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!

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.

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?)

HAPPY THANKSGIVING

EAT, DRINK AND BE MERRY!

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

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.)

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.

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.

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?

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:

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.

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.

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.

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!

Jack is ready ...

to get out of bed. He and I had a conversation tonight. I told him he has one month left before he can get out of bed and get to the mall (ok, technically, he has more than a month, but at least the end is in sight.) Here's what Jack had to say.

Yielding

I am re-reading a book titled "Changed by a Child", a book of companion notes for parents of a child with a disability. I had flagged the note titled "Yielding" and, as I was reading it again, I realized why. This note epitomizes my personal struggle over the last 8 years very well. The process of yielding is continuous. I am constantly yielding, then trying to regain "control", then yielding again. With everything that has gone on the last few months with Jack -- from his surgery and all its complications to my present dealings with the school district (which is a very uncomfortable situation right now) ... it's again time to "yield".

Yielding

Looking at what might be ours if we surrender to the fact of our child’s disability and its impact on our life, looking around at the roles others in a similar position seem to occupy, we might immediately protest: “Hey wait a minute. I don’t want to be exceptional, special, an advocate, political, a pioneer, a teacher, an expert on disability, brave, anguished, stigmatized, toughened, changed, holy.”

To surrender means to yield to the power of another; it carries strong connotations of defeat and ignominy. But to surrender also means to give up resistance. When we cling to our self-will we are in the ludicrous position of putting ourselves in charge of things that are out of our control. On the other hand, when we give up our will, when we give up resisting something we can’t change anyway, we open ourselves to a new set of choices. Actually, we never abandon our ability to will and to choose. We only shed the will we are presently exerting, because it no longer fits the circumstances of our life. Like a molting lobster, we give up the too-small will and grow a new set of intentions that fit.

Having given up our will that our child will walk, or see, or go to college or continue the family name, having embraced the new choices and undertaken new actions, we may discover that what we are doing is, in fact, exceptional or pioneering. We may find that our new, bigger shell is that of an advocate or an expert.

Weekend Activities

We kept busy this weekend with the usual flurry of activities ... you know, laundry, house cleaning, grocery shopping and, of course ... changing videos every hour on the hour to keep Jack entertained. Actually, we did some fun stuff too. Mary had an Irish dance competitition and she did quite well - even got a couple of first places. She will dance in a competition in Portland next month, but I won't be able to go with her since I used all my vacation time at that wonderful vacation destination known as St. Louis Children's Hospital! We also painted pumpkins today - Jack is posing with the Elmo pumpkin.

Since Jack is doing so well, we are weaning down his vent settings some. He had such a terrible year last year with a lot of pneumonias that his settings were higher than usual. However, now that Jack is straighter and his abdominal contents are no longer being shoved into his lungs and he is healthy and infection-free, he is a bit over-ventilated. Although Jack will never be vent-free, we don't want him to get too much vent support because being over-ventilated can change the blood pH - although it's not as damaging as being under-ventilated (per Jack's former pulmonologist who I still rely on when it comes to Jack and his vent). I turned his settings down to what they were a year and a half ago. He seems to be tolerating it fine. Now, who am I going to get to write the order so that the nursing agency won't have a fit?

Thanks for checking in. Life is uneventful ... life is good!

The Broviac is Out!

We saw the surgeon today at what I thought was an appointment to schedule the broviac removal in the OR. Instead, he just "ripped" it out right there in the office. Ouch! Although the nurse said the surgeon would numb up the area before he pulled it -- he didn't. It really upsets me when people discount Jack's ability to feel pain just because he can't talk. Needless to say, Jack cried after the broviac was pulled, but he was better by the time we got out of there. Yeah ... no more broviac!

The nurse was astonished at the size of Jack's MIC-KEY. She said they put longer tubes in newborns and that Jack's balloon was probably in his tract (for you non-medical people, that would be the space between where the tube goes into the skin and the stomach). The balloon should be in the stomach. We upsized significantly to a new and improved and longer "Mini" g-tube (is that Mickey's better half?)

All in all, it was a productive appointment. Have a great evening!

Perspective

“We don’t see things as they are, we see them as we are”
Anais Nin

From where you are, you have all insisted that I made the best decision under the circumstances. The amount of confidence you have in me is a little scary, but I certainly appreciate your support. From where I am, as someone who is very tired and very angry, I guess I’m focusing on all the wrong things. I don’t recall being this angry since Jack left the PICU 7 years ago attached to a bunch of equipment he didn’t have when he entered the hospital. I always believed that when you left a hospital you were supposed to be better off than when you entered. I suppose what constitutes “better off” is all a matter of perspective. In any event, I need to get to a “happy” place and try and remember why we had the surgery done in the first place. It’s time for a major attitude adjustment!

The picture is of Jack getting his nightly head massage from me. He loves his head massages. The other one is of Mary doing what we do around our house for fun … race around in wheelchairs :-)

Have a great week!

Comparison

X-ray #1 is Jack
X-ray #2 is Anthony

My friend's son, Anthony, had a spinal fusion surgery done less than 2 weeks ago at UMass Medical Center. She gave me permission to share his x-ray. Anthony's surgeon used the wires that our local ortho would have used if we'd had the surgery done here. I might add that Anthony is home from the hospital, requires no body brace and is SITTING in his wheelchair already.

Okay, I will admit that comparing Jack and Anthony is like comparing apples to oranges. Jack has a neuromuscular disease, "extremely poor bone quality" (to quote the operative summary) and had a 90 degree curve (corrected to 52). Anthony has CP, better bone quality than Jack and had a 70 degree curve (corrected to 20). But, I thought it interesting to show the difference in techniques and the recovery period. It makes no sense to make myself crazy over this whole thing, but I am. I might also add that Anthony had a compassionate and personable orthopedic surgeon and Jack did not -- which is no doubt the crux of why I am having such a difficult time coming to terms with what was done to Jack and whether it was in fact the "best" procedure for him. Maybe if I'd had a surgeon with a little compassion and empathy, I'd be comfortable with my decision. Anyway, it is what it is. I'm just glad Anthony is doing so well and just a little ticked off that Jack's been through hell and he's still not where he needs to be.

There, I feel so much better now!