Dream Child

I definitely have a creationist view of the world, meaning that it is as you create it. And yes this also sits in contradiction with my also deeply held belief that we sign up for some things just to get the experience as soul. As within myself, such is the world, filled with startling contradictions coexisting comfortably side by side throughout eternity.

All of this ruminating has been sparked by a recent visit to our new neurologist. I hadn't intended on finding a new neurologist for Ellie, because we have one, had one, kind of. I was not so happy with him. But as life would have it - way, way back here when we lost our first Boston neurologist, Dr. Janet Soul, whom we loved, I had made an appointment with Dr. Michael Rivkin. Because it took a year to get the appointment, I double downed and also met with the other neurologist Dr. Soul had recommended but whom turned out to be so nonplussed by us and so flip... ugh don't get me started, you can read about the dog and pony show dada had to put on to get him to even listen here, though that meeting resulted in no conclusions or actions. After all this time, however, I completely forgot about the other appointment.

Last week we got a reminder call to meet with Dr. Rivkin. Our long ago made appointment was for this Tuesday at 11am. I almost didn't go because this week has been a rough and tumble stressor of a week. Here's why - I'll just list the crap we all had to contend with:

• Ellie's IEP was Wednesday
• Ellie's 3 Year Re-eval was also Wednesday
• Ellie had to get Botox in her lower legs Thursday morning and of course that takes all day (more on that in another post)
• Ellie and I had to meet with our case worker from Mass Health for reevaluation for the nursing hours we get (nursing hours which save us from complete insanity as well as being quite handy when Ellie is sick or having surgery's or procedures).
• Our water heater sprang a leak...

Now on the other side of it, nursing hours intact, the best IEP ever, and Ellie knocking the ball off the charts in her evaluation testing (yes am pretty proud of her) I have time to take a breath and ponder it all (except the water heater - I can't ponder that at all - I will implode if I do - I have handed that off to Dave, hubby of the year).

You can see why I almost cancelled the meeting. But I took Ellie anyway, pulled her out of classes and got us down to Boston Children's. When I met Dr. Rivkin it was definitely one of those watershed moments when I breathed a great sigh of relief that I hadn't blown off the appointment. Like one walking on the edge of a cliff and catching themselves from falling over the edge at the last moment. I can only describe the events so you know why this was a very different meeting for us than our last two visits to the other neurologist.

Ellie and I are in the waiting room having only been 4 minutes late which is saying something and I hear her name called. (This was after they weighed her and checked her height. By the way she has grown 4 inches over the last year and gained 10 pounds! Go Ellie!).

I call back, "Yep, we're here, just a sec!" because I have to extract Ellie from my lap, which is no easy thing to get her and all her toys back into her stroller. As I am putting her in I hear someone nearby say, "Hi, I'm Dr. Rivkin!" I get Ellie in and take his outstretched hand. He's smiling a big smile like we have made his day by coming to our appointment. I shake his hand and he has a good strong, but not too strong as to bruise your hand, shake. The kind of handshake that always means sincerity to me. He is wearing a funky bow tie which is also a good sign of a nonconformist free thinker type. Better still he bends right down to get at Ellie's eye level, and says, "Hello there! Nice to meet you!" And the big smile again. Then he offers to carry Ellie's nap sac which I let him do.

We go in his office and he very thoroughly, taking notes, gets our history, asks a ton of questions that range from birth to my history to Ellie's current abilities and medical status. He listens to me when I tell him she can read , understand sign language, and understand all of what we say if she can hear us. He listens and believes me. There is no eye rolling just direct gaze and appropriate questions. He has opinions too because he has read her records (before we turned up).

He was really clear that he did not think we should take Ellie off her seizure meds. He had read her past EEG reports and told us that her EEG is really abnormal, not just abnormal for someone with type of brain injury she has, but really abnormal. So we stay on the meds a bit longer as much as I hate that. Her last seizure lasted an hour and seemed like it would never stop and is something we can't let happen again as you can see here.

He asked me why I was there, since he didn't think Ellie needed two neurologists. I told him that she needed one good one and we were still keeping our options open since leaving Dr. Soul. He said, "Fair enough."

The great thing was that I didn't need to bring someone with me who has a, you know, the appendage that makes a man a man. He listened to me without any pretense or bias. When I told him that within two weeks of starting the seizure meds Ellie quit eating full stop, he said, "Well, that is very concerning." YES! IT IS! Finally someone with a MD in their title who is taking me seriously!!!

He was also proactive. He noted that Ellie hadn't had an EEG in 2 years and that he wanted her to have one straight away so we can revisit the med question and see if we can't get her eating again. He inquired if she had a trunk orthosis and hippo therapy. He gave me an inside line to call once the EEG results are in so we can discuss meds. He wants to see her again in 6 months (not a year like the other guy). He even introduced us to his team so we would know who to call for what. 3/4 way through the appointment I had told him we definitely wanted to switch to him. I didn't tell him all the reasons why but they are below. I wanted him as Ellie's neurologist because he is:

Proactive,
Thorough,
Open minded,
Detail oriented,
Big picture sensitive,
Good listener,
Straight talker,
Positive attitude,
Interested,
Engaged,
Relationship builder,
Down to earth, (versus the, I think I am a god realm and know everything, attitude many doctors seem to carefully cultivate)
Knows his stuff medically speaking

These are the things that differentiate between a good doctor and a great one.
He was gracious and said the other guy was really smart. And I said, "You are all really smart but we need someone who is more than smart." I think he was kind of chuffed by that but trying not to show it. But he agreed to be Ellie's neurologist.

Toward the end of our visit, I asked him, "Considering all that Ellie can do, the reading, her language acquisition, etc. have you seen other kids with similar issues like her?" I was really hoping he would say, yes, many of the kids with traumatic brain injury and PVL go on to do quite well, or something like that. But instead he said, "No, she is definitely and outlier."

An outlier is a statistical term for a data point that is at either end of a bell curve or when looking at a scatter plot a distant dot far from the other data points. Ellie is such an outlier.

I am glad that she is doing so well considering that. I also felt sad because that means she is rare, which means there is not allot of data on what to expect. There are not a great many books to take pointers from on what to do to help her (though the Doman stuff and Linda Scotson have been true role models). There is no beaten path to go down to help her heal.

Then again, with my creationist view of the world, I wonder if Dave and I didn't dream her up. And I mean that in this sense, from the second she was conceived we loved her and were thrilled by her presence in our life. This great excitement and love was not dampened at all by what happened, no just the opposite. It was strengthened and grew fierce. It informed all we do and did from day one. It fueled and solidified our hope, our partnership to bring the world to Ellie, to see her beyond her ravaged brain, to find her in the catacombs of all that was destroyed and pull her to us. I really feel sometimes that we did pull her out of it all. We have been constant in our attempts to work with her and keep her brain active. We are still pulling her out into the world though we have allot more help in that she goes to a school that meets our standards for miracle making.

In all of this I think Ellie is our dream child. I think there is an argument to ere on the side of hope and intelligence and love. We never held back from her or this challenge, instead we dove in head first without looking back or fearing the depths. I have but to think that in that sort of environment Ellie could do no other than build her neurological pathways that were not there yet (because she was born before the 28 week gestational marker)and others that were destroyed by the anoxic event and forge new ways of neurological function so that she could come out and play with us. She is OUR outlier, our dream child and we will just go on bushwhacking through the wilderness that is our life.

38th Disability Blog Carnival - Spirituality and Disability

In my understanding of the world we are all ghosts in the machine here to learn and grow in our capacity to love and have compassion for ourselves and others. Choosing to pay attention to the lessons so you get the most out of them requires examining one's world and sometimes asking why it is the way it is.

For my part I have skirted disability in my early years spending some time in a wheelchair and constantly tripping over my feet and falling because I was born with severely clubbed feet. I have endured some very painful operations to fix them. Then, years later, I have a baby 3 months too soon and that baby becomes disabled because of her traumatic birth. I can't but help thinking my early experiences as a child of not being able to get my feet to stay under me, being made fun of because of it, enduring long hospital stays and painful medical interventions have prepared me to better understand and raise Ellie. I am not saying in any way shape or form that I know what it is like to have hydrocephalus, CP, PVL or a seizure. But I do know what it is like to have IV's, pain meds, physical restrictions, tight tendons, time in hospital, endure huge amounts of physical pain, and having to rely on others to help you get to and fro. I think knowing these things has helped me demand better care for her as well as respecting what she has to go through from a much clearer perspective.

More importantly in my role today as a parent, I also understand what it is to feel like a burden to one's parents because of these things. My mother was always so exasperated by my inconvenient extra ordinary needs right from day one. That is something I don't want to pass on to Ellie -ever. I think the idea of being made to feel a burden upon one's parents or society is a form of hate. It's a way to say you don't matter why don't you just disappear. I know that this idea of burden is placed on people with disabilities all the time. It's also assumed that because my daughter is disabled, that she is a burden. I am here to tell you that is damaging and not true and a sign of ignorance.

In truth, having a kid with special needs is different in some ways but not in terms of time, commitment, engagement, and the basic all encompassing nature of being a good parent versus a crap parent who takes their kid for granted and does the bare minimum to get through the day building no relationship with them at all.

I do think that having a disability can allow you to develop certain traits that you might not develop if you never encounter any difficulty in life. I do think dealing with disability has informed the way I parent (would parent anyone not just Ellie). It might be that we have been more loving and gentle and appreciative of her because we almost lost her, because there is so much she can't do on her own. I am sure that plays a role in how we parent her. Either way, I feel so lucky to have such a great kid, just the way she is. Ellie is a universe that I am happy to orbit. Ellie is a blessing to me not because she is disabled but because she is my child.

I can never separate the experience of being a mother with that of being a mother of a child with disability. I don't know what it is like to parent anyone else but Ellie. But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism. Because I was ignorant about it all before and I am still learning. In this carnival I learned that the term "confined to a wheelchair" is pejorative. Many of you out there are saying, Duh!. But I am being honest here - now that it's in front of me, I get it, but it wasn't something I realized until someone put it in my face. Hence the beauty of the Disability Blog Carnival.

So is my life some huge set up, a plan of God's? I can't help but see it that way. My freedom of choice is in how to behave and feel and deal within this set up. For me, seeing it this way is important to taking total responsibility for my own attitude and demeanor and not playing the victim, all of which ultimately effects the happiness of a little girl who is the embodiment of love and light and wonder.

That's my take on it.

Many philosophers have thought along with Descartes that "the unexamined life is not worth living". And Shakespeare said, "Know thyself!" To that end the topic for this carnival is about the spiritual meaning of experiencing disability either first or secondhand in this life. I think you will find some very thoughtful and in many cases poetic examinations of lives being lived by the carnival's contributors.

Welcome to the 38th Disability Blog Carnival!

**Just in this post that I had to include called Spiritual Infringments over at Planet of the Blind by Stephen Kuusisto. Here is a quote: " “Listen,” I said, “I really don’t require prayers.” I stopped for a moment. I needed to hold myself back. I didn’t want to plunge headlong into a theological debate. I didn’t want to say that my permission might not be required for authentic prayer."

***Just in, Laura Gilmore gives us this great post Does Everything Happen For a Reason over at Touched By an Alien: Life As I Know It. Thanks Laura!

Tokah has written some powerful posts in the past and this one is right up there. For those of you who think disability might be the result of sin, check out what Tokah has to say about it. For the carnival Tokah gives us this post: Impairment and Spirituality over at From Where I'm Sitting. Here is a quote.
"My belief in God is the lens I see the world through, it is the deepest and most immovable part of me. One of the few things that is understood about my disabilities from a medical perspective is that there is a lot of congenital involvement. Thus, to be consistent in my beliefs, I cannot come to any conclusion other than this:

God created me knowing I would be a crip."

Elizabeth McClung gives us this excellent, well written post and and well though argument, Thoughts about "praying for me" and "hoping for a miracle" posted at Screw Bronze!. Here is a quote: "When I first became ill I talked and wrote about it with my Christian friends. And I watched as the two Christian forums I participated on quickly responded in a singular way, “I’ll pray for you” while at the SAME TIME, talking, emailing and communicating with me less."

Yanube gives us this post is a response to one of the commenters on Elizabeth's post: Religion, hardship, and belief posted at yet another never updated blog. Here is a quote: In Screw Bronze!, Elizabeth eloquently discusses the way that her old church friends have deserted her, offering weak promises of prayer instead of camaraderie. In the comments, Gaina inquires how Elizabeth can remain "a christian after everything you're experiencing"? As an atheist, I wish to respond to that: Why shouldn't she?

Disability and Language posted at Bad Cripple. William critiques a NYT's article about a mother of a disabled child having a "second chance". William I hope you send in your remarks to the NYT's oped pages because they need to read by a wide range of people. Thank you for this one! Here is a quote: The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults.

Athena, Ivan, and The Integral presents 38th DBC Entry: Our thoughts on Disability and Spirituality « AthenIvanIdx’s Weblog posted at AthenIvanIdx's Weblog. Excellent post. Here is a quote, "So spirituality and religion has a very, very important function in our lives. We although think that our disability -(now correctly diagnosed, might we add. well, as correctly as possible. autism and asperger’s, what’s the bloody difference?)- has a major role in how we interact with our Lord."

Check out this excellent post titled, "chaoticidealism: CP, quality of life, and autism" posted at Report from a Resident Alien. Here is my favorite quote, quite possibly for the year, "Duh: I don't know what it's like to be another autistic person. But that's true whether or not we're functioning at the same level. Nobody ever knows what it's like to be anybody else; we can only imagine. Problem is, some people assume they know."

Meg writes this excellent analysis in: That's Reality, Greg over at Hey Meg. Here is a quote: "I know most people are doing the best they can; I’m sure our story is unusual for those have never encountered disability. I wonder how others feel about the ways in which I respond to them, when they are discussing topics that are new to me. I hope I am gentle, open, accepting, inquisitive, with an attitude that whatever the scenario, it is a part of human life in all its bittersweet magnificence. I guess I will have to work on it."

Myron Uhlberg shared tales of his Deaf Heroes (his Parents) at the International Reading Association Convention posted at Deaf Characters in Adolescent Literature, saying, "Honor thy mother and thy father--check!"

Diana Lee presents Exploring Mindfulness-Based Stress Reduction posted at Somebody Heal Me by Diana Lee.

Catherine presents Pencil In. posted at Charming BB, saying, "Please include." This post effectively captures a very poignant moment.

In Mother's Day Shopping posted at Frida Writes, saying, "The Christian card shop is more scooter-friendly than the Hallmark--so that's where Fridawrites spends her money for Mother's Day"

Teri holds a book give-away in her post: Faith and Disability Book Giveaway at Barriers, Bridges and Books. Teri, thank you so much for this entry!

Sarah writes this informative post about adaptive skiing over at Impossible Universe.

Off topic but tis the season: excuse me, your ablism is in our feminism posted at Sly Civilian

Emily Elizabeth writes about this interesting and hopeful development in congress: Let's Get This Caucus On... posted at Lovely and Amazing

Sarah writes Paralympians in the News: Josh George, Natalie du Toit, and Oscar Pistorius posted at An Impossibility in an Impossible Universe. Many blogs are covering the Pistorius news, but this post is excellent in that Sarah has put him in context with other athletes.

Sarah also gives us this post on a case that is placing disability, particularly Autism in the quite imperfect media spotlight: Church Files Restraining Order Against 13-Year-Old Boy With Autism posted at An Impossibility in an Impossible Universe,

On the same topic: The ultimate in legal rejection posted at disabled Christianity,

More commentary on the case: Mass confusion: A restraining order and a boy with autism posted at WHEELIE CATHOLIC.

And sometimes you just have to laugh! I don't know what is more spiritual than that!

Damon Rose from Ouch! pens this excellent, well written, well said, humorous post: BBC - Ouch! Disability Magazine - Weblog - Crap News: guy goes on holiday posted at BBC-Ouch! Disability Magazine

Pope Bonkface VIII gives us this humorous post: A primer to the reactions one gets when they mention 'medieval disability studies' posted at Medieval Cripples, Crazies and Imbeciles ... and a Service Dog?.

Thank you to everyone who contributed to the blog carnival!

The next Disability Blog Carnival will be over at Emma's blog called Writings Of A Wheelchair Princess the deadline for submissions is June 9th and the Carnival will be up on June 12th and the theme is "If I knew then..."

Great theme Emma! Can't wait to read it!!!!

Shameless Plug and Clarification of the NEXT Blog Carnival

Hi Everyone, I thought I would write to tell you all little bit of what I would hope to hear about for the next disability blog carnival that is here at Ryn Tales. The topic is Spirituality and Disability. Spirituality is a topic that touches disability in unique ways. I wanted to write about it and to hear what you had to say because there have been so many crazy takes on why all this happened to Ellie, to us, and what it all means I think hearing from the people who read this blog and those living what is seen as a disabled life could be really great on many levels. First to share and second to once again tirelessly clear up misconceptions about disability and it's place in religion and spirituality. For example the worst thing I have come across in the pseudo religious and spiritual realm about why this happened to Ellie is that she is paying for somebody's sins. Nice huh?! That was just excellent when that was said to me. Another is that she is the reincarnation of another disabled person in the family history and on and on. I heartily disagree with both points of view and will be writing about that a little but also about the HUGE gains I have made as a person from being in this unique situation. I will also share some of the amazing experiences I had that are definitely in the spiritual realm before Ellie was born as well as from those first touch and go days. Mostly I am wondering what your life lesson might be if you have a disability or are parenting someone who does. I agree that we are mostly all temporarily able bodied. I think it is the rare person who lives able bodied their entire life to gently die in their sleep. So this carnival might be of some use to us all. That said, unless your topic is way, way out in the stratosphere (like discussing the migration of earthworms) anything goes. So if you have already written a post, it will be very welcome!

Mama Bloggers: Exploitists or Family Historians and Community Builders?

Heather Armstrong wrote this great post that I discovered via Lisa, one of my all time favorite bloggers, defending her blogging about her kid. I am in agreement with Heather's point of view that her blogging about her daughter is a celebration of the love and beauty they share in their family. I obviously don't perceive the danger in showing Ellie's picture here to be any greater than taking her out in public in general. I was happy to read Heather's well articulated argument about this.

What do you think?

37th Blog Carnival: Celebration of Disability Culture!

Great carnival and many compliments to Crip Chick who organized this great carnival! Here is an excerpt from her introduction.

The words carnival and disability together brings many images to mind. Images of freakshows, disability being manipulated, and all kinds of hard times for disabled people are thought of. Here we are though, in 2008, reclaiming and recycling these words together to mean something new. This disability blog carnival, the 37th one of its kind, focuses on the celebration of disability culture, struggle, people, history and identity. Put your party hats on— we’re ready to get started!

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”—Dorethea Lange on disability


The next Carnival is here at Ryn Tales and the theme is Disability and Spirituality. Anything goes so submit, submit, submit. SEE you back here in May 22 for the 38th Disability Blog Carnival.

May 1st is Blogging Against Disablism Day 2008!

If you haven't been over to see the hub of Blogging Against Disablism Day at Diary of a Goldfish - get on over there. Goldfish has done a fantastic job writing about this as well as rounding up many excellent posts on the subject.

Below are the links to some of the many posts I have written about Disablism and it's damaging effects:

It's Just Cerebral Palsy
The Goal to Be Normal
From the Outside Looking In
Protesting the Brutal Murder of Brent Martin
My Two Sense
Even Bigger Picture

I have thought about my own isms quite a bit over the course of my life. There are many out there. Disablism is a central theme in my world today because it is something Ellie does and will face. So when you think about Disablism, think about Ellie. And if you have questions about it or ignorance, just remember anything you do to learn about it or fight it, you are doing to help Ellie and all future and current generations be more accepted in the world.

Experience is Worth a 1,000 Words

Yesterday Dave had to bring Ellie to her new neurologist. My last visit with him was fairly useless. I could tell he had written me off before he even met me because he was really dismissive and didn't answer my questions and only met with us for about 7 minutes. And he had no answers. I left feeling very frustrated.

So move forward one year to yesterday. I had to work so Dave had to take Ellie in, which I thought was really good considering my failure at the previous visit. We discussed what we wanted to talk to him about - mainly that we are worried that the useless shunt that Dr. Death installed is taking away Ellie's vision. Also we want to understand what her third and fourth ventricles are doing (since Dr. Death's big mistake where he allowed Ellie to leave the NICU and go home with active hydrocephalus with third and fourth ventricles blowing up like balloons pretty much taking out her cerebellum. Yep more brain damage on top of an anoxic brain injury at birth. That is a pain this mother will take to her grave). Anywhoo, we wanted to get an overview, discuss an MRI and also what Ellie's unusual ability to read and read a lot meant in terms of brain development. Ellie has like a 200-250 word READING vocabulary (she understands many more words that that at an age appropriate level for a 5 year old - maybe more but hard to tell). But in terms of words if you say them she could pick out of a line up and/or also spell out on a letter board - that is pretty good isn't it?

In the morning Dave and I were rushing around getting ready (you have no idea all the things we have to do each morning to get Ellie and ourselves out the door- it's post worthy). Dave gets Ellie in the car and comes running back in the house and grabs Globee (affectionately - Vtech's Sing and Learn Globe) and Ellie's Magnadoodle and dashes out.

That evening at dinner he told me how it went. He said the meeting got off to a slow start. After the weighing and measuring and reflex testing the doctor asked about Ellie's development. Dave mentioned that she could read and the doctor looked skeptical. So Dave handed him the magnadoodle and said write down anything you see on this Globe but don't say it - just ask Ellie where the thing you wrote down is.

The doctor wrote down "North America" Before he was even done writing, Ellie, who though she often looks like she is deep in to playing with her toys is always listening to it all, immediately spun the globe to North America and put her thumb on it and laughed. He did it again with a couple of other places and Ellie enjoyed showing off her skills.

The doctor was really impressed and said that Ellie being able to recognize so many words is unusual for a 5 year old.

He then seemed more engaged and interested in "the case" which is Ellie's life.

He took a deeper look at the last CT scan we have of Ellie from her last emergency seizure scare last year and showed it to Dave. Ellie's third and fourth ventricles are teeny tiny! Ok - they would only have gone down if there were brain growth to be pushing on them even with a shunt there has to be brain growth dynamically make what were once huge water fulled ventricles that small. Balm to mama's heart for sure! He also paid more attention and addressed the issues Dave brought up after that (some of the very same issues he sidestepped when I brought them up one year ago which of course made me think he is a big chauvinist to pay attention to them only when a man presents them - but that's the gender chip on my shoulder - I really think it was because of what he saw Ellie do with Globee).

I was so impressed by Dave's willingness to just go in there and share his joy with Ellie and in what Ellie is capable of. It's a contagious thing - Dave's enthusiasm for his daughter.

And, as far as visiting doctors, that is so how it's done. If we have to prove Ellie does the things we say she can - Fine! And thanks to her experiences at her new school she doesn't turn into a lump in public anymore and enjoys showing off a bit.

I don't know when doctor's decided that parents are constantly unreliable witnesses to their children's behavior -but I have been experiencing that more and more - the proverbial eye roll when you tell them what Ellie can do. Which really pisses me off because I am not one of those parents who want to see their kid through rose colored glasses. No way - in our case that would be dangerous, literally medically dangerous if I were to gloss everything up all the time. No. I am really fine seeing Ellie just the way she is and keeping my level of hope for her at a steady sane pace, hoping for the world for her but seeing her, really seeing her for who and where she is and taking joy in that. Because she is perfect just the way she is and wonderful in that perfection.

So, fine, next time I will just have to show them what she can do rather than tell them (and take Dave with me)!

Prejudice via diagnosis

Today we went to yet a couple more follow-up doctor's appointments (this is what you do on school breaks when your kid has multiple medical issues).

Anyway, one of the exams was an eye exam where the doctor was trying to see if Ellie could see some squares filled with increasingly thin and close stripes. I wasn't sure if he wanted me to prompt her or what I should do. I could tell that Ellie wasn't sure what he wanted because he was just flashing these things in front of her face trying to see where she was looking. She was looking at him. At one point she laughed because he looked like he was playing peekaboo behind the card as he shifted from side to side to look at her face (Ellie was checking out all the gadgets - because she is a gadget girl and loves all things electronic). He didn't even crack a smile. And when Ellie laughs and you don't it is truly indicative of a limited sense of humor. She has the best laugh.

So when he was switching cards I said, "I think she is unsure of what you want her to do (because you haven't asked her to do anything!). Do you think it would help if we asked her to point to the picture?"

His response was, "She could do that?!"

Me, "Yes, that is how she communicates with us by making choices and spelling everything to us all day."

Dr., "Oh great."

The good news is that after that, Ellie picked out quite a few of the pictures resulting in better vision than the last time. The assumption he was making after reading Ellie's diagnosis, before meeting her, and neglecting to ask me what her skills were, and because she was silent because she is still under the weather, was that she didn't have the cognitive abilities to pick out a picture image on a page or communicate in a way that would be meaningful. That may seem like a leap, but after he saw Ellie respond appropriately to her requests he used her name more, he looked at her more, and overall waited for her responses and ques during the exam. Good for him shifting gears. I wonder if the next time he reads about a kid with brain damage, PVL, CP, acquired Hydrocephalus, etc, etc. he will remember Ellie and not judge them by their medical history. Ellie could use the benefit of the doubt and so can anyone who is different than the norm.

As a parent I realize that I am still Ellie's best advocate (i.e. Warrior Mama!). I had to advocate a lot for her today. The good news is it's not so difficult anymore or as tiring. It's just par for the course.

Cough, cough! Ear Surgery and Manipulating Mama

Ellie is sick. It's her school break and the weather has finally turned from frosty to glorious but we can't take advantage of it. I can't believe how much snot she is producing and how often she coughs. Yesterday we had two doctors appointments (one initiated by me to get her listened to by someone who uses a stethoscope) and both times her temperature was taken and it was normal. Conclusion: she has a virus that she is fighting and has been fighting for over one week now. Today she had a 101.5 fever. She just wanted to sleep ALL day. It's worrisome.

The other doctor we saw was an Ear Nose and Throat (ENT) specialist. An Irish one named Doctor McGill. He was great and I am really glad we went though more than a little upset about the outcome. First of all we are going to have a sleep study done. He asked all these questions about Ellie's sleep like does she:

snore? yes
toss and turn? yes
wake frequently? god, yes
make this (he makes a quick in take of breath sucking kind of sound I couldn't duplicate to Dave) YES - ALL the TIME!
Oh, well that is what a sleep apnea sounds like.
great.

I have been worried about that for a long time. So it's good to be getting the study done. But if they think there will be more drugs prescribed or have Ellie hooked up to a CPAP every night for the rest of her life they are wrong! It won't come to that right? She doesn't sleep well now but she is certainly quite bright eyed and bushy tailed, rosey cheeked, mama I have had my eyes open for 10 seconds and will implode if I don't start playing NOW every morning... god help us.

So the second piece of bad new is that Ellie has a dead skin pocked on her ear drum in her left ear called a cholesteatoma that she will need surgery to fix. It may have been from the ear tubes but more likely because of her tiny Eustachian tubes that have not worked very well which I think is a complication of prematurity. Currently part of her eardrum is being sucked into the Eustachian tube creating a small pocket that dead skin is collecting in. Apparently this pocket is going to get bigger and bigger until it messes up those little musical bones in the ear that relay to the brain sounds from the outside world. Great. It won't happen tomorrow but needs to be addressed. The surgery will include taking a bit of cartilage from her ear to use to close up the hole once they remove the dead skin. Great. Sounds like fun. Not painful at all.

Sorry for the sarcasm but I am not in a good mood about any of this. Poor baba sick and seemingly getting sicker and with a surgery to look forward to. Sigh. And we have been doing so well lately threading the needle between the stomach bugs and multiple respiratory illnesses her classmates have unfortunately contracted. Through it all Ellie has been healthy, until now.

To her credit when she is awake between naps she is her sweet active self. She was delighted today to learn how to spell the characters on her Pooh toy: Kanga, Little Roo, Owl, Rabbit, and Piglet. It was weird though, I think she only spelled them because she thought I would like it - she seemed to already know them when I tested her. Also today I caught her switching the scene on the video she wanted and then asking me to put it back for her. She did this multiple times. At one point I asked her to wait a sec because I had to run and get the phone, when I came back she had switched the scene back deftly using her "weemote" by herself no problem, not a bother, sucking on her thumb looking at me innocently enough. Hmmmmm. I think she just wanted my participation....or something. Cute but scary as well, I felt a little manipulated. Not in a I feel bad kind of way, but more of a, I am in awe of you once again kind of way, like this is cool my kid has the cognitive chops to manipulate me! and then panic at, how am I supposed to parent you around that? Any thoughts or suggestions will be much appreciated. "Bob, I would like to use my first lifeline please!"

Bullying has been on my mind lately

I think the universe is telling me to do a post about bullying.

A week ago my sign language teacher signed the Peter, Paul and Mary song, "Don't Laugh At Me" in class. It's about bullying. Also, Peter, Paul and Mary have initiated this campaign across the country to directly address the behavior they sing about. Cool beans, eh?!

Then David writes this AWESOME post about how he taught a group he was speaking to what a bully is. David, that is way good karma! Just a wonderful thing he did not only for his audience but for readers of his blog. Major catharsis.

So here is my experience with a couple of bullies. As it turns out I have first hand experience being bullied. I grew up with a bully in the form of an older sibling. She hit and intimidated me every chance she got starting when she was close to puberty. There was also a bully in our elementary school her name was Terry M. She would intimidate kids on the playground, take their lunch and their place to sit. She shoved and mocked and spread rumors and in general created a negative experience for whomever she was targeting at the time. She had a couple of tougher bigger girls she was friends with making a little terrible threesome. She was scary.

I actually only learned what a bully was when I finally stood up to my sister. She was beating the crap out of me and my parents said, "Take it outside." I refused always to hit her back because I was a pacifist. Not that I knew the word for it. But all I knew is that I didn't want to be someone like her who hit and was mean. I wanted to be the opposite of her. So when she hit me I didn't hit her back. But this time was a little different. She had me pinned down on the grass and was punching me in the chest. It hurt. It was hard to breath. And all of the sudden I had this moment of clarity. A calmness settled over me and it said, "You're going to have to hit her." I sighed inwardly, because I really didn't want to. On the other hand she was hurting me and it was getting even harder to breath. So I balled up my fist and aimed right at her face and connected with her lip and nose somehow all in one punch. She looked really surprised as the blood welled up on her lip and nose. I thought, "OK here it comes, she's going to go whale on me now!"

To my GREAT surprise, she did not go bizerk. Instead she started to cry and yelled, "Mom, Kathy hit me!" In that moment I learned what a bully was.

My parents punished me for that. I was grounded for one week. But I didn't care. I had this huge realization as if a weight had been lifted and my sister never engaged me the same way again. There were still the punches in the arm if I was ever stupid enough to walk to close to her. But she was wary and we never got into a fist fight again and I was grateful.

There is no good outcome for the bully either. Bullying me and others was the way she expressed her pain and fear. And there were fewer friends and happy moments for her, I think, than I experienced. It's not a good way to be for others or for yourself, being a bully.

Terry M., our elementary school bully, fared no better. By the time high school rolled around and she was no longer the biggest kid and I think one of her posse moved away. People were no longer scared of her. Her elevates status and dwindled. In the bigger pond of high school she was a much smaller fish. She couldn't bully anymore. In fact she was quite unpopular. In my town, people didn't move around much so most of the kids you started kindergarten with you also graduated high school with. And people remembered her unkind deeds. I would often see her in the halls alone. She was not in the college prep classes. I heard she ended up working at her parents mini golf for awhile. I don't think the bullying did her any favors in the long run.

If the world is ever going to be a better, safer place, especially for people with disabilities, it is critical for parents to not only talk to their kids about bullying but also not to allow it in the home. I think often bullying behavior is learned from a bullying parent or it can be learned from older kids if the parent is absent. It speaks of anger and rage and causes so much damage, especially these days when kids aren't duking it out with fists but guns. It is a much tougher job to be a parent who intervenes and is close to their kids hearts and minds than one who ignores the subtle hints of trouble. It takes constant effort and work. But in the long run and even in the immediate moment, it's worth it.

Have you ever been bullied?

The anatomy of a Stroke

Thanks to Stacey at Preemie Experiment for pointing me to this video. Ellie, as some of you know, had a grade 3 Interventricular Hemorrhage, which is essentially a brain bleed, which if she were an older person and this happened would have been considered a stroke.

Jill Bolte Taylor's message is one of hope and something more in terms of the profoundness of her experience. She is a brain scientist and so studied her own stroke as it happened, and it sounded like a pretty bad one as it took 8 years for her to recover. It happened when she was 37. Don't get me wrong, what happened to Ellie is not the same, exactly but not entirely different either. Jill's story and insights into what happened to her are just so amazing. It made me wonder about Ellie's inner state and what she felt and went through. How her perspective on the world might be, probably is, different from your average bear. She emanates so much joy all the time, which I assume is the normal state of any 5 year old.

Anyway, if you have a person close to you recovering from a brain injury, this video certainly offers up an alternative and hopeful perspective. Jill's blog can be found here.

Moments of Greatness

Today I heard a story about a man who has rescued people from random plane crashes three times at great risk to himself. He is not a fire fighter but he is unique. One unique thing is that he leaped in where others would have held back. He actually spotted a plane that was going to crash and though he was far away, he ran as hard as he could to get to the crash sight. In another instance he was told by emergency workers not to go in the house the plane crashed into, but he went anyway to save his relative. He has done this three times - braved the fiery explosive wreckage and hauled multiple people out of it with no protective gear and saved them and lived to tell the tale. It's a truly amazing story of bravery and someone who selflessly helped others at great risk when the moment presented itself. It got me thinking about whether I was rising to the challenge of being great in every day opportunities.

Each one of us, no matter what our situation, has the opportunity to be great every day throughout our day. The question is, will we recognize those moments? Sometimes it may be hard to recognize that a small act of kindness is just as great and can be as long lasting in it's effects as an act of heroism.

I think being a parent offers many of these moments. It's just a matter of paying attention to make sure you don't miss the chance to impart some small kindness on your child that they will hold with them like a tiny seed that grows into self confidence or inner strength or happiness. Ellie often alerts me to when we have had such moments. We will be playing and I will say something to her or do something and she will stop playing and look at me with this serious expression and then turn her face into my chest and give me a hug. She never says why but she just looks really happy. Sometimes she will do it twice. Then she goes back to playing. Those are the most precious moments in the world and make my heart explode.

I think if we have the heart to care and the eyes to see you can be great and not even realize it, not even try. Because it's not about getting something back or seeking glory or fame. It just becomes a way of being that you don't even think about. It is an attitude toward life that you adopt. For me, with Ellie, it's easy. To have this same sort of regard for everyone is the challenge. And for me to have it for people I don't like and have trouble respecting it is the most difficult. People who have hurt me or that I have found incompetent and in their incompetence to have injured others in some way, they are the ones I have the hardest time holding with this attitude. But even they deserve my regard and willingness to treat them objectively which is a different thing to being nice. This is not about letting people walk all over you, it's more about being detached. I will have such an opportunity to practice this attitude coming up in May at Ellie's IEP.

If people everywhere could overcome their fear, negative judgments, ignorance and blindness to just wake up a bit, the world would be a better place. This life with Ellie has really helped me be less self centered and have more of this attitude. When I say being Ellie's mom has made me a better person, like I hear many parents of children with disability say of the experience, it is in this sense that it is most profound. I am grateful because it's a not a bad way to be.

Ya gotta love SNL. Thanks Catherine N!

Disability Blog Carnival #35: The Hardest Part

The carnival is up over at Reimer Reason. It's excellent! Check it out!

Audaciously Dissing the GNS and Java Boycott Day:...whatever

Quick update on all things Ryn Tales: (in order of importance)

Ellie is kicking butt on ALL dimensions and it has been such a fun couple of weeks with her. Mind you she is always a blast but the last two weeks have been really excellent because of the reasons below:

1. Her oral aversion is GREATLY improved. This is an aversion she has had since the NICU which she overcame enough to eat when she was 3 but then when the seizures kicked in at age four she reverted back to being very aversive. Incidentally she developed seizures after 4 traumatic months of being integrated into the public school down the road. I can't help but think that is all linked. The upshot of this regression was that she would no longer even try to speak or mimic us or let us mimic the sounds she made and even more devastating, she refused to eat by mouth full stop. So that is where we are coming back from since May of 2006. So here we are on the verge of May 2008 and her carers are commenting that she is going to eat. I always have to add, "AGAIN, she used to eat you know!" Because if I don't keep telling myself and everyone else it feels like that will be lost forever - the fact that she ate - and along with it my hope and belief that she will eat again.

So what has she been doing that leads me to believe she is overcoming all of this:

a) on Saturday night when we were showing Dada how Ellie can brush her teeth - she not only let me in her mouth and not by me insisting but by her choosing for me to brush her back teeth (which is incredible for a kid with dysphasia and oral aversiveness and hypotonia that makes holding her head straight for any period of time difficult). I did so and she grimaced but did not gag (it is also amazing that her gag reflex has moved that far back because it used to be at the tip of her tongue) and then....she asked me to brush her teeth 3 more times. Not just a portion of them, but all of them. Being a somewhat disciplined maybe slightly obsessive toothbrusher myself - I totally get that! Sooo go Ellie!!!
b) She will play with food now, sometimes, especially if other kids are.
c) She will watch others eat. She used to get upset or not look or try to go away from eating folks when she decided food was suddenly not her thing way back in May of 06'
d) Saturday when Dave put a little bit of Ranchero (a yummy but disgusting nutritionally speaking puff like a cheese puff only with BBQ flavor (obviously an Irish creation) on her lips she pursed her lips and tasted it and liked it - very cute - very Irish. It would not be outside her gene pool to decide she will only eat crisps until she is 20 or 30...well better leave that alone for now.
e) She will practice sounds with us -right now we are working on M.
It may take a couple of years to get her speaking but in terms of the big picture - who the heck cares?! In two years she will only be 7 and if she were speaking by then I would be so incredibly delighted. When you're 5 you have some time to work on things.

2) Gross Motor and Physical Energy:
Ellie's physical energy seems greatly increased. She is less tired and wants to move all the time now. She wants to roll and will also pick to do her Pony. She hardly every picked it before. The other amazing thing about her in the Pony is that on her own with no coaxing she will take regular steps. She used to push off with both feet or just use the right leg and foot with her left dragging along. But now she is using both in a regular walking motion consistently. Hurray for Ellie!

And rolling - sheesh! the kid is fast and wants to roll up and down our ABC rug 10 to 20 times which is allot for Ellie. Maybe more. It's great to see her so energetic and not have everyone always commenting how tired she looks.

3) SLEEP UPDATE: This one is definitely throwing caution to the winds so in light of that I will bold all the really important parts so they really stand out:

Ellie is typically sleeping through 2 to 3 nights in a row and then will be up the third or fourth night. I have actually been tracking this closely to try to understand why and have realized that if she doesn't get enough calories and the difference can be as little as 20 she will wake. If she is cold she will wake so we have been keeping the house warmer at night in case she kicks her covers off. If she gets her meds too late she will wake. If she eats too late she will reflux in the night and wake. So at least I can try to mitigate a visit from the GNS by watching all these things. Ellie's system is very sensitive so tracking all this is helpful because though she is strong minded she is also a delicate flower.


4) Java Boycott:
The day after my last update I had no coffee and only two cups of caffeinated tea. The next day I had only one cup of caffeinated tea. And today I had none as I have built up my stock of decaf tea BUT I did go have breakfast at Victor's and my plan to head off my thoughtful waitress before she wasted a cup was thwarted in the doorway of the diner by a very pushy woman looking for directions. I gave her directions but only after she had vented all her being lost frustration on me first and when I walked back into the diner there in my favorite spot to sit and practice signing was a small OJ and a steaming cup of Jo. I couldn't tell her, gee don't want that, but thanks! That really is the nicest thing someone has done for me today! So I drank a quarter of it. So barring any pushy lost people hopefully I will be able to tell her next time before she pours. sigh. When people are really nice like that you acknowledge their small kindnesses.

Overall, the no coffee thing is actually getting much easier. I feel less tired, have to pee less, and my body feels less tense. I have been aiming to exercise 5 days per week to increase my energy that way instead of with coffee and it seems to be working.

There's probably more and I have some really cute pictures and videos of Ellie to share but that will have to be next post.

Java Boycott - Day 2

OK - so it turns out that not only do I have to quit caffeine but I have to get everyone else on board. I am wayyyyyyy deep into the coffee culture and that culture is hanging on tight. sniff, sniff....

First of all the Gods of Java are in bed with the Gods of No Sleep and they all got together last night and came over. Yep - I spoke too soon, Ellie was up for half the night and of course it was the night before I had to take the first half of my sign language final exam. I believe the name of this half of the test is titled, "How to look like an idiot in under 2 seconds flat" which is translation for having to sign an entire song in front of the entire class. rrrrr (Actually learning to sign a song is a great way to increase your sign language vocabulary and kind of fun. It's just the having to sign it and act it out in front of others that bites.) I did my main practicing while driving back and forth to pick Ellie up. People are so rude to stare at me like that! Haven't they seen sign language before?! Sheesh.

But I digress. So I was up half the night because even if Dave goes in, I can still hear her and can't sleep the difference is I can at least not get a huge crick in my neck and now I owe him the whole week of nights, which is how I got him to go in and take last night. See the marital dynamics?! It's all one big fat negotiation after the next. Alas, it works and we are happy and if the GNS are here for the rest of the week I am so screwed.

OK, OK - can you tell I have had some caffeine!? So up half the night, big test looming at 10am. But just the same I did gear down and only have a cup of Barry's tea this morning. I get to school just fine and am feeling pretty good. I drop Ellie off and head off to the diner I always go to in the hour I have to cool my heals before class. They have the BEST pancakes in Boston and I can get two strips of beacon, a large pancake, one egg over easy, bottomless cup of coffee and a small OJ for under $7. And they don't mind that I sit there and frantically practice my signs to brush up before class. The waitress is really sweet and one of those people that can call you honey and it is a nice thing. Usually I walk in and I say, "Hi!" to her and the guys behind the breakfast bar at the fryer. She says, "Hi honey." and brings over my coffee and OJ. 5 minutes after that my breakfast appears. You see the problem? So with the hot steaming cup of brown gold right under my nose, I thought, OK, because I have this sign language test I will just drink half a cup. But after my pancake was demolished she came over and filled my cup up again with coffee!

What am I going to do? I am going to have to admit I am jumping off the java bandwagon. Next Tuesday I will have to say, "Hi, just OJ today please, trying to quit." I hope she understands.

Sigh. This might be harder than I thought!

Caffeine Dreams

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

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

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

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

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

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

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

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

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

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

The problem with being female

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

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

It was no easy homecoming.

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

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

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

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


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

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

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

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

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

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

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

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

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

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

A day out at the New England Horticultural Show

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

Water Fairy!

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

The Road Not Taken

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

I took the one less traveled by,

And that has made all the difference."

~Robert Frost "The Road Not Taken"

Am I in denial or enjoying the gift of experience?

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

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

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

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

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

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

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

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

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

There and back again, again

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

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

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

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

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

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

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

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

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

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

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

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