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.