Caffeine Dreams

I wasn’t always a caffeine drinker (a.k.a. caffeine: abuser, holic, covetous imbiber of the brown death). No. Actually for years I shunned all caffeinated drink and food. I could sip warm herbal teas with the best of them. I used to drink orange juice for a pick me up or water.

On the occasional chance that I would accidentally eat something with caffeine it would give me the jitters leaving me tired afterward. I didn’t even like chocolate as a kid (I did like white chocolate Easter bunnies though).

I worked as a barrista in a mom and pop coffee shop that roasted its’ own beans and everything. I loved the aroma but not the drink itself. So what happened? How did I get snared by this non-drug, drug?

It was a trifold curse starting with Graduate school and the allure of Starbucks, seconded by birth of nonsleeping spawn, and thirded by caffeine addicted sibling who bought us a cheapo coffee maker and then spent a week plying us with evil brown morning elixer of life.

In graduate school I chose to write one of the many, many 35 pagers on Starbucks and their unique business model. My paper complete with graphs was a 50 plus page comment on my enthusiasm. Evidence that I had fallen in love with the whole third place to escape to, brown warm fuzzy in a cup, cool to be seen not seeming to be seen, I am finally not such a goodie two shoes non coffee drinking odd ball culture. And little by little I was hooked on latte’s: tall soy vanilla lattes please. The fact that I was working full time and going to graduate school full time did nothing to dissuade the extra mental clarity I would get after my own natural resources were wasted. I became a coffee achiever and devotee. And truly I am grateful for the Starbucks in Redondo Beach where I could sit outside for hours reading through hundreds of pages of required learning and sip a latte and feel the flow of life around me versus being shut up in my room going mad trying to get through all that reading as interesting as it was. For that I will always love Starbucks.

Then Ellie was born and she turned out to be a disciple of the Gods of No Sleep (GNS) for the first four years of her life. (Update on what we will just say is a new sleep pattern coming soon - maybe - you know I am superstitious about that and GNS are petty, vindictive, narcissistic lot - so enough said!) And because she is Ellie and we are attachment parents and her medical needs were intense it was an up all night party and I was still working the big job. Coffee became essential.

But now that Ellie is embarking on a new night time routine involving different gods (sorry to be vague but you know why) I am starting to remember that I really don’t like caffeine. For one it wrecks my skin. I remember that from college when I would accidentally get some caffeine and my skin would look blotchy. Also, after all the trauma and fatigue and STRESS of the last 5 years caffeine with its two stepping dance partner cortisol is the last thing I need. And, let’s face it folks I am getting older. And caffeine and the lack of sleep for the past several years are the main culprits to making me look my age, which I never have and don’t yet but am getting closer. Since I am not one for celebrity age control madness meaning: botox, mechanical fluid injections, leech therapy, Ashton Kutcher therapy (well maybe Ashton Kutcher…) are not in my future I need to cut out the caffeine and the processed suger and the stress... put one foot in front of the other....(see how my mind wanders?!)

I really feel that not having any caffeine will help all my cells take a deep breath and a long exhale which I badly need to relax. Ellie is stronger now and healthier and settled in a GREAT school – so it’s time to abandon the flight/fight/fright approach to life with all its highs and lows and relax into a rhythm that will help me keep a steady pace.

So today I didn’t have any espresso in the morning from our lovely espresso maker. I slogged through the day until 3:30 pm. But there was work to be done and my brain was foggy all day. So I broke down under the selfless, lying auspices of making a latte for a friend (not that I don’t enjoy serving my friends) and made a cuppa the brown death for myself as well. Yep. One, two, three gulps gone just like the old owl discerning how many licks it takes to get to the center of a tootsie pop. That would be three, three gulps to finish a latte and presto! I felt more awake, more alert, and my cells sighed in sadness as the wall came down and my heart began to race. I really don’t know how drug users do it assuming coke and crack are a slight bit more intense than caffeine but then again maybe they aren’t.

Tomorrow is another day and instead of going cold turkey maybe I will just have a cuppa Barry’s tea. Any thoughts out there on how to break this addiction?! Or am I completely batshit insane and should just give up trying to quit as a bad job?

The problem with being female

"My wife used to work. But when she became pregnant with her second child she decided it was time to quit." he, my boss at the time, said, emphasis on quit.

I nodded mutely not sure what to say about this. I was going back to work no matter what. I knew he couldn't fire me for getting pregnant and having a baby. I had to keep telling myself that. My inner guidance told me it was the thing to do, it would be important for my family.

It was no easy homecoming.

It didn't matter that a project I initiated and executed was saving the company close to half a million US dollars per quarter (because he had conveniently given all the credit to one of my colleagues who was lapping up all the unearned glory).

It didn't matter that before I got "knocked up" I was the golden child being groomed for Directorship.

It didn't matter that I had great reviews and had gotten a lot of good press for our department which was only such if it could pull it's own weight in terms of ROI (return on investment).

None of that mattered. All of the sudden my credentials were in question as was my competence. I was different, less worthy, less trustworthy, less successful. Less everything. And most of all, very disappointing now that I was an unwed "single" mother. It felt like I was speaking to an unhappy father. And that was amazing because Dave and I were over the moon about being pregnant.


It didn't matter that I lived with my baby Daddy (Dave - OF COURSE!) and that he was there by my side in the NICU for the 134 days.

It didn't matter that we were committed and the actual act of getting married (which we finally did in 2005 by a very drunk priest) would never change any of that.

"So you don't care that you are having a baby out of wedlock?" asked the unearned glory lapper upper.

"No, why should I? We will get around to it eventually, there is just too much going on right now." I said annoyed to even be talking to this person.
"But don't you care that your baby is going to be a bastar.." he persisted until he saw my look.
"Is that what you think? Wow! What century do you live in?" I said.

But apparently he lives in this one and these conversations took place in this company, not in 1952, but in 2002.

Three years later when Dave and I felt Ellie was well enough for us to safely plan a wedding without having to cancel because she was in hospital, I had several men ask me when they heard, "Oh, are you getting married to the baby's father?"

Instead of saying something that involved many curse words and Homer Simpson impressions I would just say quietly, "of course."

But it was too late. the only way I would really be seen as someone to promote in the company was to have remained single and childless and either one of the guys or one of the women the guys wanted to have sex with. That is what this HUGE company was like for women where at the time there were only two women on the leadership team and now there is only one.

When I was in my 20's making a living as an artist and living in Western Mass I thought chauvinism was a thing of the past. It wasn't until years later in entering corporate America that I realized how alive and well it is. And in fact since Bush took office I think it has gotten worse.

So welcome back Twisty. We need you. But please stop referring to the mentally disabled as the "r" word. I truly hate that word and all it's destructive consequences.

A day out at the New England Horticultural Show

We've been busy seizing the day. Finally, finally we are on the path to Spring and warmth and fresh air. It's been a long Winter. But here we are out on a chilly, windy day. Admittedly I didn't enjoy the show as much as last year where you can see here that we had a blast. It seemed like there were less installations and more vendors. Alas. However, Ellie had a good time seeing all the plants and a corn goddess. Her attentiveness is beyond that of your average 5 year old and delightful. You can see her with her own flower, named "Flower", hooked on to her waist strap. This happy yellow and pink velvet flower has become her favorite toy. She would consult it now and then throughout the show. She has been absolutely adorable about Flower. I attach it to her car seat straps on our way in to school. Yesterday she got very quiet and at a stop light I looked back and saw Ellie rub her nose against Flower's face and then lean back and smile at Flower and do it again. She even put Flower in her mouth just a little - but for Ellie with all her sensory aversiveness especially around her face - this is a huge deal. So huge it made me cry - right there on the way to school. It was the cutest thing. Sigh. Can she stay this little forever? She's just so cute all the time.

Water Fairy!

Ellie gets to go swimming twice a week at her school. These pictures are of the first time that she has ever been in a float - at all - without being held. Teacher was never far away but it looks like Ellie really loved the freedom of being on her own in the water. I think she looks like a ballet dancer in the first one! Ellie's teacher Kristin sends home pictures of Ellie's day on a regular basis which is yet another sign of excellence and nothing to hide and just what I need as a mom. I miss Ellie when she goes to school but who can argue with her having experiences like this. There is no way I could duplicate the variety of fun she has or the learning she gets. It's truly amazing. My little Water Fairy!

The Road Not Taken

"Two roads diverged in a wood, and I--

I took the one less traveled by,

And that has made all the difference."

~Robert Frost "The Road Not Taken"

Am I in denial or enjoying the gift of experience?

I have been thinking a lot lately about the movement to build awareness to the serious medical sequelae due to premature births. This movement seems to be led by other parents of preemies as well as medical professionals. The sequelae, or following complications, are serious, sometimes deadly and more often then not effecting the child life long.

I was speaking to one Ellie’s doctors about how few physiatrists are out there and I said I thought there were going to be even more kids that need them because they are saving the preemies these days. And he said that actually the rate of disability has stayed the same and was not increasing as medicine was catching up with itself. What he meant by that is, for awhile doctors could save the preemies but would inadvertently, unknowingly, do things in that saving of them that would injure them for life that now they don’t do. Like how in the NICU they would give the babies oxygen to keep them from desaturating but then keep them on the oxygen while their blood oxygen level stayed at 100% for hours. The result of this was that the premature infant’s retinal vascular structure would grow like crazy hurting their vision to the point of blindness. Look at many of the preemies on the blogs and loads of them have thick coke bottle glasses for this very reason. This condition is called Retinopathy of Prematurity (ROP). There isn’t as much ROP anymore, even just 5 years later. Ellie does not have glasses because of ROP. Her vision is compromised by her hypotonia, which makes it difficult to keep her eye muscles still. We were lucky though because she didn’t have to be on Oxygen that much because she did not, have chronic lung disease that many of the preemies do.

But the doctor saying that the preemies were coming through it better was heartening to me. I wonder if medical science will keep pushing the envelope so that one day the viability age will decrease even more. I am not advocating for this one way or the other just wondering. I know that that viability rate moved from 27 weeks to 23 or 24 in the past. Ultimately I am still of the stance that it is the parents’ decision and that the doctors are responsible for a) giving them that choice and b) understanding themselves and then communicating the current data. Communicating trends would also be good because medical data with it’s limited populations from which they draw conclusions such that the numbers should definitely be put into context so that parents understand what is really known and what is a guess. And in the premature baby world there are still guesses, especially about outcomes.

If the doctor that I had this conversation with is right then it seems that as medical science catches up with its experiments in saving the preemies the success rate is increasing. And that’s good. I am now five years away from the NICU experience. We met with Ellies pediatrician today for her five year check up and he was happy to get to see Ellie when she was not ill. He said it was obvious to him that Dave and I were doing a good job. That was great to hear from a doctor I really respect and knows what he is talking about because he runs the NICU at Brigham and Women's hospital in his spare time so he really knows where Ellie started. When he first took Ellie on, he was grave and straight faced and serious. I think he is pleased with her progress. I can't believe it has been five years. This visit, this accounting for where she is now, this weighing in and measuring, got me thinking about what success looks like. That is a quote from an old boss of mine in Organizational Effectiveness. He always used to ask the teams he was leading, “What does success look like?” Because teams always say they want to be successful. So it’s good to know it when you see it, right?

So what does success look like when it comes to saving a premature baby?

Well success most obviously might be the totally healthy child with no other obvious sign of the rough start than the oblong preemie face, which let's be honest is adorable. But could success also be the child that only has mild cp and can ambulate but is otherwise within the usual developmental ranges? Sure they will need assistive technology, possibly a wheelchair eventually or a cane or AFO’s. But is that tragedy?

Could success also be the child who is left quadriplegic, but not twisted and bent in his chair, and instead an example of what can happen when parents cope with this different and often difficult path extremely well with hope and constant vigilance over their child’s life? So that he then goes on to contribute thoughts and words to the world that enlighten us all? He can do this because his parents never treated him like he was disabled.

What about my Ellie? Is she a success simply because she is here and in one piece after her atrocious start? Is that enough? Is it correct to suggest that everything she is accomplishing is a success story or is it better stated that she is just like any other kid doing well at some things and not so well at others? Or am I denial to suggest that she is doing well at all? What if I admit she is different from other kids? What if I freely admit that I worry for her future? How do these worries really make me different from any other parent?

Was it something unique in my past that prepared me so well that today my main awareness is that I have this loving, funny, sweet, opinionated, beautiful little girl who lights up my world and warms my heart and soul every moment she breaths? Or am I just a sad sac in denial and if I had any sense would just focus on illustrating all that is wrong as a warning and help to other parents that they may avoid my horrible life? Hmmmm. Now that’s a tough one.

There and back again, again

Where oh where does the time go, especially when I am having so much fun?
Let's see, since my last post I have had a horrible bout of sciatica that was followed by me seeing a "specific" chiropractor. Specific chiropractic deals mainly with upper cervical care - meaning the atlas and axis which are the two bones that hold up your head. And seems that I literally had my head on crooked. I realize that many of you just now might have had an aha! moment about me. You might be thinking, "Ok, now I get her, that makes so much sense" right!? I'm so with you there. ;-)

But it did help loads - not that you just go once, you go three times per week so it's a bit of a time commitment. And then a couple of days later I got a ton of consulting work. In fact, my colleague who hired me, said the moment he saw me, "You look like a published author!" So I have to attribute some of getting the work to the book, which I mentioned here. And then, Dave and I joined a gym. The really gawd awful expensive, over priced, doesn't even have a towel service gym. The same one that is literally 5 minutes down the road and for us - that means we will actually use it. We joined because I was lying there one night, in agony from the sciatica feeling about 300 years old and I said to Dave, "What is going on?! This is just unbelievable."

"We have to exercise." he said. And he is right. I don't think we are the first special needs parents who have put working out at the bottom of the list. Not that we intended to put it there. But it just got there, at the bottom, under things like, work with Ellie all day, pick up meds, bring her to that doctor, get up at night with her, try to hold down a job and house hold...and on and on.

So we joined a gym and started going there a few times per week. I am not allowed to tell you what the group exercise class we do is because Dave will get in trouble with the Irish. Let's just say it's quite a stretch for an Irish man to be there. And on top of that he is pretty good at it. So that has all been great. Working in my field doing workshops with large groups of executives has been exhilarating but bad for blogging.

And then, just as my sciatica was a bad memory, two days ago I got hit by a car. I was in line waiting to go through a toll when all of the sudden, BAM! My car lurched forward, luckily not hitting the car in front and behind me I see a car with their front hood quite crumpled. Me and the other driver were both really civil to each other, both able to drive away after we had exchanged information. I wonder how she is doing now? Wednesday, the day after the accident, I could barely move and the sciatica was back. Upon examination today I was diagnosed with whiplash, which in my case means tissue damage in my spine. Major ouch and ARRRGGGGGG! Just when I was starting to feel really great, back to the starting block.

As it turns out getting consulting work, being in car crashes, working out, and being a mother are all really, really bad for blogging and painting for that matter. It's all an adjustment and now I have to figure out how to fit more in. The really bad part is that there are all these posts rolling around my brain. If anyone out there knows how to acquire a penseive I could really use one right now! Also, we just found some really cute videos of Ellie when she was little. Soooo cute and I will post them over the weekend.

Oh, and we are taking Miss Ellie to the same chiropractor and her head control has improved and she is sleeping better. (Remember to keep that last bit on the Q/T ok because, well if you have been a frequent reader of this blog, you know who we need to be careful not to mention her sleeping through the night to....!)

Miss Ellie is doing GREAT in general. She is reading and spelling more and more words. She is trying really hard to talk and it's starting to sound more like words. She is using both legs now in her pony and able to tolerate her stander for 30 minutes up from 15 at a time and GROWING and GROWING. We have her 5 year appointment (I know it's way over due) next Tuesday so more to report then. Overall, she is the sweetest, cutest, funniest little girl a mama could want.

Her latest, cutest, new-new thing is that she loves blankets. She still likes to try different seats. But she has discovered blankets. It's been really cold here and she figured out how to tell me she wants a blanket over her. She loves to sit on the couch with me and have a blanket over both of us. If it's not over me too, she will then work to adjust it so it's over both of us. Soooo cute. We say, "warm, snuggly blanket" and that makes her laugh. Sometimes I wish she could stay at the age she is forever because it's just so adorable but then she does new things and they are equally as cute. Oh, and one more thing, Ellie wants to dance like her classmate Xavier. So during circle she will want to stand while he is standing and dance too. Is that not the greatest thing?!

She is growing and changing and balm to a mama's soul.

Oh, and one last thing, Yang-May Ooi, author of Fusion View has asked me to contribute to her book about blogging communities because of the little community that hangs out around Ryn Tales. Cool huh?! I will keep you posted. Don't have all the details yet. But she did make me see there is a community here, I just think of you all as my bloggy friends, but it is a community in the sense that it has been a huge source of support and fun and learning for me.

Ok, penseive session over. (for those of you who don't get that reference, you really do need to get the finger out (sorry, Irish idiom there) and read Harry Potter). ;-)

Sunday Something to think about

"How wonderful it is that nobody need wait a single moment before starting to improve the world."

~ Anne Frank

Disability Carnival #31 is up and it's Super!!!

Emma , over at Writings of a Wheelchair Princess, has done a great job organizing this very interesting carnival with one of the best themes ever - Superman.

Thanks Emma!

Here is an excerpt I really love that I have cut and pasted from Emma's post. (Emma I hope you don't mind, but I want a t-shirt that says this too!). Thanks to Lisa for penning it.

It’s something that I wrote about earlier this week in this entry. And it’s something that Lisa wrote about in Can I Just Have This Made Into a T Shirt and Call It a Day? In saying the following, she totally blows me away and says something I’ve wished to say, something I’ve tried to say before.

"If you are going to call me remarkable, amazing, inspiring, or whatever other adjectives you want to use to put me on a pedestal…it better not be because I am disabled, or because I partner with someone who is disabled. It better be because I have won an Olympic Gold Medal or a Nobel Peace Prize or a Pulitzer or because I have brokered a treaty between waring nations or because I can tie a cherry stem with my tongue or because I have actually DONE something remarkable. And “coping” with disability DOES NOT COUNT. I didn’t do anything to be disabled, I was given this gift. "

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The next carnival will be hosted by Shiloh over at Sunny Dreamer. It’s theme is “Standing Outside The Fire”. It’s on the 28th and submissions are due by the 25th. If you prefer not to use the blog carnival form, submissions can be e-mailed to celtic_me2000@yahoo.com

Live to the point of tears. – Camus

Alternative title to this post:

Writers and Writing / Artists and Art and Bloggiddy Blog Blog

Origins, Creativity and Labels

I have been thinking allot about creativity. I guess you could say it has been a lifelong study. I was first labeled as the creative one when I was very little. I am the middle of two sisters very close in age, and spin that as I have, at this point I am over it. Not that I have lost that vaunted family place of being the middle, disregarded, misfit, malcontent of the family. Nope, all that is still alive and well in my family dynamic no matter what I do or how I transform. But I am bored of that label – the middle child thing. It’s not something I take on anymore as a convenient modus operandi for my identity. I can’t claim it any more as a reason to not be as great as I could be, or to let it stop me from doing things, nor be my impetus for procrastination. Everyone has a cross to bear like that. The oldest and youngest have them too. And if you are one of those people who think birth order doesn’t affect you, then you are probably the youngest or the golden child of your family. So once you develop a little empathy for others in another lifetime you might begin to understand how wrong you are. Being the middle child thing is just the particular flavor of one of my challenges in life, and, like I said, best to move on to more interesting things.

Because of having been labeled the artist of the family from early on I began to try to understand what it meant. As a child I thought everyone was like me seeing the possibility in sun on blades of grass, day dreaming pictures in their head attached to stories. I think that is the self-absorbed innocence of the child’s perspective to assume all the amazing revelations they are having about the world are the same as anyone else’s. And in fact, I think in the very young, under the age of say 6 creativity is rampant with all that explosive brain growth, cellular energy and closeness to what came before they reincarnated. The really little ones are wired into the source of all creativity, whatever the heck it’s called, as it is called as many things as it can manifest. I have noticed that truly creative people seem retain some of that wonder into adulthood. They have a youthfulness about them that tells you they still let their imagination steer the boat though they have probably learned to hide it from everyone else.

Of course when I was little I liked the label – for the most part. It was a way to stand out. The down side was, in my family at least; it was a bit of a sideshow. People liked it that I painted and wrote stories and kept a journal that I very fiercely defended as NOT being a diary. But at the same time my parents truly worried and often communicated to me that it was no way to make a living – art that is. And for them as parents, a teacher and an electrical engineer, that was the end goal for their children– self-sufficiency which really meant making money. Tell that to Jo Rowling or Neil Gaiman or J.R.R.Tolkien or George Lucas or Mark Twain and on and on.

As a result of those mixed messages, I grew up loving and hating my own creativity. It was an intricate, important part of myself I was always trying to navigate and channel in more appropriate directions, to places where you could get paid. That’s why I attained a higher degree in organizational psychology. It’s an incredibly creative field to work in and it pays and is therefore respectable and I am good at it and actually do love it. The sideshow became my writing and painting the later of which I neglected for the last 15 years. So instead of nurturing and loving the creative part of me – the really creative part that does oil paintings and invents things - I tried to alternatively channel it elsewhere like the companies I work for and at other times tried to destroy it altogether. I put all my pain there in that creative self and gave away or destroyed many of my drawings and paintings because it was hard to remember the bliss of art school where people cared if I painted or not. Where I got full license to create and paint. Where there were conversations about it all from the luxuriousness of grinding your own pigments to the fight around the value of postmodernism. I have tried for a very long time to forget how much I loved it. Unfortunately as many a painter knows you can’t destroy that part of yourself, you can only put it off until it bunches up inside you like a huge burning fire in your solar plexus that makes you unhappy until you can let it out. The creative writing was easier to maintain because of journaling and the ease of use – pen and paper and away you go. Hence I have been journaling since I was four years old. Journaling has always been an important way to stay balanced.

But actually doing something with writing, like say publishing a book, is complicated too in the purely creative realm, especially if you have had the misfortune to meet writing snobs. Yep, people who think that you have to have allot of pain to write, or a degree in writing, or do other things like paint, well then you can’t be a very serious writer, right? Though I must point out that many a great author have drawn very convincing sketches and created images of their characters and story points.

Of course there are art snobs too. I am one though I do subscribe to the idea that anyone can make art and it’s all good. My snobbery is born of artist’s block. When I am not painting and I see other people’s paintings I am really critical because I resent not getting to paint too. How messed up is that? Sometimes creative people are really competitive with each other and don’t support each other very well. Like when I would see people painting and feel jealous like they were holding me back from my own work… It’s part of the overall mixed message thing you get as an artist as well as dealing with all that awfully keen perception of the world and inner worlds that is going on whether you are nice enough to give yourself an outlet for it or not. It is probably that combination of tensions that feeds many an amazing story or work of art. Spiritually, my challenge to overcome all my restraints and create is a test to see if I can hang with the gifts I was born with.

So instead of feeling bad about other people painting I started painting again, thanks to Dave who had the insight and kindness to get me a great easel and make a space for me to work in our house and Troy who made me custom oil paints and hung out one day in my studio until I started to make some progress. You can’t get much better support than that.



Bloggers and Blogging

That leads me to bloggers. Are we all just pent up writers looking for an outlet? Or is it something deeper about needing to have a voice because you feel that no one is listening? Are all blogs lone shots in the dark fired by people trying to be heard? (Incidentally, does that mean if you have your comments turned off that you are essentially talking to yourself…?) Or maybe bloggers have got it write (da da da!). Maybe they are the writers who are not blocked, who are writing all the time. Many of them have turned their blogs into books like Biz Stone, Heather Armstrong and many others. So who comes first the writer or the blogger?

I started this blog because I needed an outlet. I found myself out of the spotlight, home with Ellie, trying to figure out this crazy life with a kid with CP and multiple disabilities, fighting for her and working with her constantly. When she is home she hardly ever plays on her own – and I mean like if you get 10 minutes to draw her meds up or make her dinner without an argument you are lucky. She’s the type of kid whose mind is always on fire and wants to be doing something all the time (she is our daughter after all). I love that about her, but factor in the lack of gross motor skills and you can see why Mama becomes needed hands and legs. As a result there is no down time – it’s all go. I want to work with her has much as possible and much as she can handle to help her develop and grow and it’s working so I happily keep on. But in all that, like all parents, I, the me who is Kathryn, not just Ellie’s mom, got a little lost and needed to have a conversation to process all I was learning as well as let some of that fiery creativity out. The overly socially conscious part of me that always needs to justify the time expenditure of any creative activity thought it would be of use to share what I am learning with other parents who may be in similar situations.

The payback, however, has been enormous. Blogging has allowed people who don’t know me, don’t have a hundred preconceived notions of me or judgments of me to comment on my writing and my thoughts and my ideas. That has been really wonderful and freeing. Blogging is certainly a new trend in allowing people to express creativity. There is an element of randomness to the feedback I get, because I never know who is reading, that I enjoy.

For the most part I have found it a friendly, interesting, and open outlet. Also I have found some wonderful writers in return. I won’t name them because if I forget one or two I will feel bad. The other day my father even made an off-handed comment that I have always been a good writer. He just said it like it was a given for him. I was shocked and thought maybe my blogging has helped to reshape my world in the most fantastical time shift Bill Pullman kinda way.

At the end of the day, however, creative people need support because it’s a risky thing to do – spend your time on creative endeavors like fiction writing or fine arts like painting or sculpting or poetry. For every Jo Rowling there are a million me’s out here, writing into the great vortex that is the blogosphere or the even darker abyss of the personal journal kept in-between the mattress and box spring or slowly slogging away at an oil painting in a chilly 5X9 front room. To all my readers out there who have commented on my writing, blog, and ideas, good or bad, a very heartfelt thanks to you. Thanks as well for all your kind wishes and support for my warrior princess, Miss Ellie. And to those of you that may not understand my need to blog, well, and I say this gently, I really don’t care what you think. Because if it makes you laugh or sneer or roll your eyes in the process you are unleashing bits of your own creativity which is a great way of saying my blog has at the very least made you think.

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Image descriptions:

first image is an original oil painting by me - all rights reserved - of a big tree and green background and madonna and child but all unfinished as of yet

second image is of my studio with easle to the left and palatte and shelves under a window

The Goal to Be Normal

On the surface this goal generally means things like these:

to walk
to talk
to be entirely self sufficient - including feeding oneself, toiletting oneself, and in adulthood taking care of oneself - though that last one has all sorts of variations
to do the same things most of the other people you see on the street do like:
to go to the same school as your neighbor's kids
to progress through school at the proper year
to be able to run, crawl, spin, turn and all other wonder of gross motor skills
to be able to write and draw and manipulate things with the fingers - fine motor skills
And psychologically:
to love and be loved
to not be a sociopath and harm others

Under the surface the goal to be normal means these things:

to be worthy and valued by society (ever hear that phrase to be a contibuting member of society?)
to be loveable
to be understandable
to be happy
to be valued (kind of an add on to the society one)
to be worth medical care, educational investment, and society's tolerance in letting you safetly exist
All in all to be considered a member of the social group with a voice to be heard

So what is this thing called normal? Why do we try so hard to define it so very narrowly?

I met with a group of parents this weekend who all have a kid in Ellie's class. All with special needs. All outside these narrow confines of normal. All great parents who have stood by their kids and had to fight and fight and fight and fight some more in battles as varied as a box of Bertie Bott's Every Flavor Beans. So many battles.

I have also been thinking about the goals for Ellie, especially getting her to walk. I am a bit perplexed by it. On the one hand wanting to give her every opportunity so that if she can she can be upright like everyone else...

On the other hand I don't want the goal to be for her to walk if it twists her spine up and crushes her organs in the process. That is not a dream either. I have met a few parents and their scoliosis ridden children who have paid this high and painful price to achieve something close to normal. Parents proud and thrilled that their kid walks. Stories of hours in the stander. Having to leave the room because they couldn't stand the screams from their kid as their spine shrunk onto itself because of muscles to weak to keep them up and they twisted into a shape that made them veritcle and more transportable. Yes - there are parents out there like that.

It horrifies me.

But this weekend, the thing I found most wonderful about our little gathering was that each of us appreciate our own and each other's kids for who they were right then and there. Not for what they will become. Because they all have neorolgical issues and we all agreed that the doctors can't predict outcomes - especially neurologists. I was in a situation where the parents all knew their kids really well. The bonds were tangible. There was no crying or fighting and lots and lots of play and fun. I was in a situation where wipping out the g-tube to feed your kid or give them meds was done with out blinking an eye. I was in a situation where none of the kids was verbal but all were communicating quite well and every adult understand what they wanted - a toy, a hug, enteratinment.

It was nice. It was our normal.

It's sad and just plain wrong when the under the surface goals of being normal seem to have to relate to surface qualities of looking like everyone else and doing what everyone else does. It was a given with these parents that we love our kids and respect them. It is a given that we are all fiercely protective. Sadly we all had stories of cruel comments and unkindnesses directed at our beauitiful children - Ellie and Xavier being the oldest at the ripe old age of 5. Can you imagine being mean to or making a snide comment about a child? A toddler? Someone under the age of 5? It's unbelievable.

So, that is my question. What is the goal of normal? Why is being normal so valued? I am not sure Walking is it.

David, very, very graciously answered my question about high tone here. Thanks David. I realize it's the least favorite thing you like to blog about. I am very grateful. You have had me thinking every day since you posted about it. You have reinforced my belief in tummy time.
I am always impressed when I see pics of you sitting so straight or lying prone propped up on elbos reading as you have a bite to eat. I can only hope that Ellie will be so strong some day. I am in the shade of your parents who protected you so well and helped you be you based on you and nothing else. It's threading a needle to do that so well, to understand when to intervene or not intervene. I am constantly threading that needle. Some days I feel I have drawn blood and missed the mark, other days I feel like I have gotten Ellie through to safety. It's hard.

Violence against people with disabilities is alive and well. It's violence against people who can't defend themselves. I wonder if, as we integrate more children with CP into our public schools if more incidents like this will happen? I hope we can do a better job as a society to educate ourselves and our children about differences. About not fearing differences but respecting them and celebrating them for all the learning and wonder they bring to make the world such an fascinating place if you have the eyes to see.

Things I do in my copious amounts of spare time...

Yep, I wrote a book, it's called "Which Bird Gets Heard? How To Have Impact Even In A Flock". That's a picture of the cover.

I am pretty psyched that it's finally available on Barnes and Noble as well as Amazon. It represents 4 years of Organizational Development research and much blood, sweat and tears. It's about presense and having more impact in life. It's positive and I hope humorous. It's not about CP though the principles in it can be applied in a helpful way if you happen to be raising a child with CP and other disabilities like me. Go figure.

Anywhooo. I wasn't sure I was going to mention it on this blog. But hey, you don't write a book every day do ya!

If you happen across it I hope you like it and find some use in it and any feedback you have will be greatly appreciated!

Weeeeeee!

Do you think she has fun at school?

Both pictures are of Ellie and L in a toboggan made by the adaptive equipment studio at Ellie's school. To call it the adaptive equipment studio however is like calling Willie Wonka's chocolate factory the candy store. Molly who runs the studio is very much like Willie Wonka in that she is a creative genius who is also an OT and I think she has a fine artist background too. Either way she and her band of expert craftspeople make all sorts of things so that the kids can experience things they wouldn't be able to otherwise. The seats of the toboggan are made of tri-wall cardboard and painted by volunteers. Amazing stuff!

High Tone

Ok - I have to ask my readers who have personal experience with this some questions that I feel might be totally invading your personal space about spasticity.

Apologies in advance.

But I am asking so I can help Ellie with hers. I need to understand. I worry about her experiencing pain. Because you see, increasingly her legs are getting tight. They are suddenly scissoring like mad and I feel it creeping up her legs to her waist. What to do?

So here are my questions:

What does high tone feel like? The real question is - does it hurt?
Followed by, what things have you found ease it, help it, relieve it in anyway? I understand where it comes from but I wonder if epson salt baths, arnica, or anything else that soothes tense muscles will help.

And for anyone who has had experience with AFOs, braces and the like, do your feet and legs with the high tone feel better in them or out of them?

Ok - there, I have asked. Any thoughts on this will be entirely welcome.

Prouder than proud

The first picture is of Ellie working hard on her standing and building up the strength in her legs ever since recovering from her October 30 PERC lengthening and posterior tibial recession. Here you can see her at her school in her knee immobilizers standing. Her awesome PT, Maryann, even let go for a few seconds and Ellie was able to balance upright, standing, on her own.
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Go Ellie!
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The second and third pictures are of Ellie in her Pony Gait Trainer. She goes in it everyday and more and more needs no coaxing to take steps on her own. Our floor is like the high seas so we always start her up at the top of the 5% grade so that her first steps pack a big wallop. She is really enjoying it.


I still need to order this and that should help her even more with staying upright. It's exciting to see how much she really loves to "walk". In the last picture you can see her making her way to the TV. she loves to see all around the TV and will ask us what various parts are. A gadget girl all the way.

I hope we are doing the right thing encouraging her. It's always a double edged sword. The surgery we did helped especially with the pointing downward of her toes and on the left side. But her right foot still toes in quite a bit. The good news is it seems like her feet are adjusting to her AFO's allowing her to wear them for longer stretches of time before we need to check her feet and let the redness die down. It makes me sad sometimes though that she wears those all day, a diaper all day, and bivalves on her legs and feet at night. Even so we are seeing her pulling her feet inward less and that has got to be some new wiring in the brain - which is good.

30th Disability Blog Carnival: What professionals need to know.

I got the idea for this carnival in thinking about the sensitivity and understanding or lack of both by medical professionals regarding what a patient’s life is really like. In my experience therapists, doctors, teachers, school psychologists who have shown true empathy, a willingness to listen, and respect for me and for Ellie have, sadly, been in the minority. I wish more professionals would try to educate themselves about the people they are trying to help.

So that is where I started. But as you will see there are many more places this sentiment extends, including fashionista sensibilities about wheelchair design. I have learned so much from the multifaceted diversity of thought in this carnival. Thanks to all contributors for making this carnival so insightful and well rounded!!! Enjoy!
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The next blog carnival is on 14th Feb with submissions due the Monday before. The topic/theme is "Superman". Please e-mail submissions to emma@wheelchairprincess.com or use the disability blog carnival submission form.
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Tokah kicks off this carnival with the post, People Are People First that is such a huge underlying theme in many of the posts that follow. Tokah you are so right. GREAT post.

Emma follows with this very explicit and wonderful post about carers who come to her home. It’s a great post because she goes into detail about what works and what doesn’t. Thanks Emma for this post. I wish every person who has ever come to our home and everyone who goes into anyone’s home as a carer or therapist could read it.

Cheryl gives us, What I’m Teaching Professionals. This is another great blog that relates to Emma’s experience so well. Here is an excerpt:

“My second thought? I would not want any of you working with my (fictitious) disabled child. In fact it scared me half to death to think that people being trained in the human services are left to go out into the real world with no real knowledge of disability whatsoever.”

Wheelchair Dancer gives us What Every Body Worker/PT Needs to Know. I agree with one of her commenter that this should be made into a poster or hand out and distributed widely.

Jodi Reimer discusses the power of a professionals words and attitudes in One Parent’s Perspective. This is another must read for professionals. Here is an excerpt:

“Because of your position and our vulnerability your words, and more importantly, your attitude, have the ability to ruin my day...or even change the course of my child's life.”

Ruth over at Wheelie Catholic takes us into a restaurant and offers up a very thoughtful detailed list of advice for waiters and waitresses in Dear Waiter/Waitress. I was stunned by her experience in the restaurant and if she had published the name of it, I would definitely boycott the place for life.

David, over at Growing Up With A Disability offers up two posts that fit this topic nicely. The first is an interview he did with Brian about Control. The second post is one I have remembered quite clearly since the first time I read it back in April. He quite clearly, much like Emma outlines the Top 10 Tips for Service Providers. It’s another excellent blog post on this topic.

Josh Winheld writes about his experience in dealing with a customer service representative at social security in Adding Insult to Injury. This is a great post that may make your blood boil on Josh’s behalf.

Tina Cohen, K.C.’s mom over at Autism Schmatism! writes something we can all learn from in, I Have Heard It All. Here is an excerpt:

“The old man said this, "where's his wheelchair!" Then "the mouth" I sometimes call him said, "you dummy, disabled doesn't always mean your legs!" I squeezed Big Brothers hand to let him know to shut it.”

Media Dis&Dat blog in Man Without Legs Photographs Staring Around the World reports on the adventures of Kevin Connolly and his experience with photographing over 32,000 people staring at him because of his differences. I also recommend the 20/20 interview of him found here. Connolly’s photos wordlessly mirror people’s attitudes in some ways, much better than words could convey.

Steve over at Planet of the Blind gives us Who’s Who? This post takes the perspectives and twists them on their ear for our benefit. Great post Steve! He also writes, Make It Strong Please. Here is a quote: “Blindness isn’t a calamity unless the "professionals" make it so.”

Ettina at Abnormaldiversity gives us this very insightful post about Counselors for Neuroatypical People. Here is an excerpt:

“There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.”

The next post is one of the best and most complete essays I have read on the topic of access. I will be book marking this and reiterating it in the future I have no doubt. NTs Are Weird discusses Who Benefits from Accommodation? “Something planners need to know: accessibility makes places better for everyone, not "just" for disabled people”

Lilwatchergirl clarifies the balance of power and so much more regarding her PT’s in What I Will Not Do OR to those who are there to make me 'better'

"Because I have choices and autonomy and a mind of my own"
--a great, fierce list of basic rules

Diary of a Goldfish writing for the BBC’s Ouch! Gives us The Deadly Sins of Wheelchair-pushers. Anyone in a position to push a manual chair should know and avoid these “deadly sins”.

Liz Henry gives us My Evil Mastermind Futuristic Wheelchair Golf Cart Thing. Just go read it! Great post Liz!

Elizabeth McClung over at Screw Bronze! has submitted this excellent post, “Fight? Or Resist?” about the language used around “fighting” a disease or disability. GREAT, great post. Here is an excerpt:
“…Lupus, CFS, MS, Parkinson’s, ALS, Huntington’s, CBD, Rett Syndrome, Lymes, Leigh’s Disease, MND’s, Friedreich's Ataxia, and those host of other diseases of which the idea “to fight” seems humiliatingly ludicrous…”

Jacqui at her new community blog, Equal Not Special, which I highly recommend you visit gives us her top 10 list of what professionals should know. Here is my favorite off this list:
“4. Just because you say that Moo won’t do things, doesn’t mean that he won’t. Doctors/health professionals can be wrong.”

Nick in “Where Have I Been?” shares his adventures in the virtual world of Second Life. He calls it “the next frontiere for disability culture!” All I can say is Wow and Who Knew? Made me want to go there right now and check it all out, except that I have to get this blog carnival out! Nick gives some great resources there from his experiences. So interesting! Thanks Nick.

Report From a Resident Alien gives us this thoughtful post titled, “Sometimes I Wish I Weren’t Autistic” about accepting her Autism. Here is a quote: “Autism's caused me trouble; but it's part of my life, part of my personality. Why not be proud of who I am? Why not, at the very least, accept it and work my life around it, rather than banging my head against it?”

Lastly, This Is How I Swim rounds out the carnival very directly with this post titled, What Professionals Should Know. Here is an excerpt:

“So if I could, I would tell all educational professionals that we have a responsibility to educate everyone who walks in our doors. In fact, that really needs to be said to pre-professionals and then repeated every year until retirement. The problem is that I could say that with words, but the institution of special ed, by it's very existence, tells them that I'm wrong. Bit of a sticky wicket. So what all professionals should know is that is that…”

..And check out this last, LATE entry over at Deaf Mom's blog. It's worth the read!!!

Bonded

Ellie is sleeping at the moment. She probably will be for another couple of hours until she wakes up hungry. Since she got off her antibiotics our hiatus of undisturbed nights has ended. I think too she is growing again which means she wakes up with a hearty appetite she could have only gotten from her father.

I just gave her one of her nightly meds. Very gently and quietly I worked as not to disturb her. All the same, despite my best, practiced-in-the-art-of-not-waking-baby mommy efforts, she knew I was there. She instinctively moved toward me - in her sleep.

It's like that when she sleeps. She knows I am there. I hope I am a good presence. I hope a kind one. It's weird though. At night when I have to give her meds I feel the connection. It's like a rope connecting us. It's tangible. I can feel her presence at the door of the room. It was like that when we would go to the NICU. Dave and I would comment on it. If we left for short periods of time to go get food, we could feel it at the security desk - her presence. Sometimes it was peaceful and often it was not when she was struggling in the early days fighting to stay here in this world. The bond between us is real and alive like a nerve ending exposed. It's sensitive to air and movement and thought. Like I said it's a weird bond and something that deeply connects Ellie to me and to Dave.

In this sense I experience her as hyper-conscious. It's like part of her is awake even when she is sleeping. It's like she has mama radar and can sense me when I am a room's width away. Very hard to explain. Are all little children like this or did she inherit my light sleeping tendencies? Because I remember being like that as a child - asleep but supremely aware of my room and the goings on in the house. In my case I experienced allot of fear. I hope that is not the case for Ellie.

Did this happen because we practiced the attachment parenting method? Does this bond account for the fact that I know what she wants most of the time though the ongoing conversation she and I have is never spoken using words?

What's undeniable is that her need for my love is real. At night when I have given her some food or just held her to settle her back to sleep, she will roll my way and reach her hand up to my neck or face and keep it there until she falls deep asleep. If I try to move away she will wake. I guess that is what it means to bond with and trust one's parent. Ellie is one kid who knows that her parents will be there. We have always been there from the first moment of her conception. And we are still there now, connected by invisible bonds that are stronger than steel and more sensitive than a neuron. Some days I mourn what happened to us all. But when I feel that bond I know that there is something much greater happening than what my mind thought was supposed to be. That bond is the main thing that makes the world around me real.

In Memory of Brent Martin and others

Wear a black arm band this week to mourn and protest the brutal murder of Brent Martin.

Thanks to Emma for making this ribbon.

Travelling, more experiences to consider

Emma has posted her experiences with the world transit system and it is worth the read. It links to the discussion I started here about Dave and Ellie and my most recent trip to Ireland.

Travelling should not have to be such a humiliating, dehumanizing experience just because a person has special needs or doesn't walk. It's amazing in Emma's story the assumptions people made about her. Emma, super smart web designer and writer and creative person, being treated as if she's not all in there just because she uses a wheelchair. That just kills me. I have heard David write about this too. How if he is with someone else while in his wheelchair people he has to deal with won't address him but the able bodied person instead.

I really think that anyone working in any role that deals with the public should be required to take diversity training and that training should include getting up to snuff on disability rights and disability diversity.

Everyone Must Do Tummy Time

From left to right: Diplodocus Ellie, Froggie, Warrior Princess Ellie, Maisy, and Tigger. You can see Ellie using her "weemote". That is actually what it is called.

Black Arm Bands for Brent Martin

David, over at Chewing the Fat, has alerted his readers to this hideous case of violence against a man with an intellectual disability. You can read the detailed story of what happened here. Needless to say, this greatly saddens me. Ellie has an intellectual disability as well as physical ones. I know the world is not a safe place. But being silent about violence like this is as good as condoning it. I for one will be wearing a black arm band next week.

Acts of violence against the disabled are not ok. I protest. I am angry about this. I want to alert as many people as I can.

Disability Blog Carnival is UP: Disability in the Media

The carnival is up here and it ROCKS! The theme is Disability in the Media. Great theme. Really jam packed awesome carnival with many thought provoking posts. Thanks to Connie Kuusisto for organizing this. Excellent Carnival Connie!!!!

The next blog carnival will be here at Ryn Tales on January 24th. The Theme is "what professionals should know about disability". Submission deadline is January 20th.

Mobility and Traveling with a Quadriplegic Child

This post has been a long time in coming and concerns all the things in its title. If you have been reading this blog for long you will know that Ellie is a bit of a world traveler. And when I write that I can hear us saying to her in the Aussie accent of her favorite toy – globee. “Ellie, YOU ARE A WAAAAAOOOORRRRRLLLLLDDD TTTTRRAAAAVVVVVVLLLLLLLLLLLAAAAAAAAAAAAAa!” Much to her delight. And in truth as a second generation American it took me until I was 21 to get to fly in a plane and nonetheless to Europe, on my own, from money I had saved up from many part time jobs. Ellie has been to Madrid, England, Ireland, California (she was born there) and many other places. Hardly a world traveler in a foreign news correspondent sense but she’s only just turned 5 - give her some time.

The truth is, this was the hardest trip ever. And we have used our Peg Perego stroller for the last time. It just won’t be viable by the time this summer when we go to England for her therapy at Advance. Her Kid Kart Express is too heavy and bulky and falls apart if you jostle it – so it’s not an option. I can’t imagine checking it on the plane and having it come back all in one piece. Also it would never fit in any European style car along with our cases.

We have also heard that if you bring a person on board in their wheelchair they are expected to stay in it the entire trip. God I hope that is not true as Ellie would need to stretch out after a short time sitting. If anyone in a wheelchair is reading this and has flow – please, I beg you, tell me how it works. Do you wheel on, get into your seat and then someone takes your chair? Do they leave it on the plane near you or do they check it below? What if you can’t ambulate, how do you go to the bathroom? Simple questions and I am so not joking because I need some perspective on how to transition from traveling with little baby Ellie to little long legged girl Ellie who will rapidly turn into teenage Ellie and so on if we are blessed.

One solution for to and fro airports is to get a portable stroller set up for someone with CP. Ellie’s classmate Lizzy has one and her mom brought her to Ellie’s party in it. It folds up to about the same size as the Peg Perego and is only ever so slightly heavier but offers a great deal more support. This is the stroller I am going to ask insurance for. We need it. As soon as I get the name of it I will post a picture of it in this post as well as the link to it.

Ellie’s Kid Kart Express, though it provides great support barely fits in our car and is HEAVY. I have to drop it about a foot each time getting it in and out of the car because it’s an issue of be gentle with the stroller or kill my back and my back wins every time – self preservation. This dropping it 12 inches each time takes it’s toll on it rather swiftly and I am forever tightening bolts and readjusting it.

Also traveling in the narrow confines of a plane are tough. Ellie wants to be on our lap and when the person puts their seat back there is no room, in fact it’s dangerous if they do it quick. We narrowly missed her getting clocked with a flying seat back. She will sit for a little bit in her own seat which we line with many pillows and both of us lean over to support her. And she is getting to be a much better sitter. It’s just that if the plane ever did lurch forward or experience any real jostling turbulence, Ellie would suffer like a rag doll being thrown this way and that. So we hover by her and hold her and basically are on egg shells the entire trip.

And you can’t let that guard down for one second. I did so as I was pushing her in her stroller out of the airport bathroom. As we were going by the stalls, a bathroom door stall flew open fast and I thought it hit her. She began to really cry hard. I have never felt like a worse mother. I thought it hit her in the head but there was no mark so I think it actually hit the side of the stroller. Just the same I was in tears before I realized it had probably not hit her but scared her. I felt all the breath leave me when this happened and got this sharp pain in my chest. Ellie getting hit in the head by anything even a feather is so not allowed in my realm of experience. Hasn’t she had enough head trauma for f$%&sake!

So I picked her up and carried her out of there. She was hysterically sobbing and I was trying to push the stupid Peg Perego at the same time with tears rolling down my own face and both of us were trembling. That really sucked as far as experiences go. I did think it was partly my fault however. Instant karma coming back to torment me in repayment of the fact that I gave a woman a dirty look who was using the handicap stall before us who was clearly not disabled.

Changing her in public toilets is a bit difficult as well. We usually just do it in disabled stall in the stroller itself by putting a pad down underneath her. But this obviously is not a long-term solution. Getting her walking or ambulating and potty trained are long-term solutions. We are working on the walking and its time to potty train her too. Again, I have no idea where to begin or what equipment to get. Any pointers on this will also be much appreciated. I do know she understands going potty so at least we have that to work with as a starting point. God, Ellie is going to kill me when she is older for writing any of this.

I realize that we are still caring for her in many ways as if she were a baby. It would not occur to me to sit her on the toilet since she does not do this at home. What is the transition? I probably should have potty trained her already but just and a lazy sloth of a mother. I really have no idea if we are doing any of this right. Where there are lots of rules for kids who can sit and walk and talk there are none for one that doesn’t do any of these things.

It just seems like going into the world transport system is dangerous for someone who can’t readily jump out of the way of all that surging humanity. Does this mean we just road trip it everywhere? Can’t drive to England though and I don’t fancy being on a boat with limited meds and food for her for any amount of time.

Dave and I love to travel. And Ellie did enjoy looking out the airplane window (this is the first time she has ever done that one – and very exciting for us to see). And I know she loves seeing her relatives and visiting beautiful places of the world and getting to be with Dave and me 24/7.

I really need to know with all these limitations and concerns, how do I keep the world from closing in on us?

The politics of gender

The politics of gender are a huge force in this election. The force that is putting Hillary most in the spotlight or petri dish of scrutiny. And that is a sad thing.

Here is an article that sums up a great deal of what is going on very well.

http://www.huffingtonpost.com/erica-jong/tears-fears_b_80679.html


Back to the normal programming tomorrow. This year I have vowed to get educated on all the candidates and of course, blogging is going to be a part of my endless need to talk to myself in public. Bear with me.

We're not going on a bear hunt again...

Dontcha love this book?! The link to it is in the lines below or you can go here and see the man himself recite it on you tube - definitely worth the viewing. Ellie loves this book. Thanks to Lena for getting it for her - hours of fun, and I do mean hours!

The last line of the book in particular (also the header of this post) describes perfectly how I feel right now. In the book the family optimistically and enthusiastically goes out on a bear hunt and it starts off well enough:

"We're going on a bear hunt,
we're gonna catch a big one!
What a beautiful day.
We're not scared!"


Then they encounter progressively tougher travails until finally they meet the bear who then chases them all the way back, through all the same travails, until they get to their house narrowly escaping his claws and everyone burrows under the covers together for like a year.

Yep, that's me, blogging to you from under a huge pink comforter with Dave and Ellie each doing their thing. We're just not leaving the bed for awhile. It was that kind of trip.

We are all in one piece though all of us sick as dogs. No bears or lions or tigers either, mostly. Will fill you in on the details in the near, near future as I need to pick the brains of you moms and dads and persons with bodies like Ellie's who have survived a little longer on this path than me. It is clear to me that we are at a turning point with Ellie and disability and access. Sigh. No one likes change, right? But for the moment, it's all about burrowing under the covers, tending our wounds, regaining our health, and our courage to brave another day.

We are surely not going on a bear hunt again!

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.