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Wednesday, October 28, 2009

Nothing is gonna stop me...

And I mean, NOTHING.... Not Epidermolysis Bullosa, not the swine flu, and definitely not the inability to use my hands!

See, just typing this blog with two fingers is proof enough. I can't afford to have a disability in my hectic life! My family needs me, I need me!



I used to go about feeling sorry for myself every once and a while, coveting so-and-so's new whatever, wishing my life was like ____ (fill in the blank). But, what good does that do?!

There are legless kids who run races, and triplet mommies and kids who sell lemonade, and women running three marathons in a month to raise money and awareness for cancer. There are kids who are 6 years old taking care of their 3 year old siblings because their parents are drunk. There are elders who have lost every one of their family members who spend their days volunteering at daycares. There are mother's who have lost their children and children who have lost their momthers. They don't have time to feel sorry for themselves...they don't stop living, so why should I?

I don't have function in my hands, am still wheelchair dependent, and by tomorrow, may not be able to wipe my own butt! (It's funny, come on!) (Seriously, it is!)

But, I still managed to make these for my cousin's baby. Baby's in our family need mukluks mam! I still have use of my teeth, and for those of you who don't know, these are handsewn stitch by stitch using a skin sewing needle, mouton, leather and 39 year old sealskin.

Sure it took me five times as long and the stitches weren't as tight as usual, but who cares?!



I hope they keep him warm for at least a month...and when they get too small. I'll teach his mom how to make him more.

What have you done lately!? :)

11 comments:

Michele S said...

Good for you. You have the greatest attitude. I heart you and hope you are feeling better today.

Sabrina said...

Adorable! And those mukluks are just precious! I wish I could do something like that, but alas, I have no idea how to sew, and every time I try, it's a disaster.

Cate said...

Wow! You are hardcore and amazing. Way to keep the positive attitude, which probably makes you feel better than any medicene in the world. Thanks for your inspiration.

Mrs. Plish said...

Here is a blog that I read that can lead you to many other EB families: http://patriceandmattwilliams.blogspot.com/

and another:

http://www.caringbridge.org/visit/samanthasheridan

(((((hugs))))) to you!

jennifer said...

those are the cutest boots ever! precious.

oh I hope the drs can find a way to you get some relief soon.

The Amazing Trips said...

What have I done lately? Well ... I've consumed a hot fudge brownie sundae and a glass of champagne.

But enough about me. What's the treatment plan for you? Will those blisters subside? Was this "flare up" caused by stress - or environmental factors - or all of the above? What can be done to manage this in the future? Are you feeling better, physically?

Dog Hair in my Coffee said...

Hang tough. Sending thoughts and prayers.

Coffeedog

Anonymous said...

I am having maybe the most difficult week of my life. You are right my family needs me and I need to make the best of it and suck it up and do my best with a good attitude. Thanks for the encouragement with your positive attitude.

Wayfarer Scientista said...

Hoping you are feeling better soon! And glad you are able to keep your spirits up (at least, from what we can tell by the blog).

queen said...

I hope it gets better for you.

PegHead said...

You are really entertaining. I want some boots like that for me!