… my life if nothing else is a journey!

The Journey Begins

I’m looking forward to writing and the conversations it brings.  

Do forgive my known weakness in grammar.  Praise be to the spell checker, may it never let me down!  I don’t have an Editor on staff, so please feel free to step in and offer corrections or changes.  I take no offense to complaints of voice, suicide by comma, or any other matter pertaining to construction or form.

Strength through Virtue!  This was the motto of one of the centuries old Lee Clans of Ireland.  I like it!  I strive to live up to it. 

I look forward to hearing from you.  One point of personal favor;  well, … at least one, it’s best that characterizations and twitter-class responses be saved for your favorite public wall.  Thank you in advance for thoughtful consideration.

Time to write.  Time to read.  On to my personal journal.

 

… why am I doing this journal you ask?

… Here is to a long life and life-long learning.
… Here is to expecting and honoring the antithesis.

Every now and then you read something that challenges your understandings and absent rigidity of thought your preconceived notions. I think it a benefit to friend, or simply those with a passing interest, to write about these as I’m sure many fall into the same arena as I. And, why not share!

Brother Edward, a passionate thinker and teacher introduced me to critical thinking. He once said that all knowledge went through a regular and common metamorphosis or cycle of development, of evolution if you will. This process is an ongoing cycle of thesis, antithesis, and thesis. Little did I understand then, but now adopt, that this progressive process is far and away the most constructive and timely habit of critical thinking that is practiced by humanity.

Those who profess the antagonistic approach, the one and only truth approach are fooled by claims that science comes to proven final truths; therefore, they think that truth is or must be an exclusive captive of a puritanical adherence to one scientific outcome. Were this true, then Einstein would not have challenged Newton, nor approved of those who now challenge the man himself. Think! We once knew with certainty that the Atom was the smallest component of life, now we see others.

We need to have the courage to hear and seriously consider counter-thought and submit it to testing to determine if it rises to the level of legitimate antithesis. If it should, we then need to agree we were not of folly to have believed otherwise, but merely an honest seeker of truth. To this end, I will write. I will encourage counter-thought. I will examine and re-examine. I will acknowledge when conversation and investigation compels me to rewrite. This I shall do to the day I die and be grateful that learning is a life long event and surely when it stops, I stop.

… klippel who & port wine stain what?

Was your beautiful child born with muted red and deep purple stains on their skin?  If so, are you noticing patches of color that vary in size or maybe even extend from head to toe?  When you asked the doctor, did he/she likely described these mosaics as Port Wine Stains, Vascular Birthmarks, Birthmarks or Hemangiomas?  Did your doctor give you a preliminary or speculative diagnosis, say Klippel-Trenaunay Syndrome.  In any case, I’m sure your level of curiosity is heightened because you don’t recall seeing other babies with similar anomalies.

I understand your interest.  If you stumble around my journal here, you’ll see that I have a deeply personal interest in helping kids and parents with Klippel-Trenaunay Syndrome, including Port Wine Stains a common manifestation of this congenital aberration  Born in 1954, I too had a similar mosaic of color.  My parents were equally curious.  In their day access to quality medical information about babies like us meant they were given wrong information about me. 

Good news.  Today you have access to very informed doctors these days, albeit they’re only a handful, but they’re outstanding.  Also, you will soon meet street-level friends in the World Community.  It’s a virtual (in every sense of the word) neighborhood of soon-to-be friends.  These are KT-kids, as well as their parents, who have lived through the days when little was known and therefore are motivated and happy to share the things they’ve learned along the way. 

You can also find many wonderful resources listed here as various links to support groups and doctors.  A resource created by myself with the contributions of many is made available at no charge to the Klippel-Trenaunay community – look for the copyrighted name K-T Connections.

Please count me as one of your new K-T friends

You’ll soon realize that you’re raising a her.  Your child will show you strength of character many people will never understand and evidence of that strength will be your baby passing off the difficult as routine.  I respectfully submit that given a chance at a healthy and balanced childhood your baby will see themself as simply another kid in the neighborhood.  Yes, of course there are things they will do and things they will adopt to better fit into the picture, but what kid doesn’t do that anyway.  Quite frankly, friends and strangers rarely took notice or cared to call me out on my funny looking legs.  I kid you not – I was regularly ridiculed about my big ears and big smile.  I was all teeth and ears.  These more regular distractions left m  e little time to over worry about having painted legs.

If you haven’t already, please seek out Vascular Surgeons and Intervention Radiologists who advertise Klippel-Trenaunay Syndrome in their Resume’.  The K-T Connections directory may help you get started on this endeavor.  As a general rule, avoid Dermatologists.  I mean these talented folks no disrespect, but their expertise goes basically skin deep (humor intended) and you’ll learn soon enough that Klippel-Trenaunay is a deeply systemic, deeply complex, multi-system disorder.

Congratulations on parenthood.  Feel free to ask away.

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KTS kids ©2011
K-T kids ©2011

… ” we-Willi” likes it!

 

Klippel Trenaunay Support Group [k-t.org]

… the first-in-the-world Klippel-Trenaunay Syndrome Support Group
… the pioneers of KT Suport Groups

  • Bi-annual Conference (July 2012): Rochester, MN / Open to All / Families Welcome and Encouraged / Medical Presentations by K-T experienced doctors / K-T Teen Groups / K-T Parent Groups / Coordinated with the Mayo Clinic which provides consultation and diagnostic appointments, at your option
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