Allison H. – My second child to honor.

When I read Allison’s story, a few things struck me right away.

The first thing was that after being diagnosed at the age of six and spending 18 months in treatment, she celebrated a remission - for 3 ½ years.  3 ½ years of getting to be a child again – then she relapsed.  I sat and thought about that for a bit.  How many different emotions did not only she go through at that point but also her parents. 

The second thing that struck me was that it seems that her page has not been updated in a while.  Her age states she is 16 but her paragraph states she is in 7^th grade.   Wondering if she missed so much school or is her page dated?   I couldn’t help but wonder what is going on with her today.  Is she in remission again?  Is she in treatment?  I began to think that I would bypass Allison and continue on to a child whose page seemed to be current.

And then I read the last sentence. 

“Bald is beautiful.”

And I really looked at her picture.

There she was - her innocence and her smile, her sincerity and her gorgeous head.  Eyes that have seen way too much for her age staring back at me – my heart melted and my decision was made. 

It doesn’t matter how up-to-date Allison’s page is –

I am shaving in honor of this beautiful little bald girl.

It wasn’t until I went to click off of Allison’s page that I noticed that she was treated at the Floating Hospital for Children at Tuft’s in Boston. 

It took my breath away.

I spent one of the worst weeks of my life living at that hospital back in 1986. 

My daughter Amy had a life threatening illness that required a week in intensive care. 

Some things in life are just meant to be - this is one of those.

   

Me and My Call......

So here it is, the paper that printed my press release.
And can I ask - how appropriate is it that the entire paper is PINK for breast cancer awareness?
I love it!

Honoring Kaiden

When I was deciding who to honor as I shaved my head, I spent a night reading the stories of all the St Baldricks children who are from Massachusetts.  Immediately Kaiden's picture drew me in and I knew that I would be shaving in honor of little SUPERMAN.   What I did not know in those first few moments, was that Kaiden did not win his battle with cancer. He died on October 27, 2004, a mere 8 months after being diagnosed.  

Kaiden was just 8 months old when his parents suspected that something might be very wrong and their worst fears were confirmed when they found out he had an agressive brain tumor.  The following months were filled with surgeries, treatments and the hope that he could overcome this disease that was trying to take control of his little body.

As I read his story, I tried to imagine what it would have been like to have received that news when one of my children was 8 months old. 

I tried.  I just couldn't do it.

You see, when my babies were 8 months old, I spent my time teaching them how to wave bye bye.
I introduced them to new foods at dinner time.  I watched them crawl their way around the room.  I helped them stand at the coffee table and shared their pride and sense of accomplishment as their knees buckled and swayed.  I excelled at getting them to laugh and if I was really lucky, I could get that belly laugh going, the one that always tickled my funny bone.  I watched their eyebrows furrow as they heard "no no" for the first time.  The last thing I did every night was stand at the side of their crib making sure that their little chest was going up and down, signalling that they were still breathing. 

So as I sat reminiscing, I couldn't imagine what it must have been like for Kaiden's parents to watch their little boy fight as hard as he did.  And not only did they not get to enjoy all of those little moments that I just spent time remembering but they also lost the chance to see him grow from a boy to a man. 

I am shaving my head in honor of Kaiden.
In honor of Superman.

Honoring.......

Over a year ago, when we first heard of St. Baldrick’s, I decided that when I shaved, it had to be in honor of someone.  I needed to make this personal for me.  I can remember wracking my brain trying to think of a child that I knew whose life had been touched by cancer.  We had no one in our immediate or extended family. 

Over the course of this past year, I continued to postpone planning for my shave as I searched for a child to honor.

There was one little girl at my sister’s church and I asked my sister to approach the family with my request.  That didn’t work out for it wasn’t the right time for them to subject their daughter to scrutiny such as I was looking for. 

I then asked my sister in law who is a pediatric nurse if she knew of anyone I could approach.  She did some research and came up empty handed.

A friend of my daughter is in nursing school, and again the request went out but returned with the same response.

All the while, time was passing and my shaving was getting postponed until one day it hit me like a ton of bricks.   Here I was getting depressed because I couldn’t find a child who had cancer.  How crazy was that?  It took me months to realize that THIS WAS A GOOD THING, not a problem.   

Imagine ------    no one in my circle of influence knows of a child who has cancer. 

According to the statistics, every 3 ½ minutes a child is diagnosed, so knowing no one is pretty remarkable.

After taking a moment to consider how grateful that made me, and how sorry I was for all the families that are not as blessed as I, planning began for my big shave.  I have found a way to make the shave personal for me and I will be shaving in honor of some very special people.  Over the course of the next few days, I will be profiling them here on my blog and I hope that you will be as touched as I with their stories. 

Self Doubts....

Funny thing happened on the way to the event..........

I had a hall donated to me for my event on the 10th but when they read the agreement that the St. Baldricks Foundation supplied, they decided that my event was something that they just didn't want to host.

??????

Of course, that is a perfect opportunity for my self doubts to try to take hold. 

And try they did.....  I spent the next half a day with this type of negativity looping through my brain:

Well, there you go - I knew this wasn't going to work from the beginning......  you never should have started this whole thing...... you are going to have severe egg on your face ......  who do you think you are, trying to put together something like this?....... Now what are you going to do - hot shot?.......  no one is going to help you now......  Why did you think you could put together an event in three weeks time?......  even though we live in an instantaneous world of the internet, most people don't live that way - so three weeks is an impossible amount of time.......   and what about all those comments you are getting from people as they look at you with a look that speaks volumes "ARE YOU CRAZY? WHY WOULD YOU SHAVE YOUR HEAD?......  am I crazy? ........  UGH!!!!  (and back to the beginning ----  Well, there you go - I knew this wasn't going to work from the beginning......) 

And JUST when I was having the BEST time in my personal pity party for one, I got the following email:

The biggest mistake you can make is to do nothing because you can only do a little.
Today, act on your impulses. Don’t second-guess yourself.

Wow......

Just what I needed to hear.

Due to some TREMENDOUSLY wonderful people who believe not only in me but in this cause, I have already raised $260.  That is WAY more than I had at the beginning.  And if that is the extent of my fundraising - it will be more than worth it. 

Because I believe in this.  And every little bit helps in the big picture.

So, I have changed that negative loop to a more positive one and I am rallying.

I have once again found my "it is what it is" mantra and I am determined to find a spot that will be as receptive to me as I am grateful for them. 

Which brings me to the quote I picked for my wall today and says it all  ===>

               Your only obligation in life is to be true to yourself.   ~Richard Bach

LOVE IT!!!!

A rock pile ceases to be a rock pile
the moment a single man contemplates it,
bearing within him the image of a cathedral.

~Antoine de Saint-Exupery

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Choice……..

Three weeks from today. 

That is when I will be losing my hair. 

Funny thing, but it seems to bother those around me more than it does me. 

My husband initially said – “Good~! Go for it!  It is a great cause.” But last night he said that he thinks he is going to get a shirt made that says – “Love is blind.”

My sister has been supportive throughout but last night said “you do know we come from a long line of “not good looking” heads?  What are you planning?  To wear hats, scarves?”

My friends look at me with a look I can’t quite decipher to go along with the query

“Really? You are REALY going to shave your head?”

I think that everyone is starting to realize that I am going to be milling around them, bald and they are not sure how to feel about that.   

I have not dwelled on it.

A year ago, when I made the decision to do this, it was instantaneous - I knew I needed to help.  The decision came from within and felt right.  I have not once, since that night, really focused on how I am going to feel bald or how I will look.  I know it will not be attractive, I know that I will resemble Ziggy with a double chin, but that really isn’t what this is all about.

I have tried to think instead about the women and children and of course men out there who have no choice in the matter. They lose their hair in what must seem to them the ultimate in a series of indignities as they deal with the treatment for the disease which can be at times worse than the disease itself. 

They don’t have a choice.  Their hair starts to fall out in clumps until they wear hats to cover the gaps or they shave their heads to make it look even.  Their baldness is forced upon them.

Then they have to deal with the public, sometimes whispering and pointing, sometimes just plain staring but mostly insensitive to that individual’s plight - the fact that they did not choose to lose their hair and would much rather NOT have to deal with this particular side effect. 

I choose to lose my hair.

I choose to shave my head in solidarity with all those who don’t have the choice.

I choose to shave my head to raise money for research.

Every little bit helps and one day we will get to the place where everyone has a choice.

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It is not what you are that holds you back, it’s what you think you’re not.

~Denis Waitley



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