Ryn-newal

In January of this year I set out to transform my life.  I had been feeling tired every morning, Ellie wasn't sleeping at all...again, and I was just sick and tired of being tired and in pain all the time from a variety of things namely osteoarthritis to start.  And I am not even that old to have such a thing which incidentally has my doctors also scratching their heads.   I was also still so wound up from the previous months of finishing my dissertation and hosting a huge family party and dealing with a promotion which brought with it a lot of extra work.  No rest for the weary and I was weary.

Last summer I started exercising and that helped. I road my bike all summer which was a lovely thing. Though I was limited on how much I could ride by time but also Boston traffic which is a killer. The good people have deemed themselves "massholes" and they live up to this reputation and sadly as a result many cyclists are killed each year. So during peak traffic hours I don't ride. Then the bad weather hit...

However, from my bike racing days I had a perfectly good wind trainer collecting dust in my attic. I pulled it out and have been riding away, nearly every day regardless of weather or traffic. Now that it's warm I can do both inside or outside rides but ride every day.

This was a good start. Then I decided to give up meat, dairy, fish, sugar, caffeine, white flour, and gluten...yep it's a big list.   I was inspired by kriscarr.com and her books. Her book Crazy Sexy Diet contains a great deal of information I had heard over the years in various places but not so well explained. It's worth the read. 

As a result I pulled out a champion juicer that Dave had found at a low, low price on Ebay in 2003 that was collecting dust and began to use it every day to make versions of Kris' Make Juice Not War juice. I started drinking 16 to 32 ounces per day as well as blending up green drinks that were originally inspired by whole foods fresh smoothies which now are not nearly as tasty as what I blend myself. Instead of high glycemic fruits I blend up spinach and green apple and cucumber, cilantro and hemp seeds with water and fresh lemon. Yum.  

By doing all of this I lost 18 pounds and no longer wake up in the middle of the night from aching joints.  (Gluten has been linked to arthritis.)  The diet Kris proposes is a low inflammation diet - which is also really important for Ellie. I realized that some of her food is really high in inflammatory food so I changed that. For example I make her a dish called Green Goodness that was avocado, apple sauce, and strawberry coconut yogurt. Very high in sugar.  So I changed it to avocado, cucumber, mint and fresh pear and sometimes some plain coconut yogurt. And she eats it and loves it. I also add in hemp seeds. 

Instead of roasting her sweet potatoes for her puree I cook them at a low temperature so that they don't caramelize (which increases the sugar content). I also started her on 16 ounces of the green juice and got her off dairy.  As a result her nose is not constantly running and she has been sleeping through the night - nearly every night since she started getting the green juice. For those of you who have been following this blog for awhile - you know that is saying something!

I also have had allergies for years starting about 10 years ago that have kept me up hacking away and wiping my nose while I am trying to present.  Not fun. Cutting out dairy has changed all that. And I love cheese so it had to take something big and not having any allergic reaction to the tree pollen etc. is a huge change in my world for the better. 

I have also been meditating and practicing being more mindful.  All of this has turned out to be a way to transform my inner life and in so doing my outer life. I am 18 pounds lighter, way more rested because Ellie is sleeping and I am making a point to make sleep a priority, and so much happier.  I feel like I am finally decompressing from 10 years of really hard times in some ways (good times too).  But let's be honest, when you have a baby early and almost both die in the process then proceed through 134 days in the NICU and through multiple surgeries, illnesses, seizures, dealing with back issues of your own, having the expense of transforming your home to be accessible, and on and on and on - there's a lot to decompress from. And stuff is still going on that is really challenging to do with Cerebral Palsy as Ellie grows, e.g., her muscles and bones not keeping up with her growth, scoliosis, hip displasia, and on and on. 

So how do you get renewal out of that?  From the inside out in my case. I thought - I can't control her not sleeping or the stress of the world but I can control what goes into my mouth and what I think. The first part of that is way easier by the way.  Choices for eating are much more explicit and easy to manage than choices for what I think. But I am working on transforming both to be more positive, hopeful, proactive, abundant and most of all nourishing (for body and soul). And it's working. 

Often you a lot of the preemie blogs end by the time the kid is 8 or so.  I understand that.  But I want to keep going. Ellie's blog has been a way to keep time with myself, reach out to others in hopefully a helpful way, make connections that have taught me loads. There's a lot to report on, on this end.  

I wanted to share some things that have helped.

Pictures:
1. One green juice and one carrot, ginger, beet root juice
2. Ellie on Easter morning finding gifts from the Easter Bunny. Fijit ears to replace the ones that someone pulled out....very exciting indeed!

Peachy Applesauce or Yes, I Would Peel a Boiling Hot Peach for You, My Love

Giving Ellie whole foods is a passion and an emotional precedent of mine.  It's one of the things I can do to help her body heal and be healthy. She has had a long journey to eating filled with starts and stops.  She has been on whole foods since she was 18 months - which took some doing as I have written about in earlier posts.  She has not progressed beyond purees.  However, in typical special needs, preemie parent style, I say, "I'll take it!"  After all, eating purees by mouth is better than no eating by mouth at all.  Additionally, a great many of her food sensitivities have abated and she is able to handle more fat and variety.

As such, I happily face the challenge of making her more, and more interesting purees. I know some of you out there may be thinking - why don't I just puree whatever it is we are eating. I have seen parents do that - the most interesting case where they were feeding their kid pureed bear claws (a calorie rich pastry), which resulted in huge blood sugar spikes and other unpleasant sequelae....not good.  Also, some things when you puree them are gross. I recently did it with a meatball and that was fine. Ellie has had Italian wedding soup pureed and that was fine too - but she eats things like that rarely and in small doses because of her reflux that is still a force in all our lives.  Simple foods that have great flavor and don't upset her stomach are the order of the day.  Like most working moms convenience is a necessity and the whole process took me about an hour.  However, I think the time I spent making her applesauce was well worth it.

We have been buying jars, and jars, and jars of applesauce for Ellie for years now. It was one of the only off the shelf foods she could eat - that and baby cereal and eventually coconut yogurt - so you see it's been a very short list.  However, two years ago I got a food mill because of the power outages from the hurricanes.  It's apple picking season in New England and a coworker talked about how she made applesauce. It sounded easy.  Though as a kid I used to churn applesauce out by the gallon using a food mill - I had forgotten all the other steps. Store bought applesauce is OK but its got a taste I just can't attribute to the ingredients listed on the jar - even the organic stuff. Store bought applesauce can also run you $5 for a small glass jar.

In short it was time to remember/relearn how to make homemade applesauce. The good news is, it's really easy. 

The equipment you need is a food mill, a big soup pot, a big bowl, and a slotted spoon.

Here is the recipe for Peachy Applesauce:

Ingredients:

Peaches

Apples

(I used 2/3 apples and 1/3 peaches)
Water

Step 1: Wash the apples then cut out their stems and quarter them. Put them in a big pot with water 3/4s of the way to the top.  Bring to a boil and then simmer until apples are soft - about 20 minutes.

Step 2: While the apples are simmering - put the whole washed peaches into a separate pot of boiling water. After 15 - 20 minutes extract the peaches and put them in a bowl.

Step 3: Gingerly with your fingers peel off the peach skins.

Step 4: Put peeled and pitted peaches and all the apple pieces in batches through the food mill that is positioned over a big bowl.

Step 5: Churn away.

Step 6: Eat lovely warm, potassium rich peachy applesauce. 

The peaches I used got so sweet and syrupy all on their own I didn't need to add any sugar. When I made applesauce with strawberries (cut off the stems of the berries before you throw them in with the simmering apples) I added some sugar to cut the tartness.

Ellie is enjoying the homemade stuff! 

I filled up one of the empty jars that I had been paying $5+ dollars for and there was still a vat of applesauce left over. I could calculate ounces and figure out precisely how much I saved buying apples at the farm and then making my own sauce - but suffice to say - I am saving a good bit of money and that taste I can't place with the store bought stuff is not present. Best of all, I have improved the flavor of Ellie's food. The flavor of food is what keeps her interested in eating it - which is a good thing.

Picture from top to bottom:
1. Boiled peaches cooling a little before peeling
2. The food mill filled with peach pieces
3. The big bowl of peachy applesauce
4. A smaller portion that Ellie consumed happily.

Ellie's first poem

Dave just reminded me about this.  He was reading Tug and Teeny - a really cute book with Ellie and in the book Teeny writes a poem and even gets critique from her forest friends.  After reading it Ellie wanted to write a poem.  This is what she wrote.  I call it:

Ode to My Fijits

"Sage dances,

Sarafina tells jokes,

Lola is purple,

Logan sings,

Fijits are Fun!

Ahoy thar!"

Needless to say we were very proud. And Ellie was very proud to tell me her poem and we read it several times over the course of a couple of days.  Today she agreed we should send it into school to show her teachers.  When she wrote it on Saturday she wasn't ready to share it with anyone else. But since then she has decided it's ok to release it to the world - it's ready - which is why I get to share it with you.

Ellie loves the Fijits (and still loves the lingo of pirates) toys themselves and all the youtube videos of them. If you buy them, get them from Toys-R-Us because they are really more expensive on Amazon.  AND Toys-R-Us offers a life time insurance policy if they break you just bring it in and they will replace it.  The policy costs a one time fee of $8 which I know sounds like a lot but it covers all Fijits you buy.  Since they cost $50 and they do break - this is a good deal. We are on our third version of Lola (who is actually their Willa - but Ellie renamed her) and third Logan and second of the other two.  Also, get some rechargeable batteries. The AA batteries burn out after about 48 hours and it takes 5 of them.  Since getting the rechargeables we have reduced our footprint and saved considerably. Let's Fijit, Fijit!

This is a link to one of Ellie's favorite Fijit videos here!

Blog-sanity and the Stories We Share.

Picture: Ellie at age 9 playing with"Logan" who is a Fijit.

I'm going to try to blog more because this blog offers perspective - for me when I write  - and from you when you comment. I learn stuff.  Ryn Tales has also served as a centering force on this uncharted path.  I  have been feeling self conscious though about how much to share about Ellie. She is growing older and it's her story just as much as my own.  From your comments, sharing parts of that story has seemed to help - serve a purpose - help others.  And I am still learning about disability and how to navigate its ever changing face every day.  The extroverted part of me wants to share every bit of that learning here to have help in making meaning of it.  But like I said, it's Ellie's story, so some things I can't share.

Time is also an issue. I remember reading Biz Stone's Who Let the Blogs Out.  It's a great book for anyone out there thinking about blogging and what to do. He really lays it all out for you.  One of the things he says though, is that unemployment is the best thing for a blogger.  Simply put - you have time to write and more importantly  - time to reflect on life. Time to take the wisps of inspiration and commit them to the small screen.  He was right.

Since I finished my dissertation, nothing slowed down. Instead I just got more busy with work and family and catching up with the long list of things I needed/still need to do for Ellie.  Also upon finishing instead of feeling relieved I just feel restless and wound up - like all the things I put off for 18 months should not get done right away.  Instead of feeling accomplished, I am more keenly aware of all the things I want to do that I now can with the letters. In that sense it's been a decade of waiting.  Hence the restlessness.

What's in order however, is renewal and perspective and being centered. Sadly, none of that is coming naturally and is proving something I need to create myself with discipline and practice and acts. Blogging is one act. This blog is also something wholly mine versus being a thing I produce with my mind and creativity for other people and as such, not to be neglected.  If anything I hope it continues to serve some small corner of humanity.

Last, I heard about this book on NPR today. I just ordered it so will let you know what I think.  However, I hope more is written on this topic - disability. It's always on my mind.  The love I feel for Ellie and the joy she brings me every day is something I always appreciate and am grateful for. AND a book like this that tells how various societies viewed disability differently may offer some proof that disability has been appreciated.  Go see the Neanderthal skeleton in the Smithsonian where the note reads that the person lived and died of old age despite an obvious massive skull fracture injury.  So if the Neanderthals valued their disabled enough to expend limited resources to keep them alive and treat them as a valuable member of the tribe, why not us? Or more specifically, why not all of us?

A History of Disability (Corporealities: Discourses of Disability)

Henri-Jacques Stiker (Author), William Sayers (Translator)

Designing Your Life With Intent

I found this so spot on and inspiring. 

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 went 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 and my committee spent almost one hour talking to me about how I could publish and venues to present the results. Great coaching session. Having the degree opens up a lot of opportunities - which is a really good thing considering how I will have to work until I die because I want to make sure Ellie is taken care of.

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.