A Dress for Tess

In my blogging absence, so many changes have taken place.  Thommy went back to work for Old Navy as the store manager in Ithaca, which means we have also moved again – to.. yes… Ithaca!  HERE WE ARE.

I’ve had a spinal MRI, gone kayaking, said goodbye to Malone, said hello to a few new faces, discovered that eating a burger from 5 Guys does not mean the world is coming to an end, spent some time in the vet hospital with Riley and immediately followed that up with a trip to the emergency room with my husband.  (They put us in the same room and patched us back up together again.)  I’ve learned the difference between friends who are always around, and friends who are always there.  I’ve felt helpless as I sat with a friend who is raging against life itself.  I have desperately wanted to make it better; for her, and for me, and for my Mom, as she battles monsters that she alone must fight.

I’ve gone through one of the most difficult experiences in my 29 years.  It involves my father, and I am not quite ready to talk about it.

I’ve done a hell of a lot of crying.  More crying than I thought was possible.  All types of crying: the full body sobbing that rocks your insides; the cracked, strained crying of a voice trying to rise above the tears; the quiet, gentle weeping that only you can hear.  I have, in the past couple of months, been stunned by life.  I have felt alone and desperate. Really. Desperate.

I’ve also done a lot of reading, and followed a few new blogs.  I became addicted to – and healed by – an advice column called Dear, Sugar. You must read it.  (Bring tissues.)  Way back in February, I discovered 3x3x365, a truly beautiful collection of words & pictures.  At that time, I was right in the middle of a relapse and confined to bed for a few days straight.  I spent an entire day reading every back entry and found myself WAILING – - in self-pity, and in hope, and in awe of these friends and their views (and viewpoints).  They took me away, and above, and we soared together for hours.  One of the bloggers, Patti Digh, has been an inspiration to me since I discovered her book, Life is a Verb, back in 2009.  I wrote to her about the idea I had for my own book, and she wrote back (!!!):

“I love the idea of Recepta. And I would offer this thought … change “It is the type of book I would have hoped to…” to “It is the type of book I will…” -

I have kept that email message in my Inbox since August 4th, 2009.  Four months after she wrote that, I would be diagnosed with Multiple Sclerosis.  I haven’t updated her, but I am following her right along… constantly soothed by her words, ideas, photos, messages and her big, bright, beautiful light.  I even signed up for her book club this year, but was too sick the first three months to even get on the call, and haven’t had access to the books, or the Internet, for the last couple of months on meeting day.  I am hoping to finally “show up” very soon.

Which brings me to the point of this post.  Amy McCracken is a magnificent writer/human being/lover of animals/all around amazing woman, who also posts on the 3x3x365 blog.  Instead of summarizing, I want to just re-post her beautiful entry.  It could not have been said any better:

Brave, beautiful Tess

Brave, beautiful Tess

Asheville told me this week that Tess was going in
for a long day of testing to get a better understanding
of her “thunderstorms.”
And that Tess decided she should probably wear a dress.
She and her dad went and picked one out.
I LOVED the picture of Tess in her dress.
And the sweet reasoning behind it.
And her courage.
And someone else’s comment that they too
would be wearing a dress for Tess today.
*
Forget about all the struggling we do while we are trying our best to
understand ourselves
understand others
eat our damn vegetables
make hard changes
face difficult truths
get a colonoscopy
or a mammogram
grieve
diet.  yes.  diet.
*
What if we could all choose a dress
for such occasions.
Something pretty.
And comfortable.
And flowing.
Like Tess did.
*
What if we encouraged people to put on a dress
and do something that they have long needed to do.
It could be either
call your dad
apply for a dream job
visit the cemetery
go get your scan results
get your effing oil changed for godsake
apologize
walk
write a story
say you’re sorry
say you forgive
have that mole checked out

WHATEVER.

We could call the project  A Dress For Tess.
People could post photos of themselves
wearing a dress and doing something brave–
on whatever level they choose.
Showing themselves, and Tess, that we really can
do that which we fear we cannot.
And be as comfortable as possible in the process.
SOMETIMES IT IS BRAVE JUST TO WAKE UP.

Men are not excluded.
In fact, they are encouraged to participate.
Because, man, that would be really brave and awesome.
And any project that includes men in dresses
is bound to be totally rad and inspiring.

This project is inspired by Tess and the courage
it takes to achieve greater understanding–
about ourselves and others–
and to decide to be as comfortable as possible in the process. 

Would you participate?
Because I would love to see you in a dress.
And hear your brave stories.
Let me know here or at amydmccracken@gmail.com
and I will keep you in the loop as we gather
pictures of courage in a dress.

WOW. OK, JUST … WOW.  Does it get any more powerful?  Just when I didn’t think I was going to be able to carry my own weight, stand in my own light and carry my own heavy burden… here came an opportunity to stand tall for a brave, beautiful, courageous girl.  To show her that we are all way tougher than we sometimes think.  And usually, when we are faced with heavy opposition, difficult choices and the recognition that we are somehow “different”, that only means that we are actually superheros.  We are fierce, we are strong, we are the bravest of the brave.  And we can always choose to  remind someone else of that, if we ever really need to also remind ourselves.

So, my beautiful Tess, you are SO brave.  You are a stunning example of determination in your dress.  You are strong all by yourself, and you are made stronger by ALL the people thinking, praying, loving and believing in you.  Whether you see us, or not, we are always here.  You inspired me to put on a dress I have loved forever, but never actually worn.  You inspired me to laugh and smile and show the world what I will be facing today: the prospect of painful injections necessary now to slow the progression of lesions on my brain.  Not necessarily a fun day – but oh, what a miracle to have a choice, to smile instead of cry, to face what must be done … IN A DRESS, no less.

We can do it, my dear little friend.  We all surely can.

And if you ever need a tip to help smile wide and true when taking a photo that could otherwise be seen as sad, or awkward, it helps to have the photographer stick out his tongue, make a very loud "PPPPPTTTHHHHHHHHH" sound, and dance around a bit.

And if you ever need a tip to help smile wide and true when taking a photo that could otherwise be seen as sad, or awkward, it helps to have the photographer stick out his tongue, make a very loud “PPPPPTTTHHHHHHHHH” sound, and dance around a bit.

**AMY CREATED A FACEBOOK PAGE FOR US TO SHARE IN THIS JOURNEY FOR TESS: PLEASE JOIN HER, AND SUBMIT YOUR OWN PHOTO & STORY HERE: https://www.facebook.com/ADressForTess**

The Christmas Miracle

A strange thing about becoming a writer is the uncertainty of knowing what is appropriate to write about, and when.

I’ve been hesitant (again… surprise!) to sit down and write about what was really going on, while it was happening, lest I lose the distance and perspective necessary for accurate and honest reflection. That’s how I feel about this blogging thing; there are others whom I admire greatly that feel the quicker we can process our circumstances (without filter or rumination) the more honest we are.

But here I am the day before Christmas, sitting in my new office – in my childhood home – where I now permanently live, once again.

Ithaca did not work out, on many levels and for many reasons. There will be time for further explanation later but I want to get right to the heart of this post: one month ago, we almost lost Memere.

She had been in poor health the few months prior, and she was admitted again to the hospital the day after Thanksgiving. It looked like she might not come home – and even if she did, we were advised she probably didn’t have long. For those of you who have ever watched a loved one deteriorate to that point, you know the unrelenting roller coaster of emotion, grief, anger and pain. I made the decision not to return to Ithaca so that I could be with her during what could only be described as her “last chapter.” She was placed on comfort care in the hospital, and released that Monday, to Hospicare.

This is where the telling of my story gets a little complicated. I want to talk about how sick she really was and how agonizing it was for all of us to see her slipping away. But at this moment, in this space, I feel like that is still more her story, not mine. I am a grateful and willing participant in her personal drama that we call life. I don’t think she’d be thrilled with all of the details shared here, with just anyone who happens to stumble across my words; however, I do know she would want me to do whatever makes me comfortable as a writer – so this is what I’m comfortable telling you:

I believe in Christmas miracles. I believe in the power of prayer and positive vibrations, and the power of will when harnessed to our living breath, rather than our dying one. I believe that when a person decides to take their life as it comes, only minute-by-minute, day-by-day, rather than needing to see a much larger picture, than anything is endurable and surmountable.

I understand that one day, when it truly is her time to return to where she came from, then no amount of positive vibes, or wishful thinking, or intent prayer will be able to change it. But we aren’t there yet.

It feels a little like taking the most beautiful train ride of your life, and trying to enjoy the scenery, even though you know the train is going to go off the rails when the ride is over.

So that’s what I’m doing – enjoying each laugh, each word spoken in French (even those that I don’t understand – - *most of them*), each time she answers the phone, each hug, kiss and “I love you,” each little sigh, and each story she tells. It’s a breathtaking view I have from this new, heightened perspective. It would be foolish to miss any of these moments, preparing for a crash.

I will not open one single present this Christmas, but this gift of Grace is not one that could ever be topped. Another Christmas with Memere is a humbling lesson in the true spirit of the holiday season.

I am wishing you all a most wonderful Christmas weekend, filled with all the traditions that make your past holiday memories so sweet. I wish those of you who have lost loved ones this year the gift of their presence with you at this time, as you hold them in light and joyous remembrance. And for those of you needing to make new traditions this year, I wish you curiosity, spirit and courage to build them uniquely and beautifully, in your perfect image.

Wishing you all a Christmas miracle,

~Rhéa Junior

“I will honor Christmas in my heart, and try to keep it all the year.” -Charles Dickens

“I will honor Christmas in my heart, and try to keep it all the year.” -Charles Dickens

I Am Prepared To Go Anywhere…

…provided it be forward. ~David Livingstone

I generally don’t like resolutions, they seem like fragile things. I figure anything started on January 1st must have a predetermined expiration date of which we are not aware. This year I prefer to challenge my general attitudes and to incorporate small changes that will endear the Universe to “resolving” things on my behalf.

In his most recent blog post, (Now Here’s Resolutions) Jason Mraz made some great points about resolutions. I strongly urge you to take a glance at it and see if his musings don’t make a lot of sense to you, right now. I know I couldn’t stop shaking my head while reading, agreeing that just by changing how we talk/write about things, we are actually changing the *thing* itself. How is this for a shift in consciousness…

So often we say, I HAVE to go to work. I HAVE to pick up some groceries. I HAVE to call so & so. Making a conscious shift and using the words “GET-TO” can change everything. We GET TO go to work. We GET TO pick up some groceries. We GET TO call so & so. I hear my dad say, I HAVE to go check on your grandmother, but I know how much he loves that he can do it. I encourage him to say, I GET TO go check on your grandmother. Pretty soon, we may not have that honor.

I resolve not to forget how overwhelming Wal*Mart was to my heightened senses during the MS attack. We debated whether it wouldn’t be smarter for me to do the shopping from the safety of a wheelchair or scooter. And (as I’ve mentioned before) working is a blessing when you’ve been out on “disability” or had to call in sick WAY too many times. It makes sense that I start saying “I GET TO go to work today” and feel the blessing of it.

I had an amazing Christmas with my family. It was the best in years and I feel truly blessed. There were so many memorable moments and true GIFTS from relatives and friends. We are so loved and supported. A highlight: a quilted blanket made from my baby clothes and sheets/blankets. It was my Mom’s idea and she donated all the items to Memere for her to make… and it took her over two years! As is usually the case, the best present wasn’t a -thing- … it was this fresh sense of harmony in our household that was the strongest it’s been in a long time. I haven’t quite pinpointed exactly what caused this seismic change in *vibe* but it changed the whole atmosphere. Harmony: that’s definitely the right word.

So, whether you made a list or you’ve just decided to change your views on some things, I hope this New Year for you is magical, prosperous and above all – healthy. Remember to look as good as your outlook and to express love freely.

There are plenty of affirmations and good vibes coming up in future posts – keep checking in for those and let me know what websites you use for daily inspiration.

If you haven’t already taken note, please enjoy the rest of 1-1-11!

A new year of possibility awaits us – keep your heart, mind & eyes wide open…

“May your coming year be filled with magic and dreams and good madness. I hope you read some fine books and kiss someone who thinks you’re wonderful, and don’t forget to make some art — write or draw or build or sing or live as only you can. And I hope, somewhere in the next year, you surprise yourself.” ~ Neil Gaiman

“May your coming year be filled with magic and dreams and good madness. I hope you read some fine books and kiss someone who thinks you’re wonderful, and don’t forget to make some art — write or draw or build or sing or live as only you can. And I hope, somewhere in the next year, you surprise yourself.” ~ Neil Gaiman

“The object of a new year is not that we should have a new year. It is that we should have a new soul” ~G.K. Chesterton

********************************************
AND MY FAVORITE:
For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.
~T.S. Eliot, “Little Gidding”

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