competitions. Update: Mary's Ceile team placed 8th out of 23 and Shannon's Ceile team placed 6th out of 31; Shannon recalled on her individual dances, which means she placed in the top 50% and got to dance a second set. This was Shannon's first time to recall. Congrats girls!

Have a great week! Thankfully, it's a short work week.

* The lines are the result of some photoshopping on the pictures. I didn't actually draw lines on Jack's back, just in case you were wondering :-)

(btw, for anyone who might not know ... you can make a picture bigger by clicking on it.)

Thursday, November 16, 2006

Irish Dancers

Our sweet Mary and my equally sweet niece Shannon left for Portland, Oregon this evening (with my sister Joan) to compete in an Irish Dance competition. Shannon (who is 17 and a junior in high school) will be dancing both individually and as part of a team called a Ceile (pronounced "Kaylee"). Mary (who is 13 and in 8th grade) will be dancing as part of a Ceile team only. It's a major dance event in the world of Irish Dancing. If you place high enough, you earn the right to compete in the World competition which takes place every Spring in Ireland.

While Mary will be the first to tell you that I am not a big fan of spending my entire weekend at an Irish Dance competition (I'd rather stick needles in my eyes, actually), I really am disappointed that I'm not able to experience such a major competition with Mary. She always does better when I'm not around, so that makes me feel a little bit better. Mary's competition is on Sunday, and Shannon dances both Saturday and Sunday. Send good luck their way and I'll let you know how they do.

Good evening.

Tuesday, November 14, 2006

Whining

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Thanks guys.
(Kari, your comment had me in tears.)

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I realize after reading through many of my posts, that I do a fair amount of whining. I assume that if you read Jack’s blog, you have an interest in knowing what is going on with Jack. Whether or not you are interested in how I feel about the whole thing is questionable. However, I have to admit that after I get my whining out of the way, I really do feel better. So, for those of you who give in to my whining and offer words of support (or a silent prayer) … thank you! For those of you who think I need to “get over it” ... I agree with you for the most part.

I’m the first to admit that I have a flare for the dramatic. Every little thing is taken to the worst case scenario in my mind. It’s a coping mechanism. If I expect the worst and prepare for the worst, then anything short of the worst is a “relief”. You’d have to live this life to understand. Having a child with intense medical needs is … well … intense. Yet, you learn to adjust - you find your new normal, you get into a routine and you get up each day and function with the rest of the world, notwithstanding the fact that your child’s every breath literally depends on you (and those you trust to fill your shoes in your absence). There is a very fine line between holding it all together and feeling like you are about to fall off the cliff that parents like myself perpetually teeter on. Although an issue may appear to be a little thing, when you have no reserve, it’s the little things that will push you over the edge - as I’ve obviously demonstrated time and time again over the last 4 months. You’d think after eight years of teetering, falling and getting back up, I’d be more conditioned to handle the bumps encountered along the way. However, my ability to cope seems to diminish with each “bump” I encounter, and the whining intensifies.

My rational self knows that I just need to “cowboy up”, shut up and deal with it. Yet, when I sit down at the keyboard, my very emotional self takes over and I whine. Those of you who encounter me in person see the rational me. Those of you who encounter me only through my written words see the emotional me. Those of you who see me both places … you’re no doubt as confused as I am!

I can’t promise to cease all whining, I can only suggest that if you tire of the whining … hook up with me in person, the rational me is much more tolerable.

Monday, November 13, 2006

Spinous Process


Spinous process: The protrusion down the center of the back (red in the picture). It is the bone you can feel when running your hands down your back. Unless you are Jack, in which case your spinous process runs along the left side of your back about 3 inches off center (and that is "corrected").

As you may remember, Jack had this area on his back that was protruding and it had me worried. We saw the local ortho and he said it was the spinous process. Over time, the area of protrusion has become longer and more protruding. We are now dealing with an open (broken skin) pressure sore. Not good! Pressure sores could lead to infection, which could lead to sepsis, which could lead to .... well, you get the picture.

So the question is, did we just trade one set of problems for another? Here is a kid with this area on his back that is clearly susceptible to skin breakdown. This area will always be up against something, whether it be his wheelchair or the bed. Are we now going to spend the rest of Jack's life fighting off pressure sores? Does it EVER end? (other than the obvious end.) These, of course, are rhetorical questions. I don't even know which doctor I need to discuss this with. I guess I could start with the pediatrician. I've a mind to lay it in the lap of the orthopedic surgeon, but I'm sure he'll just toss it into someone else's lap.

Sorry for the lousy update, but I'm in a lousy mood and it's only Monday. Thanks for checking in on us.

I suppose I'd better re-read my previous post and change my attitude, eh?

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Melisande and Sharon -- Jack is never in his body brace. He only needs to wear it when he is out of bed. Why get him out of bed if he still must lay completely flat because the brace goes to his mid-thigh? There's no reason to get him out of bed just to put him in a body brace. The only time he wears his body brace is to go to doctor's appointments. The pressure sores are simply from laying on the boney area that is sticking out. Thanks for your thoughts!

Friday, November 10, 2006

The Dash

Food for thought:

THE DASH
by Linda Ellis

I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning to the end.

He noted that first came her date of her birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years.

For that dash represents all the time
That she spent alive on earth.
And now only those who loved her
Know what that little line is worth.

For it matters not how much we own;
The cars, the house, the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what’s true and real
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we’ve never loved before.

If we treat each other with respect,
And more often wear a smile
Remembering that this special dash
Might only last a little while.

So, when your eulogy is being read
With your life’s actions to rehash
Would you be proud of the things they say
About how you spent your dash?

Thursday, November 09, 2006

Need a Laugh?

I sure do! Most of you have already seen/heard these clips ... but, they are worth repeating, if only for myself.

Jack - audio only

Jack laughing

Eric is only 3 years old here:

Wednesday, November 08, 2006

Home "Improvements"



The ceiling mounted lift has been installed. A track is over Jack's bed and over Jack's throne (the couch) in the family room. In the pic of Jack's room, you can only see the headboard to Jack's bed since the bed has been temporarily dismantled to make room for the hospital bed. It wasn't financially (or aesthetically) practical to install a track system throughout the first floor because there are too many different ceiling heights along the way. How it works (for those who are clueless) is that Jack will be in a large sling that attaches to a portable motor that hangs from the track (and which is not pictured) and the motor will lift him from the bed to his wheelchair or bathchair and from his wheelchair to the couch. The lift is not something Mark or I expect to use much, but Jack's nurse -- who is all of 4'11" can no longer lift him. We don't ever want to lose Kristi as Jack's nurse, so the lift is really for her use.

I'm not quite as thrilled with the whole thing as I thought I'd be. I have to admit, when I first walked in the house after it was installed, I got tears in my eyes. It is just another one of those "in your face" reality checks. Plus, it's not exactly my decor of choice. Oh well ... I'm really OK with it now. I don't even notice it anymore. As with everything in life ... you do what you gotta do!

Have a great rest of the week.

Tuesday, November 07, 2006

Safely Home


I realize this is Jack's blog, but many of you who are reading this know that my brother was deployed to Iraq last November. I want to let everyone know that he arrived safely back home (Ohio). He plans on taking a few weeks off before getting back to his civilian job with Lucent Technologies. I'm sure it will be a bit of an adjustment. Thank you for keeping him in your thoughts and prayers this last year.

The picture is of my brother and his twin boys before he left last year.

Saturday, November 04, 2006

Happy Birthday Jack







Pictures:
1. Jack, sibs and cousins (like a typical 4 year old - Eric is mad because it's not his birthday and he's not getting the presents.)
2. Self-explanatory
3. Jack, Mary and Eric first thing this morning watching the first season of the Muppets DVD that Jack got for his birthday.

Take 1 of "Happy Birthday" -- my camera stopped before the song finished because the memory card was full.


Take 2 of "Happy Birthday" -- the von Trapps we are not!!



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Today is Jack's 8th Birthday. Hard as it is to believe, I'm without words right now ... so, I'll let the video I put together do the talking. Many of you have already seen the video, for those of you who haven't - here is the link:

8 years of Jack's journey

We are having a birthday party for Jack this evening. I'll post pictures later.

Tuesday, October 31, 2006

Halloween




Jack enjoyed Halloween from the comfort of his bed ... SURPRISE!! Can you hear the sarcasm? Jack's nurse, Kristi dressed him up as a vampire and to be honest, the pictures creeped me out, so I deleted them from the camera. Sorry, no picture of Jack this Halloween. Hilary went to a friend's house to watch movies (no picture of her either). Eric and Mary went with their cousin Shannon and friends. Mary (far left) and friends are from Napoleon Dynamite (I've never seen the movie, so I'll leave it up to you to guess who is who). Eric was a combination ghost and pirate. He really got into Halloween this year. The last picture is my sister Joan enjoying the nice Arizona evening. Hope you all had a grand Halloween!