So You Think You Can Dance . . .

Haven't posted since just before Thanksgiving - the holidays kind of snuck up on me and it's been all I can do to keep up with all the goings on. Hope everyone is enjoying the season and making merry as best you can!

I've continued with my walking practice - twice a day, a half mile each outing, three times a week. It's been tricky since winter is finally upon us, and we have snow on the ground and ice everywhere... I have to walk slower and more cautiously - but it's been wonderful to get out in the fresh air.

Wish I could say my progress is moving foward in leaps and bounds, but truth is - it's more like doing the Cha-Cha : Three steps forward, three steps back with a little side step every few beats.

My limb is definitely healing. My body is getting accustomed to the prosthetic. My brain is figuring out how to get things done in ways that test my imagination and my patience :)

First the Three Steps Forward:

1) Remember the 45 minutes dressing ritual of a month ago? I got it down to less than 15 minutes!!

2) And the Salt issues I worried might plague me forever???? Now I can eat a whole Papa Ginos cheese pizza without having to do the "Ugly Stepsister trying on the glass slipper" routine to get my prosthetic on the next morning! Bring on the Chinese Chicken Wings and Crab Rangoons!!!

3) Every day something new (and wonderful) happens - and I discover that I can do something I couldn't do just the week, or day, before. Like sit cross legged like a lady, or take a step up onto the sidewalk with my fake foot leading.... or manage to get to the phone before it stops ringing! It's amazing.

Now the Three Steps Back:

1) My prosthetic just doesn't fit right, and it's too soon to get a better fitting one made. That makes for less stability which means I am more wobbly than I should be and my limp is outrageous. Think Marty Feldman in Young Frankenstein.

2) While I can do more things, I've learned that many things are better done without the prosthetic - the NFB is cumbersome, tiring and inflexible - I've learned that I can pop it off and scramble around more quickly and safely when doing things like housecleaning, wrapping gifts, making the bed, ect., but it's difficult for other people to watch. They don't want to be reminded that I am limbless. So I find that I am sneaking around doing my thing when no one is around to feel sorry for me. While I'm reveling in my ability to do things for myself, no matter which way I do it - I am subversive about it. It's more than living a double life - it's more like a triple life. Susan on Crutches, Susan with a Prosthetic, and Susan the Side Show Freak. ; )

3) Being able to get around better means people (including myself) forget what a struggle it is and expect that I can do things I simply can't. I can walk up an incline, but I can't walk up stairs or downstairs, but one at a time like a toddler. I can walk around a large store if I hold on to a cart, but I'm slow as molasses and elderly shoppers and harried moms just smash their carts into me if I hold them up more than a few seconds. I can wear my prosthetic for hours at a time, but at some point I have to take it off and rest the limb - but it's frowned upon in a movie theater or a restaurant. So I don't get out much more than a few minutes at a time and I can't stay anywhere for very long.

Now the Side Step :

I've recently been diagnosed with depression. Yep, me - Ms. Positive Outlook - Ms. Pull Yourself Up By Your Boot Straps - Ms. Ain't Nothing Gonna Knock Me Down. I wasn't looking for a diagnosis, and I fought it as strenuously as I could. Drugs and therapy are recommended. I am still not convinced and will have to talk to my primary care about it in January. That's all I wanna say about that. Sidesteps are the trickiest part of the dance to learn . . .

And so, who knew you could dance the Cha-Cha just four months after losing your leg???? :)

I've asked myself why the Endurance Team Event is so important to me right now when I have so much going on just figuring out how to be me . . .

And I have several very important reasons:

So many children, and adults - and their families - are living with NF1 - too many - doing the best they can to have happy productive lives in spite of this condition. My friends here with pseudorthrosis of the tibia are closest to my heart . . .

Jade - who is beautiful, 21, and has psuedorthrosis of the tibia as well as a shunt to relieve fluid in her skull. She'll be having yet another tibia procedure in Jan. She writes me that she knows she is traveling the same road I have and is facing the ultimate question about keeping her leg.... this young woman who like all young women is wondering about her place in the world - getting married perhaps, having children, a career, an independent future - and unlike most other young women, her NF1 makes her future seem very distant and precarious.

And there's Emma who is 7 years old, and is heroically battling a brain tumor as well as psuedorthrosis of the tibia.

There's also 4-year-old Kieran whose little tibia is bowing to the extreme, and whose Supermom works so hard to take care of him and his brother William (both have NF1) - while worrying constantly about what lies ahead for her little boys.

Shaylyn - the brave 6 year-old, whose family has struggled and worked so hard to find a doctor and facility who can treat Shaylyn's pseudorthrosis in a way that is best for her. For them quality of life quite literally means doing the most difficult thing imaginable.

And 2-year-old Ayden who is going on 12 ; ) She is amazingly spirited and doesn't let her pseudorthrosis stop her from exploring her world even though her leg is braced and hurts terribly at times.

Darcy is 14 and having an Ilizarod Frame procedure very soon - his family's faith keeps them strong and his positive attitude and resiliance is inspirational - he has a future full of promise.

Sweet Melissa - whose memory I will walk in. A beautiful, amazing little girl who was taken from her family and friends too soon because of complications due to NF.

The 5k is important to me because I was once one of these kids, growing up with pseudorthrosis, surgeries, facing amputation and an uncertain future. My journey with pseudorthrosis is almost at an end. Walking the 5K event for the NF Endurance Team on my year anniversary will be my closure and a new beginning. But these kids, and so many others, are just starting out on the path - and so I want to do it for them because they deserve better options and a future with more certainty and hope.

I hope my family and friends will support the Children's Tumor Foundation - when I come A'knockin on your door asking for a donation. Money is tighter than tight - but put your change aside for a bit - in a jar or a can - and maybe by the time October rolls around you'll find you have $10, $20, maybe even $50 dollars or more, that can help fund research and education and all the good things that the Children's Tumor Foundation does.

Thanks for coming along on this journey and Happy Holidays!!!!