Because I want to remember, Ellie, age 1 adjusted

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.