So many fairy tales

December is time for fairy tales when different worlds briefly align.

We made it to Ireland, seizure free, with the prerequisite hassle that only seems worth it once you get here and see the faces of those you love emerging out of the beautiful Irish mist. Ellie is taking her usual 1pm nap on Dave in the living room by the light of her auntie's tree. And so we begin the slow transition to Irish time that includes being awake while others sleep. But this post is not about that. It's about fairy tales.

I read recently that Einstein said that if you want your kid to be creative, have them read fairy tales and read some more fairy tales.

When I was little my mom, a librarian and teacher, would bring me and my two sisters to the library a couple times a week. I loved our library. It was made of a yellow gold brick and was shaped a bit like a castle. The children's room was a huge circular room. And it had a book shelf that went around the wall and half way up with a bench right at the bottom and the top was lined with these huge arched windows. The ceiling was a high dome that reflected the light softly down onto the circular rug below. It was a beautiful room. A cathedral to the imagination. My sisters and I would take out stacks and stacks of books. In fact they created a book limit because of us. 21. That was how many books each of us could take out at one time. My mother was a wonder of organization to not have had to mortgage the house on late fees.

The other thing I loved about this library is that they had an unending supply of fairy tale books. There was a slew of them named after all the colors on the spectrum each filled with loads of tales, The Red Book of Fairy Tales, The Blue Book of Fairy Tales, The Golden Book of Fairy Tales, and so on. These books had no pictures, not even on the cover. I made my way through all the colors - probably over 50 or so each 2 inches thick. I loved them. Tales of princesses who discover secret underground worlds where they have to cross great watery underground lakes on boats propelled by swans to escape a horrible fate laid upon them by their father king. The ever present struggle for freedom and identity and love. All so romantic and colorful and alive in my mind to this day. Danger was there too, always. Elements of realism woven into beautiful tapestries that included trees made of crystal and fairies who flew on gossamer wings. I could feel the mist on my face of enchanted oceans and taste the dew of deep green forests and the coolness of wind on the gray stone of castle towers.

Today I got to watch a fairy tale, Stardust, on the plane. It was wonderful. I understand all the fuss. I have been working my way through the entire of the Harry Potter books because now that I know the ending it all looks different. Dave got me the Golden Compass trilogy for Christmas and I can't wait to dig in.

So what has this lifelong obsession with fairy tales done for me? Well besides leading to some great paintings of trees made of crystal they have allowed me to create my own world with a little more flare and creativity than if I had not read them. When I read them they put me in a different space. It reminds me that I am more than my present situation. More than my body and mind - that I have this essence that is just as beautiful as those enchanted worlds only a book could immerse me in. After that type of immersion I think differently. I see things, every day ordinary things differently. There seems to be more light in the air and more oxygen too. And I have answers to my problems and challenges I didn't have before the immersion into something that is other.

I believe we can create our world anew each day by making different choices and using our creativity to bring in more love to whatever situation we are in. It's not looking at the glass half full or half empty - it's more than that. It's literally working with the raw material of our world - the good the bad the difficult the wonderful and weaving a beautiful tapestry that tells our tale as best we can. Fairy tales have made me a better weaver. One who doesn't just see the limits and takes a certain relish in the aliveness that is found in the really tough challenges.

Ellie, with her love of all things imaginative including inanimate objects that suddenly do extraordinary things, caterpillars that turn into butterflies, and all things beautiful is her mother's daughter and a child of mist and fog.

What an amazing year it has been. (yes, another montage)

Photo and video editing at www.OneTrueMedia.com

Moving Through Honey

It's snowing here again but I can't complain because Winter held off its icy clutches long enough this year such that the Fall was so extended I actually yearned for snow. What the heck was I about?

Right now I am overwhelmed. I feel like I am moving through honey like every movement takes a 200 pounds of force to make it. Can you hear my voice in this post? If you could it would sound like a recording that is going too slow and my voice would have that deep hollow sound like they have in slow motion sequences in movies. That is me - moving through honey that is my life's minutia. Someone please tell me how to push the normal play button again. I have goals people! Things I would do if I had time. I have things I desperately need to accomplish for the health and wealth of my family and my own temporary self - vital things! But now all I am doing is moving through the slow viscosness of life. Trudging through snow and fighting through barrier after barrier. Nothing is a go it's all one big struggle. Ugh.

I won't do the list as I have done in the past - remember my call list here? Well this one is longer and time is ticking before we take our sweet warrior princess over seas. I am doing things differently this year because I don't want to end up in an Irish hospital again. An Irish hospital that would not release it's records on Ellie so that the travel insurance that we paid dearly for could not process the claim. The Irish hospital that in the ER could not get an IV in and saw no need for urgency. Not again. I have to admit I am feeling a bit edgy about this trip. I've no need to see the inside of any hospital ever, EVER again. These things are weighing heavily on my mind.

We are leaving for Ireland on Sunday and I haven't started packing and still have gifts to buy and Ellie has a cold and is running a low grade fever on and off. We have upped her seizure meds slightly after meeting with her new neuro. Long time we have waited for this meeting as I discussed here. He was ok. We were late because of the snow. He didn't have many answers. If I ever went into medicine I would never be a neurologist.

The other thing that is weighing on me is the question of how you thank, on a very limited budget, all the amazing people that make Ellie's life immeasurably better? Does a box of chocolates (even one from Ireland made from the milk of those limey soil calcium rich grass fed cows) really say thank you? Because I believe the precise more accurate thank you would be phrased like this,

"Thank you so much for making a wonderful life for us, especially for Ellie. My beautiful Ellie, who I thought there was no place for outside the home. For Ellie who is so bright but has some very particular needs that are very difficult and complex to understand never the less leverage for her growth and development. Ellie, whose head circumference as grown 3+ centimeters since she started your preschool and not from hydrocephalus. Ellie who now does not freak out at every loud sound and every new situation. Ellie who will look at any new book and who now loves to play the tambourine in a circle time that is sung at the top of everyones' lungs. The Ellie before could barely handle the whisper singing that you all so graciously offered up as a starting point. How can I say thank you for the fact that Ellie touched glue and put leaves on a paper place mat? How can I tell you that, that place mat is the most beautiful work of art and heart I have ever seen such that it made me weep to see it because I understood how it is pure evidence of how far she has come? How do you say thanks to people how stand by Ellie and have opened their hearts to build those vital relationships with her so that she will work hard for them? How do you say thank you to all these people that are fools for love enough to make monkey sounds and sing to her when singing is not their thing so that she can learn and grow and be happy in doing so?"

So you see, the small tokens I will get for these people, just don't really cut it in my mind. I wish I was a millionaire and could make up for the fact that I feel these masters of learning to be seriously underpaid. But for now the Irish calcium fed cow chocolates along with some other small gifts will have to do along with our HUGE undying gratitude!

So that is where we are at, one sticky ball of honey rolling down an icy hill towards D-day when we fly to Ireland for a lovely Christmas there hopefully seizure and hospital free.

Disability Blog Carnival #28: My Favorite Things

Over at Andrea's Buzzing About you can check out the latest Blog Carnival. It's excellent. Thanks so much to Andrea for organizing this so well!

The Mythology That Is Our Life

The mythology that is one’s life is something not to miss. I have been aware of mine since I was a very young child. I would see my life unfolding as an observer would at times. My life has its own flavor and rhythm to its events. It’s my life but it’s not me. I influence it and give it spice and specificity but it’s a fleeting thing whereas I am timeless and forever.

Because this life is so fleeting being aware of it has been critical to understanding it and savoring every precious drop no matter how bitter or sweet or savory.

Now that I am a mother the myth of my life includes this beautiful fairy child. Sometimes when my body and mind are very tired part of me wonders where my healthy child went to be replaced by this beautiful changeling. But I only think that when I am near exhaustion. Other times I see her sleeping alternatively wonder how she is so beautiful and where the back of her head went. Microcephaly is like that – not much back of the head.

It is in the wee hours in the morning when she peeps for a moment and I go in and check that she is breathing, not seizing, and not choking that I am hit with these competing impressions. I am the observer watching some rare site that I have also seen a million times. The dualism of it is only hard to explain to the mind but is perfect reality.

I think I also have a hand in creating my personal mythology. Like steering a bobsled down an icy slope I can lean left or right, brake or hunker down to go faster. I can decide to daily play themes of hope or despair. This I have always known. And this ability is independent of outer circumstances – that I have just started learning since Ellie was born. It’s good to learn because there is no room for victim-hood in it. Which is quite freeing. Being totally responsible for my life and actions and thoughts and feelings is a freedom I did not understand before Ellie came along.

Descartes believed the unexamined life is not worth living. I agree, which is no surprise to you who have been following my blog for some time.

I wonder often how Ellie experiences the mythology that is her life. Is she aware that she is a princess in a small kingdom called home? Does she know that she is the ruler of many hearts? Is she aware of her own sweetness and power and intelligence? I hope to help her see herself without limits despite her many, many challenges. I hope to help her live in the dual nature of being a ghost in a machine that functions a bit differently than many of the other machines out there. I hope to show her it is of no matter. That the business of life is for the living not for the dying and that it’s an inner choice you make to be happy not an outer one. No one can make that choice or unmake it for you no matter what they do. I hope to help her preserve what all children know just by being, that our basic elemental nature is to be happy beyond the travails of the body and mind.

Happiness is an art.

I wonder if it’s arrogant to think I need to or can influence any of that at all in Ellie.

I do know that Ellie is a wonder to me and adds a richness to my personal mythology that was not there before she was in my life. She has taught me more about being happy than anyone else but Dave. Dave, my sweet husband with the gentle and positive nature, who has recently been dubbed “MacBrawny” (after he inadvertently worked his tea and cappuccino making charms on an unsuspecting medical student). But that is what it’s like living with Ellie and Dave every day. They are both bright sparkling lights that are pretty happy most of the time.

With that in mind, happy holidays everyone!

Birthday Songs, Christmas presents and Uncle Eamonn

Ellie has been having a great month despite her continuously casted feet. She is sleeping better and I actually know why and am working on a nutritional post to discuss. But for now here are some pics of her latest adventures in 3BT Style:

1. Ellie's fourth fifth birthday party - the kid party at home. She had a blast. Two of her classmates and her neighborhood friends came. There was singing in circle which is her favorite, a caterpillar cake and lots of laughs. (*For all of you bakers out there - don't forget the crumb layer. You know what I mean. Why I think I can frost a cake as well as I can bake and sculpt them is beyond me. Because truly, I suck at frosting cakes! Look, his purple antenna fell off. Oh well.)

2. Ellie opens presents. That is one small sentence that represents oh so much. First - her sensory aversiveness to touching unfamiliar things is so much better that she actually enjoyed opening presents!! She was actually ripping off the wrappings with gusto. Once she got to the present she wasn't so interested but hey, gotta start somewhere. Christmas is here and this is one of its blessings not lost on me.

3. Uncle Eamonn rearranged his schedule to swing by Boston in order to see is first niece. It was a great visit as Uncle Eamonn always makes Ellie laugh. He looks a little rough in this picture from the long journey from Madrid.