The Instigator

I wish I could say that Eric remains in the green. He ended last week on neither green nor red, he ended it sick! He missed school on Thursday and Friday because he was running a fever. He had three good days last week and earned a "reward" from his teacher -- a bug book. Unfortunately, the good behavior was short lived. Today when Mary picked him up after school, she said he was escorted out by his teacher and he had a very sad face on. Ugh! Apparently, his mouth got him into trouble. I called home, talked to Eric and got his side of the story (I swear the kid can talk his way out of any situation). I emailed his teacher to let her know that I had a hard time believing Eric was the instigator in every situation that got him into trouble. Her response was "It seems at this point to be 80/20 , Eric being 80 percent the instigator." Well, hell. I'm at my wits end here. You have to understand that Eric may be my fourth child, but he is my first strong-willed child. I guess I just take it one day at a time -- cherishing the green days and dealing with the red days as they come. I'm open for suggestions ... anyone?

Jack continues to do well, still having an occasional fever, but not often enough to concern me. It's possible that the fevers are a consequence of his disease --- I don't know and I doubt any doctor could give me the answer either. When it comes to Jack, his doctors have few answers. However, what they lack in answers, they make up for in well wishes and support. I emailed Jack's cardiothoracic surgeon (who is no longer at St. Louis Children's) with a Jack update and received the following email in return: "Know that you are in my thoughts and prayers and thank you for always keeping me abreast of what's going on. I wish you peace and send warm regards...Dr. M." . . . What a great guy.

That's the update from here ... wishing you all a green day tomorrow and the rest of this week.

Ciao.

Hands

There is nothing more beautiful than a child's hands, and no simpler way to convey love than the touch of a hand. This is especially true when it comes to Jack because his hands are the only part of his body he can freely move. As I've mentioned before, there is an ineffable peace you feel when you take hold of Jack's hand.

As I was looking through pictures of Jack, I was surprised by the number of pictures I found of people holding or touching Jack's hand. The pictures reflect Jack not only giving, but often times receiving, the peace and joy that comes from the touch of a hand.

Because, as they say -- pictures speak a thousand words -- I put together a montage to share.

Wishing you a week of peace and joy!

Make video montages at www.OneTrueMedia.com

We Are In The Green

Two days into the week and we have two GREEN days at school. Yippee! I'm cautiously optimistic that we will end the week on a green note. Eric also started soccer this week and did so much better than he did a year ago. Last year he thought it was entertaining to pick up the orange cones and put them on his head as fast as the coach put them down. This time around he (so far) listened, followed directions and participated in the task at hand. There is hope.



Jack's fever is back today. He's not outwardly sick, so I have no idea what the source is. It could be nothing more than a viral thing. However, my "take it to the worse case scenario" mind worries that it could be an infection in the hardware - although, I suspect the symptoms would be more severe if that was the case. The last place I want to go is to a doctor's office - I'm afraid Jack's pediatrician would want bloodwork and that would be a nightmare, considering he needed arterial sticks to get blood last summer. I can't imagine taking Jack to a drive-thru "McLab" to get his blood drawn. Hopefully, whatever is going on will resolve on its own very soon.

I'm still waiting to get the pre-authorization from our Department of Developmental Disabilities for the eye-gaze communication evaluation. I'm moving from being patient to being pissed. I don't really want to make "the call" to the powers that be, but if I don't hear something by the end of the week, I guess I'll have no other choice. It's going to take another two months to get an appointment for the eval itself, so time is of the essence.

I'll close with some comic relief from the "two faces of Eric". Have a great rest of the week!

Make video montages at www.OneTrueMedia.com

Strong?

Hope begins in the dark; the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.

-Anne Lamott

I’ve been told on more than one occasion that I am strong. The first time I recall hearing those words was from a PICU intensivist. It was the same doctor who tried to convince me that I should let them trach Jack at the same time he went under anesthesia for a muscle biopsy. I told him that I wasn’t going to agree to trach Jack until I knew why. The day Jack was trached, he came up to me and told me I was “a very strong person”. I’ve been told that I am strong by people who are on the outside looking in - those who only see or imagine what caring for Jack involves. I’ve also been told I am strong by my fellow sorority sisters – women who face the same hardships and struggles as I, and who know what caring for a child like Jack involves. Strength is in the eye of the beholder. To most, I suppose I appear strong because I am living a life they can’t even begin to imagine themselves living. The operative word being …. living - as in functioning, participating, and even enjoying on occasion. To those who live the life, I’m not sure how they see me as any stronger than themselves. Perhaps it’s because I’ve been doing this longer than they have and I still (purportedly) have my sanity.

I certainly don’t feel strong. Mostly, I feel tired. There are times I feel angry and times I feel sad. But, for the most part I feel confident, I feel a purpose and, above all else, I feel determined. I am determined to find a way to live the life I want – the life I planned – as best I can under the circumstances. Admittedly, not an easy endeavor given the overwhelming emotional, physical and financial stresses that come with having a medically fragile child. Yet, I get up each day determined to give it my best shot, determined to “keep on keeping on”. Some days I am more successful than others. But, no matter what -- I refuse to "give" because I am determined to do it my way.

Does that make me strong? No, I am not strong . . . I am simply stubborn.

Happy Friday!

It's been another week of "red" days and emails from the teacher. Eventually Eric will figure it out, especially when every bug, bug book and piece of lego has been confiscated. His favorite line is "But, I tried my best." I told him to quit trying and just do it! Then I realized I sounded just like my father. Scary!

Jack has been under the weather a bit this week, running a fever on and off and looking pretty pathetic at times. His sats are fine - which is always my biggest worry. I suspect his teacher or therapist brought something into the house from the kids at school they work with. I guess it's time for a not-so-subtle reminder that they must wash their hands upon entering our house. We saw the orthopedic surgeon this week and everything looks great. Jack's St. Louis ortho pleaded for a copy of Jack's x-ray (we haven't been so good about keeping him in the loop), so I got a copy of Monday's x-ray and sent it off to him. I know it really bugs him that he hasn't seen Jack for follow-up. Before surgery I asked him what his "mandatory" follow-up times were after surgery and he said 6 weeks and 1 year. Oh well! If he was a likeable guy, I'm sure I would have made more of an effort to get Jack back to St. Louis, at least one year post-op.

The side effects of radiation/chemo have finally caught up with my mom and it's time to go wig shopping. Other than the hair loss and overall feeling of blah, my mom seems to be tolerating the treatment well. She should be getting an MRI in the next week or two and that will tell us much.

That's the update from here. Have a great weekend.

Finally an update

Although there's not really much to update as things remain the status quo here. I should be happy, yet my mood has been anything but. In many respects, the "down" times are the more difficult times. When you are in crisis mode, you have something in the here and now to focus on and specific results to achieve. When things are running smoothly (relatively speaking), there is too much free time. Time to think about the future and what lies ahead. Time to think about what is and what isn't. I'm not sure I'll ever be truly happy because life will never be truly okay when it comes to Jack. He deserves so much more out of life than his body allows him to experience. At times, the loss --- Jack's loss, our family's loss, my loss -- it just saddens me.

I went to a moms back-to-school happy hour last Friday. Naturally, everyone was talking about their kids and the start of school. Since I have three kids in school, I could join in the conversation without much hesitation. However, when this one woman asked me how many kids I had and what grades they were in . . . I told her about everyone except Jack. I just wasn't up for being the one in the crowd who was different and I didn't feel like getting into the whole "I have an 8 year old, but ......." conversation. As far as this woman knows (and most people who don't know me well know), I only have three kids. I felt like a complete heel after the fact. While I appreciated the invite, for the most part, it's really not worth it to go out and pretend like I'm one of "them". Fact is, I belong to a club that no one wants to join, or even really hear about. That said, I feel like a big dolt for even complaining because I have many friends who's only child has special and/or medical needs and at least I have three healthy kids to enjoy. So, I really should just shut up and stop complaining.

And on that happy note, here is a picture of Jack and his teacher Renee. Renee is not only a wonderful teacher, she also offered to learn Jack's care and has filled in on occasion when Kristi couldn't work. Unfortunately for us, Renee took a job in California and is moving this week. We will miss her lots and we hope she is absolutely miserable in her new job and will come back to Arizona soon (just kidding ... sorta).

Final Interview

Miles Levin - the young man I told you about a while back who is dying of cancer, granted a "final interview" to his mom today. Miles is days, if not hours away from leaving this earth and, once again, I feel like his words are so worth sharing.

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Due to copyright, go directly to Miles' CarePage name: levinstory

Go Ahead and Laugh

As if a phone call on Monday wasn't enough, here is the email I received today ....

I am going to add "keeping hands to self" to your son's (school policy will not let me use your son's name in email due to privacy laws) behavior chart.

I talked to the whole class this morning about being a good friend and not poking or touching our friends. I also told them if someone is poking or touching them, that they need to use words, and ask them to stop. If that doesn't work then they need to tell me, but not to poke back. I also said we Do Not start any poking or touching others in line or at our seats.

I saw him trying to kiss another boy on the cheek today. I asked him nicely to stop and said that sometimes our parents kiss us goodnight on the cheek but that we do not do that at school. As I turned around he did it again, then still again after that. I am sorry to say he was on "red" today. Yesterday he seemed happier at school and I kept praising him every chance I had. Hopefully, tomorrow will be another good day.
Ms. Woods

Go ahead, you can laugh. I'd be laughing too, if it wasn't MY KID!! Anyone know of a good military school?

Oy Vey!

Two weeks into the school year and I'm already getting phone calls from the teacher . . . that would be Eric's teacher. It seems Eric has a problem with his listening skills and with following directions. He's managed to get all the way to a RED light on more than one occasion due to his behavior. Hmmmm, did I mention I was too old for this? On one hand, you could come to the conclusion that Eric is just a spoiled rotten kid who has been running the show the last five years and he just needs to learn how to behave in a structured environment. On the other hand, you could come to the conclusion my friend Peggy has, and that is that Eric is not being challenged enough, he is bored and he doesn't listen because he is thinking on an entirely different plane than what is being taught. Peggy warned me months ago that Eric would be seen as a problem child because of his intelligence. So, what to do? My first response was to threaten the kid with his life if he doesn't change his behavior and start doing what he is supposed to. However, after a long conversation with Peg, I think we make him aware of what behavior is acceptable in his current setting (with consequences for unacceptable behavior) and we get him involved in other activities to allow him to utilize all the information and ideas in his head, plus burn off some energy. Believe it or not, the kid already knows how to play chess! I'm thinking of adding soccer, piano and maybe Karate to his schedule. If things don't get better in the near future, I guess we revisit the gifted program. By the way, did I tell you I'm too old for this?

This morning, as Eric was (again) yelling at me on the way to school and then proceeded to make an about face and head back to our house because he hates school, I asked myself, why couldn't I have gotten a sweet, gentle little boy instead of an intense, high-strung monster (albeit a lovable monster). Then I realized that I did get my sweet, gentle little boy --- Jack. I imagine that if he could, Jack would be my teddy bear, my kid who would give countless hugs and shower me with "I love yous". He would be a "momma's boy". While Jack can't reach out and give me a big hug or say the words "I love you mom", I can still feel the hugs and hear the words through his eyes and his smile. I'll take it. I'll take that monster kid too - he does keep us laughing.

I took Eric to get new shoes tonight because one of his issues is that he plays with his shoelaces and eventually takes his shoes off during class and then he can't get them back on. His teacher asked if we could get him shoes with velcro straps so he wouldn't have the shoelaces to play with and it would be easier to get the shoes back on. Fifty dollars later, the kid has a pair of velcro strap shoes that light up. I just realized that he will now probably take his shoes off and proceed to smack the floor with them so he can see the lights. What was I thinking?

I can't wait to see what tomorrow brings.

Piano Man

A few weeks ago, Jack's speech therapist brought this nifty little piano for Jack to play - he activates the piano by moving his hands. I don't think it's actually a piano, but some type of sensor that picks up movement. The higher he raises his hands, the higher the note. Apparently, Jack loved it and did very well creating his own music. I'm not home when the therapist comes to the house, so she videotaped it for me. As you can see, her computer screen displays Jack as he is activating the keys and she videotaped her computer screen. It's not the best video, but it is kind of cool to watch.

Make photo slide shows at www.OneTrueMedia.com

Eric funny:

As we were walking to school yesterday morning, Eric was yelling at me and telling me that he did not need to go to school because he already knows everything! He said that he knows how to use scissors and how to count to 100, so why does he have to go to school? I explained to him that he may know how to count to 100, but he doesn't know how to add, subtract, divide and multiply those numbers yet. He looked at me with his inquisitive eyes and asked what did I mean. After I explained, his response was "I'm going to find me a new mom who will let me do whatever I want." . . . Knock yourself out kid!

My mom:

I received the following email yesterday morning:

Ann – got the result back this morning. Your mom is not eligible for the Celldex study – her EGFRvIII is Negative.

I hope your mom is doing well with her current therapies.

Susan

Susan Adler
Administrator, Brain Tumor Center
Neurological Institute
Columbia University Medical Center

Disappointing, but not unexpected news. I guess we just hope and pray that the radiation/chemo does its job. My mom will have a repeat MRI in about 6 weeks and that will tell us a lot. Until then, we just hope for the best (or live in denial, depending on how you want to look at it).