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Tuesday, March 24, 2015

A Crystal Ball

So many mixed feelings and thoughts are going through my head. What's the right thing to do--I know there is not really a right or a wrong way to go--just which one is the better for Ian and our family. Our goal - quality of life -the standard of health, comfort, and happiness experienced by an individual or group - are the things needed for a good quality of life. We all know quality of life can get modified depending on the individual or group as well as the situation. 

There are pros and cons which ever way we go. To do the surgery - to not do the surgery? We already know Ian is in pain and uncomfortable - we know some days are better then others. Sometimes it is as easy as repositioning him - making sure pillows are in just that right spot - but we maybe doing this every 5 minutes. Sometimes it requires giving him extra doses of medicine - which can make him a little loopy and tired while other times it will just take the edge off, requiring anothe dose. We know eventually he maybe drugged up but don't feel now is that time. Sometimes we handle all of this well while other times we get very frustrated with the situation and with Ian (even though we know its not his fault).

The surgery, oh the surgery - the goal is for his back pain to be minimal if not gone. However, the issue is getting to that point - the actual surgery, the recovery, the wound, etc. - all painful. Yesterday was a world wind of information - trying to take it all in was hard. The surgery will be between 6-8 hours. Ian will lose a large amount of blood and need a transfusion. He will have an incision from neck to butt - a nice wound we need to make sure does not get infected. The hospital stay will be 7-10 days with major pain - one doctor told us that pain will be the major challenge because we will be trying to manage acute pain and chronic pain - UGH. We know Ian will be on some tube feeding in the hospital - as we know when we don't feel good we don't want to eat. Actually, we have started him on 1-2 bottles of pediasure for the week as nutrition is an important part of the healing process -,wound healing as well. There are quite a few other things which we will need to do towards the end of the week and over the weekend. I'll spare you all those details. The end result a pain free back for Ian.

Not to do the surgery - contained pain in Ian's back. Increased pain medicine to try to control it as best as possible. Repositioning him numerous times as he has a hard time getting comfortable in bed - many pillows, towels, what ever we can figure out to get there. 

What's the answer. A crystal ball would be such a nice thing to have to know the outcome of both choices. IF ONLY!

Sunday, March 22, 2015

Spiderman Hair

Well something else crossed off the bucket list....getting his hair colored. We used the hairspray... Not as great as we were hoping, but he is happy...and that and the smile are priceless.

Thursday, March 12, 2015

Last summer Becca went to Camp Louise and every day the camp director posted what the girls did for the day. I started this post one day this summer and went back to finish it now. On that summer day I was reading the post and it resonated with me and it still does...

This is the post from the camp director:
Our Middah for the week is finding Contentment With What You Have (Samayach B'Chelko). Some people think it is hard to change how you think and feel, but brain scientists have proven that is actually not hard. Just by repeating a phrase or an idea over and over again, we can re-write our brains to believe and feel differently. No matter what you have or what you get, try repeating the phrase, "I have enough" over and over. You'll soon come to believe it and feel more content with what you have. 

Long ago, the little son of my friends and I became quite good friends ourselves. A lot of time we played with his two tiny cars, running them from windowsill to windowsill, parking them and racing them and telling each other all the while why we imagined we passed "on the road". Sometimes I would have the one with the chipped wheel. Sometimes he would have it. It was great fun, and I loved this tiny little boy dearly.

At that time these little Hot Wheel cars were avidly collected by most 6-year-old boys. Kenny dreamed of them and I yearned to buy him more, but I could not think of a way to do this without embarrassing my friends. Kenny's father was an artist and a lay preacher, and his mother was a housewife who brought beauty to everything she touched. They lived very richly indeed but they had little money.

Then one of the major gas companies began a Hot Wheels giveaway: a car with every fill-up. I was delighted. Quickly I persuaded the entire clinic staff to buy this brand of gas for a month, and organized all twenty of us with checklists, so that we would not get two fire engines or Porches or Volkswagens. In a month we accumulated all the Hot Wheels cars the made, and I gave them to Kenny in a big box. They filled every windowsill in the living room, and then he stopped playing with them. Puzzled, I asked him why he did not like his cars anymore. He looked away and in a quivery voice said, "I don't know how to love this many cars, Rachel." I was stunned. Ever since, I have been careful to be sure not to have more Hot Wheels than I can love.

Many people have too many Hot Wheels to love. It can make you fell empty. A woman who found a new life after having cancer once told me that before she became sick she had always felt empty. "That's why I needed to have more and more things. I kept accumulating more and more goods, more and more books and magazines and newspapers, more and more people, which only made everything worse because the more I accumulated the less I experienced. 'Have everything, experience nothing.' You could have put that right on my front door. And all the time I thought I was empty because I did not have enough."

The change had started with a bathrobe, one of the few things she had taken with her to the hospital for her cancer surgery. Every morning, she would put it on, really enjoying how soft it was, its beautiful color, the way it moved around her when she moved. Then she would walk in the hall. "One morning as I was putting it on I had an overwhelming sense of gratitude," she told me. She looked at me, slightly embarrassed. "I know this sound funny, but I felt so lucky to have it. But the odd part, Rachel, is that it wasn't new, she told me. "I had owned it and worn it now and then for quite a few years. Possibly because it was one of the five bathrobes in my closet. I had never really seen it before."

When she finished chemotherapy, this woman held a huge garage sale and sold more than half of what she owned. She laughs and says that her friends thought she had gone "chemo-crazy", but doing this had enhanced her life. "I had no idea what was in my closets or what was in my drawers or on my bookshelves. I did not really know half the people whose home numbers were in my phone book either, Rachel. Many of them never even sent me a card. I had fewer things now and know fewer people, but I am not empty. Having and experiencing are very different. Having was never having enough."

We sat together for a few minutes, watching the sun making shadows on the office rug. Then she looked up. "Perhaps we only really have as much as we can love," she said.

Over the years, I have struggled with accepting what is happening to my family. How PCH1A has "stolen" things from us - how it has changed Ian, Becca, Brian and I - as individuals, as a family as well as Brian and I as a couple. Going back and re-reading some of my posts, both published and unpublished, has reminded me to be grateful for what I/we have. Sometimes, being grateful for the little things helps. Going through life with a child who has a rare terminal disease has not been easy but it has taught me a lot. I am reminded that the dishes can wait, the dust bunnies can build up, things don't have to be perfect. I've won the gift of love...most of the time. The gift of giving. The gift of gratitude. The gift of understanding having and experiencing are very different. Having was never having enough. "Perhaps we only really have as much as we can love."

A Few More From Rare Disease Day

Here are a few more from Rare Disease Day


One of our Chai LifeLine Volunteers..we love you!
A Girl Scout Friend and her Mom (Below)
Another cousin....yes we have a lot of them..
Even Olf wanted to show his support!
One of my wonderful friends from college and her daughter.
Friend from Camp Milldale and beyond...we love them!

Friday, March 6, 2015

Tuesdays with Morrie

Over the past few weeks, I have been reading Tuesdays with Morrie by: Mitch Albom....for those of you who have not read the book or don't know anything about it. It is about newspaper sports columnist Mitch Albom recounts the time spent with his 78-year-old sociology professor, Morrie Schwartz, at Brandeis University, who was dying from amyotrophic lateral sclerosis (ALS). I decided to re-read the book, after a friend posted a few quotes on Facebook; forgetting that Morrie had ALS. I toyed with the idea of not reading the book as soon as it came out Morrie was diagnosed and dying from ALS, being so close to home. However I decided not to remembering the book has some meaningful insight which I wanted to remind myself of. Below are quotes from the book, I hope they mean as much to you as they do to me. I hope one day to be able to live like some of the quotes.


THE SYLLABUS
ALS is like a lit candle. It melts your nerves and leaves your body in a pile of wax. Often, it begins with the legs and works its way up. You lose control of your thigh muscles, so that you cannot support yourself standing. You lose control of your trunk muscles, so that you cannot sit up straight.  By the end, if you are still alive, you are breathing through a tube in a hole in your throat, while your soul, perfectly awake, is imprisoned inside a limp husk, perhaps able to blink, or cluck a tongue, like something from a science fiction movie, the man frozen inside his own flesh. This takes no more than five years from the day you contract the disease.


THE AUDIOVISUAL
"Accept what you are able to do and what you are not able to do."
"Accept the past as past, without denying it and discarding it."
"Learn to forgive yourself and to forgive others"
"Don't assume that it's too late to get involved."


THE CLASSROOM
"People see me as a bridge. I'm not as alive as I used to be, but I'm not yet dead. I'm sort of ...in-between."


"Have I told you about the tension of opposites?" he says.
The tension of opposites?
"Life is a series of pulls back and forth. You want to do one thing, but you are bound to do something else. Something hurts you, yet you know it shouldn't. You take certain things for granted, even when you know you should never take anything for granted.
"A tension of opposites, like a pull on a rubber band. And most of us live somewhere in the middle."
Sounds like a wrestling match, I say.
"A wrestling match." He laughs. "Yes, you could describe life that way."
So which side wins, I ask?
"Which side wins?"
He smiles at me, the crinkled eyes, the crooked teeth.
"Love wins. Love always wins."


FEELING SORRY FOR YOURSELF
I asked Morrie if he felt sorry for himself.
"Sometimes, in the mornings," he said. "That's when I mourn. I feel around my body, I move my fingers and my hands -- whatever I can still move -- and I mourn what I've lost. I mourn the slow, insidious way in which I'm dying. But then I'm done mourning."
Just like that?
"I give myself a good cry if I need it. But then I concentrate on all the good things still in my life. Of the people who are coming to see me. On the stories I'm going to hear. On you -- if it's Tuesday. Because we're Tuesday people."
I grinned. Tuesday people.
"Mitch, I don't allow myself any more self-pity than that. A little each morning, a few tears, and that's all."
I thought about all the people I knew who spent many of their waking hours feeling sorry for themselves. How useful it would be to put a daily limit on self-pity. Just a few tearful minutes, then on with the day. And if Morrie could do it, with such a horrible disease...
"It's only horrible if you see it that way," Morrie said. "It's horrible to watch my body slowly wilt away to nothing. But it's also wonderful because of all the time I get to say good-bye."
He smiled. "Not everyone is so lucky."
I studied him in his chair, unable to stand, to wash, to pull on his pants. Lucky? Did he really say lucky?

FAMILY
"If you don't have the support and love and caring and concern that you get from a family, you don't have much at all. Love is so supremely impotency. As our great poet Auden said, 'Love each other or perish.' " Without love, we are birds with broken wings.

EMOTIONS
Detaching yourself?
"Yes. Detaching myself. And this is important -- not just for someone like me, who is dying, but for someone like you, who is perfectly healthy. Learn to detach."
He opened his eyes. He exhaled. "You know what the Buddhists say? Don't cling to things, because everything is impermanent."
But wait, I said. Aren't you always talking about experiencing life? All the good emotions, all the bad ones?
"Yes."
Well, how can you do that if you're detached?
"Ah. You're thinking, Mitch. But detachment doesn't mean you don't let the experience penetrate you. On the contrary, you let it penetrate you fully. That's how you are able to leave it."
I'm lost.
"Take any emotion -- love for a woman, or grief for a loved one, or what I'm going through, fear and pain from a deadly illness. If you hold back on the emotions--if you don't allow yourself to go all the way through them--you can never get to being detached, you're too busy being afraid. You're afraid of the pain, you're afraid of the grief. You're afraid of the vulnerability that loving entails.
"But by throwing yourself into these emotions, by allowing yourself to dive in, all the way, over your head even, you experience them fully and completely. You know what pain is. You know what love is. You know what grief is. And only then can you say, 'All right. I have experienced that emotion. I recognize that emotion. Now I need to detach from that emotion for a moment.'"
Morrie's approach was to turn on the faucet. Wash yourself with the emotion. It won't hurt you. It will help you. If you let the fear inside, if you pull it on like a familiar shirt, then you can say to yourself, "All right, it's just fear, I don't have to let it control me. I see it for what it is."
Same for loneliness: you let go, let the tears flow, feel it completely--but eventually be able to say, "All right, that was my moment with loneliness. I'm not afraid of feeling lonely, but now I'm going to put that loneliness aside and know that there are other emotions in the world, and I'm going to experience them as well."  

FEAR OF AGING
Morrie had aging in better perspective.
"All this emphasis on youth--I don't buy it," he said. "Listen, I know what a misery being young can be, so don't tell me it's so great. All these kids who came to me with their struggles, their strife, their feelings of inadequacy, their sense that life was miserable, so bad they wanted to kill themselves....
"And, in addition to all the miseries, the young are not wise. They have very little understanding about life. Who wants to live every day when you don't know what's going on? When people are manipulating you, telling you to buy this perfume and you'll be beautiful, or this pair of jeans and you'll be sexy--and you believe them! It's such nonsense."
Weren't you ever afraid to grow old, I asked?
"Mitch, I embrace aging."Embrace it?
"It's very simple. As you grow, you learn more. If you stayed at twenty-two, you'd always be as ignorant as you were at twenty-two. Aging is not just decay, you know. It's growth. It's more than the negative that you're going to die, it's also the positive that you understand you're going to die, and that you live a better life because of it."
Yes, I said, but if aging were so valuable, why do people always say, "Oh, if I were young again." You never hear people say, "I wish I were sixty-five."
He smiled. "You know what that reflects? Unsatisfied lives. Lives that haven't found meaning. Because if you've found meaning in your life, you don't want to go back. You want to go forward. You want to see more, do more. You can't wait until sixty-five. 
"Listen. You should know something. All younger people should know something. If you're always battling against getting older, you're always going to be unhappy, because it will happen anyhow.'
"You have to find what's good and true and beautiful in your life as it is now. Looking back makes you competitive. And, age is not a competitive issue."

MONEY
"Remember what I said about finding a meaningful life? I wrote it down, but now I can recite it: Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning. …But giving to other people is what makes me feel alive. Not my car or my house. Not what I look like in the mirror. When I give my time, when I can make someone smile after they were feeling sad, it's as close to healthy as I ever feel.
"Do the kinds of things that come from the heart. When you do, you won't be dissatisfied, you won't be envious, you won't be longing for somebody else's things. On the contrary, you'll be overwhelmed with what comes back."

HOW LOVE GOES ON
Someone asked me a question the other day.
What was the question? I asked. 
"If I worried about being forgotten after I died?"
Well? Do you?
"I don't think I will be. I've got so many people who have been involved with me in close, intimate ways. And love is how you stay alive, even after you are gone."

MARRIAGE
"I've learned this much about marriage," he said now. "You get tested. You find out who you are, who the other person is, and how you accommodate or don't."
Is there some kind of rule to know if a marriage is going to work?
Morrie smiled. "Things are not that simple, Mitch."
I know. 
"Still," he said, "there are a few rules I know to be true about love and marriage: If you don't respect the other person, you're gonna have a lot of trouble. If you don't know how to compromise, you're gonna have a lot of trouble. If you can't talk openly about what goes on between you, you're gonna have a lot of trouble. And if you don't have a common set of values in life, you're gonna have a lot of trouble. Your values must be alike.
"And the biggest one of those values, Mitch?"
Yes?
" Your belief in y the importance of your marriage."
He sniffed, then closed his eyes for a moment. 
"Personally," he sighed, his eyes still closed, "I think marriage is a very important thing to do, and you're missing a hell of a lot if you don't try it."
He ended the subject quoting the poem he believed in like a prayer: "Love each other or perish."

OUR CULTURE
"People are only mean when they're threatened," he said later that day, "and that's what our culture does. That's what our economy does. Even people who have jobs in our economy are threatened, because they worry about logging them. And when you get threatened, you start looking out only for yourself. You start making money a g-d. It is all part of this culture. 
He exhaled. " Which is why I don't buy into it."
"He's what I mean by building your own little subculture," Morrie said. "I don't mean you disregard every rule of your community. I don't go around naked, for example. I don't know run through red lights. The little things, I can obey. But the big things - how we think, what we value - those you must choose yourself. You can't let anyone - or any society - determine those for you. 
"Every society has its own problems," Morrie said, lifting his eyebrows, the closest he could come to a shrug. "The way to do it, I think, isn't to run away. You have to work at creating your own culture. 
"Look, no matter where you live, the biggest defect we human beings have is our shortsightedness. We don't see what we could be. We should be looking at our potential, stretching ourselves into everything we can become. But if you're surrounded by people who say 'I want mine now,' you end up with a few people with everything and a military to keep the poor ones from rising up and stealing it."
"The problem, Mitch, is that we don't believe we are as much alike as we are. Whites and blacks, Catholics and Protestants, men and women. If we saw each other as more alike, we might be very egar to join in one big human family in this world, and to care about that family the way we fare about our own. 
"But believe me, when you are dying, you see it is true. We all have the same beginning - birth - and we all have the same end - death. So how different can we be? 
"Invest in the human family. Invest in people. Build a little community of those you love and who love you."
"In the beginning of life, when we are infants, we need others to survive, right? And at the end of life, when you get like me, you need others to survive, right?
His voice dropped to a whisper, "BUT HERE'S THE SECRET: IN BETWEEN, WE NEED EACH OTHER AS WELL."

AUDIOVISUAL, PART 3
…"Don't let go too soon, but don't hang on too long."
"Be compassionate," Morrie whispered. "And take responsibility for each other. Of we only learned those lessons, this world would be so much better a place."

FORGIVENESS
"Forgive yourself. Forgive others. Don't wait. ...

PERFECT DAY
...But Morrie was able to joke about his body now. The closer he got to the end, the more he saw it as a mere shell, a container of the soul....

"As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away. All the love you created is still there. All the memories are still there. You live on--in the hearts of everyone you have touched and nurtured while you were here."
"Death ends a life, not a relationship."

..."there is no formula to relationships. They have to be negotiated in loving ways, with Ron for both parties, what they want and what they need, what they can do and what their life is like. 
"In business, people negotiate to win. They negotiate to get what they want. Maybe you're too used to that. Love is different. Love is when you are as concerned about someone else's situation as you are about your own. 

So many people walk around with a meaningless life. They seem half-asleep, even when they're busy doing things they think are important. This is because they're chasing the wrong things. The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning


The culture we have does not make people feel good about themselves. And you have to be strong enough to say if the culture doesn't work, don't buy it.


"The most important thing in life is to learn how to give out love, and to let it come in."
His voice dropped to a whisper. "Let it come in. We think we don't deserve love, we think if we let it in we'll become too soft. But a wise man named Levine said it right. He said, 'Love is the only rational act.'"

Sometimes you cannot believe what you see, you have to believe what you feel. And if you are ever going to have other people trust you, you must feel that you can trust them, too--even when you're in the dark. Even when you're falling.

…NONE OF US CAN UNDO WHAT WE'VE DONE, OR RELIVE A LIFE ALREADY RECORDED. BUT IF PROFESSOR MORRIS SCHWARTZ TAUGHT ME ANYTHING AT ALL, IT WAS THIS: THERE IS NO SUCH THINGS AS "TOO LATE" IN LIFE. HE WAS CHANGING UNTIL THE DAY HE SAID GOOD-BYE.  

Saturday, February 28, 2015

Rare Disease Day 2015

According to Wikipenia, a rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population. There is no single, widely accepted definition for rare diseases. Some definitions rely solely on the number of people living with a disease, and other definitions include other factors, such as the existence of adequate treatments or the severity of the disease. In the United States, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence (number of people living with a disease at a given moment), specifically "any disease or condition that affects less than 200,000 people in the United States, or about 1 in 1, 500 people. This definition is essentially like that of the Orphan Drug Act of 1983, a federal law that was written to encourage research into rare diseases and possible cures. The Global Genes Project estimates some 300 million people worldwide are affected by a rare disease.

One way to explain the difference between a common and a rare disease is using the analogy of a car. If a car has a broken windshield wiper or mirror, you can still drive it. For most people, these are common diseases, your body still works right. However, if you have a leak in your engine, it's a much bigger problem, your body does not work right. Many children with rare disease have a defect in critical genes. These are critical processes in the body that are not functioning properly.
Thank you all for supporting our family and all the others with rare diseases.

One of my wonderful co-workers
Just the Girls of Troop 775
The beginning of World Rare Disease Day, Saturday, February 28, 2015. 
The Buffalo from Cabin Camping with Girl Scout Troop 775
Cuz...showing support
A Retired Co-Worker
Another one showing support
The Daddy of the cousin's above showing support, could not put the phone down.
One more cousin showing support for Rare Disease
And the beautiful Mommy cousin showing support before getting the kids off to school and herself off to work. XOXOXO to all the Sherman's.
Becca with one of her teachers, Mrs. M....thank you for all your support....thank you to all the teachers who have supported us over the years.
Friends for years....one of Becca's teachers as well this year. 
One of my sorority sisters....love me some Tri Sigma's.....Sigma Love and Mine...
Our wonderful friend, Jami....thanks for being a part of our village.
Thanks to Managing Multiples class 12+ years ago for bringing us together....your support Sandra has always been there...xoxoxo my friend.
Thanks Ezra for all your checking in and support.
Thanks Stevie and Michelle...and for getting the little one in as well.....
Thanks little one....mommy and daddy did a great job getting you in...as well as did Aunt Jodi.
Bar Mitzvah boy taking a few minutes out of his day to support rare diseases.
Bat Mitzvah girl taking a few minutes out of her day to support rare diseases...thanks to you and your brother.
Our friend Jodi's mom...thanks.
Thanks Val...enjoy the day and the party.
Thanks Jodi....for all support and being there....way to go on getting everyone to wear ribbons today.

Thanks Erika....all the support and weekly visits are great....
Our 1st school speech therapists....Mrs. G...I remember her putting Ian in the corner and telling him to yell at her so she could hear him...
Girl Scout love and support!
A friend from Camp Milldale days and reunited with Becca at Franklin Middle.

The support from the mom of the reunited friend!

Friends since dance days when the girls were 3!

Friends with Brian since he was a baby, thanks for all your support Jen.
Aunt Susan showing her love and support ... Always our love!
Our friend Leslie and one of her children.

Aunt Lisa, all the way from Flordia. 
Is it Karen or Mrs. F....depends on of we are in school or at our house.

Erica and her beautiful daughter...thanks to big sister Jenn.
More Girl Scout support and love...
Jill supporting her undiagnosed daughter and Ian!
Friends from high school, reunited through Facebook and at our reunion.
Friends of our friend Jodi, thanks Allison and Phillip

Mommy with the man of the day....thank you all for supporting him and all the others in the world who have rare diseases. Jeans for genes.
Heather and Marty...we love you!
Connie wearing jeans ....thanks my friend.

Karen's nieces showing their support.  
A friend of both kids, love how the kids got involved as well.
He comes to visit Ian every few months...thanks, Jake.
A past co-worker...showing her support.

A friend from high school, having her whole family wear ribbons..thanks guys.
One of our wonderful Chai Lifeline friends....XOXOXO

Another sorority sister and her family wearing jeans. 
An old cub scout and girl scout showing their support.
More Chai Lifeline friends.
Ian's 4 year-old teacher....still comes to spend time with him and now one of my closets friends.
One of my friends from college Dad and niece. Thanks for wearing jeans. 
One of our wonderful volunteers...can you tell she knows Ian well.
 Ian's girlfriends mom...thanks Jessica. My other daughter....Stephanie....we love you.
 Denise, all the way from Texas showing her support. XOXO we miss you.

 One of my co-workers....
 Another sorority sister and her family... Aunt Ali, Uncle Jeff and Jilly....
 Daddy and Becca wearing their ribbons around the house all day.
 Another Chai Lifeline friend....
Thanks Aunt Jill and Uncle David, we love you.
 My friend Sharri and her daughter. Thanks for showing your support. 
 More girl scout love coming our way.
 Love my sorority sisters....thanks....
 Our wonderful neighbors....

A huge shout out to everyone who supported Rare Disease Day....THANK YOU.

Remember to treasure yesterday, dream of tomorrow  but live for today.