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.

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.

I wish this old train would breakdown so I can take a nap!

Jack Johnson - Breakdown

This is one of my favorite songs by Jack Johnson. It's a good one to listen too when you haven't had a night of unbroken sleep for what seems like weeks. Sometimes I wish that life would just let me get off its mad rush and take a break. This is one of those times. These casts are killing us!

Ellie hasn't been sleeping well with them at all. She sleeps for about a 2 hour stretch at a time then is up and upset and unhappy and wanting to be held. And that is pretty much how our nights have been since October 30. As a result I am a lazy blogger. I have so much to tell you to - especially on the nutrition front.

Monday we get the first set of casts off only to have her molded for new AFO's and recasted until the new ones come in. It's the final stretch on our way to walk ready feet.

Happy Birthday Ellie, Love Mama

Make an on-line slideshow at www.OneTrueMedia.com

Rosebud, sharing a laugh, Yaa! (3BT All About Ellie)

~ Rosebud cheek against my chest as she dreams. The safety she feels is palpable and forever endearing.

~ The way she HAS to turn and look at me while Dada "checks in with Santa". She wants to share the laugh.

~ The way her eyes light up and her small smile of anticipation when you have figured out what she wants to play next and hit upon one of her favorites. "Yaa!" she says in that sweet light voice only a little child's small vocal chords can create.

Happy 5th Birthday Ellie-Luv

Ellie turned 5 today. She was born at 3:01 PM PST. It was a rainy Saturday and she was three months early.

She had a great day today. She has come so amazingly FAR.

It truly doesn't feel like 5 years have gone by. It is going way too fast.

It's late. After a day of parties at her school and at home and a couple more to plan for, mama is tired.

Will add pics to this post and more descriptions tomorrow.

Home at last

We got home today just before 7pm. Ellie, other than being tired, hungry and having to put up with casts on both legs (up to her knees) is back to her old adorable, happy, smiley, active, smartie-pie self.

Thank you God!

And thanks to everyone for all their kind thoughts. I really think it makes all the difference.

Will write what I learned about Codeine tomorrow because I am tired and hungry too.

In Hospital - again

This is just a quick update while I am home gathering up Ellie's food and overnight gear for the hospital. Sensitive Boo had a bad reaction to the codeine. They gave her some Narcam and she popped right out of it for 30 minutes but then right back down again. She was satting really low. Turns out Codeine has a suppressive effect on the lungs and the Ellie is sensitive to it.

I can't tell you how bummed out we were that this has happened and how relieved we were when they successfully pulled her out of it with the Narcam.

They have ruled out shunt malfunction and seizures. They are keeping her in for observation at Children's until she is back to her baseline with out the help of Narcam.

Will update when we are home again some time tomorrow. Any good thoughts for Ellie will be much appreciated. She is in the wars, again I am sad to report.

Home and Happy - well mostly

Ellie really sailed through this one. We are home. She is playing and bright eyed with one red cast and one purple cast. She wants to play and is keeping down her food.

She is my brave warrior princess. The operation went well and I can't believe the position her feet are in. Now we just have to get through the casting and the pain management when the block wears off.

Thanks to all for your well wishes!

Added this bit 5 hours after being home:

Ellie got this epidural block just before the surgery that helped her be more comfortable during the surgery. Well...it's worn off and yikes she is in a good bit of pain. We did end up having to give her 1 cc of Valium for the spasms and Tylenol with codeine for the pain.

Poor little babe can not get comfortable. So it will be a long night staying ahead of her pain. The good news is the is still keeping her food down and at the moment is resting on Dada. Hopefully she will be able to rest. Any one with any tips on getting an active 4 year old to stay put with her feet up to keep the swelling down, please let me know. Because Ellie is not thrilled with this arrangement and her poor feet are really swollen. I knew it was too easy.

PERC Lenthening and Posterior Tibial Tendon Recession, Oh my.

Surgery.

I HATE that word especially when it applies to my baby. Ok - she's five, but she will always be my baby.

Here's the why of it that I hope one day Ellie will understand:

This is a regular scenario these days. Ellie is sitting on Dada's lap reading when she sits up straight, pushes the book away, and reaches out for her Pony. She literally put her hand around the handle and pet it! And smiled.

Dave said, "Oh, do you want to go in your Pony and do walking?!"

To which Ellie replied, "Squeal!" With a big smile and dystonic arms out head side to side.

I know that reaction is because of the CP - but it leaves you no doubt as to her positive enthusiasm that you have figured out what she wants.

So Dave, painstakingly puts on the right socks, then carefully but very firmly puts her in her AFO's and the little shoes that fit over them. She gets in her Pony and heads off to a visit to the bathroom. I must take a picture so you understand the draw. For one the shower curtain is covered in ducks - which she loves and also it's a small little room. I remember as a kid liking small spaces too. Maybe she is also trying to tell us she is interested in potty training! hmmmm - that just occurred to me- ok I am all on for that!

Anyway - she makes it there by moving her feet forward then pushing up. She even gets in a few one foot first then then the other proper steps in to Dave and my cheers. (You'd think the Red Sox won the world series again! Well they did so that was nice coverage for all the screaming). Ellie was able to get to the bathroom - which was about 10 feet from where she started. She had a look of wonder when she got there, had a good look around then a look of pain hit her face and she scrunched her arm over her right eye. This is her indicator that we need to get those darn AFO's off NOW please!

Dave took them off and massaged Ellie's feet that immediately went back to their equinovarious posture. It hurt her to be in those AFO's for the 10 minutes she was in them.

And you know what, I dare say if they didn't hurt her there are other small spaces in our house she would like to explore as well as pull all the toys out of the bins that being upright in the Pony allows her to access. But that's it for the day. We have to let those feet get back to their normal color.

So there it is. What would you do? She wants to walk and I want to help her.

In my last post about this Penny, rightly discussed the other dangers of not doing these things in her comments. Ellie's bones have not fused together yet - but should I let them? I think no. The exercises from Advance are helping her tremendously - but they are not helping her feet - yet - they reach the extremities last. Her hands have been helped but her worst area of high tone is in her ankles and feet. Also note that her hips used to be really bad and her wrists - but the hyperbaric treatments and the Scotson Technique have helped all of that.

So here is what we are doing.

It turns out that they guy in New Jersey is not the only one in the country doing PERC lengthening. This is the least invasive way to lengthen the Achilles tendon. It is laproscopic and will leave minimal scaring. In doing it the doctor will basically take small chunks out of Ellie's tendon to allow it to loosen and weaken. When ever you mess with any tendon in this way you weaken it for LIFE - it will never come back. This greatly concerned me so I asked him how much it would be weakened and he said if you could isolate the muscle and tendons in the lab you would see a decrease in strength by 5-10% but that it's very hard to measure in humans. Having gone through a similar operation - actually a far more invasive one - my tendons don't feel all that weak - so we will live with that risk for Ellie. I am so so thankful that this technology has come such a long way since I was 13.

The other thing we have to do which is more invasive is a post tibial tendon recession. This is the tendon that is pulling her toes in. The PERC will take care of the tendon (Achilles) that is pulling her heal up. The posterior tibial tendon recession requires a regular incision that will be about an inch long on the inside of ellie's ankles. I loathe that we are doing this optional surgery and that she will have scars and pain from it. This recession part is more invasive than the PERC.

While under Ellie will get casts on and wear those for 4 weeks and go back then, get molded for AFO's and be recasted until the AFO's are ready - approximately 2 weeks.

We will give her Tylenol with Codeine for the pain at home.

The surgery is at 10am tomorrow.

Today I am taking her to get one hour and fifteen minutes of Hyperbaric Oxygen therapy going down and staying at a depth of 24 feet. This will greatly support her blood oxygen saturation levels during the surgery. Then on Wednesday through Saturday I will get her this same treatment once a day. This should greatly induce tissue healing. 24 feet is optimal for tissue healing. Thanks to Linda Scotson at Advance for this advice on the level to go to. Dave and I knew we had to support Ellie through this with the HBOT therapy. But I did not know the protocol.

Also, I will be using some cleansing herbal teas for Ellie to support her system in processing the toxins her body will received from the anesthesia and pain meds and natural ones that will be produced due to the trauma of surgery. I know I will be giving her fresh carrot juice as part of this but not sure on the rest. I will be sure to let you know in my follow up post.

So there you have it. We are doing an elective surgery on my daughter. I am hoping it will buy us at least 4 years of stable feet in the neutral position they need to be for walking. I a hoping that in this position they will send better signals to the brain - because this is in no way a cure for the CP - which is why I loathe it. It's a management issue. Yes - I am managing my daughter's feet so she can walk - but only because she has made it clear to me she want's to.

From the razor's edge to your ears. Send us healing thoughts!