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Thursday, March 17, 2011

The Last Lecture

This blog is actually about a conversation I had today with a family memeber I love dearly.  This is a blog for her.... and for my children ... and for you.

Here is the thing.  My family has a few genetic issues.  And .. believe it or not, these genetic issues don't have anything to do with the 4th Chromosome.

First - my family has Van der Woude Syndrome.  This is an inherited genetic mutation that occures on the 1st chromosome, but only in 1 gene.  (Alexander is missing many genes on his 4th Chromosome.  Van der Woude is often fairly severe physically - a cleft palate, a cleft lip, and lip pitts.  It is also very rare. In my family, we do not carry or pass the cleft lip.  We do, however, cary and pass the cleft palate and lip pitts.  And it is very common.  In fact - I was born with both the cleft palate and lip pitts.  Both have been repaired, but often my lips seem chapped (this is why.)  Many of my uncles, aunts, and cousins also have some part of this genetic abnomality.  It really is nothing. A big fat nothing.  A surgery no more invasive than having your tonsils out can fix this.

Second - and more serious - is a genetic disorder discovered in my grandfather.  It is a form of Peripheral Neuropathy.  This specific PN is genetically passed and it only occurs in families of German Discent who can trace their roots to PA or Ohio.  Talk about specific!

Watching my "Pappy" die from this disease was one of the hardest things I have ever done.  It was a defining event in my life.  Peripheral Neuropathy literally eats the muscles from your limbs inward.  The muscles are what allow you to move - so begining with the fingers and toes and working in - parts of your body will no longer follow your brain's commands.  It is a slow process and, I believe, painful for all those involved.  Eventually, the Peripheral Neuropathy will attack the heart - the life muscle, and you die.  The end. Late August, 1997.  I didn't even need to look the date up. It changed my life that much. *I love you and miss you Pappy*

Back to the heart of this story. My cousin is getting older.  She is such an amazing person.  She has a great heart and great character.  She wants her dad (my uncle) to be tested for this genetic abnormality.  I remember when I wanted my dad (they are brothers) to be tested.  And we had a long heart to heart about this "testing" process / idea.  I shared with her my ideas on the tests... and I would like to record them here.

I said Don't Test.  Here is why - it is not like Cancer where an early test can cure it. The test will only confirm or deny the existance of the gene. If that gene is present - we all know what the eventual outcome of this means.... we saw it happen with Pappy.  She said, "I know. I want to know.  I don't want to go away to college and not know."  To which my answer was, "WHY?"  "What difference does it make?"  "Will it change anything?" "Will it change the way you look at him / feel about him - for the better?" "Or will it just create fear and panic in your heart?"  "Will it just make you look continuously for signs the disease has presented itself?"

I then asked her a very important hypothetical question.  "Would you want to know when you are going to die?"  She was very reflective and answered "yes."  So I pulled some random date out of my pocket.  I said, "April XX, 2015.  Now what?  How does knowing that date change your life?"  She again paused.  You could see the wheels turning (did I mention that I love this girl?) and she answered that she would do things differently if she knew when she was going to die.  So my final reply was, "WHY?"

No one knows. We were not meant to know. Why would you act differently?  Isn't that how you should be acting now? I look around at all the struggles in the world.  I see the people who's lives are changed in a minute. I read on Facebook all these posts about the signs of the End of the World coming.  Who cares? I don't mean this in a flip sort of way ... but:

"Why aren't you living life to its fullest now?  Would you really have regrets if today was your last day? If this answer is yes, then .... fix it."

Thus the essence of our conversation today.  I felt led to share this with you because I also was asked to sit in the library this morning while a kid took a test.  Although watching him take the test was fun, (sarcasm) I decided to scope out a book to read.  Our librarian helped me pick one out - I said I wanted to read something inspirational.  She immediately went and pulled out the book The Last Lecture by Randy Pausch.  I actually started to read the book last year when I was pregnant and never finished it because ..... life. There is also a youtube video of his last lecture.  It is powerful. It is meaningful.  It is inspirational

Here is the video if you have about an hour :) 

The point of this blog - and the point of our conversation is this.  Modern medicine can only do so much.  It can tell us some things. It can cure some things. Some things it cannot.  Some things are still left in God's hands and some things are left in ours. 

I don't want to know when my last day is.  I want to believe it could be tomorrow.  That way I can remember to be a good person today.


At March 17, 2011 at 6:01 PM , Blogger Mihaela said...

I love this Japanese saying- Tomorrow does not exist. So true. I wish I could live my life like it. Live it in the now, be present NOW and not think about the future. This is my daily fight and struggle.
I love this post.

At March 17, 2011 at 6:04 PM , Blogger shauna said...

Kristen, I absolutely LOVE reading your blog. I think your words are inspirational to me. You always kinda wake me up and make realize certain things. I think you are an amazing person and mother, I think your view on life is beautiful. I also do not want to know my last day..and I do try hard to live as if today was my last. Thank you for posting this..I really needed it:)

At March 17, 2011 at 9:38 PM , Blogger FlipScript said...

I love The Last Lecture...I even use it in my English classes. The first charm on my Pandora bracelet is one of the Buddha-- to help remind me to just take life one day at a time and live in the present. It is a lesson that never gets old.

And I think that you could definitely...and should become...a professional blogger. You certainly have the ability to inspire! xo

At March 18, 2011 at 3:38 AM , Blogger Laura said...

You have such great perspective Kristen- and OFTEN remind me to be the best me I can be. I absolutely LOVE The Last Lecture, and wish it were "required reading" for everyone :o)
Oh, and I agree you could definitely do the professional thing. I know you love teaching, and you still would be, you'd just be teaching more people at a time...


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