Get Angry or Get Better?

Sometimes I chose the path of anger. That's right, chose. I don't buy it when people say, I couldn't help myself. You can always help yourself, even if it's just being able to control, monitor, or mitigate your inner state of consciousness. 

But sometimes it's hard. I find it hard at the end of Winter when Spring feels like it will never come and I am sleep deprived and overwhelmed by managing mine and Ellie's life. Three doctor's visits this week and a Baker's Cyst behind me knee are not helping...

I can also chose to learn from my anger and the difficult things that happen in life. I take that path just as much, probably more considering the big picture. Decide for yourself in reading my blog. I have been angry about Ellie's computer teacher making her use a head switch. If Ellie didn't have such great use of her hands I would be all for it. But head switch? On Ellie? Come on!!!  Ellie's head is the most difficult part of her body that she tries to control. When, oh when are you going to see my kid as she is, not as you would like her to be?  

Sigh.  See that? Up there is me giving in to anger.

Ann has reminded me that there are always two sides to every situation. I am not sure how to learn from this situation yet or what the other side is of Ellie's hands being totally written off and her being made to use a head switch. But I am going to start to look for it and try to understand as I have been but without the anger. Any suggestions from any readers will be appreciated. 

It's good to be reminded that everyone makes mistakes, not meaning to, and without malice and that they deserve compassion too. If everyone thought like Ann seems to, the world would be so much a better place. Thanks for setting such a great example of this principle in your post here!

The Trouble with Experts

I have been thinking a lot lately about experts and expertise. Malcolm Gladwell has researched this topic in his book Outliers. Good book, I highly recommend. 

And this is probably a post that I should use for the organizational development blog I need to start just to get all these posts out of my brain. But it applies here because anyone in our situation has to deal with the so called "experts" all the time.  They come in all shapes and sizes from the obvious ones called doctors to therapists to school psychologists and on and on. The more issues your kid has the more experts you will have telling you want to do and what you can't do and more importantly what your kid can and can't do.

The trouble is that if Gladwell is right, expertise has its limitations. It takes roughly 5 years of practicing the same thing 8 hours a day to become an expert in it. Throw in all the differences in human functioning in each different human and then add in the differences in injuries, well you can see where this is leading. It's really hard to apply all that expertise.  Doctors have a hard road when it comes to this. And don't get me wrong they have helped us loads. They have also hurt Ellie irrevocably so just as much as they have saved her life.

There is a saying in OD that I heard from a woman I was training to do a leadership intervention. It is this:

"One size fits one."

It has stuck with me. It speaks to the need to take each case you come across and treat it like it's unique - because it bloody well is!

The problem with this approach is that if an expert does not continue to keep the same attitude of learning and humbleness that they probably had when they were training, they miss a lot of differences and uniqueness. Which leaves them open to being very wrong. Certain things that have been suggested for Ellie that have clearly been wrong and one look at Ellie would tell you that. But that is the problem with expertise. It can blind a person as much as it can lead them. 

And someone who relies on being an expert to hang their identity on will surely fail to have that questioned in any way. They will reject any data that was beyond their reckoning and that may contradict their expert opinion. This is dangerous at worst and a big waste of time at best. 

The trouble with expertise is that it can make us stuck. It feeds the ego. It comes cloaked in prestige. It tells us who we are and who we can have power over. It's so ingrained in our society that I have found when I don't take this role when I am teaching my students it makes them really uncomfortable and they may doubt my competence. They don't like it when I don't spoon feed them or if I question something that they think should be an absolute. I can tell you there are very few absolutes I have found to hold true.  Other roles like helping ones or collaborative ones have strict definitions for use and context as well as where they are allowed in hierarchy. And that is really sad. Sometimes life feels like it's about power shifts and control versus learning and discovery and accomplishment. As if controlling others was the task as opposed to actually creating something useful, like an assistive technology set up so a kid can find her voice. 

I am having some trouble with experts these days. I am having trouble with them not listening to me and not allowing me to collaborate with them. It's hard. It's prevalent in our society. 

But if there is one bit of advice I could give anyone with any expertise it's this:

"One size fits one."

Deal.

Another Stargazer Poem

I think this poem is about missing a loved one or feeling far away from God. Stargazer Lilies are my favorite because of their fragrance, the very essence of Summer, and they are so luminous. Walking in a moonlit forest is exactly where I want to be when I am blue.

Here you go:

Another Stargazer Poem

I was god that night
Walking through the trees,
My head turned upwards
Taking in the stars
The air was alive in it's smell
It smelled of life in all it's stages
The scent of birth and pain and sex and decay
Hung in the air like summer incarnate
And I felt like the center of it all
It was all around me and over me and inside me
Living things cried into the night
And their moans crashed upon my ears
And I was happy
And I was alive
And I was god that warm night
And I wish you could've been there
When I looked at the stars and saw your eyes
Looking down on me

by Tearon Uzuki

Ellie update: no fever all day today - so that is good. Still very sleepy and coughing now. Trying to keep her moving so it doesn't all settle into her lungs. Gave her UMKA Homeopathic cold care as well as Echineacea tea, frankincense essential oil on her feet, foot soaks, and a whole lotta love....let's hope this all works.

Cabin Fever

I have it bad. Ellie slept on me for upwards of 5 hours today. And she is still sleepy. It's the flu. But I secretly wonder if she is just done with Winter and decided to turn into a bear and hibernate? She has been wanting to read "Where oh where is baby bear" again and again. Maybe that was just her way of saying, "See you in June."

Dave is in Ireland getting his first real break in 6 years since Ellie was born.  I'm happy for him, it was my idea. And I am really glad he got out before the plague hit. 

It has been six years too. Six years of interrupted or no sleep, six years of holding our child who is often sick, six years of trying really hard to push a twelve foot bowling ball up Mount Everest. I think we have done pretty well so far and I know we have given it our best and will continue to give it our best and then give the rest that it requires of us. Because I am sure it will take all I have.  But the last two days, with no one to talk to but Ellie, who is only available for consult between the continuous nap have made me see how isolated we are in many ways. 

My family travels right by our exit off to see each other, only cautiously seeing us when their guilt gets the better of them. I see the little girl who lives down the street taking advantage of this warm day to ride her bike. I hear the other kids in the background when Dave calls to check in.  It's all making me a little sad today. Maybe because I am sick too. Not sure. 

I feel really isolated and on days like this it feels like it will always be this way. 

A few pics of Ellie's Ballet Class

Pink Pony Ride

Over a year ago now, Dave bought this little blue scooter board so that we could sit on it and help Ellie use her gait trainer - also called Pony. Ellie got pink pony (who has yet to be officially named by Lady Muck) from Santa. Being snowed in has its benefits in finding ways to make the day fun. We put it under pink pony and were able to take Ellie for a ride. She love it. We should have video taped it but no one had an extra hand with Dave in the back and me pulling from the front, but the squeals out of Ellie are a testament to all the work we have done on raising her diaphragm. 

Warrior Mama and my Direct Selection Kid

When I was pregnant a good friend of mine said, "Wait till you meet Mama Bear!" And I was like, "Who?"  And he chuckled knowingly and said, "Oh, you'll recognize her when you see her."

He was so right. There's no one or thing I will fight for like my child. All Mama's out there know what I am talking about. And not to slight the Dads, because there are certainly Papa Bears too.

You know from the last posts that we have been struggling with figuring out what Ellie can use to help her communicate. I have been VERY frustrated with one of the specialists at the school who is the gate keeper to technology for Ellie and the same person who has been shunting Ellie down a direction that has felt like the wrong way to go but I didn't know why. It wasn't until Friday when the outside specialist came to observe Ellie that I could put words to why. But wow what a relief to finally have the words to put behind my nagging yet previously unfocused conviction.

To back up just a tad, the school has been working with Ellie to figure out what technology would be best for her, and this regard they are getting a lot of it right. We are really happy with the work going on in speech and OT and regarding the use of symbols and just the shear creative variety they are using to approach it all. 

But there is one area that has been keeping me up at night. Early on last September Ellie got to try "Intellikeys" a couple of times at best. At that time the specialist working with Ellie was new (to Ellie) using new material in a new room, etc. See that word "new".   Putting  "new" in front of Ellie is like throwing down the gauntlet and is the thing that makes Ellie decide she is going to resist until it's not new. I always try to mix the familiar with the "new" so that she overcomes that hurdle more quickly, kind of like hiding the peas in the mash potatoes. 

In January, I had asked this specialist about the strategy again and she told me that Ellie couldn't manage Intellikeys and that Ellie would probably use a number of ways to communicate, like finger spelling, signing, and switches.  She then back paddled and said that she wasn't saying that Ellie would never be able to use it... 

This did NOT sit well with me. 

She also told me that she tried her on Intellikeys because of what she was told Ellie could do and that Ellie did not demonstrate that. See my comments on New - which this specialist didn't realize. When I told her about that monster named New, she looked away and checked the time and then just stared at me. I realized she was not interested in any data from me, "the over compensating, unrealistic parent figure".   That's so old school. I hate it when teachers take the "I'm and expert and have nothing to learn from you, oh bothersome parent" approach, which effectively shuts the parent out. Which, of course, in my world is a critical error. 

Mama Bear has been raging inside me ever since, but with no words and only a feeling that this approach was wrong. The bar, by this person, was set low on Ellie. All the stuff she is doing at home doesn't relate to what is happening at school - at least when it comes to accessing the computer.  

In the mean time, Dave got Ellie an adapted key board for the lap top she inherited. Her very first time on it,  she proceeded to try out every single key to see what each one would do. She ended up discovering  7 keys that we didn't know about.  This wasn't a perfect set up but it was something.

Finally on Friday I got an Assistive Technology guru in our home to check out what Ellie can do and to try her on Intellikeys when I was present so I could provide the familiar to ease the New.   Ellie was able to flip through a familiar story and learned 4 new keys there and then (though until we put a familiar story to use the keys on, she would have nothing to do with it).  

The upshot of the meeting was a few really important things:

#1. Ellie is a Direct Selection kid - meaning she likes to push buttons.  Direct Selection  - no kidding?! I looked around our house at all of Ellie's toys and noticed that they are all about pushing different buttons in different sequences to make stuff happen.  She had been "declaring" herself, as Dynio used to say, for a very long time.

Eureka!!!  

The specialist also observed that Ellie had memorized the buttons on her keyboard so that she could use them without looking at them.  Ellie had memorized the keys so that she would not have to refocus her eyes from key board to screen because that is really hard for her due to her hypotonia.  This also explains why asking her to scan images using a switch is going to be harder on Ellie than having her directly select what she wants via a keyboard. She will still have to do some scanning but providing her with choices that are laid out before her that she can use her thumbs to access make sense for her. That is what she has been doing her whole life! 

#2. Strategy. We finally have a strategy that makes sense to me versus the "we'll see what she does" and try to force fit her into someone else's view of her regardless of who she is. It's really amazing how people don't allow themselves to see Ellie when she is right there in front of them. People have so many filters about what a kid in a wheelchair who drools can and can not do they forget to see them as they are. 

This new strategy focuses on Ellie's strengths - the use of her thumbs, her curiosity about how things work and manipulating things via buttons. She navigated the Intellikeys easily.  It was clear to me that Ellie has declared herself and her preferred communication but I needed the words to make sense of it. It's not that Ellie won't sign or use other forms, but I almost feel like she was doing those things to fit in / join in with what everyone one around her is doing. She loves to learn and she loves to sign, I don't want that to go away. But signing is hard - pushing buttons takes a lot less energy. And communication for her should be suited to her to make it easier -  not harder. Switches are often the preferred device for kids without the fine motor ability that Ellie has. Ellie has great fine motor and shouldn't be limited to a two button switch where she has to rely on scanning with her eyes - which is what is hard for her. 

#3. Equipment.  Finally an answer on what equipment she needs now and some idea of where that will lead. Right now we are looking for a used Intellikeys as well as a programming language that I will write about later once I get the report from the specialists. 

Relief. Direction. Sanity. At Last.

Don't you hate it when you know someone is wrong about your child but you can't argue why because you don't have the words?  

Glasses, Development, No more Cisipride, and "I love you"

It seems since graduate school, which I entered in 1997, life has been a constant game of catch up. There have been virtually NO moments, since 1997, when I have been on top of my to do list. This has got to be that middle life stuff I so despised in my parents. They were just all about work all the time and stressed out.  I can remember completing a task that was the last task and I was done.  My day was truly free. That was in 1996. I remember it was a sunny day in LA and I went for a run on the beach and then meandered to Trader Joe's and went to bed early. I can't even run any more due to my crappy knees.  

Ugh.

Today I took Ellie, finally, to her optometrist. He's great. He's actually the head of Optometry for Children's Hospital Boston. He probably thinks I  am an idiot though. I took her because for the last three months, Ellie has been throwing off her glasses. Whipping them off seconds after they go on. And as I understood it, she needs her glasses to help her eyes focus due to the CP. We were there from 10am until 12:15pm. Ellie patiently looked at cards and pointed to the little stripy boxes getting more and more obscure. She endured the drops that make your eyes dilate.  At the end, Dr. Hunter told me that her vision has not changed and that the power of her lenses need not change either. It came down to three explanations:

1. the fit was too tight

2. her ability to focus has gotten better so she doesn't need them like she did

3.  she's getting attitude.  

On our way out we stopped to visit the guy who sells the frames and he gave her glasses a work up. Fixed the little flaps that sit on the top of her nose, widened the side bits so that they didn't sit as tight, tightened and glued down the screws that hold in the lenses. He was great and so patient. Ellie was really tired at this point but has not thrown off her glasses since. So it was the fit. Dah!  Dave and Ellie and I all have glasses now but we are all new at this. I am glad it was just the fit and we will check that first next time. Does this mean her head grew ? I hope so.

Development. 

Where are we?  I don't know anymore. There is no marker no road map. She seems to be coming along. But lately I have had the misfortune of moms from that other world, where your kid comes out at 40 weeks and sits at x number of months and walks around a year, and eats and talks, etc. make comments to me about how surprising it is to have such adult like conversations with their six year old. They always, end these musings with a "ya know?" And I just say "mmm".  Ah, NO I so don't know. But what can you say? It's great to see their evolving relationship the awe that comes with these comments. I don't want to spoil it for them by making it about something else. So I sort of just agree. "Ya, that's amazing."  It is amazing, but in truth I have no idea what that is like. 

Ellie, in my warped and tired brain, is finally, officially six. Her due date was Feb 4, so there is no clinging to five any more. She's six and not having adult-like conversations with me.  And recently she has gone back to reading some of the books she did two or three years ago. What is up with that?  I feel anxious about this and don't know how to make sense of it. I don't know other kids that closely to know. My sister's kid, who will be 6 in March is doing complex craft projects, using a microscope and wanting me to teach her oil painting. 

There are benefits I can get through the Massachusetts Department of Mental Retardation. Yep they actually call it that. DMR. Nice huh. Progressive. But they give you money for stuff, like augmentative communication devises, etc. But to get those benefits you basically have to declare your kid is MR. MR. Mentally Retarded. Yep they still call it that. 

I haven't been able to even call them. Several people have given me their number. I haven't done it. What is MR anyway? Is anyone really MR? I worked with juvenile delinquents who had IQs of 70 - which was considered MR. But what I found of them is that you can do a lot with that. And Ellie. Ellie, she used to be able to do things that kids her age couldn't, like know her alphabet at age 2 and all her colors and shapes. But now, those same kids are having "adult-like" conversations with their mothers and we are reading books from a few years ago. 

I am not surprised. Not really. But seeing the gap widen - and it was probably always this wide or wider - just harder to see - is difficult. I am not in denial either. I want to see Ellie as she is. But what I don't want to do is label her something that fixes her in space and time and arrests her development. I think labels are THAT strong. I want to keep the bar high on her and keep hope and believe she will move forward at her pace and her time. I really don't want to label her anything. It's so final and I don't want others to label her either. I can sense a low bar being set for her miles away. The dismissal of possibilities stinks like a poppy diaper filling up a room. I can't stand for that. So it's not that I don't notice these differences, but I just can't live in them. They are only helpful in giving me ideas about things to do with Ellie to teach her about the world and maybe create a new neuro pathway via experience.

Today, after reading Jacqui's post, I showed Ellie what a letter was and where the stamp went. We will have to do that again to make it stick. I need to bring the world to her that a typical 6 year old could access though I am not sure of all that is. We recently started a ballet class that was inspired by Ellie. She looks really cute in her pink leotard and ballet shoes. Pictures soon to come. She has navigated that new setting beautifully and it's part of the bring the world to her paradigm. 

Cisipride.

Ellie is still off it and none the worse. I have to say I have really noticed the difference. When I am in the market I can consider bringing home grapefruits without shuddering. I can give her herbal teas without wondering and worrying. And having one less med to give her four less times a day is a huge thing.  Sometimes its the small things.

Another new thing she has been doing, spontaneously, versus being coaxed, is signing I love you. The sign for I love you is tough for Ellie. All the open handed signs are and in this one you have to keep your middle two fingers down and the other three up. It takes her about thirty seconds to make it using two hands. And that's a long time in communicating and when you are six. Yesterday, Ellie signed it to me when I was pumping gas and tapping on the window to amuse her while I did so. Moments like that sustain me. They really do. It was like since Ellie was born. It would be a look she would give me, or a nuzzle, or just a sense that she would emit into the ethers. The message is always, "It's going to be ok mama." 

I am not sure what ok is going to look like, but I trust Ellie.

Time for Toilet Training

I hate making equipment orders ever since a very junior PT in 2003 ordered a adaptive chair and a stander that were way too big for Ellie and having it take 6 months and lots of phone calls and waiting on hold to correct it, I am wary of making equipment orders. If you screw it up you are simply screwed. And it's Ellie who misses out. So I have been delaying ordering her a potty seat. And I know my delay has probably been as long as it would have taken to correct a bad order. Bad mama!

Ellie can't sit very well on her own so I need something that will hold her up while I help her clean up so she doesn't fall. I like the idea of a low to the ground stand alone seat because I remember sitting on the edge of the adult toilet as a 2 year old being petrified to fall off. Yes. I actually have many memories that far back. I also like the idea of her having her own separate seat from a germaphobe perspective.  Lastly, I like the low to the ground seat because she can practice sitting down on it and standing up from it. An Ellie size seat might feel more fun like a toy versus any thing that is threatening.

Any suggestions? What has worked for your child in this matter?

Any thoughts you want to share will be MUCH appreciated! I need to get off the fence and get this going. It's time. Ellie's ready and I have to get ready too. Easier said than done. Not sure why I am dreading this but I am.

Ellie Meets Santa

The order of the pictures is a bit off but the very last one is when Ellie first sat on Santa's lap. She met up with Santa at her school's holiday jubilee this December. She wasn't too sure about her dress until Dada saw her in it and said, "Oh Ellie, you must be one of Santa's helpers in that dress!" After which the dress was perfect!

She was in awe to say the least, when she finally got to meet Santa. After she had said her initial hello which consisted of her taking in Santa for a good thirty seconds. She immediately finger spelled S-A-N-T-A and Santa, being the awesome guy he is, knows sign language and was properly impressed and Ellie equally as delighted. You can see Ellie making an A and an N in one of the pics. You can also see her gluing decorations on a stocking and receiving a gift from Santa.

It was a great day. The best part of course being S-A-N-T-A!

Nightly Foot Soak and Sharing a Laugh with Mama

Sunshine

Will walk for Hugs

Happy New Year!

Wishing you all a GREAT 2009! 

Thanks to everyone for all the useful links, advice, and supportive comments in 2008. 

In search of a recessed key keyboard

Hi everyone,

Hope you all are having a nice holiday season. Dave has been home since Christmas and will be until New Years so we have all  been together, just the three of us, for a week and it's been heaven. Dave is so great with Ellie and together we get so much done for her. So much to tell you all, especially about Bean and Ooee but that's for the next post with pictures.

Today I just wanted to pass on this resource: Teaching Learners with Multiple Special Needs

It's a great blog written by a teacher of multiply disabled kids.

Lastly, we are looking for a recessed key, key board or key board adapter for Ellie. One that would allow her to use one of our computers. We need some sort of grid that goes over the keys so that Ellie can poke her thumb down into them so that she can isolate different keys. We would like to be able to hook it out to one of our lap tops so she can use them better. Right now she has a huge amount of trouble isolating the keys.

If anyone knows of anything like that, please let me know. Thanks!

Musings, Solstice, and Ice

Ellie has been really tired the last two days. She has been fighting a cold and it has been freezing here in New England. Low pressure days and snow and ice hugging the walls of the house. The wood stove keeps it all at bay but the cold creeps into the corners ready to pounce and the low pressure is keeping our energy low. 

Winter Solstice. Shortest day of the year and the sun god seems to be fighting the moon goddess by being glorious and glaring off the snow making the most of his truncated day.

I am tired.  Tired after a fight. Things are somewhat resolved with Ellie's school. I will go in after the new year and sit in for the week and make sure it's a good new plan.  I will never again trust the trusted so well as to leave Ellie in a new situation without sitting in and checking once, and twice and again and so on.  Two new classrooms instead of one. One new teacher and one old to share the split level needs of my aware, eager to learn child who happens to be quadriplegic and whose spine is always in danger of contortion. Positioning is important. 

But she's tired my little one. She's growing. She's off her Cisipride. We ran out, the manufacturer took it's time and then when we got it 2 days ago we asked ourselves if we should put her back on. Ellie's GI doc told me of a new study about it that showed Cisipride is linked (in rare cases of course) to increased seizures. Great. What if it was the Cisipride that brought on the seizures in the first place? What if she goes off it and the seizures go away? What if we can get her off the seizure med that saps her energy? What if? 

Ellie does have a cold and cough. What to do? Put her back on it and see if the cough goes away? Keep her off it and trust her cold is the cause of her cough, the same cough we all have. She hasn't had a temp so no aspiration -right? Her nurse listened to her lungs today and confirmed her cough is all in her throat. These are the type of considerations I face - every day. Her life is precious to me. My experience dealing with the medical issues she has is always a weighing of short term gains against long term consequences.  My experience as a mother is all highs and lows and fear and wonder and sadness about what is not and thankfulness and joy about what is. Ease seems to be the missing part of the potion, testing my ability to be happy and carry on.  I wonder if the moon goddess knows anything of that and is trying to provide a time to rest and reflect with her constant night?

No Safe Place

Since Ellie left the preschool at her school and "moved up" things have been off, slipping. I am disappointed. All this talk about moving her up to work with kids that are closer to where she is at cognitively was not realistic nor has it come to pass in the ways promised. The programming in the classroom is so much less which equates to a lot of down time for Ellie. There are just less activities, less variety, less attention for all of them. And her physical needs, which are substantial, are NOT being met. The teacher and the two aids in the classroom are great people and all love Ellie, there's just not enough happening. All the stuff Ellie was doing has not progressed forward in any way except in Oral Motor where things are rockin. But classroom time has too much down time. Ellie is a nerd - she needs more academics, more activities, more learning.

Why? Why? Why? Why couldn't she have stayed in her old classroom for another year? I know she just turned 6 in November, but technically she would not be 6 until February 2009 had she not been born 3 months early.  Why? What did we do wrong? What didn't we do right? I am upset.

Yesterday Dave came home and told me that Ellie was in a stander with the tray in a vertical position so close to her face that she could barely turn her head. I was livid.

What is up with that? How dare anyone do that to Ellie?! If they were trying to get her to look up the better way would have been to use a book or sing a song or get her attention another way. It's dangerous. What if she sneezes and smashes her head against the tray and tweaks her spine? What if her muscles get tight and that tweaks her spine? Some times in the new setting I feel like she is being treated like she has less going on in her brain than she does. There is an old school quality to it like stories I have heard of things happening to the disabled when they were labeled less pleasant things. It doesn't feel good that Ellie being in a position like that is ok to all those looking on and who put her in it. It doesn't feel safe.

I feel guilty. I was working, teaching, trying to be a consultant again and Ellie has been bored and in pain from no one regularly checking and giving her a break from her afo's. We did have a team meeting to address these things in October. But it some of the issues I have now are the same ones. That is frustrating. 

Ellie has taken to folding over forward when she is in her chair. She NEVER does this at home. It's a bad sign. They think she does it because she is cold. She NEVER does that when we are outside with her in her chair when she is with us. I think she is bending forward because she is either try to get someone to notice to take her AFO's off and / or there is nothing to see -she's BORED. She is also sleepy all the time at school, but the minute she gets in the car and we start doing her songs and video she perks right up. Ellie's modus operandi from day one when she is bored has always been to check out via sleep. She is doing that at school. Lately too in the mornings she doesn't want to leave my lap, Dave has to literally tear her away. She used to love school.

Gone for 30 Seconds

Ellie had a 30 second seizure today at school. 

30 seconds. 

I will take it over the last couple that have lasted for nearly an hour and only came under control after multiple doses of anticonvulsants.

30 seconds. Her lip was twitching and she was staring out into space, non responsive, and then she slept for 30 minutes.

Sigh. She has been fighting a cold. She did not have a fever. She has gained about 3 pounds and a few inches in height. We also started doing cranial sacral therapy again which has helped her tremendously in the past and is sure to get the CSF flowing and bathing her brain optimally. 

I went down to the school after I heard. She seemed tired but fine. When it was time to go to computer class she nearly jumped out of my arms, all four limbs in full extension she was so excited. That's a good sign. She was able to show her teachers how she is able to add and subtract. She wanted to sign all the letters to that wonderful song "A, You're Adorable" on the ride home -which is what we do every ride home. 

She was gone for 30 seconds and back again. I'm glad it was a short trip this time but sad she had to go at all. I am perplexed. I am not wanting to go and have a level drawn because she just had blood taken 10 days ago and because she hates that and because I hate her being on seizure meds. She's just not as bright on them as off. And it was 30 seconds. If all her seizures were like that I wouldn't medicate her at all and there is an argument out there that her seizures might have become more intense because I medicated her in the first place. Her initial seizures lasted 30 seconds followed by 30-40 minute post-ictal naps. The problem was she was having a few in a row around naps and upon waking, your typical between a rock and a hard place situation.

I am on a cleaning binge now. I clean when I am upset. It's a little more productive than losing it or crying. I save the crying part for quiet moments when I'm alone. I do some of my best thinking while tidying. What to do? Never a dull moment. 

Picture Description: Ellie wearing the BEAUTIFUl sweater that Maureen knitted for her on her 5th birthday. It fits perfectly now and is oh so warm. Thanks again Maureen!

Just a little green, like the colors when the spring is born

I think I'm a freak.

Ellie has a cold and a runny nose but even with that is sleeping pretty well. Of course now that I write this the mokas are going to come all the way from Jacqui's house in Australia to mine to mess that up. And maybe I don't mind so much. She was up last night, but for the past month she has been sleeping through most nights. 

That's pretty good right, after 6 years of interrupted sleep? 

But...

It freaks me out when she sleeps so well. I wake up in a cold sweat thinking she has died. I go in her room and in my head see her cold and blue as my heart goes tachycardic.  It's not a conscious thing. I want her to sleep - god do I ever want her to sleep through the night every night for the rest of her life and mine with all my tired sleep deprived heart. The sleep of children is precious, warm and peaceful as their brain develops and their bodies grow and they dream their dreams. And Ellie has taken a stretch over the last month - a couple of centimeters that make a difference in how her clothes fit. And she is cognitively coming along great due to all this sleep. 

But, when it comes to sleep, I can't help but remember other kids I have read about that didn't wake after a nap or a night and my nervous system can't forget the first two years of Ellie's life where she slept beside us in her Arms Reach. When, if I heard her breathing catch, she was choking on secretions, or her body was so relaxed in sleep her tongue would slide back and block her airway and then later after she turned four, seizure. Always around sleep all the badness, and scariness of death, reaching out to snatch her away from us, me and Dave swatting it back with a small blue bulb suction or diastat and 911 or repositioning and a gentle pound on the back to stop the choking and help her produce a cough. Constant visits to the ER. Fear of her dying. 

Maybe that's why it's hard to trust this sleep through the night. I don't trust it. It scares the crap out of me. I thought about putting her back in the room with us, but she is such a light sleeper and we are tossers and turners and snorers who will wake her up. Which is why she has been in her own room, own bed for a few years now, tyranny of the monitor and all it's sounds or no.

Still, there are many times when I hear her stuffy nosed breathing and go in and make sure. Or the nights when I don't hear anything on the monitor, nights when she is not stuffed up her breathing is so still it's hard to see her chest rise and fall. I gently put my hand on hers, fearing hers will be cold, and of course it's not, it's warm, the way kids are little furnaces when they sleep. Then I just wait till I am able to hear her catch a breath feeling self conscious that is she wakes and catches me listening so close it will disturb her. Once I do hear her breathing I go back to bed with this heavy feeling of guilt like I should just sit in the chair by her bed for the night, just in case. 

I think I have post-traumatic stress syndrome. 

Will I ever trust sleep again? 

Lots to be grateful for

 Picture description: Ellie, with pigtails flying high, signing butterfly, which she makes fly over her head. Like I said, so much to be grateful for.  Happy Thanksgiving Blogosphere!

Yesterday a child came out to wonder...

Ellie turned 6 yesterday.

I can't believe that much time has gone by since that rainy, scary Saturday when she was born in 2002. She has come so far and I have learned so much about love. My heart always get choked up on her birthday because images of her birth and that day are still so very vivid in my mind. Like flashbacks they were popping up throughout the day as I watched my daughter, my beautiful Ellie as she is today I couldn't help but see the tiny blue body lifted out of me 3 months too soon. Dave pacing outside the door of my recovery room tears streaming, and frantic as I massaged my legs trying to get the feeling to come back into them quicker so I could go see her as he raved outside the door into the abyss as our lives changed forever. Not feeling the pain of the emergency C-section and the adrenalin to get to my baby.

And that first moment seeing her in the incubator with 3 wires coming out of her belly button, breathing tube down, IV's in each leg, raw fragile skin, baby white hair on her perfect round head. The on the spot breakdown, feeling that I had failed her horribly. Pain. She was in pain. I could feel it. My poor baby thrown into the world too soon, too fast without air. I don't think I will ever really get over that. I think that's just the way it is. It servers as a dark contrast to all the good that has gone after. A reminder to appreciate everything and anything that is good in the moment and know that everything she accomplishes is against the odds and a blessing.

We choose to celebrate her birthday each year with gusto. Celebrate her life and the fact that she is still here with us. We like to have a party for all her friends, teachers, therapists, nurses and care givers, family, and other parents from whom we have learned so much, to say thank you. Without all of these wonderful people we would be lost.

Ellie, who started with so many challenges has achieved so much and there is no stopping her. She reads, she dances, she sings, she signs, she laughs and tickles, and does subtraction and addition, and loves and loves some more. I am so lucky to have her in my life as she brings me so much joy. This birthday I was really struck by how many people love Ellie and us and who are in our lives supporting us and taking us along. We have our village and it's a great one. We are truly blessed and grateful.

Too all of you who called and could not be there yesterday, we missed you and love you and had the vanilla cake with the vanilla icing, and it wasn't the same without you. ;-) Scroll down and see the montage for more pictures of the day.

Special thank you to Carla, the lovely lady by the key board in the picture above, who volunteers every day at Ellie's school to conduct music classes for the children. Thank you for coming to Ellie's birthday party and playing all her favorite songs. Ellie LOVES music more than anything in the world and your being there to play the songs that she knows and loves made a huge difference. Seeing all her classmates and their siblings dancing and rocking out together was pure joy and could not have happened without you. Thank you doesn't even cover it!

Thank you too to Bonnie whose help in the morning and during the party allowed us to keep our sanity and get all ready and for doing Ellie's hair. The french braids were perfect with the flower crown. Ellie looked lovely. Thanks for all your help and love you give Ellie on a regular basis (and for "hiding guy" and new and improved Bear Hunt both of which she won't put down!)  

Thank you as well to Liz and Marla for all the balloons and signing and "water bottle smiley" and keeping more than one child from near immanent self destruction with all our open shelving as well as all the love you give Ellie regularly. I still can't believe you found a new "raggedy" which is a feat beyond OTT and Ellie has not put her down since. Between Raggedy, "hiding guy" and new and improved Bear Hunt (the last two thanks to Bonnie) we had trouble getting Ellie to stop playing and go to sleep last night! 

Thanks to everyone who attended and for all the gifts for Ellie. It was great to share with you this happy day.  

Happy 6th Birthday Ellie-luv!!!!

Photo and video editing at www.OneTrueMedia.com

Get out and Vote!

I am away again in the great state of Wisconsin. It's very dry here as the bad lands are not far away and all moisture gets sucked into them like a big burning dry vortex. I will be here all week. I was worried about how to vote. I called my town hall and they said come on down, but of course, not in as friendly a tone. Did I mention I live in Eastern Massachusetts where people are all business all the time? They don't feel the need for friendliness and niceness is something that was lost on the Mayflower. Maybe they are still feeling the repressive effects of the Puritans?

It took me all of 12 minutes to vote (see all that time saved by foregoing all the niceties). 12 minutes. In and out. I had to draw a line between two boxes with a special felt tipped pen. There were five other people voting at the same time and a steady stream of people coming and going for the same purpose. The atmosphere was brisk and efficient - a thing I do love about doing business in New England. There is none of the languid carelessness found in LA. 

I handed my ballot to the poker faced lady at the counter and said, "No hanging chads with that!" 

She brightened and said, "No they've made it a lot easier this year." 

"Thanks!" I said leaving. It never fails to make a person feel good by noticing their work. 

I think I just may have to vote early every election. No waiting, no lines, no stress - just exercising my constitutional privilege.  

Go exercise yours! It's important. 

If you suspect that things are not as they seem and your vote is in jeopardy - report the town clerk who may be violating the constitution and all that our nation was built on. CNN has a hotline you can find on their site. 

I want my candidate to win but even more than that I want everyones' vote to be counted. I want our system to not be as broken as it is. 

Hard to leave

I am leaving today for Minneapolis and will be gone until Sunday. I will be doing some work for a client as well as meeting some old friends. In the planning stage I was excited to go. But now, as I wait for the cab to take me to the airport I am sad. I always feel this way when it comes to travelling alone. At first excited for the adventure and then upon the point of departure, really sad. They are very hard to leave, Ellie and Dave.

I tried to tell Ellie about it this morning but it just didn't compute. Time is a weird thing to communicate about in general then try to do it with a 5 year old. She didn't want to leave me when Dave came to take her to the car and I feel really, really bad that when she get's home I won't be there. When she wants to snuggle in to go asleep on my lap like she does most nights, I won't be there. I am worried about Dave too. What if she is up every night like she has been for the last week? What if he is so tired he falls as he is carrying her down the stairs in the morning? What if she gets sick? She was a little not herself yesterday, and here I am leaving.

I guess it's a good problem to have, two people that it tears your heart out to leave. There's my cab. Can I not go? Just say never mind? Nope. Sigh.

*picture is of Ellie sitting independently on the couch playing with her farm toy in her jammies.

It Doesn't Take a Saint

I was having lunch with a colleague of mine. We started talking about our kids. I mentioned that Ellie was doing really well in school and that we were really happy about it because she has come so far. They agreed and nodded and then said, "You're a saint."

I said, "No, NO! Definitely not. Ellie's a great kid, probably a lot easier to deal with than a lot of kids."

But ya know, I wish I had said something more to the point like, 

"Do you really think you have to be a saint to love your own child if they happen to be disabled?"

And then, in an ideal world, I would have quietly waited for their answer. I am sorry I didn't have it together to say that instead of babbling like I did.

Because isn't that what that comment means? You're a saint because only a saint could love someone who is imperfect or drools or is just basically in that other category most people don't like to think about. Like you have to be Mother Theresa or something (no offense to Mother T.) but jeez!

I remember one of the other mom bloggers writing about that. But this is the first time it was ever said to me. It just seemed so out of context. One minute we were talking about our kids, the next I was defending my child's loveableness.

So for the record - it doesn't take a saint to love Ellie. Not even close.