Random Acts of Kindness

 

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With the recent ALS Ice Bucket Challenge, we have seen ingenuity lead to a spike in funds and awareness for a horrendous disease.  Fundraising for the organization is at an all-time high.  I hope, sincerely and with my whole heart, that this influx of funds is well-managed, that it gets into the hands of researchers, and that is yields major steps towards a cure for this heart-breaking syndrome.

All this awareness raising got to me this week.  We donate what we can to our church, and various charities near to us, but this week I got reflective.  I donated to ALS and three charities that were not ALS, and have nothing to do with PTEN.  My donations will not impact the world in an earth-shattering way, yet it felt good.

I’m getting my gold porch light ready for September – Childhood Cancer Awareness month.

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Other people suffer, and all of us – disease specifics not to be debated, could stand to have a cure around

But, regardless of your opinion, I think this ALS Ice Bucket thing did more than raise awareness for ALS.  I think, it increased our awareness of humanity and other people’s struggles.

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A few days ago in Costco I had over estimated my strength.  And as I wondered how I would get the chair into the car, two gentlemen came from nowhere.  Different places I might add, to work together to fit the chair into my car.

Then I received a card in the mail.  It had a check enclosed for us the for a charity of our choice, or something fun.   The handwritten note told me that Meghan and my story was impacting at least one life.  The need to keep sharing was renewed.

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And I connected on Facebook to a man who we met in Disney last year.  He and his wife and Meghan struck up a conversation on a long bus ride.  He had a service dog.  She was enthralled.  She was raising awareness of Cowden’s Syndrome.  He tried several times to send me a link to a song that made him think of Meghan.  He was finally able to get it through.  I cried.  My little girl is making a difference and this man took the time to let us know.

In the mail was a package from a friend, a former student, with a “big sister” type of compassion for my girl.  There was a letter (which wasn’t for me to read,) and a key chain for Meghan, and one for me too.

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None of these people could have known I was having a pretty tough time.  I don’t so well in chaos, and the house was absolutely upended.  In the year that everything broke, the bay window was being replaced, the house needed new… lots of things, and the leak in the pool was becoming evident.

Random acts of kindness.

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That’s why they matter.  So much.

We try to pay it forward as much as we can.  So special to be on the receiving end as well.

Whatever the cause.  Whatever the reason.  An increased awareness of others will make the world a better place.

Do something nice for no reason.  With no expectation of anything in return.  Just because.

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Locks of Love

Some time earlier in the year Meghan told me she wanted to donate her hair.

Inspired by a few stories of children with cancer, and prior to her own diagnosis  (a very mild and stable case) of alopecia areata, she knew something good could come of something so basic so she set about the business of growing her hair.

locks of love

She knew she needed 10 inches to cut for “Locks of Love,” and she was determined.

I was inspired.

So while she grew hers, I quietly grew mine too.  It wasn’t the first time she led me by her example.

And when her resolve strengthened I shared my intention with her, and we were set to donate our hair together in September.

Except mine wasn’t long enough – not yet.  And maybe that was a blessing because she got to blaze the trail.  She sat bravely as her pony tail was chopped off.  She smiled as her curly hair bounced up as if it had been waiting for the weight to be released.

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And somehow I think she grew up even more that day.  And with that selfless act, she became even more beautiful, more mature.

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So, when it was finally my turn, she held my hand.  She held my camera.  She reassured me that I had done something good.

Sometimes she is so much the grown up that it is frightening.

Sometimes, albeit rarely, she is a ten year old kid.  I am working to treasure both.

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It’s OK if my hero is 5’2”, wears a size 8.5 shoe, some of my clothes, and was born after the turn of the century right?

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She makes me want to be a better person.

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Superheroes…

In honor of the last day of September – Childhood Cancer Awareness month, I am re blogging my own post from January of this year.

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I saw superheroes today.  Not the kind that normally come to mind.

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The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.

None of them had capes.  And they weren’t any funny colors.

None of them could fly, and yet I am sure that’s what they were.

I saw young bald superheroes with smiles that could light any room.

I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.

I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.

I had a lot of time to watch them.  We had a long wait this morning.  And even as I kept Meghan distracted, my eyes never left them.

They navigated the floor like…

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Stuck in the middle

The  sermon in church this morning had many parts.  And I am never sure if what I take away is the intended meaning, but the idea of being “stuck in the middle” spoke to me.

I don’t mean it in the sense you might think.

See, we are not poor by any means.

We are not rich by any conventional standards either.  But, if you asked a person who lives in poverty – well to them we would likely be affluent.

It goes back to a concept that I think about a lot.

It’s really all about perspective.

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There are many angles to every situation.  The angle, or the lens you choose to view it from determines the outcome, and to a large extent the path you follow.

Now, as my daughter and I live with Cowden’s Syndrome, and all its ruthless cancer causing, malformation growing, pain invoking perils, I do NOT mean that if I look at things the right way, or if I am positive enough that that is any guarantee of good health.

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What I do mean is that HOW we handle, not only the illnesses we encounter, but the threat of those illnesses will largely determine who we are, our level of happiness, and the effects we have on the people we encounter every day.

We have all been blessed.  We all need blessings.

The middle can be a powerful place to be.

There are choices to be made every day.  These choices change our lives, and the lives of others.

September is Childhood Cancer Awareness Month.

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The fact that childhood cancer even exists is appalling.  Meghan and I live with the imminent threat of cancer in this house every day.  I don’t go a single day without remembering my daughter’s namesake, my cousin Meghan taken from us by Leukemia at the age of 6 over 20 years ago.  But, we could bury our heads in the sand, or we could choose to try and do something to make people realize the number of lives touched by childhood cancer.  We can quietly hope it doesn’t happen to us, or we can help the people it HAS happened to.

Friends of mine chose the latter this week.  They scheduled a “Cookies for Cancer” fund raiser, and are donating over $1000 to childhood cancer research.  I couldn’t be more proud to call them friends.  They said we were their inspiration.  I find them pretty inspiring.

October is Breast Cancer Awareness month.

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I know very few people unaware of Breast Cancer.  As a matter of fact some have become sick of seeing the marketing connected with “Pink Ribbons” everywhere you turn.

Breast cancer is an ugly reality.  Mom is still fiesty, many years after her battle.  Breast cancer messed with the wrong woman there.  And me, well, my scars have healed, and I have found all the benefits to these replacements I have to the “superfluous tissue” that was trying to take my life.  I cringe when I think of my daughter, and the foreboding reality that this will be part of her journey.

Choices.

I choose to empower my daughter with stories of strong powerful women.  Those she knows and those she does not.  I choose to teach her about early detection, awareness, and victory.  Together we are empowered to TALK about our story.  The more people who hear about Cowden’s Syndrome, the more people will realize.  Lives can be saved.  Breasts, well maybe those can’t be saved – but let me tell you about the freedom of being almost 40- perky, and often braless.  I’ll bring you over to the bright side.

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Choices.

Meghan’s health has been a struggle since birth.  Our treatments for her have evolved over time.  Long before we could afford it we took a credit card and a trip to an integrative medicine doctor who is still a huge part of our lives today.  We learned that for her, pure, natural, gluten, dairy, and soy free food was as necessary as sneakers and clothing that fit.

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Slowly we evolved into a house that ate better.  We took what we had learned about Meghan’s needs and transferred them to our own.

Except habits die hard, and in the months following our Cowden’s Syndrome diagnosis, and my mastectomy, and hysterectomy, my husband ate his way through the stress to the unhealthiest I had ever seen him.

Realizing we need him- healthy — all the time.  We connected with Isagenix, initially to help him lose weight.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

Well he did.  Fifty pounds.  And its still gone.  And then I read and read about the company and things came together for me.  I realized everything I had learned that Meghan needed was here, all in this organic superfood.  So we bought her some too.  And then there was stamina and endurance to complete workouts in the pool.  So my husband told me it was my turn.  Nutrition, simple, quality.

Choices.

The first 10 months on Isagenix we told no one.  Then we felt guilty NOT telling everyone, about the health we were experiencing,  The first year we paid for the products, and sacrificed where we could.  Now, Isagnix pays us because we share what we have learned and experienced.

This week Meghan’s pain was bad.  So much so that she was finding it difficult to walk on Friday.  We are trying desperately to lower her NSAID medication, but her body won’t allow it.

Friday I was discouraged – and inspired.  Stuck in the middle I guess.  I was so heartbroken for her agony, and so proud of the tenacity to get into the day, and DO IT.

Choices.

They are tough to make.

We are faced with countless ones each day.

The choices we make are directly connected to the quality of the life we live.  Our desire to do the best we can with what we have, where we are – essentially defines WHO we are.

Maybe we aren’t “Stuck” in the middle, but rather placed there gently through grace.

Choices.

Perspective.

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One of a kind…

It probably started in the spring.  Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org)  The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991.  She wanted to make her connection to the fundraising personal.  As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color?  She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer.  So, she took out her iPad and a quick search found us gold.  The gold ribbon was the color for childhood cancer.

 So we headed to Michael’s and bought up as much gold ribbon as we could find. We bought lots of safety pins.  We set to work cutting and pinning.

We dropped baskets off with my Uncle Chris and cousin Katie (“Angel Meghan’s” Dad and sister.)  They were eager to help, and passed baskets off to friends of theirs.  Before we knew it we were making more ribbons, and more bookmarks.

Meghan was so absolutely thrilled to raise over $500 for the project.  It was such a huge success and we were so proud.

That project raised her awareness of her ability to do for others, and helped her confidence so much.  It also made her aware, acutely aware, of cause ribbons.  She would identify the ones she knew, like the pink ribbon for breast cancer, and she would look up ones she didn’t know.  She learned about the puzzle piece for autism, and even yellow ribbons being used when soldiers are away from home.  I think that is the project that truly got her using a search engine too.  (Thanks Mrs. Azzarello!)

It seemed only natural, that months later, having watched me receive pink ribbons after my breast cancer surgery, and after countless surgeries and appointments of her own, that she would ask what “our” ribbon was.  Not sure of course exactly what she meant, I had her clarify.  “What is the ribbon for genetic diseases?”

So back to the search engines we went.  We tried a few other places. but eventually decided that this was the one.

It made sense.  The Global Genes Project had a logo that reflected her cause.  This was the ribbon for Rare Diseases – genetic disorders like our Cowden’s Syndrome.  It Made sense, their saying, “Hope – It’s in our genes” was catchy enough, and it left you thinking about the connection between genes, and jeans – the denim ribbon.

The next question should have had a simple answer – but it didn’t.  She said, “Can I have one?”

Once she clarified that she needed something, something to represent her, and all she has gone through, I understood.  She needed a symbol, something to wear that would make it easier to talk to people, that would help her feel proud, and strong, like it all mattered.

Sure, I thought.  We will get you something.

Well I looked, and I looked, and I looked.  There was nothing.  Beyond the sticker I had gotten as a thank you when I sent a contribution to The Global Genes Project, I could find NOTHING for her to own or wear, no jewelry or clothes with this “denim” ribbon.

Well sometimes the best ideas are born out of lunchtime conversation.  So, as I sat with some teacher friends the next day, I recanted Meghan’s desire to have her own cause ribbon.  One friend, the pure hearted Mom of an autistic son, who was wearing a beautiful diamond puzzle piece around her neck, “got it” on so many levels.  And, her husband happens to be a jeweler.

She said, “give me what you have, let’s see what we can do.”

Well I think we all thought it would be easier than it was.  But after weeks of searching her husband determined that there was nothing, anywhere like what we were looking for.  If we wanted it, we could have it, but they would have to make the mold.

Fortunate to have good and generous people in our lives, we paid only for the cost of the creation of the piece.  My friends husband generously donated his time, because he too “gets it.”  Their goal was only to make my girl happy.  And for that I am so grateful.

After anxious months of waiting, the piece arrived last Friday.  She treats it like a rare gem.

It is RARE, a one of a kind beauty – just like my girl.  But, never staying focused on herself for too long, she thought – wouldn’t it be nice if we could do a fundraiser, and sell these so that we could raise money for The Global Genes Project?

Well, last Friday we sent them an Email with several pictures.  It is a crazy time of year, but we are anxious to hear from them, and hoping that Meghan’s idea, can benefit many others.  It would be fitting.  That’s just the kind of kid she is.

For now though, the necklace is “one of a kind,” just like her!