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Sunday, January 24, 2010

Jonah's EB Auction

There is a cute little boy by the name of Jonah, who has Junctional Epidermolysis Bullosa and is almost 1 year old!  To help celebrate his birthday and to raise awareness and financial support for the EB Organization, DebRA, a friend of his mom is having an auction during the last week of February. So check out the web site Jonah's EB Auction for more info!

2010 EB Patient Care Conference

DebRA's 2010 Epidermolysis Bullosa Patient Care Conference is taking place from Wednesday, June 16 - Saturday, June 19 In Cincinnati, Ohio.  The conference and all related activities will be held at the Hyatt Regency Cincinnati, 151 West Fifth Street. It is going to be a great PCC with excellent speakers, interesting topics, meeting up with old friends and making new ones.
Learn more »

Monday, January 18, 2010

A life time ago....

Today I was cleaning and attempting to organize and file a lot of paperwork.  I came across a tub of my stuff from high school and college.  I looked through it to see what was inside.  I came up on a journal that I had kept the first 2 years of college.  I decide to skim through it for a few minutes (which turned into close to an hour!) reading old entries.  All those days and events and people I wrote about seemed like a life time ago and in some ways it was a life time ago.  There were a lot of things I remembered but many things that had long been forgotten.  One the ironic things was that some of the "big" events and moments from those days occurred on dates that would later turn out to be bigger days in the years to come; such as my wedding day; the birthday's of some of my kids and of all days, Garrett's Angel day.  If I had only known then what was in store for the years to come!

Sadly, only a few of those friendship from back then are still intact today...  people change; events change people; situations turn out differently that you expected..I suppose it's the normal part of life, but re-reading all those entries made me realize I did some pretty dumb things back then and made some poor decisions....most of which only hurt me in the end.  But I supposed I learned from those mistakes and hopefully become a better person now than I was back then.

Its hard to believe its been 13-14 years ago since I started college!  Back then it was about homework and grades; working; hanging out with friends; chasing after a certain guy who broke my heart more times that I can count, yet I still hope he'd wake up and see that what he was searching for was right in front of him the entire time...............he never did.

Now my life is being married to a wonderful guy, changing diapers; helping with homework; laundry, laundry and more laundry!  Cooking meals; working; bow making and helping those with EB.  That is probably the biggest thing that has changed.  Though I had EB back in college, my life didn't revolve around it.  I had never met anyone else with it (it was 21 when that occurred) and now today, that (EB) is my life!  Caring for Sami, (and missing Garrett) reaching out to other EB families, running EB support groups and web sites.  Had someone told me 14 year ago that today I would be married, living in another state; have three children here on earth and two in Heaven, still working for Target and doing all the other things that I do each day, the only thing I would have believe was that I'd still be working for Target! LOL

I was trying to find a song that fit this post...and the only one that i thought fit the best is "The Dance" since it fit my life back then and it fits my life as it is today.  So I'll leave you with those lyrics:

"The Dance"

Looking back on the memory of
The dance we shared 'neath the stars above
For a moment all the world was right
How could I have known that you'd ever say goodbye

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd have had to miss the dance

Holding you I held everything
For a moment wasn't I a king
But if I'd only known how the king would fall
Hey who's to say you know I might have changed it all

And now I'm glad I didn't know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I'd have had to miss the dance

Yes my life is better left to chance
I could have missed the pain but I'd have had to miss the dance

Saturday, January 16, 2010

Butterfly Bows

Butterfly Bows has some new bows for 
the new year available!  Head on over and 
check them out!

OTC Medication Recalls

Just wanted to pass this along:

Some Tylenol, Simply Sleep, Motrin, Rolaids, and Benadryl products have been recalled within the past 24 hours:

Tuesday, January 5, 2010

R.I.P. Abbi

Just when I thought we had reached the end of the wave of EB deaths, we are hit by another one.


Girl loses battle with rare skin disease

Sunday, January 3, 2010

Baby Leah

December was a bad month for those with Epidermolysis Bullosa (EB).  I learned on Thursday, that Leah got her wings.  She was 10 months old and had Junctional EB.  Her death was quite a surprise.  She had just had g-tube and dental surgery the day before and was doing well after wards.  But apparently her little heart could take it anymore and it stopped working early Thursday morning.  She was the 3rd one that I knew of who got their wings in December. 

You can visit her blog here: