Thursday, November 30, 2006
Alas, I have two long posts ahead of me regarding Ellie’s latest adventures in casting and nutrition for the brain damaged child. With my MOTSP goal in mind, efficiency of language will guide. Right now I am tired because MI III sucked us in last night and kept us going until after midnight…. Is it only me, or did the lead woman remind you of Katie too? Somehow after way too much exposure to Tom’s personal life, dreams, philosophy, religion, views on psychiatry, and bizarre personality I couldn’t quite separate all that from his character. Sigh. Lesson Learned: I won’t ask and spare me the details about your life because I may not like your movies anymore, as much as I want to like them and you…
Lastly, today is the last day of NaBloBigMo. BloBigMo has been an interesting experience to say the least. If you are an aspiring novelist I highly recommend NaNoWriMo. I will not be one of the WriMo winners as I fell short of the 50k. I did learn a lot about writing and became very clear on all I do NOT know about structuring a novel. I want to learn more about that. If anyone knows of any great books or resources let me know. As my insanity seems a permanent life long condition, I may even attempt it again next year.
Monday, November 27, 2006
Anyway back to the point. The unintended part is simply because we have been balls to the wall dealing with a ton of tedious yet critical things to do since we got home from our Thanksgiving trip. It’s my karma for getting pissed off at the lame ass mothers ignoring their kids whilst shopping. As you can see I have learned nothing.
It’s great getting away from home and the enormous TO DO list that shouts through the ethers at me there. Our latest get-away was to the country to spend Thanksgiving with friends. All emotional yucky family quagmire completely sidestepped in favor of the sweetness and light of hanging out with old friends, at least from my perspective. I don’t think that was how Ellie felt.
My dear friends, whom I have not celebrated the holiday with since the birth of their first child eight years ago, now have three children. They are all great kids and all really sweet with Ellie. There were a lot of people around us for the couple of days we were there and from Ellie’s perspective a lot of competition for Mama’s attention. She kept a trained eye on her toys and the other kids especially when they were interacting with Mama. She also started vocalizing way more than she ever has at home with me. I think the picture speaks a thousand words. Notice how her mouth is open and she is working hard to be heard over the person who had the audacity to speak to her Mama.
I have noticed she “talks” more to Dave than me. I think it’s because up until this weekend, I had her body language and many of the sounds she makes worked out. To others watching Ellie and my interactions it probably looks like I am a bit psychic the way I know what she wants just by looking at her. Being trained to watch the body language of executives in order to keep strategic planning sessions on track, makes understanding Ellie's body language easy. Let's face it, her hidden agendas are way more genuine. Though, I must say her needs are becoming increasingly complex. Lately she will often reach for the pen of her Magna Doodle and put it in my hand and want me to write what she wants. I think Ellie might think I am psychic, just like many kids think their parents are omnipresent and omniscient. I think I will not so easily dispel this notion for her as it could come in handy in the teen years.
With all the festivities and visitors at my friend’s the environment was filled with the cheerful sounds of laughter and talking and cooking. To get heard above what she may have experieinced as a bit of a din, Ellie quadrupled the volume and quantity of her vocalizations after just a few hours of being there. It was great in the sense that she was expressing herself. One of her weakest areas is in expressive language and it’s probably partially my fault because of the pseudo psychic thing I mentioned above. During the Thanksgiving meal, however, she was vocalizing more and more and insisting on being heard. I wonder if she was around other kids more often if she would be speaking. Many of these new and loud vocalizations sounded suspiciously like whining and were putting my overloaded host over the edge to the point where he had to take a nap. I felt kind of bad about that, though he was really gracious about it and assured me it was not because of Ellie's new found voice.
What I really felt bad about was the fact that I didn’t know what the heck she was saying. At least she was vocalizing about lots of something loudly. All mothers of preemies can appreciate the lung capacity she has gained in order to do this. I attribute that to the many thousands of hours we have spent doing the Scotson Technique Neuro Respiratory Therapy with her. At Advance they never tell you about any side effects – which this new loud vocalizing seems to be. When Ellie was in the NICU and surviving day after miraculous day we used to say, “Give us your worst!” I think she is holding us to that.
I try to be careful not to reprimand her for whining when she might not be. I am reminded of our friend Francesca and her mother. Francesca has CP and is a couple of years older than Ellie. She has made amazing progress. Her mother said to her one day, “Francesca, stop whining!” Francesca replied, “Mommy, I wasn’t whining, I was singing.” How bad did her mother feel?! Yikes. Is that what it’s like for Ellie?
I think about that all the time when Ellie is vocalizing. I take each utterance as a communication though sometimes I do lose it and say, "Ellie enough!" That does get her attention and gives me just about 10 seconds down time. I don't do it too often though for fear that I will send her the wrong message. I want her to know I support her attempts to talk and communicate - Express Away! I have noticed when I answer her correctly she gets really excited and when I try to converse with her she gets more susinct in her attempts to talk.
I imagine that being mute is incredibly isolating. People make assumptions all the time about Ellie because she can't speak. They think she is stupid or talk over her and ignore her. Right from the beginning even when she was unconscious we would tell her what was happening to her and try to explain. We consciously decided to take it for granted that she was in there and conscious and on some important level needed and wanted to know what the heck was going on around her that she had no control over. If you are mute, it's very difficult to get control. Even with this attitude at times I have to consciously remind myself that she is not just babbling or whining but trying to make sense to me. Where do typical whining episodes of a small child fit in to that? I yiyiyi
It's clear to me that I need to crack the code. I need Ellie's Rosetta Stone. If anyone knows where I can get it, do let me know.
Saturday, November 18, 2006
The next time I watched him was at my college graduation. He was the keynote speaker. Everyone, including myself, was snickering before he began. Making cracks and wondering if he would be switching into slippers and house sweater. He arrived at the podium in black robes and looking serious, a lot sterner than I remembered. He intoned a few perfunctory remarks congratulating us on our accomplishment of finishing college, etc. Then his voice got a little louder and he started to talk about our responsibility to save the children. He started waving his hands gesturing to mark his points. He was passionate. He spent the rest of the 40-minute speech beseeching us to watch over the younger generations and make the world a better place for them. It was inspiring. Who knew? Calm, soft-spoken Mister Rogers was an activist!
I was reminded of him today when I went clothes shopping. For the record, I love clothes and fashion, but detest shopping. I am very long legged (33” a piece), small and short-waisted, and the proud owner of bicycle racer thighs. The length of my arms totally makes me believe we descended from apes. Finding clothes that fit is challenging. To add insult to injury, the florescent lights of the dressing rooms always makes me look as if I recently emerged from the crypt. As you can see, I am up against some serious issues to even get in the car and go to a store. But I had to go today and yesterday and will have to go again until I find a dress for a wedding we are happy to be attending in January.
What bothered me more than the fact that 99% of the clothes won’t fit me properly were the poor toddlers trailing along with aloof mothers with no toys. What is the deal with this, throw your kid in the cart and expect them to sit there happily with nothing to do but watch you shop? I felt so bad for the little tykes. Do you remember how uncomfortable it is to sit at the bottom of a shopping cart? The cold hard metal grid at the bottom was not made for sitting - even if you only weigh 30 pounds and have knees that still work properly. But tell me, how hard is it to at least bring one or two toys for them?
I am always fascinated when I see little kids at events with no toys. At my sister’s wedding, there was a pre wedding dinner with lots of little kids. We were there with Ellie and her many books, toys, dolls, etc. Ok – it wasn’t that much stuff, but we had stuff. When Ellie had the brain bleed and survived it, the therapists told us to stimulate her. Also, because we almost lost her several times, don’t take one moment of our time with her for granted. On top of that there is this urgency in our minds to give her an enriched environment especially when her brain is still growing. Three year olds use way more brain cells than any adult. Three year olds are amazing in their ability to learn and perceive. Slowly after this age the brain starts to pare back and develop pathways that will determine talents and personality. It’s really fascinating and something we taught ourselves a great deal about in order to help Ellie.
That’s not to say we don’t get burnt out and tired – we do. We aren’t perfect and always as present as we need to be. But when we are on her time, meaning when she is awake, we never leave her without something to do. We fasten toys to her car seat so she can hold them. We take books to restaurants. We take books and toys wherever we go just like we take diapers and her meds. At the wedding there were all these kids and not one with a toy. They all ended up playing with Ellie’s toys, which was great and taught Ellie a little bit about sharing.
Today, when I was out, there were all these kids, being completely ignored by their parents, their little faces desperate with boredom, their brains churning at a phenomenal rate only to spin in frustration. One little girl’s mother went up the escalator without her. The little one was scared of the escalator and wanted to hold mom’s hand. Mom just wanted to get on with it. The little girl was crying and calling to her mother for just about 10 minutes. I hovered nearby in case she got her hand stuck in the thing as she slapped the rail or in case she slipped as she kept trying to get on it. I wondered if the woman was coming back. It made me so nuts. It’s true that sometimes I envy lives of able-bodied families and hate it when I see parents oblivious to their good fortune. It breaks my heart.
But please tell me, what is the deal with parents going to adult places with toddlers and not bringing any toys? I just don’t get it.
Thursday, November 16, 2006
I was lucky to have a small team of brilliant helpers that included Dada, (Grandma) Nanny Bernie and Grandpa Paddy. We still put on a big spread, but this year I did not invite our whole street and just kept it to family and Ellie's nurses. Ellie gets really overwhelmed by too much noise and too many people.
Here Ellie is styling in her new red velvet Starlet track suite compliments of Auntie Sue, and she loves her new scarf made especially for her by Maureen!
Nanny Bernie and Grandpa Paddy labled everything in the house with white lables and words written in big black letters. We made name tags for everyone on rainbow stickers (Ellie's current favorite song is the rainbow song from Signing Time) so that no matter who Ellie was hanging out with she would have a new word to learn - remember when I mentioned previously how she loves to read our logo shirts? Same idea. We also placed loads of her favorite books everyhwere so people could read to her. During the party Dave and I spent tons of time with her and she got to cuddle with her auntie Lauren and Uncle Brian and her Grandma Irene as well has her beloved Tiffany and Bonnie. For the cake Dave came up with the idea of making it in the shape of a 4. I then implemented this idea and added candles that spelled out Happy Birthday. We showed her the cake and lit each candle as we spelled the words with her. Instead of the birthday song, which Ellie doesn't like, I asked her what song she wanted to sing and she picked, "Ellie you are beautiful" a song I adapted from one a friend taught us. So we sang that and then we helped her blow out her candles.
Nanny singing softly to Ellie before we leave for the airport.
She went to sleep happy and contented if not a bit exhausted. I am not sure what everyone else thought of the party and it's help yourself eats, but I think Ellie enjoyed herself. Because I was spending time with her there are hardly any pictures, but here are a few from the last few days from November 9 to yesterday.
Nanny Bernie and Grandpa Paddy went back to Ireland yesterday. A fact Ellie is keenly aware of. She is still a little weepy today and has had to check out their room a few times to see if they have really gone. The rain is reflecting our mood. Thanks to everyone who helped us make the hyperlexic party fun for Ellie and for all the wonderful birthday pressies. xoxox
Thursday, November 09, 2006
Here are some pictures to give you some idea of how far along she has come from those first scary days four years ago.
Pictures left to right from the top: Day 2 of life: holding hands with Mama through the isolet; 2 months and 4 days old breathing on her own; first time being held by Mama at two weeks old; First time being held by Dada at one month old; Ellie in her Step-N-Play at 18 months; Ellie and her Auntie Sue at 2; Ellie and Mama Easter 2005, Big four year old girl, Ellie, and Mama November 9 reading while waiting for casts.
Have you heard of those musical recitals for some orchestras where the musicians have to play behind the screen so that the judges don’t rule them out based on how they look? It’s true. Malcolm Gladwell talks about this at length in his book, Blink, which I give my highest recommendation. There are other great historic examples of these perceptual challenges as well. For example, until the complete breakdown of the integrity of our voting system the tallest presidential candidate has won – since Lincoln. (Why Lincoln? Because he was the first candidate a lot of Americans had a chance to see in person.) Of course this record was broken when Bush, several inches shorter than Gore cheated the whole electoral process with the help of his crooked brother Jeb - ah - I mean -won the race.
Bush was well aware of these dynamics when it comes to height and the way we judge a person's competence by it, Gladwell called this the Warren Harding Effect. Warren was our 29th president and one of the worst Presidents in history though extremely tall and attractive. Not taking any chances, Bush, during the presidential debates made sure the public would not be aware of how much shorter than Gore he is. His platform was raised to make him look as tall. The media covering the debate was instructed to, in the side-by-side shots, make sure the tops of their heads were level. You can see the camera dip every now and then on Bush. Probably some liberal cameraman pissed off about such a deception.
What does this have to do with geeky being the new cool? Well in the blogosphere you can be reading a person’s blog and they sound cool, interesting, funny, edgy and confident, all things being cool implies. The way some bloggers think and write is hep cat cool. Then you make the mistake of looking this person up on the web, especially if they are one of the more famous bloggers, and there they are at some blogging conference, looking supremely geeky and uncool. The next time you read their blog you become aware of references sprinkled into a post here and there to their greasy hair and gangliness. Dad Gone Mad leaves not doubt of his physical, ahem, let’s say issues. But still, he is cool because he admits in with edge and I like that.
Then there are all the folks blogging who have disabilities. People who are discriminated against in getting jobs and some are shunned by society in general because they are different. But you read their thoughts and they are as crystal clear and relatable as any one having this human experience. I was most struck by this blog. She is amazing and so like you or me in her concerns and the passions of her argument. To look at her you might be put off if you did not understand (see October 29, 2006 post).
This is exactly what happened when the local school sent their psychologist out to evaluate Ellie. Every talent of Ellie’s I mentioned she countered with something that she thought was lacking in Ellie. I told her that Ellie, 3 at the time, knew all her primary and tertiary colors, her alphabet, and numbers up to 10 and was very interested in most things written. She told me that none of that was important and that Ellie should be doing more imaginary play. I then demonstrated how Ellie did do imaginary play by showing her how she interacted with one of her puppets. Amidst Ellie’s giggles, she said, and I quote, “Well, I guess her life is like one big video game.” In sum, she disregarded everything I told her about Ellie and judged Ellie based on how she looked. In doing this, she completely wrote her off. In fact, as she was leaving, her final verdict was this, verbatim, “Well, HMPH! (frowning and throwing her bag over her shoulder) I can see that she is a lot of work!”
I was speechless. I had so many responses I could not verbalize in that moment. The first was, “Well yes any child is if you are doing it right!” Other come backs were more like - YOU STUPID B&TC! And - How Dare you say that at all and especially in front of Ellie, who knows what you are saying – like I told you! And - GET the F*&& out of my house!
I guess it was a good thing I was speechless at the time. There are always going to be dumbasses in the world. Some will have Ph.D’s and hold positions of authority and look like normal people but really just dumbasses.
Perception is a weapon sometimes. It fuels our fears and makes us push people in boxes. When you are listening to people’s voices on their blogs, some of that filtering is taken away and you get a chance to really listen and get to know them without all the sludge of your conditioning to get in the way. Maybe this is my honeymoon period with blogging or maybe I am a geek who aspires to be cool. Whatever the case, I am glad to have discovered this place where people have a chance to get heard with the benefit of a doubt they might not normally get.
I am not talking about only disabled people, I am talking about everyone. If you are a woman, short, a tall man, pretty, ugly, fat, skinny, able bodied, white, black, purple, disabled, etc people have projected their filters on you. They have given you credit where it wasn’t due or underrated you when it wasn’t due and sadly, not seen you for who you really are. Now, I know that what we write on the web is not necessarily exactly who we are all the time, some of us are more transparent then others. The blogosphere, however, allows people to have a voice in society beyond what they might get due to how they look. Blogging exposes me to the voices of the human condition in all its messy glory in a way I would not be able to see face to face. Because of blogging, geeky is the new cool, and it’s about time.
Sunday, November 05, 2006
I thought I would have to write and tell you I would not be posting much this month because I was attempting to write 50,000 words for NaNoWriMo.
However, as it turns out, my natural proclivity for procrastination is also in full bloom so I am actually posting more. Yes, all you lucky readers of Ryn Tales – more. Not better or more interesting posts – just MORE. After all that is what the theme of this month in my writing world is all about, is it not? More, MORE, MORE.
We're talking 50,000 words more.
What have I done? Truly, am I mad? Here I sit, quarter past midnight, writing a blog post after writing 3,000 words on my slog to win NaNoWriMo where the prize is nothing monetary, nothing auditory like the praise of millions, but incredibly solitary. The sole prize of being able to whisper to your self, “I did it.”
The question is, are 50,000 words that you wrote in haste over thirty days of madness really something to brag about? Is the act of doing so a clear cry for help. Maybe, a subtle attempt to scramble the brain, leaving it forever jumbled up with the computer chords below the desk that have long ago forgotten their purpose? Really, what the F#@& was I thinking?
My creative style up until recently, like 4 days ago, has been one of go and stop. I would work in great bursts of energy and then do nothing creative for months. But here, with NaNoWriMo, I am afforded no such luxury. Nooohohoh. It’s go, go, go every day. The problem is I don’t have time during the day. I told myself if I did this I would not put it before Ellie. During the day is her time. I also have my business seedling to nurture and work to do just about everywhere I look. Ultimately, when things quiet down it’s at least 10pm and I crank out 3,300 words until midnight. The problem is, though my eyes are tired and my heart is guilty knowing I will make it through tomorrow on caffeine jitters, my mind won’t shut up! It says, why stop at 3,300? I’ve got plenty more where that came from. Remember the Pitter Patter post? That’s right lady, you took your finger out of the damn and here I am. What’s this bull about you needing to sleep? It’s all a lie about the mind needing a rest to maintain one’s sanity. Lies I tell you! All lies - mWAHAHAH!
I have decided that my own mind is the spawn of the devil and when NaNoWriMo is over I have vowed never use it again. It’s clearly a creature that needs to be caged at all times. I may even have to watch TV to turn it off completely. For now my starts and stops instead of being on a monthly basis are happening every other day. As a result I have written 5,823 lousy, quality starved, quantity-begging WORDS.
Friday, November 03, 2006
Thursday, November 02, 2006
Today Ellie had her purple casts removed. I gave her Motrin before we left the house because I knew that Dr. Webster would be recasting her feet in an even greater stretch in the journey to the neutral zone where standing can occur. What I had not planned on is the pain Ellie experienced during this procedure. First off the “saw”, which does not really cut but vibrates is REALLY LOUD. It scared the bejasus out of her. She was literally screaming. And for those of you who know Ellie, she is NOT a screamer. She has only screamed once before when Dr. S sprained her Achilles tendons while examining her. That is the subject of future RANT, I mean post. The other thing that you have to consider when dealing with someone who has a brain injury is that you can’t be sure what something will sound like to them. I was fortunate to meet a 25-year-old man who suffered a traumatic brain injury at birth and has CP. He told me that when he was a toddler his mother would be whispering to him but to him it sounded like she was yelling. That story has stuck with me. I make it a point not to take for granted, because I know Ellie can hear, exactly what or how she hears. We have to do this all again next week on her birthday so I am going to bring earplugs for Ellie.
The first cast, other than the loud saw, came off ok. We gave her a break in between to calm down. She was hyperventilating and the tears were flowing still. Seeing tears on Ellie’s perfect rosebud cheeks and hearing her cry and scream is quite simply - horrible. She is such an easygoing kid that she has never once had one of those totally mortify you in public toddler tantrums. It’s just not her. When she screams and cries with real tears I know something is really wrong.
The second cast coming off was even worse because she was even more upset at the saw and her foot had some sore pressure points that really hurt. There was no skin breakdown but the skin over the bone that protruded out the farthest on her foot was a cadmium red color and looked really painful.
Overall, this was a much tougher experience than I had anticipated. Thank god Bonnie went with us and could help hold Ellie down while they were de-casting her. Once the casts were off, it was much easier to distract her with books and her phone to get the new ones on. Ellie picked red this time and they are quite cheery.
The amazing thing is the change in her feet. The right one especially was naturally “sitting” in a much less turned in position. The left one showed significant improvement as well.
After a good nap she was still a bit weepy and grouchy but when Dave and I lay down with her to help her fall asleep tonight, she was pulling her leg up smiling showing them to Dave. It was really cute. She even seems a little stronger in that they are not wearing her out at much. When she first got them she was just exhausted from the weight of them. Every time she wanted to move she had to lug this extra weight around. She was pale for a week in doing so. But tonight she was flinging her legs around like a champ.
It was definitely one of those experiences as a parent where I had to surrender and know that I was doing right by Ellie and her future even though in the moment it really sucked. She is a warrior princess.
But what made this year especially fun was that Ellie was way into it. Maybe it was because it was a very warm night and she napped for three hours. Although, at the first sight marauding Jedi’s and X-Men she insisted on being carried from house to house. From Dada’s strong arms she had a great time looking at everyone she saw. We figured out that if I held a candy in each hand she would pick one. There was a night bird in a tree making a thwack, thwack sound that she also thought was hilarious. She also made it through the entire street and round the corner to the little side street. In past years after 3 houses the excitement of it all got the better of her and it was time to go home.
Our little warrior princess is certainly much stronger and looking beyond herself at the outside world these days, which is one more blessed developmental milestone. In sum, it was the best Halloween ever.
Wednesday, November 01, 2006
Just to be clear, I am NOT participating in NaBloBigMo. No, no way! I committed to NaNoWriMo first which you can check out here http://www.nanowrimo.org. If I were to do both I am sure I would slip into the parallel universe forever where I am actually a graying, skinny ass spinster with spiders clinging to my hair as it sweeps the floor as I haunt my ramshackle house with only the company of 300 cats. I shudder at the thought. So, no, No, NO, I just can’t go there.
However, for those of you who are participating in NaBloBigMo because you heard about it here and thought it would be a cool thing to do, I have some suggestions about what you can write about – everydamndayofthemonth! Remember these are just suggestions, you can NaBloBigMo however you like. They are as follows:
November 1 - Document all the batshit insane (BSI) things you did on Halloween. Dave and I looked like this (will load picture as soon as blogger is done fixing their photo upload app - which the picture of us actually broke). Ellie pretty much would not look at me deciding she would prefer it if I go exist in the parallel universe with the cats. If you are of a religious bent, it’s also All Saints Day – so go ahead and pick your favorite saint to expound about in your first entry of NaBloBigMo.
November 2 - List your three favorite blogs and why you like them. That would look something like this: #1. Ryn Tales: It’s informative and funny, 2. Ryn Tales: ditto #1, and 3. Ryn Tales: ditto #1 and #2. Anyway, you get the idea.
November 3 – Share the 10 things you like to do when you are procrastinating. Like for example, I am blogging right now when I should be figuring out what the hell I am going to write my novel about.
November 4 – Your life in pictures – go crazy
November 5 – It’s the full moon tonight so do a free writing like the one I did here just so everyone can be really clear about just how BSI you are. AAAAOOOOOOO!
November 6 – Share who you plan to vote for in the election or at least what you will be wearing when you VOTE!!!!!!!!!!!!!!!!!!!!!!!!!
November 7 – It’s Election Day so GO VOTE and then blog about your voting experience. Did you get any cool stickers with little check marks on them that say “I voted!”? Did you exchange fisticuffs with a voter from another party? Oh wait that was me last time around. I had finished voting against Bush when I bumped into this woman with a big “W” all done up in diamante’s of stars and strips pinned to her cracker barrell chest. I said excuse me, and she said in a Texan drawl, “Vote faw Dubya!” To which I informed her that we had cancelled each other’s vote out entirely. Things went pear shaped from there…
November 8 – Write about how you will bask in the glory of a new democratically controlled congress and renewed hope for the survival of the species and the planet. Or, drown your sorrows in a pint of tequila and help others by blogging about ways you can avoid thinking about the next years of continued republican tyranny.
November 9 – Conquer your post election hangover by listing three beautiful things that gave you pleasure today. In fact, you could just forget this freakishly geeky list and do this every day of the month. If you are lucky, Clare might even link you to her blog honour roll.
November 10 – Do a blog entry you were intending to do anyway. Catch back up with your own life and take a break from reading my blog!
November 11 – It’s Veterans’ Day and I would really love to hear other people’s opinions about why it is, indeed, possible to have empathy and support for our soldiers but still be against the war. You know, the two can really be separate.
November 12 – If you have gotten this far your creative juices are probably up to speed so you can figure out what you want to write about without my #$%^&** help!