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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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!

Things you can't say to my face

True story:

A mother is travelling to the hospital in an ambulance with her daughter, a cardiac patient, who also has CP and uses assistive technology to communicate. Her daughter has a fever of 102 and possibly pneumonia. The EMT, who is unable to get the IV in, suggests using a new method to access the girl’s system internally (despite another easily accessible point – the girl’s g-tube). The mother asks what it is. The EMT pulls out a drill like those you see from a hardware store and tells the mother it will help her easily access the girl’s bone marrow so that she can give the girl any needed medications. Mom, flatly refuses. The EMT in trying to convince mom says,

“We’ve tried this on lots of real people.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

hmmmmmm........

Sitting Strong

Here is my superstar sitting barely supported, arms out dancing to a wiggles song. I am so proud of my warrior princess! Here Ellie is sitting cross-legged and dancing. Thanks to Kristin for this pic.

In other news the Little Miss walked into the bathroom all by herself in her Pony gait trainer and was very proud of the fact. (Why the bathroom? No idea except that it is a little room off the kitchen that is Fascinating - don't ya know?!)

We have decided to go with a PERC lengthening surgery on both feet as well as to release the side tendon that is making her foot toe in. When we look at her in her Pony and how much she loves it and how little time she gets in it because her feet are too twisted to stand her AFO's it seems the obvious thing to do.

A note on PERC lengthening - we found out that the guy who does them in New Jersey is not the only one and there are lots of docs out there who do. I was shocked when in discussing what to do Ellie's doc started to describe the PERC lengthening and I said, "Oh you do PERC lengthening?!"

Ellie's surgery is going to be on the 30th of October. I will describe it more later. But keep her in your most positive thoughts on that day.

Ashley Treatment Goes Abroad

Emma does a great job at summing up the horribleness of this. NPR also reported on this yesterday. Emma posts the UK article here. I totally agree with Emma's thoughts on this only to add that this is also a feminist issue. I feel strongly about this being the mother of a nonverbal girl with Cerebral Palsy. I had period pains too when I was young - really really bad ones. And you know what, I got a hot water bottle and Tylenol but was allowed to keep my uterus. I haven't heard of any growth attenuation "interventions" being performed on the boys (which would be equally awful). If this were not a feminist issue I think you would be hearing about that too as men are on average larger than women in terms of weight as an issue for the seemingly allmighty care-giver / management paradigm.

Part of me was also very saddened to see that doctors in the UK sanctioned this. I always think of the UK as being so far ahead in social issues. Maybe it's because they are a much older country than the US. Or maybe it's because when we go there we see people protesting in the streets not to irradiate their food and for more organics. People seem so conscious there. I am now disabused of this abberration. What were those doctors thinking? I hate the precedent this is setting. Is there no safe place for the nonverbal PERSON with Cerebral Palsy?

When did a person who can't speak for themselves suddenly become a nonperson whose organs are up for grabs? Didn't Hitler round up a good many disabled people and let his mad scientists perform experiments and eugenics / sterilization on them? How is this any different? Did no one read Dr. Zeus? " A person is a person, no matter how small" or no matter how different for crying out loud! Why isn't this a given people?!

It's an incredibly awful, misguided, misdirected answer to huge problem of lack of support, medical equipment, etc. for people with gross motor issues and their carers.

It's just so wrong. There has to be a better answer than this. What kind of world is this creating?

Slam me if you will. But have a think about how you would feel if you were trapped in a body and had someone make this decision for you.

Cracking Ellie's sleep code or The End of Nap!

OK - first off, I know she has brain damage and that people with brain damage can have a hard time regulating sleep.

That said, I think she is, dare I utter it....outgrowing her NAP!

Yikes! The sacred Nap with a capital N!

The Nap. A law unto itself allowing all mothers much needed down time. A traditional time to regroup and prepare for the next round of caring for small child 101. Time to recharge for round 2 by way of a sanctified cuppa sanity!

But, yes, it's true, it's not just a nasty rumor. They do, eventually, sooner or later or sooner, outgrow the nap, brain damage or no. And I think my warrior princess is making this developmental milestone with all the irony of that! Sitting, we missed it. Standing and walking, well we are about 4 years behind on those too. But the end of the Nap - right on schedule!

Still, I will gladly give up my cuppa sanity time in order to get that hour back at 3am. It's not a bad deal. And as all mothers of kids with a disability know, there is plenty to do, in terms of working with her. Yes, baby boot camp in full swing. With wonderful pieces of machinery around like the Pony gait trainer, the Creepster Crawler and the tried and true A-B-C foam mat - there is plenty to do, never mind our exercises from Advance which are in bad need of renewal.

So, it's the end of the Nap. End of the Nap. Did you hear that echo?

No, really, I'm OK with it. Really!

;-)

________________________________

Picture Description: Baby Ellie in February 2002 in the NICU "growers and feeders" crib at 3 months actual age, minus 2 days old adjusted age as her due date was Feb 4 and this pic was taken on Feb 2. She weighs about 3.5 pounds and is wearing a preemie onesie from Jannie and Jack. The bump on the top of her head is the reservoir, since removed, that they used to to ventricular taps to control the hydrocephalus. You can see her head is a bit swollen due to the intercranial pressure. See why she is a warrior princess?!

Ellie getting closer to sitting on her own

This picture was taken today by Kristen, Ellie's teacher. In it you can see Ellie's PT Mary Ann stretching her ankles. Ellie is not using her hands to keep her up and is getting very little support from the pillows behind her.

I have to say I am blown away. I kind of forgot about sitting. Not that I would not dearly love it if she could do this on her own as I want her to do everything on her own. But...well that milestone is way, way in the past and when Ellie is home we do a great deal of tummy and floor time and now we are focused on her Pony gait trainer. And Ellie never, and I mean never, wants to sit across from me or beside me - nope - she has to be right on my lap and no where else will do. Or as Ellie's Irish Nanny would say, I'd be under her. Gotta love that! Anyway, sitting got lost by the way side - at least in the GIANT to do list in my tired brain but was clearly not lost on Ellie's amazing team of teachers and therapist and teaching aids at her school.

This picture just caught me totally off guard.
Do you think she will sit?
Should I dare to dream?

~~~~~~~~~~~~~~~~~~
Go Ellie!
~~~~~~~~~~~~~~~~~~

This is such a nice surprise!
Where have I been?

P.S. For those of you who have weathered the drought - I hope you enjoy the pigtails - they are alive and well and as you can see - flying!

All things perfect have ceased to grow

Last Friday, Dave and I got the rare chance to go out - together. Being incredibly sleep deprived the options for our date dwindled down from mountain climbing, roller blading and hang gliding to - dinner and a movie. I chose, admittedly, a chick flick (that one about those women reading Jane Austin). Dave agreed because he owed me one for dragging me to "300". But when we got to the theater, though it was advertised on Yahoo it was not playing. So in a quick decision making moment we chose to see The Brave One with Jodi Foster.

Now, I am in no way shape or form recommending this movie. It's the kind of movie I used to go see before I almost died giving birth to Ellie. Before Ellie almost died during her traumatic birth and all the years of aftermath. No, now when I go to the movies I want to laugh or see a likeable bit of hokum, or be inspired. It was actually pretty odd that we found ourselves in this movie. We just kind of fell into it. It was pretty violent and Jodi Foster plays the part of being a tortured soul wonderfully by looking horrible to the point of creepy. The sexual scenes with their blip in blip out to incredible violence were just plain disturbing. But there was a message in it for me that made total sense and helped illuminate something I have been wrestling with.


~~~~~~~~~~~Spoiler Warning~~~~~~~~~~~~


To put this message into context I have to sum up the plot of the movie. Basically, Jodi Foster's character and the love of her life, her fiance', are brutally attacked in central park. He dies. She lives and wakes up after several weeks of being in a coma. Their dog is stolen by the attackers. In sum she lives through this incredibly difficult, awful experience where she sustains great pain and a huge personal loss. Then she gets herself a gun and becomes a vigil ante around NY City at night.

The message for me came toward the end when another character asks her about how she was coping with being a victim of a violent crime and losing the one she loves.

He asks her, "How do you come back from that."

She answers, "You don't."

That was the message for me. Lately I have been trying to retrace my steps. Regain the person I was before I lost my healthy daughter and hopes and dreams for a life that now is beyond my grasp.

She goes on to describe how who you were becomes a stranger to your new self. I get that. The old me is someone who couldn't fathom where I am now or how I live and think and feel.

The new self can feel like a stranger too at times. It can be discombobulating. It comes down to having to get to know the new self and be comfortable letting go of the old one in the wake of tragedy, hardship and loss. It's really the only way to survive and find solace. Because solace will come.

In Jodi Foster's character's case it comes in the form of annihilating her fears. In my case it has come with seeing Ellie blossom into such a beautiful child, being closer than ever to Dave and really understanding what matters in life in a way I didn't before. And in all that annihilating my own fears.

So I think there is no point in retracing steps to try and regain who I once was - because it's impossible. The circumstances for one won't allow it. I guess my retracing had allot to do with the fact that getting to know a stranger is difficult and scary sometimes. In my case, not as scary as Jodi Foster's character who seeks out her demons in the depths of New York City's long dark night. My demons are far more subtle - sometimes.

It's funny how wisdom comes to you exactly when you need it from the most unexpected places if you are brave enough to go there.

From the outside in

I have been thinking about people’s reactions to Ellie and our story and disability for awhile and wondering how to put this but…I am starting to see that in our case anyway, it looks worse than it is from the outside looking in.

I have said that to people and they don't believe me. And I can’t speak for anyone but myself.

But more often then not when people hear our story and all its gory details or look at our situation they sometimes say and I am sure often think, “Thank god I am not them!” Or “That’s horrible!” I know this because I have thought these things when I have been seen other kids with disabilities different or more severe than Ellie's. So I am just as guilty as the next person for doing this. Lately, however, I am learning not to judge things I don't truly know about or have the intimate experience with to really understand.

I can honestly and easily say, I would not wish prematurity or brain damage on my worst enemy. There is nothing glamorous or funny about it for all you fakers out there(so much in that last statement for another post!). This has absolutely been the most difficult thing I have ever had to live through in this life. And if you really knew me, which most of you don’t, you would know that, that is saying allot.

However, I do wish to make a distinction about my life today, our life as a family as it is these days looking from the inside out.

I have had people say off color things to me recently like my PT for instance. I told him how great a Dad Dave was with Ellie and I said, “Ellie’s a lucky girl to have such a great Dad.” And his reply was to scoff. He literally made a tut sort of sound and said, “Well, she doesn’t have that much luck.”

Then the other day while I was doing strength building he was obviously thinking of my situation again and he said, “It’s so ironic that a mother and a daughter would both get club feet but from such different causes.” He said it so lightly, breezily as he was kicking a soccer ball around waiting for me to finish the exercise.

Please note that I like this person. He is an excellent PT, a good person, he seems to care about his patients and is generally kind. He asks about how Ellie is doing every time I see him. He used to work in early intervention. He is not yet a parent but he is of an age and in a certain amount of time in his marriage that he might be thinking about having kids. He also might feel a little overwhelmed when his natural inclination would be to put himself in my shoes. Because he is an empathetic person though at times he says things that are tactless as I have mentioned.

He is a good example of how from the outside people see that Ellie is different. They see me lugging her around, her not walking, her drooling, her head control not being 100%, her wondering eye, her vocalizations, her dystonic movements. They see that she goes to a different school. They don’t see us at the park much or running around on the street (well not yet – wait till next summer when Ellie is up to speed in her Pony walker!). People see the ambulance rushing us off to hospital. They see our house dark at other times during hospital stays. They see us feeding her through a g-tube and giving her medications.

From my perspective I have a totally different view. A dual perspective if you will because I am aware of all I have described above. Mainly, though, I see something else every waking moment of my life with my husband and daughter.

It is the inside view.

I see this beautiful little girl, with skin that is the color of my bolero blush roses, green-eyed and blondie curls who seems to soak up the sun and emanate it from within no matter what the lighting. I see her cheeky grin and find myself striving to make her laugh just to see her smile and hear her giggle which is the cutest thing I have ever heard. I see a person who opens my heart the instant I even think about her.

From the inside I have a daughter who needs me, who challenges me, who I have to make do things she doesn’t want to do like brush her teeth and tummy time.

From the inside I am a mom who worries about her child (just like all good mothers do). From the inside we are a very happy family: Dave, Ellie and I. We enjoy each other’s company so very much. I look forward to when I get to be with both of them. I look forward to when I pick Ellie up at school each day just to get to be around her. I look forward to helping her overcome her challenges and accomplish what she will - like any mother. I can imagine life without her. I have been forced to do that when she was on the edge. When I do that I honestly can’t imagine how I could go on without her.

So, I am not making lemonade out of lemons or anything stupid like that. To say that is to dimish my life and overlook the enormity of this experience, the wonder that is my life. I am also not in denial. If you read my blog you have heard me be quite honest about lack of sleep and having to make so many phone calls and fight so many battles.

I AM fully immersed in my life which, with all it’s challenges, is pretty good and particularly so for Ellie’s presence in it.

So from the outside you might see what appears different or even lacking. But that is all an illusion. Yes we are different. But no, there is nothing lacking here.

Our normal is perfect in my eyes.

___________________________________________

Picture descriptions from top down:

1. Last Sunday, Ellie at a fairy party laying on a big stuffed dog in a fairy tent stretching her wings.

2.Ellie and Mama at the same event reading a book in the fairy tent. Thanks to Haley for a rare pic of me and Ellie!

Ellie is growing up

This is a picture of Ellie in a corner-sitter at school.

No straps.

No hands holding her round the middle.

Just her.

Sitting.

Only supported by the chair itself.

Looking very grown up.

In the past 5 months she has gained 6 pounds, 2.5 centimeters in head circumference, 2 inches in length, and vocalizations that are starting to consistently sound like words. She is recognizing that signs take place not only at the chin but on the head, face, chest and arms. She is doing her best to sign back - all the time. She started school as if she had never left it - never missing a beat. Thrilled to be there every minute. She is working with an eight year old student to help her learn to use a qwerty letter board which is pre-voice output training and she is pacing with this kid wonderfully.

Awhile back when Ellie was really sick and not making any of those pesky milestones I was completely freaked out thinking that she might be in the baby phase - forever. It was a really scary time. Then she started to smile and express herself ever so slightly. Then she gave me her first nuzzle which is an Ellie hug. Then she started to make sounds and let us know what she needed. Today she is so purposeful and funny and smart. She makes me laugh all the time.

Yesterday morning upon waking she wanted me to do the 5 Little Ducklings Song - which I did. As soon as it was done she turned her head and pointed - yes pointed with her index finger extended (ok - only a parent of a cp kid will get how wonderful that is - but trust me - use of the index finger is critical) toward the door and said Ou! Indicating to us -that is was time - TIME PEOPLE! to start the day. Now.

My little girl has moxy. My little tiny preemie baby is no longer. She's a little girl. Who sits and points and has a mind of her own. It's funny. I never thought I would, but a part of me misses little baby Ellie. I guess that is the thing about being a mother. You take joy in your child at every age at the very same time as you know that with all their glorious changes they are moving away forever into their own independent world.

Edit: I just found out from Ellie's teacher that there is actually one strap around Ellie's waste because the seat is so shallow. But that is still so great if you consider that normally she wears full on shoulder straps as well. Her trunk support has just gotten so much better.

Should Doctor’s give Patient’s Notice?

This has been a rough week in many ways.

We are pretty sure Ellie’s identity has been stolen, which is just a huge stinking hassle to fix and one more thing we have to track closely for the rest of eternity.

Oh, yeah, did I mention she hasn’t slept through the night since mid-July?

Mid July!

Yes – up every night for 90 minutes to 2 hours. I am a little on the stressed out side by this. However, this is not yet another post about those bastards – the Goods of Sleep Through the Night – who clearly hate me.

No.

This is about a continuity crisis I am having with Ellie’s medical team.

Ellie’s Neurologist, whom we adore, who is excellent in every way from bedside manner to expertise especially since she specializes in hypoxic-ischemic brain injury and PVL, dumped Ellie as a patient on Wednesday.

We had our usual good visit: me with my list of questions, her with her thoughtful answers. She looked Ellie over after she was weighed and had her height and head circumference measured (44.3 cm’s there – the most growth she has had in ages and not due to hydrocephalus). And then she asked me if I had any more questions. I said no, that about does it.

Then she said, I have something I want to talk to you about.

Ok, I said.

I can’t be Ellie’s doctor anymore.

Oh no! Why?

Well, my clinic specializes in newborns up to age three and they have been cracking down on me. I would have done it before but didn’t because of the seizures (they surfaced May of 2006).

So the conversation went. She gave me the name of another doctor, sort of new to the hospital. I thanked her very much for being so great and told her I would miss her. I kept getting the vision in my head of our very first visit with her when we had just moved here and Ellie was a tiny little 13 pound 11 month old. She took Ellie right out of my arms and carried and weighed her, herself.

She said to send her a Christmas card. I said I would. She gave Ellie a little velvet flower with a smiley face and attempted to get Ellie’s attention to say good-bye to her but Ellie wouldn’t look at her. I wondered if she knew or was just tired of sitting and wanted to get to school. She went to shake my hand but I gave her a hug, which she returned and thanked her again trying not to lose it.

And we left.

I was in total shock. It was just like a break up. I started wondering what I had done wrong. Was I a pain in the ass parent to deal with? Why Ellie? Was she dumping all her other aged over three-ers too? What had I done wrong? Am I am horrible person? Will anyone love me? (just kidding about those last two)

She had every right to do it. I probably knew when she first took Ellie on that she could only see her until she was three. I also forgot that completely. She’s a great doctor and I am so thankful for all she did for us. I felt really safe with her on the team. I found out later from Ellie's pediatrician that she had just received some gazillion dollar grant to do more neonatal research so she has to free up her time. That was helpful in answering the, is this personal question. Which it wasn't (and it hardly ever is - that's just where I go - luckily somewhat lightly these days - most of the time anyway - but that is fodder for another post).

The scary part is that I called the doctor she recommended to take over Ellie’s care, but he can’t see her until January 2008. So my kid, with the three shunts, seizures, PVL, and cerebral palsy doesn’t have a neurologist on board for 4 plus months?

No way.

I have been freaking out about this since Wednesday. I spent all of Thursday and Friday calling doctors offices, writing them emails and faxing them letters to ask if they could see Ellie in less than 4 months time. I got some other recommendations from Ellie’s pediatrician but they can’t see Ellie for almost a year – all three of them!

Geez! I am sorry to report that the brain injury - CP business is booming in Boston.

It did dawn on me today that Ellie’s pediatrician, who still works with Ellie’s neuro…, er, I mean former neurologist or Ex – neurologist, can hopefully follow up on the scripts I was supposed to walk out with from that last visit where it was decided to change Ellie’s seizure medication dosages, but totally forgot, being completely flabbergasted and in a daze. I did call Ex-neuro’s office about those but totally felt like a stalker even though I explained that I was just following up on what was decided in that last visit. I haven’t received a call back… So I will have to call again, feeling even more un-entitled and pesky.

Which totally sucks.

Ellie not having a neurologist on her medical team is like trying to sail a ship without a rudder: scary and unfathomable.

Maybe Doctors, if they are dumping patients with a chronic condition, should give them notice – like say until they are able to line up another doctor to cover them?

What do you think?