Ryn-terrupted

I passed my dissertation defense today  - May 1st, 2012.  I did it! I earned my PhD. ;-)
Thanks to everyone for their support and kindness about this.  It was a looooonnnnnggg haul.   So D-Day turned into May Day but no may-day needed! ;-)

I am a bit punchy at the moment as I didn't really sleep before the defense and I am on Boston time in Los Angeles where my school is.   Ellie made me a card to take with me.  She used her voice to tell her teacher what to write.  Here is what she wrote, "Hi Mommy, I love you. Wow!  Love Ellie"

I love it, "Wow! "   As usual Ellie get's it totally right.  She's such a great kid.

Now that this burden that I have lived with for so long is gone I can move forward. The huge thorn in my side is gone.  This was a big dream for me - I can't quite wrap my head around it that I did it?!  The defense what nothing like I thought it would be either. I was prepared for really hard technical questions about the statistics or the research design, etc. But it was fine and fun and it opens up a lot of opportunities.

But right now I just want to go to sleep because I am so tired after the last few months of being up until 2am most days working on my dissertation.  Which is now done?! It's amazing. ;-)

End Game

It's been a little while since I have been here. This is a quick update. Ellie is not sleeping but growing fast, fast, fast. Her room is built but we are fighting with insurance to get a lift. That part of it all is awful and draining. Ellie says she likes her new room but we have also been struggling with Home Depot get her black out blinds. We ordered them, paid for them, they took three weeks to send the wrong ones that let a ton of light in and then have been not getting back to us for another three weeks. I thought they were supposed to be customer friendly but I seriously wonder if I will ever shop there again. Ellie is not sleeping in her new room though she loves to play in it. However, she is up EVERY night. The room is bright, small but with lots of windows and my Lady Muck is a light sleeper. However, this morning she had breakfast in bed which is a particular thing she likes to do when I am the one getting her up. She is as sweet as ever.

Additionally, every little tiny extra thing to do feels colossal. My dissertation journey is in the end game. I just sent off a completed draft of the entire thing - 278 pages to my committee....

I am tired. Dave is sick and tired of me and my dissertation too. And I am sure Ellie is sick of me being away from her having to work on it every day after working at my job. Thank god I have found amazing people to cover her afternoons. But still, this whole thing, going back and fighting to have this dream of getting my degree feels a bit overwhelming at the moment. Maybe I am just tired but it also feels like a bitter pill that I didn't get this 10 years ago. I wish I had the sanity at that point to fight the school for what my committee did back then. But then again, it was all about Ellie for a long, long time which I am sure saved her life and mine too.

It's just a hard night. Instead of celebrating I am worried about my discussion section - the last chapter where you say what it all means and what it was all for. I am looking forward to feedback. And I wonder if Dave will ever forgive me for taking up so much time. We always feel like we have no time and yet we have things we both want to do and accomplish. Right now those things are at odds with each other and that is a hard place to be. I wonder if our life will ever get any easier. If Ellie will ever sleep, if we will ever get the things we need for her like the bloody lift, her new chair because she has out grown hers, etc.

Not happy at the moment. Am wondering what it's all for and what the end game will turn out to be. I am defending it on May 1. Any good luck or mojo or good vibes you can send me on that day will be much appreciated.

A person is a person no matter how small...

There have been some disturbing events recently that I have discovered via my Twitter account. The first involves "dwarf throwing". I am disgusted by this in general. It's amazing that there has been, to date, no prosecution. Even in the writing of this article about it you see the violent offender called a "prankster". Really? Someone who throws another HUMAN BEING (who is not bothering them in the slightest I might add) down on hard ground resulting in them being paralyzed is a "prankster"???? What is unbelievable about this and so disturbing are many things including the obvious a) that this takes place at all, but also b) the reporting of it is almost conspiratorial with the violent psychopathic act itself by naming the perpetrator as a "prankster". Just plain wrong on so many levels.

Secondly, this case made me very sad for Amelia, her family, for all people with physical differences in general, and our society. I hope Ellie doesn't need any organ transplants because apparently people with developmental delays are not worthy to be on the list, not worthy of doctors time to operate (even with a family donor) and just plain not worth saving. Shame on Children's Hospital of Philadelphia (CHOP)! Things like this fuel my fear for Ellie's future when I am no longer breathing or for that matter even when I am. I hope this mother finds some medical help for her daughter elsewhere. Grrrrrr!

If you are interested in chiming in, in a proactive way, sign the change.org petition. They are looking to get 100,000 signatures and were at 21,000 plus at the time of this post.

Picture Description: Ellie playing with new found Fijit friends. Santa was very good to her this year!

Call for Participants!!!

Hi Everyone,

I am collecting my data for my dissertation on innovation and need your help! If you work in an organization that employes at least 20 people and are over 18 you are eligible to take my survey.

I am studying the factors in organizational life that lead to innovation. The ability to innovate is how our society will advance globally as well as support children like Ellie who benefit from innovations like her voice output device. If you are interested in contributing your knowledge of to this study go to my survey at: http://svy.mk/vDzz2M

To read more you can go to my website: radicalinnovationstudy.com

Additionally if you complete the entire survey you will be entered to win one of three $50 Amazon gift certificates!

Thanks to all!

Ellie is growing up

Images of today: Ellie in her car seat. This picture shows how tall she is with her head coming up so high. Just last year the seat used to envelop her totally, now she is out growing it. Second image if of Ellie and Dave pulling on a "cracker" at Thanksgiving. The last picture is Ellie chatting with the ducks by the river at the hotel we stayed at this week while they were putting the floor in her room. Even with the low volatile organic compound (VOC) coating it is still pretty stinky! So we were out for a week to get this part of her new room done. Two more weeks and she should be in her new room!

"You don't have to break in two to love someone"

This is the line uttered by one of my favorite characters in a great story called "What Dreams May Come" (also a movie with Robbin Williams) and that line keeps running through my head when I think about all that is before me to manage lifting Ellie.

My back has three damaged discs already - two are properly ruptured and one is bulging but I think I actually ruptured it too about a month ago. But I didn't go to the doctor only the chiropractor because I didn't have time. See the problem already?

And I keep hearing the line only it now goes "ya shouldn't have to break in two to love someone".

I have dreaded this day and now it's here and it sucks. We wiped out all our small savings to build her a room which is still not done. I got a loan for that as well - so more debt - yay! Our car door does not open very wide so it's a hard lift getting her in and out of it that often leaves my back in bits or Ellie with a bump. This is just not right. I am exploring options of getting a used minivan with a rotating seat. A conversion van is out of the question - just way too expensive. And none of this is covered - nor is any part of her accessible room by insurance or anything. Let's hope neither of us gets laid off.

I feel like we are walking a tight rope and it's a little scary. I am done with trying to be super mom. I will still go to the gym and do the physical therapy and strengthening exercises the back boot camp people gave me. I will keep strength building. However, bird boned as always, I am at my limit. I wish I was some sort of amazon woman body builder type with big large bones that would make lifting Ellie no problem. But I am not and it is a problem that is getting bigger by the day (also great problem to have if you have read my post on counting her weight in grams). I have also thought about hiring a bouncer. I imagine some big guy just hanging around reading the sports pages, head shaved, wearing black, enormous but benevolent and waiting around patiently in between lifting Ellie for me from car to chair, from chair to bed, from bed to chair, from chair to couch, from couch to chair...you get the idea. But that is just too weird. ;-)

So how do I put my foot down and protect my back so that by the time I am 50 I can still stand erect? How do I say no more lifting and still take care of her? I haven't figured it out yet and right now as I write this I am in a bit of despair. Dave is going to be traveling soon and that leaves all the lifting to me. So it seems I may have to break in half to love someone. I am not happy about this. It is energizing in that I will once again have to fight the school people who think it's alright that Ellie ride the bus with people who won't look me in the eye and talk on cell phones the whole time they are driving her. I have to find some way to buy a used car to get the swivel seat thing maybe which means haggling with the dealership which I am not good at. As well as take on more debt which may not be possible.

I am overwhelmed. Ellie is maturing very fast it seems so we have to have that conversation with the doctors too. If this is her natural time to mature ok. BUT if she is maturing too quickly so that her final height is under 4 feet - I am so not for it. My whole goal with all medical interventions she undergoes has been to try to preserve her body to what it would have been had her brain not been deprived of oxygen at birth. The brain is plastic and resilient and nano technologies are coming along quickly. You just never know. And if there is some massive healing in her future I don't want her to end up being less than 4 feet tall - that is just not right. I want her to grow and mature - it's her right of passage. So we need to figure this out too and the truth is - other than the bone age hand scan - it's hard to tell what would have been.

Brain injuries really suck for the record.

To flip the coin to the sunny side, it's very clear that she is making progress in school. Awesome progress and happily so! She "ran" in a Turkey Trot which involved a large, loud crowd and she managed it. She didn't freak out at all. This is literally a first. She is also making progress in her academics and her teacher this year sends home excellent homework and this is a focus. Which is such a balm to me. Why not throw all the academic stuff possible at Ellie and see what she does with it? I hate it when anyone underestimates her.

I also made a connection with someone who really knows the Feldencrais landscape so we will be trying that. Dave researched this electrical stim therapy as well that helps build muscle so we are looking into that as well. It feels good to be once again looking at healing therapies versus solely medical management issues. On that front we are never doing botox again (we have been using it prevent contractures in Ellie's ankles - to no avail I might add) and I regret we did it at all. More on that when we figure this new path out.

Also, my study for my dissertation was approved and I will be collecting data soon and hopefully completing my Ph.D. in March of 2012. Completing that will be like taking a huge bloody thorn out of my side that has been there for the past decade. I hope it will feel good and won't tear too much in the extraction. Writing the lit review was like giving birth so maybe that was the worst of it.

I have to remember that these are all really good problems to have and that it could be way worse. Yet I am restless. Very restless. It's hard to stay present - it's uncomfortable every day.

I also keep remembering this story:

There is a woman that is very unhappy with her life and she goes to a yogi for help. The yogi says, "This is what you need to do, move the chickens into the house with you." She is surprised but complies and comes back to the yogi in one month and tells the yogi that her life is even worse than it was. The chicken's are always underfoot as are the children. They are also really noisy as are the in laws so there is a constant din. The yogi says, "Ok then, now move the cow into the house as well." She complies and goes back to the yogi again but this time after only two weeks. She tells the yogi that she is at her wits end. The cow is taking up any extra room they had and is nibbling on all the rugs and moos really loudly all the time. The yogi tells her, "Ok, move the chickens and the cow back into the yard". She does this. She sees the yogi around town and thanks the yogi for all the help and tells the yogi that her life is oh so much better and she is so grateful. ;-)

Right now with the construction, the dissertation, my re-injured back, the doctors appointments, the search for proper transport - it's all cows and chickens. But I suspect it will get better. Thanks for listening.

Image descriptions:

Ellie in pink winter coat looking for me as she rides Splitty last Saturday

Ellie with feathers still in her hair and ribbon from the Turkey Trot. Also, notably, siting, propped but unassisted!

Happy Birthday Princess Ellie!

Ellie turned 9 today. 9. I can't believe it.

She had a GREAT day too. She had a joint birthday party at school with her astrological twin Xavier who was born to the minute at the same time. How amazing is that, that these two babies both born out West ended up at the same - one-in-a-million pre-schools?

Ellie's favorite gift was a headset I gave her so she can listen to her iPad or iPod touch or her Voice output device with them. She liked them so much she wore them for the entirety of her birthday dinner even when we were not using any of the devices mentioned. When she was trying out the new headset with her toys she LOVED it!! Many, many giggles.

She also got this great little purple robot that talks back. It's called Willa by Fijit. It's hilarious and I was VERY impressed by the fact that Ellie accepted this new presence into her world readily. Those of you who have been with me for awhile have read stories from the YEARS when any new thing, especially toys, were considered baddies, not to be trusted or tolerated even in the same room. My little girl has come a looooooonnnnnggg way since those sensory integration filled days.

Ellie was smiling all day. She ended the day by snuggling up on me but into Daddy's shoulder - her preferred fall asleep mechanism. I am glad she had a such a great day and thankful to her teachers at her school who threw her such a great party and made her feel very special.

For me the day was a bit melancholy. I am haunted by the day she was born so many years ago. Though I had a very busy work day that included meetings and even a presentation, in even the smallest spare moments I could see certain scenes from that day in my minds eye. The pain and Dave making me go to the ER. Seeing her for the first time in the isolet hooked up to 20 tubes. Dave calling his Dad and pacing outside my recovery room door- freaking out.... And most of all the intense gratitude that she is still here with me, giving me this opportunity to be her mom. That she has done so well and is such a loving, smart, and sweet little kid. I feel grateful but sad too. It's been hard. And lately with building her an accessible room, working full time, and trying to finish my dissertation - we are at maximum capacity.

However, I think my visions of the past are the ghosts of all women of the day they became a mother. Ghost of emotions that run from total joy to complete horror in our case considering how wrong it all went. In the wake of it all, it's never far from my awareness and my gratitude that Ellie is a miracle and a wonder in that she can do all she does and that she is here to do it.

Trinity's Tree

The best response when you make a mistake

Ellie and her teacher were reading a book about a little boy who accidentally fills the washing machine with dish soap creating an avalanche of bubbles and foam throughout the house. Ellie's new teacher Mary was evaluating Ellie's reading comprehension. She asked Ellie, "What would your mom say if you filled the house with suds?"

Ellie told her that her mom would say, "I love you."

So true. ;-)

That is definitely the first thing I would want to hear too. When we make a mistake we know it for the most part and for some of us the inner dialog may be punishment enough.

Defense

Carry on.

Send me any good vibes you can on October 3.

*Photo of the massive tree Irene threw 10 feet away from our house in our back garden. It took out his apple saplings and made a deep trench in our hill. We are lucky it wasn't worse.

Derailed

My plan was to work on my literature review from the moment Dave and Ellie left for school until I have to pick Ellie up and then come home and work again because I have some help looking after Ellie after school.

Actual events of the day: Ellie wakes up, can't eat, pale, dark circles. Migraine, accompanied by vomit, pain, restless tossing and turning attempts to sleep. My role, administer love, care, meds, and relief. Relief also means holding onto the pressure points on her feet for long, long stretches to relieve the constant tremors in her legs and feet (pain/stress induced muscle spasms).

And so it goes. Am trying hard not to get too cynical about ever finishing my dissertation within the tiny window of reprieve that will only exist between today and May 11. ;-(

The 7 Billion Faces of Normal

perspective |pərˈspektiv|noun

1 the art of drawing solid objects on a two-dimensional surface so as to give the rightimpression of their height, width, depth, and position in relation to each other when viewed from a particular point [as adj. ] : a perspective drawing. 2. a particular attitude toward or way of regarding something; a point of view

I want to hold a million different perspectives in my heart and head. Having just one is so limiting. Sometimes I get stuck in my one perspective and it's a small world when that happens. A brick is only a brick.

I rather live in a world where a brick is a brick and a bookend, a block, a paperweight, a sculpture, a plate, a step, a footrest, a prop, a doorstop, a scratching post for the cat I don't have, a shelter for small things, cookbook holder, a gift, a walk way, a yoga block, a pillow, a stepping stone, a foot warmer on cold nights, a pan to heat up food, etc.

I want to have a million perspectives so I can see my world from as many angles and know they are pieces of the truth. Instead of looking at all the limitations I want to see all the possibilities, all the functionality and beauty that is right in front of me, all the amazing miracles. Instead of trying to clear all my "filters" or lens or perspectives, through which I interpret the world, I want to have no perspective and all perspectives outside my own simultaneously. I want to be able to look through a million different lenses, be limited by none of them, and be able to shift between them as easily as glancing up at the sky.

Won't you join me?

Carpe Diem!

Carpe diem, quam minimum credula postero.

Seize the day, and put no trust in the morrow!

Picture: Ellie dancing.

The Price of Admission

The weekend before last I met my two sisters in Washington D.C. for our first ever girls weekend away. I have been envious of Billie who does this from time to time with her friends. She has been such a great role model for me in terms of how to deal with all of this, times two no less, with grace and self care. So when my little sister suggested it, instead of feeling too guilty to go and too worried to leave Dave and Ellie on their own, I went. It was a milestone weekend on many levels and a healing thing between the sisters. Ellie also got even more attached to Dave and gave me the cold shoulder for more than one day....upon my return. But that is another story.

We went to the Natural History Museum looking for Ben Stiller, who sadly wasn't there though his dinosaur buddies were. I can't wait to take Dave and Ellie there. It is so clean and everything is completely accessible and viewable from wheelchair height. The Boston Science Museum which is not as clean or as accessible sure could take a leaf out of the Smithsonian's book!

One thing that really struck me was an installation of a Neanderthal male skeleton. It showed that he had a severe head injury. The back right side of his skull was bashed in. However, he lived many years beyond his injury and the notes on the installation said he was well taken care of by his Neanderthal mates. This was some proof my heart needed. Amy Mullins in this wonderful talk references that Neanderthals would carry their wounded and disabled for many miles and kept them alive and with their groups. Here was proof of that. What does that say about their society? Life was tough back then to be sure and yet they took care and effort and scarce resources to keep their own together even after horrible injuries. What does it say about our society who for years locked similar individuals up in institutions and created an entire infrastructure that is less than accessible to all? The proof of Amy's reference gave me hope. So when I call this post "the price of admission" I am referring to all the things we do for Ellie and others do for her to help her be with us. A T-ball game complete with volunteers to help push the chairs and engage the kids. A room on the same floor as the major activities of the house so Ellie can always be with us and we with her. A $7,000 voice output device that MassHealth paid for so Ellie can talk to everyone because she can't make her mouth and vocal cords do her bidding in order to speak. It's the price of admission. I am happy to pay it. We have been very fortunate to have found advocates who work tirelessly to this end because in today's society there are many barriers. I was delighted to find evidence that in the distant past, there once was a society who happily paid it too.

This Sunday Ellie played her second T-ball game of the season and got MVP with 6 runs and a positive attitude...kind of. She didn't like the wind or the slow pace of the game. She wanted to be slightly more hands on - like literally get to touch the baseball and throw it. Her favorite thing is batting and then "running" to the bases. It's all go, go, go! We just received her voice output device and I think I need to program it for T-ball to say things like: "Batter, Batter!" and "Let's get the ball!" and "Go, go, go!" This year so far the game was moving a bit too slowly for her. We recently saw Ellie's eight year old cousin who also experiences sudden bouts of boredom. It's always awesome to see my niece, who I adore because she's great, and she affords me the "typical" kid comparison (though truly I think she is exceptional and words are so darn limited - but I hope you know what I mean) always teaches me loads. Turns out eight year olds have low boredom threshholds and are given to spontaneous bouts of sulking turn whining...;-) Ellie, engaging in said behavior, in this sense is acting her age. Ya gotta love that.

T-ball overall has been very, very good to Ellie and us. So far she has a glove signed by Ben Affleck and a ball signed by Big Pappy. Not bad for an 8 year old. The pictures are of said signed glove and Ellie celebrating a run with her two buddies. The volunteers from the high school leagues are awesome and Ellie gets a lot of attention. We get to watch and take pictures and cheer her on like mad! It feels as close as we are ever going to get to a typical outing and so it's a novel and fun because I get to chat with other moms and dads and no one pulls the pity face. We are all in the same boat and have an hour of little league T-ball like some many other parents. It's just that our hour is an unexpected gift due to the efforts of Marie Shea who started up the whole thing. Thank you Marie!

We are at the magical over 4o pound plus mark and have to quickly get our act together regarding home adaptations and a wheelchair van. I hate those words "wheelchair van". But nowadays they are not the hollowed out deathtraps they used to be. Turns out you can convert any minivan into a wheelchair van for about $15-30k and sometimes find a used one... see here. If that doesn't raise your blood pressure, then you can also figure in the cost of converting our back covered patio into a downstairs room for Ellie. A room that will fit her bed, wheelchair, and an adapted bathroom with a ceiling tract.

So it goes.

Today we met with a lady from an agency that helps parents navigate these expensive waters to raise funds and find the right people to help. It's a whole lot of help you have to get to do all of this. I am overwhelmed. Sometimes it's hard to ask for help. Edgar Schein's lastest book, Helping: How to offer, give, and receive help. goes into the differences between the helper and the helped. It's a good read on many levels especially in light of my career as an organizational psychologist on one side of the helping equation and my life on the other side of it as a parent of a quadriplegic kid.

To reframe, the good news is that Ellie continues to grow and develop. I kid you not when I tell you that in the first months of her life we counted her weight gain in grams. Grams. Do you realize how little that is?! Each gram she gained was an affirmation of life. One tiny bit of mass that was building up her tolerance to this physical world.

Last year she gained 10 pounds which is 4535.923 GRAMS!

In retrospect to have the issue that she is getting tall and heavy is a fantastic problem to have. A really great one. Once I get over the heart stopping cost of it all and go into creative problem solving mode I am sure between Dave and I and all this guidance we can work it out. The start of things is sometimes when they seem the most challenging. I know from my students that learning is hard and I now have to learn this whole new vista of conversion vans, home modification loans, door sizes for wheelchair access, side loading versus rear, etc. What is that new mantra everyone is saying, stay calm and carry on...yep, that's about right.

Those of you who are reading this, if you have direct experience, please weigh in on your thoughts regarding rear or side loading vans. Which do you prefer?

Stay tuned.

Conversations with Princess Ellie - 3AM Style

Ellie has been getting up at night for about one month now. Almost every night and seriously people I don't know how Dave and I did it for so many years. We have had about a year of her only getting up a few times a month which is like a huge vacation for us after her being up every night and vomiting or being sick and being in pain and before that when she was really little, we would be up with her to keep her breathing...good times.

Her being up again...kinda sucks. She started waking up I think because she is cutting a tooth. She has one really cute adult size front tooth and the other is taking ages to come in but has started to in earnest over the past month. Also, she gets up because she is growing. I was never a night eater as a kid but Dave was - so it's his fault! His gene pool that says, "must have full tummy to sleep!".

So we have been feeding her at night...

Ellie's first Pedi, told us when she was little, if you feed her at night you will train her body to wake up at night to be hungry and need to eat. Now all of you parents out there with kids that are on a continuous drip because your kid needs the calories - this does not apply to you. We have been there and when Ellie was on the drip her reflux was so bad that she woke up every other hour. That is how we spent the first 2.5 or more years of her life. So if you are living that my heart goes out to you.

Now that Ellie is bigger she still wakes up from reflux but also due to hunger and like all well trained NICU parents we get up, feed her, hold her up so the acid goes down and in doing so also end up playing with her. You just feel bad when Ellie is in pain and then she innocently signs "iphone" and you find yourself giving in and before you know it (especially if you are the dad of such an adorable and at times distressed Princess) you have set up her favorite seat and have a video going along with a hot meal all at 3am until 5am...and it starts to get regular.

Gah!

Two nights ago when Ellie was up, I went in to her, because, oh and this is another thing about raising a kid who has been known to have seizures, and is at risk of aspiration and can't sit up on her own, "cry it out" is medically NOT an option. We can't not go in. We have to check. I go in and I hoist her up on my lap - which takes me a try or two because she's heavy now, and I am annoyed and I say, "Ellie, why are you up? What do you want?" And she looks right at me and signs quite confidently, "iphone".

I say, "Ok let me get this straight, you are only up because you want to play?"

She signs, "yes!" Like, well done Mama, that's right!

I then proceed to read her the riot act:

"Ellie, you can't wake up in the middle of the night just to play any more because Mommy and Daddy are old and we need our sleep. You need your sleep too because you are a big girl and go to school. Mommy is working on her dissertation and needs rest to do that well. When you wake up at night from now on we are not going to eat or play. You are going to have to eat enough in the day. We will always come to help you and if you are in pain or sick we will hold you and help you until you feel better. But you can't get up at 3am any more to play. I love you."

I said all of this pacing each word and pausing between sentences. Sometimes between the sentence she would sign, "iphone" but after the third sentence her sign was more of a question, "iphone?" accompanied by a raised eyebrow.

Then I said, "I am going to hold you for 2 more minutes and then you have to go asleep" To which she reached down to touch her pillow to indicate for me to put her back on her bed. I go to lift her off my lap but she says no and holds my arm tight...

Was that a bluff?!

Ellie's got some eight year old chops to be sure! Ha! (This is the part of me that is always routing for her to give me a hard time and show that spirit and intelligence - that part of me LOVES this!)

I say, "Ok one more minute then."

I hold her for one more minute and then put her on her pillow and tuck her in and she grumbles but roles on her side, inserts thumb and still grumbling acquiesces to our new program of sleep through the night.

Wish us luck because the next stop is super nanny!

Conversations with Princess Ellie

Ellie has a definite sense of herself as a person. I don't think everyone does. I learn about her perceptions all the time. I look forward to the day when we can have even more conversations and that day is coming with her Dynavox Maestro that is on order though it is taking a long time.

Ellie comes home from school (I or one of her PCA's drive her) and she lays down on the bed to stretch (sitting when you can't do so on your own all day is really hard on her back) and plays with her favorite toy the Vtech Sing and Learn Globe. Often, once I have schlepped her and all her stuff in the house, I sit down beside her and ask her about her day. Typically she is in full on conversation with her "globee". I know I am interrupting. They talk or Ellie talks to globee. A lot. It's funny and cute and I wonder if I could understand her singular, Princess Ellie language, what she is talking about.

Many of the things I find out about her are from me asking things like: what's your favorite place on the globe?, what's your favorite flavor?, color? did you like this or that? I realize this form of communication is imperfect and sometimes the question leads the questioned. But it's what we've got right now so I will take it.

On one of these days after schlepping I came in and said, "Hey Ellie belly, Boogalu, Little Boo, Princess Ellie I am so happy to see you!" Ellie has a lot of nicknames. She looked at me and laughed. Sometimes when she looks lines of conversation form in my mind. It's hard to describe but body language is 75% or more of conversation. And Ellie communicates just like anyone else in this way. So it occurred to me from her look to ask her, "Ellie, what do you like me to call you?" And I held out my fist and as I extended a finger each one represented a choice. This is our weird multiple choice style communication that I hope ascends one day into a true dialog. So first finger out was "Ellie-luv" Second was "Boogalu", Third was "Princess", Fourth was "Beautiful" and Thumb was "Ellie belly". Ellie listened silently and then quickly picked "Princess".

I said, "You like me to call you Princess? You like that the best?" She signed "YES" with great enthusiasm throwing her yes sign up high over her head.

Princess it is. ;-)

Life after 8 and other news

When Ellie was little I would search the blogosphere for information about kids with CP and multiple special needs and I would always find that the blog ended when the kid was about 6 and it was maddening in terms of outcomes. Like, what happened to them? How did they turn out? What does this mean? And of course the smaller voice whisper-shouting, "I need to know how this is going to turn out!! Now! Please?"

But now that Ellie is 8 I am there in the middle distance of her childhood. I have a lot of answers I agonized over when Ellie was under 2. And, obviously, there are still a lot of answers I don't have, like what will happen to her when I die? Which, let's just be honest here, is the scariest, most upsetting, soul crushing question of all.

I still don't feel any cheerful carefree optimism about that. Not that there is nothing to be optimistic about. Not that there won't be people who love her. Not that there won't be amazing outcomes. I don't feel optimistic about that because currently that is not how I am made - on that topic.

But at eight, and maybe I should have learned to trust more, I can tell you many of the fears I had when she was in the NICU or at ages 1 and 2 are gone. She is not a "vegetable" and well beyond that she is the coolest, most beautiful, smart, funny little eight year old I could want. I am happy being her mom. She goes to school. She has a life and there are other people in our world that love her and us. She rides a horse for crying out loud! She EATS. She is growing and gaining weight. She LEARNS and loves and laughs - a full belly laugh now that I really must record and put on this blog because Ellie's laugh would make the most stodgy, serious, kill joy of a person laugh too.

But why did all those other bloggers stop writing? I think I know. Time. Now that Ellie is so much better there is far more to do outside the home. Instead of keeping a vigil over her sleep (where I would find myself writing) I am taking her to ride Splitty or to school or to the museum or to the beach or to grandma's house. Instead of holding her while she is sleeping off a brain surgery we are dancing around the house burning up all that enviable eight year old energy that is seemingly inexhaustible or we are learning at the computer or working using her "voice" (which I need to post about). Or we are eating - which still takes considerable time but at least it is by mouth with such non-exotic things as Mama's Spinach Pasta, Green Goodness, or Eggy Pudding. All of which are made fresh and with ingredients that are off the shelf versus ordered from England. For those of you who have read through this blog (which is amazing if you have) you know what I'm sayin.

Also, because she is well enough to do these things, I am working more, far more. At this point in life I am finally getting to pick up the wreckage of my pre-Ellie life. And wreckage, be assured, is NOT a strong word or an exaggeration of any sort. A big chunk of that wreckage has to do with my dissertation and doctoral degree I was making revisions on when Ellie was born. Imagine meeting all the requirements for a 4 year Ph.D. program (classes, internship, entire dissertation) and then not finishing? In short it was a hard, bitter pill I was never able to digest or synthesize. I tried to mediate it away, to get Zen about it, then go all fate/wasn't my destiny on it, etc. Tried to forget. But I couldn't. And then by some miracle of good karma - because it seems apparent that I must have a little built up somewhere, that opportunity is on the table again. I am being given the chance to resolve this - to finish it - to complete this dream. So of course I a sitting here procrastinating and blogging to all of you about it.

What this made me realize though is that we are in a different phase of life. The baby phase, that I thought would never end (where they don't sleep ever and your child is total care and for us that meant so much more than with a typical kid) has ended. Ellie is still "total care" but...she eats (not on her own but 99% from a spoon), she goes to school every day, she has autonomous play for short periods, she can sit alone (with support) which is a big change from having to hold her head up so she wouldn't stop breathing. In short, life is better. But busier and taking place more out in the world. It's nice to be back in the world though I must say it was a slow and painful process getting back out into life. Even so it was worth the journey.

Now to find a balance and pace for this next bit of life. I am not sure what it will hold nor am I making any inane predictions that all will be well, considering all has happened, that would just be stupid. There is one thing I learned from this whole thing that pertains to this post and where we are now and it is that the best way to spend your time is being present and appreciating by simply being awake (truly awake) to your own life in the moments it is happening.

We shine through our broken bits

I remember my friend Julie once commenting here that our broken bits are the places that spirit can shine through. I loved that. And when I say broken, I do mean parts of us that are changed forever. I don't mean parts of us that are bad. Ellie in many a physician's and most people's view has a lot of broken bits mainly in her brain. I remember when she was born so early feeling guilty like I had broken my baby. And yet, here she is 8 years later, signing with Santa, rocking out to TMBG and engaging the world. She is powerful in her world and has made my world a place I want to be in all the time. That's powerful and important and something that makes the world a better place.

A student of mine quoted Emerson in response to seeing an Aimee Mullen's Ted talk. I just read it in grading their work and had to pause and reflect - here, out in the blogosphere,because that's how I roll. Emerson said, "Challenges are what make life interesting, overcoming them is what makes life meaningful." Aimee Mullins, in her TED talk on adversity, defined adversity as change we have not yet adapted to.

There seems to be a key in there that is particularly germane to understanding the quality of life I experience raising a child with special needs. Different but meaningful. It's a meaning packed life every day and sometimes in this way, intense. But somehow life wants me to get this message. I saw a movie recently, and of course, Hollywood can glamorize anything, but in the end the guy chooses to love his girl, despite her huge challenges which will become his challenges. He tells her he doesn't want a life where their biggest challenge if feeling guilty over having a cleaning person or driving the right car. Instead, having a life that has real meaning.

So how do we constantly make meaning in our life? For me, when Ellie takes a step, makes a small leap, cries, hugs me, or eats, there is meaning there and we witness it via love, sweat and tears. I am not sure I have any answers but I am struck by these questions: what is a meaningful life? What is a shallow one? Do we oscillate between the two simply based on our level of engagement? How does any of this help us experience love and happiness and the feeling of being connected? How resillient are we?

Picture: Ellie signing Thank You to Santa (who also knows ASL!).

Eight is GREAT!

I can't believe she is eight! I can't believe all her NICU buddies are eight! I can't believe it's been eight years since her birth. That just seems so incredible. Several friends and family have said the same mantra, " I can't believe she is eight." That short sentence does harken to the fact that is was never a given that she would ever be eight. Against all odds we are so blessed!

Last year Ellie, around this time, actually late August until late December was in and out of the hospital constantly with we didn't know what except that it was neuro and involved her being in lots of pain and me being very scared, tired, etc. Turned out it was abdominal migraines and I think side effects of coming of Depakote.

This year, knock on wood, things are going much, MUCH better. Thank you to all the powers that be and mostly to Ellie herself for being a consummate warier princess!

Last year, because of all that, I didn't do the montage. This year I will but not yet. First I have to make a chocolate cheesecake for her pirate party tomorrow (She eats pureed food so I thought she might be able to handle cheese cake). There's an idea, make her a cake she can actually eat... only took me 8 years....ah well. ;-)

We are having her party back at home this year. Last year was great at the ballet studio but since then that class was cancelled and the locaton was so far flung most people could not come. This year we are staying home, which is probably one of Ellie's favorite places to be anyway. Dave created a family pirate treasure hunt, complete with clues and lots of Ahoy theres! and ARRRRGGGGGHHHHS! etc. I get to make food for kids and adults which is perfect. My parent friends deserve good nosh as much as their adorable babies who are not babies anymore but 8 or close too! Yikes!!!

Pictures soon to come of many things as we have made progress on the body jacket positioning front and new style AFO's and of course Splity.

Picture description: Ellie wearing her cousin Halle's sparkly hat sitting with Mama in a southern "Mic O'Donnell's" so coined by her cousin Henry waiting out a squall while on vacation this last August.

Pain in the Back

Ellie came home from school early today in a lot of pain in her back. I am not sure how this happened and of course have been wracking my brain scouring every positional memory I have of her over the last week. It's her lower back and she can't lie flat on her back without a lot of pain. It hurts her to sit too. She constantly keeps moving to try to shift her weight and find a comfortable place. It's hard and she is in pain - which is not good.

7 years old with a hurt back. That's just wrong.

Connecting in a web

This November Ellie will be 8. 8! Though, my brain just reminded me as I wrote this, "Well not really 8, not until February when she was supposed to be born!" Do any of my readers, who are parents of preemies, ever do that kind of self correction? Does it ever go away? ;-)

Just the same she will be 8. She is huge (for Ellie) at 37 pounds and so tall that when I pick her up her legs hang well down past my knees.

It will also be roughly 7 plus years since we moved here. About 6 years since I quit my big corporate company that so kindly moved us out here so that Ellie's shunts could be made right by Dr. Gumnerova at Children's Hospital Boston. Ellie is starting her 5th year at "new school" (not so new any more). And we have lived in our own home for 6 years.

I find myself amazed at all this depth in my life, all these roots. The fact that I have lived in the same house for so long in the same area. Staying here, in children's medicine mecca, is necessitated by Ellie's needs so it's fine. Ellie's needs, as many a mother comes to find, are exactly what I need though not always what I could ever imagine.

The best statistic is that it has been a few years (knock on woods so the tree gods can protect us!) that Ellie has been truly well. I know we had a bad stint for many months this time last year. But that bad stint did not end up in operations, brain damage, or other really scary things like what we have faced before. And though it was bad, because she came out of that healthier (despite the migraines) I still count it as a good year. After all she did get off her seizure meds. She did start eating full force. She did go to first grade. She also, bless her beautiful soul and ever healing brain, start to sleep with some regularity. So many blessings.

I have been struck by the richness of my life and all the beautiful growth coming up from these roots we have inadvertently laid down. We truly didn't mean to. We said, we'll just stay to Ellie's health gets manageable. Then she found "new school" and now we are quite stuck. But by being stuck in a situation where we had to reach out into our environment to survive, we have built something despite ourselves. All these connections are like a beautiful glittering spider's web hung with morning dew in the sunshine.

When we moved here we had no friends. We had people we worked with but didn't know well. We felt very alone. It was a harsh and lonely shift from our very full lives in Los Angeles complete with great friends and colleagues, who are, let's face it, also friends. That's LA for you though. Very different from here. Very different from here was a tome I chanted for the first 5 years here.

Yesterday I walked through my yard, late at night, coming home from work and I noticed how I wasn't afraid. At all. You would never feel that way in LA. I would always felt wary and never lingered between car and door. But last night, I smelled my roses and looked at the moonlight on their white petals and I was startled to realize that I was actually starting to like it here...a bit.

I experienced this same phenomena in Los Angeles - hating it for the first few years and then gradually loving it. See the pattern? Now I realize that there is a survival mechanism in there - adapt or suffer I believe is the technical phrase for it. Even so, seeing it kick in I realized that it's not where you live, but all the people you feel connected to that make a place great to be. The fact that our web of connections has expanded beyond the hospital is only possible because Ellie's brain continues to heal. We are really lucky that Ellie's path has mostly been on an upward trajectory. The fact that our connections have so much depth might, in fact be because Ellie was injured at birth. That has changed everything but not in the way you would typically think.

Cold Turkey Java

It's been a long time since I wrote a post under the label "Batshit Insane". I think that is because when I work this much I am not as funny as I am when I am working less...very sad indeed.

BUT, for the record I have given up coffee - successfully. I haven't had any for over 2 weeks and don't miss it. I still have one cup of earl gray tea in the morning and the occasional soy chai latte but they effect me so much less than the coffee did.

Me and coffee are pretty much done. And I don't miss the nervousness, the extra sweating, the rapid heartbeats, the skin breakouts, and the sleepiness it was causing me! So what was once so hard to do as you can see here, is now done.

Gotta look for something positive after this long afternoon!

Picture description: The de-coffeed me - being cheeky sticking my tongue out at Dave and now all of you...

Livid

Livid = a perfectly round, white, raised area of skin on Ellie's ankle = pressure sore.

Livid = me after hearing that, once again, Dr. Webster did not put enough padding over the bones on Ellie's ankle.

Now, my baby, is the proud owner of a matching set of pressure sores. One for each ankle.

I feel sick as I write this. GRRRRRRRRRR

Lessons, what are the lessons? What can you learn from my lameness? Oh, here's a few that also fall under the welcome to my world category:

#1. NEVER allow one parent to go alone to a casting procedure no matter how many other doctors appointments you are balancing with work. I went alone the first time and Dave took Ellie alone to the second. There is just no way to advocate for your kid when they are freaking out about being casted such that you are entertaining them so they stay still and so that they are less freaked out, while in the meantime the doctors are telling jokes to one another as they forget to pad my daughter's freaking ankle!!

#2. NEVER forget lesson #1.

#3. Just because a doctor is good in the past doesn't mean they will stay that way. I am so dissappointed.

#4. It takes roughly 6 months for a pressure sore to heal - we learned that from the first one - and I think I am being generous there as it is still not totally healed.

#5. Something about never losing one's vigilance and other things I am saying in my head right now as my conscience gives me a substantial beating.

#6. Maybe if a doctor screws up once you should fire them and find someone who knows how to properly pad a cast! Maybe something about forgetting about doctors altogether.... not sure if that is realistic - but I am really mad right now.

After Action Effects:

- Further muscle atrophy - we are 6 months and counting in now - looking at a year total

- Loss of faith in doctor

- Massive mama guilt

- Continued dusting of unused gait trainers

- Ellie losing her excitement over using said gait trainer to make her way around the house on her own speed.

- Potential decrease in bone density for lack of weight baring

Above is a picture of the the pressure sore she got the one time we tried serial casting. It doesn't look much different today.

I am going to take her to as many hyperbaric O2 treatments I can afford (at $200 a pop that means not all that many) to see if that will help. Also posted is a picture of Ellie in her gait trainer, months and months ago. I need everyone to remember that she used to be able to do that. I need to remember that we used help her practice walking in her gait trainer 4-5 times per week. I need to remember we even brought it with us to my mom's one time to show them how well she was doing with her walking. That during that same visit she laughed and walked in her "Pony" for hugs. Just this Sunday Dave, Ellie and I were at the mall early in the morning and Dave and I were commenting on how quiet it was and how smooth the floor is and how we would have to take Ellie there to practice walking as soon as her cast was off. So much for that plan.

Poor Ellie.

I feel like the worst parent in the world.

I am so overwhelmed right now.