Casting for Hope

Casting
Today Ellie got her first set of casts to commence the process of keeping her feet at neutral. I gave her some Motrin to try to stay ahead of any discomfort from having her feet twisted and bound into a permanent stretch. B came with us, which was great because it really took two people, one to hold Ellie’s leg to keep it in position and one to distract her. This worked very well. If I can guess what it felt like from Ellie’s perspective, she got to have Mama’s 100% attention and her favorite page of her favorite book read to her over and over again. Each word spelled out as she pointed to the letters. “W. H. O. apostrophe S. Who’s, meaning who is, That, T. H. A. T.” and so on. She was in heaven.

While the Mama show played Dr. Webster moved Ellie’s foot into position as R. wrapped the casting material around her foot up to her knee. During this B held Ellie’s leg. Ellie was mostly concerned with reading her books. She would look down when I would and when I would look back she would be smiling up at me or telling me to get on with the reading. After all, she was awake, right? Awake equal play at all moments. No down time from play is ever needed. I obliged.

The casts themselves are not the monstrosities I thought they would be. I had many casts as a kid for clubfeet and those casts were made of plaster and HEAVY. These casts were made of fiberglass and relatively light. The hardest part of the application was the cutting out of the toe, which made me nervous but ended with 10 toes intact. Her toes do look a little squished but that is because her feet are not at neutral this time around. The serial casting is such that it is supposed to minimize the pain. There should be no pain for Ellie after the first 24 hours. I will watch this closely.

For the rest of the day Ellie seemed to be unimpressed with her “fancy boots”. They are purple and have not impeded her movement. She did reach down at them while I was changing her diaper as if to say what’s up with that?

Parental Angst
Other parents who may be lurking out there, answer me this: Is Parenthood a complete set up to make you feel, more often then you ever have before, like you don’t know what the hell you are doing?”

The Conundrum
The conundrum is that you can stretch muscles yes – but you can’t stretch tendons. Stretching tendons only weakens them. Have you ever noticed that when you sprain your ankle that you tend to twist it more than you used to? That is because you have pulled and stretched the tendon leaving it forever that little bit weaker. The casting we are doing does not discriminate. We are stretching tendons as well as the muscles. If you have read some of my other posts you might recognize this situation as the classic picking of the lesser evil. On the one hand we do PT and stretches as we have been and Ellie’s feet become more and more clubbed ensuring she will never walk. And on the other hand we can inject her muscles with scary substances then cast and stretch out her tendons and muscles hoping that the integrity of her foot and ankle will allow her to bear weight on her legs and eventually walk or ambulate.

There is a path that I had hoped would have allowed me to avoid the lesser evil scenario. This road includes doing two hours of therapy on Ellie daily to increase the strength of her diaphragm. The technique we use is called the Scotson technique and you can read about it by clicking here. We have been doing this therapy with Ellie for over 2 years. It has been very successful at increasing her ability to breath and assimilate oxygen into her blood. It has also, through the use of air splints, relieved the spasticity in her hands – especially her left hand that was starting to curl over onto itself. If we miss a week of this therapy I see that hand start to get tight. There are many ways that this therapy is helping Ellie.

As promised by Linda Scotson and Co., this therapy builds up the diaphragm using gentle pressures in a rhythmic way. In doing so it the diaphragm is able to work harder signaling the body to build more blood and in turn build more capillaries. The entire circulatory system is improved. The theory postulates that by doing this, any plasticity that can be realized in the damage brain will be. I think this logic still holds very well. But when it came to Ellie’s ankles we are running out of time. The therapy works from the diaphragm out, the feet are the last to be affected. Contractures become permanent and The Scotson technique, while highly effective, takes time. I am have the need to let gravity help Ellie’s bones to grow properly. The regime we stick to includes a great deal of tummy time. This has saved Ellie’s back from curvature and her hips and pelvis from deformity that can happen when you place a body in a position it is not ready to support like sitting or standing. My approach to weight bearing is more homeopathic meaning less is more. I want to have Ellie be able to stand in her stander for maybe 5 to 10 minutes per day.

The medical paradigm and approach to “treatment” for CP is horrifyingly not one of healing but one of management. Meaning, let’s make sure we can still bend this kid so we can get them in their wheelchair. It was horrible to first realize that many medical interventions designed to “treat” the many conditions generalized as cerebral palsy were mainly created to ensure management of the patient by the caretaker not to actually heal the patient. This is why we agonize over most decisions we make for Ellie when it comes to subjecting her to medical interventions.

So here I am casting for hope. Hope that Ellie will one day walk. Hope that Botox and casting will stop the contractures. Hope that all of this will ease any pain that she may be having due to the spasticity. Hope. For all my education and talents, hope is what I have at the end of the day. Medicine does not have all the answers, though I really wish it did. I wish someone did, it would make things so much easier. But when it comes to the brain and how it really works – no one knows for sure. I am left with hope and my eyes, which are still watching the baby as they have been since day 1 of life. Watch the child because she will lead the way.

Luxury for all?

Have we become a society of foodies and product people? Are luxury goods available on a scale unheard of in the past? Do the non-rich really have access to the same things mega-rich people do? Good food, good wine, goods made to pamper the body, therapies designed to mellow the mind, and the usual necessities that proliferate our culture – coffee and chocolate and cotton. Does the status of our credit card Nation attest to the fact that we all want the finer things and are often too willing to live beyond our means to get them? Is it that this generation, unlike others in the past, does not look to the future because of an unspoken assumption that there is none?

Someone once said to me that every generation conceives of it’s problems as worse than the one before. The depression era babies went from poverty straight into WWII. The baby boomers started out in a consciousness of abundance, possibly the knee jerk reaction of their parents as a way to deal with posttraumatic stress – give the kid everything. The advertisements in the 50’s would show a running tap and an announcer would say in a booming voice, “Go ahead, run the tap! There is enough water to run it forever!” It was as if this generation collectively decided, “The world is our oyster and we will eat and eat and eat.”

Then these pampered, abundance loving, consumer boomers dealt with Vietnam and the cold war. Gen X and Y are dealing with genocides on such mass scale. It seems that the global horror felt at the holocaust is not present for more recent genocides. The world’s muted response to Tibet, Rwanda, and the Kurds and others is perplexing in an intellectual sense and horrifying in an empathic one. Gen X and Y are living in a world where genocide is so rampant that mass protest of them does not occur.

The old symbols of security have also crumbled with many Enrons and Halliburtons ensuring the end of the job. No one in my generation in his or her right mind truly believes in the pension myth. The very thought of a company that will provide for us in our old age is laughable. I have yet to meet another Gen X’er that believes they will ever see one cent from Social Security in their old age. It’s not like we bemoan this. We just live with it the same as we live with our understanding that the earth is round and acid rain falls on the Adirondacks.

So do we bargain our future for a little momentary comfort? Does my Peet’s latte distract me from the real fear that North Korea may nuclear bomb the crap out of us tomorrow?

In parallel to the over spending masses, the rich are getting richer and the gap between rich and poor wider and wider. NPR was having a discussion about this that touched upon the expectations the rich have of aging. The whole idea of looking your best was put into a whole new plastic perspective. The question, it seems has become, not if you will elect for plastic surgery, but when you will NEED it - that is if you care about keeping up your status in society as a worthwhile human being. After listening to this show I realized that the gulf between the wealthiest elite and me is really, really HUGE. The gulf I saw spans beyond what they own and I don’t all the way into a difference in values.

So do we really have what the truly wealthy have? I think, probably not. I know of a few truly wealthy people. They go to places I have never heard of and wear watches that make Rolex look shabby. But PR firms and marketers bank on their assumption that I don't know there is a level of wealth beyond Rolex. And you know what? They are really onto something. They market Luxury. In Europe they are way more obtuse about it. They actually call goods Luxury soap or Luxury chocolate. The word Luxury itself gets attached as if it is some sort of proof of quality; a ticket to a parallel universe where there is no war or poverty all for a $3.50 cup of chai.

Did I mention one of my undergraduate degrees was in philosophy? I can’t help thinking about all this when Christmas is nearly upon us. For me that has always been a time when I have come face to face with the fact that instead of buying my ticket into the safe oblivion of the parallel universe, I should have been saving that money for stocking stuffers.

3BT All About Ellie

1. She went swimming for the first time last week and loved it. BIG THANK YOU to Tiffany and Jason for making this happen. Ellie gets cold very quickly so swimming in the ocean in New England is not possible and because of her g-tube ponds and their amoebic denizens are prohibited so a therapy pool is our best/only option. She stayed in for 25 minutes playing peek-a-boo and "chase" Tiffany. She also just hung out and felt herself light and floating. Ahhhhh!

2. Ellie has been coming back from her oral aversion redux. She is eating about half of her meal for Dave and I on a regular basis. AND she ate a little for me on our own with the help of baby Einstein and Brown Bear, Brown Bear. We have to keep our eye on the prize and know that we will get back to our Ellie who was eating 2 cups of porridge in one sitting in under 20 minutes. Here she is snuggled up with Dada watching the Mama show.

3. The fact that my husband is the best father a little girl could ask for.

4. The moment when Dave doesn't kill me for putting him on the web in his "jammies" in desperate need of a haircut. That is love!

National Novel Writing Month = Blogaholic Binge Month!

If you haven't heard, November is National Novel Writing Month. Alert the press and check it out at http://www.nanowrimo.org !

I am signed up. How hard can it be to write 50,000 words in one month? In all my free time between 3am and 5am when I am lying there awake because of 4 years of Ellie’s conditioning I could be so much more productive. It’s quiet then, no one will interrupt me, ahem, meaning Dave! Why is it that I find it impossible to tune out his voice? He is so much better at tuning me out than I am him – it’s so not fair. But I am working on it. All good married people need to be able to control their psychic space, right!?

Anyway, this is the perfect opportunity to really get my creative sensibilities into high gear. It’ll be like boot camp for out of shape writers. It’s great for someone like me who prefers to write in fragments versus full sentences because they are truly NOT concerned with quality but quantity. Hooray ! I have found my people.

I have always wanted to write a novel and here is my chance. The title of my novel is, Things You Can’t Say To My Face. If you want to be one of my “writing buddies” let me know and I will add you to my list.

I heard about this amazing opportunity to procrastinate getting on with my real work through Laid Off Dad. He is one of the best writers on the web. He routinely uses words like “leitmotif” and “oeuvre” that I am forced to look up because of my startlingly poor French vocabulary. While it's not clear if he is going to try to crank out 50,000 French root words in November, he does plan to participate in NaBloWriMo - National Blog Writing Month, “... just to see how badly I (LOD) can gum up the Interwebs with unfiltered blather”. On that count, because I am a far worse writer, I think I can way, way out blather him.

He references NaBloWriMo via Mrs. Kennedy at Fussy who is encouraging everyone to put some wind into gray November by blogging every day. For the other Blogaholics out there, have at it. Indulge in your addiction and write, write, write. Mrs. Kennedy has graciously designed some really cool write with a gun to your head logos. There is even one featuring Yoda, but it will only be available for a limited time (until George Lucas’s team of copy write lawyers raid her home, abduct her and take down Fussy dot org). So get em while you can.

Again, if you want to be my writing buddy, let me know.
Enjoy!

Three+ Beautiful Things - October 13, 2006

1. Ellie is nearly back to her old self though still a bit tired from yesterday's ordeal.
2. Ellie hugged me twice today by putting her arm around my neck! I have been trying to teach her for a few weeks how to ride "side saddle" on my hip and tell her to put her arm around my neck. She did that twice today with the sweetest smile and a great big nuzzle.
3. Ellie eating by mouth for me and Dave again for the third time in a row.
4. The amazing Fall colors that make the leafy suburban terrain so much the better. This is the most beautiful time of year to find yourself in New England.

The Bravest Little Girl

Ellie playing with Pooh after her nap.
This post is dedicated to Ellie, who is the bravest little girl in the world and has had a rough day. The past few posts I have joked about this or that and in truth, it has been somewhat of a gallows humor. This blog is supposed to be about parenting a child with disability. Sometimes I get a bit punchy before facing really tough things. Things I would not choose to face in a million lifetimes if I had my druthers. And I have been facing today for a couple of weeks. Now that we have faced it, I can write about it and maybe save another poor mother or father some trouble. It’s not that we mothers of special needs kids are not informed. It’s just that each “intervention” carries an element of unknown consequences. When we were in the NICU we learned early on that all of Neonatology involved choosing between the lesser of two evils. Today we made such a choice and have lived to tell the tale.

To tell you what happened and why we did what we did I have to make sure you know some basics about cerebral palsy. For those of you already living the dream skip to the next paragraph. All children with cerebral palsy have varying and mixed degrees of Hypertonia and Hypotonia. Hypotonia means your kid has weak muscle tone and is “floppy”. These kids might have trouble holding their head up and sitting, etc. Kids who are hypertonic are stiff and in extension (arms out, legs out) a great deal. This is called spasticity. Dystonia is when you go to do something and you go into a rapid extension. Ellie, lucky girl, is Hypotonic with an overlay of Spasticity in her legs. To compound things, the act of growing can make spasticity worse. The interesting and awful thing that happens when the brain is damaged is that it turns things unendingly ON. In Ellie’s case the Equinovarus deformity from the spasticity in her ankles is due to muscles that are constantly being flexed and pulling her foot in. Try it and see. Flex one of your major muscle groups like your calf muscles or bicep. Hold it for as long as you can. Sucks, huh? But now you have a modicum of an idea what spasticity feels like. In a growing child such a thing can deform limbs. You may have seen people with CP who have a hand that is turned down at the wrist at a seemingly impossible angle and held close to the body. That is the result of spasticity, the constant firing of neurons to the muscle which in turn pulls the bones and ligaments permanently out of place to the point where eventually there is a complete loss of function.

Ok – there are some cerebral palsy basics for you. Today we went to the Floating Hospital in Boston and had Dr. Webster perform a Botox treatment on Ellie. Botox you say?! Yes, there is actually a more noble application for Botox than making sure no one sweats at the OSCARS and Reese Witherspoon’s pretty brow is not furrowed.

Dr. Harry Webster is on his game and passionate about his kids. He did the whole thing with good pain management and a deftness that comes only to those surgeons that are truly talented. He was in Flow. Which is just where you want someone to be when he or she pumps botulism into your kid’s leg muscles.

Some days I can’t believe the details of my own life. As an expectant mother you consider things like the kind of diapers you will use, the books you will read to your kid, the food you will feed then. Anyway, I know you may not know me well but these are words of high praise for a doctor. We are not the type of people who just blindly do what the doctors tell us. We have been putting off this treatment for two years. There are some interventions like getting Ellie a Fundoplication that we have outright refused. (I really need to write about g-tubes, eating and nutrition and fundo’s).

If you are facing Botox injections with your child, I really believe that deciding when to do it you should consider two criteria. 1. Is your child ready to walk? 2. Are they at risk of permanent deformation and contractures that will ensure they never walk?

Ellie met both criteria.

A word on Pain Management:
Two years ago, among the many ‘signs’ that it was not the right time to give Ellie Botox was the fact that a doctor at another well-known hospital scheduled the treatment for her with NO pain management at all. After having seen the procedure today and my child’s reaction to it, I can tell you, providing pain management is critical. Getting Botox is very painful even when sedated. Botox is shot directly into the muscle. Ever had a tetanus shot? Multiply the pain of that by 100.

Our pain management for Ellie consisted of 3 things:
1. Emla Cream. This was put on the exact point of the injections including the shot of Versed. Like, most NICU babies Ellie has had over 200 needle sticks, so why add to that?! That said Emla only works on numbing the skin, not the muscle, which still hurts like a bear when poked with a needle. Again, think Tetanus x 100.

2. Versed. This was injected directly into Ellie’s thigh muscle and made her drowsy and is supposed to make her forget any of this ever happened. As I write that it sounds awful and if you click on the link and read the description you will think I am awful too to ever let my kid have that. I feel like some psychotic parent covering up their crimes with some designer drug. However, after seeing the Botox injections, I am glad she will forget because she would have never forgiven me otherwise.

3. Over the counter Ibuprofen the minute we got home. Dr. Webster said the injections are the hard part and once the Botox is in, it does not hurt. I wish I had Reese’s number so I could ask her directly. Does that stuff in your forehead hurt right after? And if so, for how long?

So you might be thinking, why not put her out completely under general anesthesia? Good question. Our answer is that this is counter indicated for anyone with any brain injury. When kids like Ellie go under they can be set back for weeks and possibly months in their functioning and development. It takes a long time for their brain and already weakened bodies to recover from general anesthesia. We minimize Ellie’s exposure to anesthesia as much as possible. For example, we have never had to give it to her for MRI scans of her brain. During MRI’s there can be no movement. We have been able to distract her with mirror balls and light and songs and whatever it took. For her ABR’s (brain response hearing test) we have been successful at scheduling them at naptime so she would sleep during the test. My main point is that sometimes medicine becomes dogmatic. I have a bias against younger practitioners who still think they are god but are too afraid to think outside of the box. For example, always pairing a g-tube with a fundo even if it ensures that the child will not eat by mouth. If a doctor’s answer to your question is ever, because that is the way it is always done, or any derivative thereof, find another doctor who thinks for him/her self and considers each patient a unique case.

As parents we have questioned everything and educated ourselves so we could make the best choices for this little soul that is in our care. No child deserves less. When we don’t know what something is, we educate ourselves. The only prerequisites we have are our abilities to read and think. There are a ton of resources on line (see the links in this post). We have bought many medical texts in order to catch up with the doctors and understand the choices being laid before us. We had to because our “Yes, do that” or “No don’t”, especially when Ellie was in the NICU, meant the difference between life and death for her. So we wanted to understand our choices. We found that the worst doctors don’t take into account the patient’s whole life. When they first told us about shunts I had questions about the tubing that would go into Ellie’s abdominal cavity and it’s effect on her reproductive organs. That stopped the team in their tracks.

Isn’t this a mother’s logic? I think about Ellie’s whole life from birth to death and I don’t want her choices limited because someone was not being thoughtful enough to consider all the implications. (Incidentally, this is also makes me a very formidable chess player that Dave still has yet to beat.)

We have also learned so much from other parents. In the NICU two very wonderful people who were a few months ahead of us in their journey gave us some very good advice. C and W told us to ask each question three times to three different people. Best advice ever for any parent facing a long NICU stay. We still do this. The thing is, you always get three different answers. Medicine is not an exact science that is why they say practicing medicine. Woe to any parent who does not participate in the thinking process of solving their child’s issues.

Upon climbing off my soapbox, I can tell you that Ellie is sleeping now. We will see if the Botox works. The next step is serial casting to get her feet back to neutral so she can stand on them. I know Ellie would much prefer to be able to ambulate or walk to get her toys versus having to roll a few feet, look to locate, and roll again. Ellie is a great roller but when you have to roll to get stuff you can get stuck on other things like couches and corners. Ellie wants her independence; this I am sure of.

Hopefully this path with Botox along the way will get us there. It seems the lesser of two evils. She is braver than me. I had to keep from sobbing during the entire thing. Once it was over she smiled at her Daddy and the sun shone again.

Flogging

Once again it’s almost midnight and my husband and I are still blogging. This wit fest of a post came to me as I was shutting down my computer and whisper-yelling at Dave, “We have to go to bed – now! Ellie will be up in three hours!” We have spent the evening semi apart, me at my desk in the drafty front room / office / unused but sadly expectant 7’X5’ art studio and he at the kitchen table. We run back and forth to take a look at each others latest comments that were moderated successfully into the blogosphere. We discuss WordPress templates and the merits of Biz Stone’s book, Who Let the Blogs Out? Great book but; what were his parents thinking?

We are shamefully geeky. TICK, TOCK, TICK, TOCK ROUND THE CLOCK, STILL BLOGGING AWAY. Blogging, though easy, fun and the very thing that is going to deliver us from the long, low-lit New England Winter, is, quite simply - ADDICTIVE!

Biz claims it makes you smarter and that it’s about being in the moment. I agree. Being in the moment is the essence of blogging. I wrote my master’s thesis about this being in the moment, time stopping crap and can tell you it’s called Flow. One of the main side effects of Flow is that it feels great. Your self-efficacy rises; your mind is optimally engaged. It’s a tiptoe on the fine line between stress and boredom.

However, since I began blogging I have gained a whole new perspective on Flow. Or maybe I should call it Flog or Flogging for the new phenomenon of being in the Flow whilst blogging…hmmm. You read it here first. Flogging. Ok – actually that means to whip someone… well, if the shoe fits…

Anyway, I discovered that when you are actually in the moment, time goes by way faster than if you are worrying about the future or pining for the past. It’s such a bummer. When I finally get the knack of being in the moment I run out of time to do it for long!

But is this not the essence of addiction? Time spent with the drug of choice, or your blog, is never enough. When you are not imbibing your drug of choice you are thinking about the next time you will. For example, since I started my blog I have had to stop what I was doing to capture a funny thought that will turn into some witty post and in doing so the 73 minutes, 13 seconds, and 12 nanoseconds that Ellie naps vanishes before you can say, “Publish My Post”. It’s just outright irresponsible. Instead of looking for work, honing my experience summary, responding to requests for lunch with people who could potentially hire me, I am thinking about how to make interesting and funny comments on my life. Yes, my life, which is getting more myopic by the moment.

Some humorless fascist once told me that I was my own biggest fan. Damn him, he’s right. My blog, where posts go to die, is a one-way ticket. I laugh at my own posts but I don’t know if anyone else does. So does that mean I am sitting here making up things to amuse myself? Yikes, the thought of it and implications are reverberating to the depth of my over educated psychologist psyche. If anyone out there want’s to start a 12-step program for obsessive bloggers, please, contact me immediately! Isn’t that the first step? Admitting there’s a problem?

Hello, my name is Kathyrn and I’m a Blogaholic.

Tribute to Three Beautiful Things

I love this site. It's a great idea and Clare is a generous linker!
Three beautiful things in words and pictures:
1. Dave's apple pie. mmmmmmm

2. Last tea rose to bloom before winter.

3. Ellie, holding the toy all by herself.

Ellie on eating pureed beets

I will not eat them here or there.
I will not eat them anywhere.
I will not eat them in a house.
I will not eat them with a mouse.
I do not like them here or there.
I do not like them anywhere!

Living up to your biological destiny

I have to admit in all honesty, having sex to make a baby is BORING! Boring, boring, boring. Gone is that semiconscious thought that you could get pregnant when you don’t want to. The taboo element is all but shot. There is nothing naughty anymore – it’s suddenly good and sanctioned by all religious bodies. Don’t get me wrong; it can also knock your sex life up a notch. But the pressure of trying to conceive is like having sex with a gun to your head. Ok, I know some of you are going, “Right on!”. But this is not that kind of blog.

When you are purposefully trying to make a baby there is no more sitting on fence letting God or biology decide for you. This kind of low maintenance approach to procreation results in many pregnancies. Some of these pregnancies are Happy Accidents. This is a term my painting professor Oscar Walters used to describe the phenomenon of unexpectedly creating a brilliant passage by accidentally mixing the wrong color or going slightly overboard on a transparency and voila – something superb is created. Ellie was conceived in such a way. She was conceived in love and is the best Happy Accident ever. Both of us thought to ourselves, “One time without protection will be fine. We probably couldn’t get pregnant anyway.” Both of us, even more unconsciously, wanted to create a baby. When we found out we were pregnant it was a very, very, happy day.

Now, almost 4 years later we are married, own a ramshackle house and offspring numero uno needs a sibling. We get to live out our biological purpose instead of playing the titillating game of ovulation roulette. Some new age books I read well before I ever had sex described how there is this great burst of light in each person’s aura as they make love. As husband and wife reach the climax of their lovemaking this big supernova of energy results in conception. I say, “Whoooeey!” It sucks. It’s more like, “Honey, it’s time.” Or, “Sorry Hon, it’s not time.” And better wrap it all up in the missionary position, please. To quote Monty Python, “Every sperm is sacred!” No more being handcuffed to the chandelier or thrown up against a wall in mad spontaneity. So for those of you slogging it out to fulfill your biological purpose and just want to get on with it, here are some interesting conception tips imparted upon us from various well-wishers:

1. One of our new Bostonian friends told me of her great Irish uncle, who, after coitus, would lift his wife’s legs up and give her a “bit of a sheeaaake”. No lie – 13 kids in that family.

2. Know when you ovulate. It’s different for every woman. The first way to get a clue about this is to know what Day One of your cycle is. Day one is the day when you get a full period. Start counting from there. The drips and drabs that may appear the day before do not count.

3. This one might possibly be my favorite and is from my doctor. If you both climax at the same time it seems that the cervix, in it’s ecstasy, acts like a big Hoover vacuum and sucks up all the sperm.

4. Doc also warned not to use KY, Astroglide, Surgilube or anything else. Even though the bottles of said lubricants may claim no spermacide, all are antibacterial and more effective for birth control than the sponge, killing up to 70% of the little guys. He then told me what the ultimate lubrication was. Luckily it’s free and available everywhere.

5. Today a friend of mine, an excellent RN, filled me in on some interesting gender differences. It seems that girl sperm, meaning those carrying the *X chromosome, plan their journey. They hang out a while and get to know the landscape. They are in no hurry, they are there for the long haul and can live up to 5 days. Male sperm (Y chromosome carriers) are in a race to the death. They only live up to 24 hours so it’s a mad dash to the finish. Not so surprising, eh? So if you want to make a girl baby, have sex a few days before you ovulate but not the day of. If you want a boy, figure out exactly what day you ovulate and go, go, go on that day.

6. If you get pregnant and you are over 35 it is called a Geriatric Pregnancy. I would bet money it was a man who decided to call it that. He was probably making up for the fact that male sperm are

wusses.

Ok – there you have it. Of course I am not an expert and views expressed in this post are in no way shape or form representative of any medical body. And lastly, for those of you reading this and in doing so have come up with a million ways to slag Dave (you know who you are) go easy on him. He needs to keep his energy up. ;-)

*If you’ve no idea what I am talking about, please do not procreate. There are enough Dumb Asses in the world. For an example see the 14th bullet in the About Me post.

Blog Envy or Thank You Lissylou!

Thank you, thank you Lissylou for saving me from the void! Ok - it's official. I have had my first comment from a person I did not coerce, at least not directly. My sweet husband was the first to comment, but only because I threatened the usual things a wife threatens her husband with when she wants him to do something for her. You know - castration, over starching the shirts, getting a boy toy. And my dear friend commented because I asked him to. Ok, so I was a little desperate as you can see from my Pitter Patter post.

Lissylou you are proof that Ryn Tales is not the black hole of the web as I had feared. Though it may still be like Pluto – not quite a real planet. Ryn Tales - not quite a real blog. (Hey, does this mean I have blog envy?)

Seriously, you made my day! Thanks for the words of encouragement.

P.S. I was joking about threatening my husband. I have no idea how to starch a shirt.

P.S.S. However, if any reader would like to comment on the process I would be better for the knowing. It couldn't hurt. You never know when the angry ghost of some fictional TV character like June Cleaver might try to invade your body just to get in some cathartic domestic tasks for old times sake.

Dancing with Death

Tonight I had a discussion about love and fear. It was illuminating because fear as it turns out is multifaceted and not just something to be reckoned with or avoided at all costs. As it turns out fear is something I have had a great deal of experience with over the last 4 years. Fear is something that can go hand in hand with love.

When Ellie was born I learned to dance with Death. When I was pregnant with Ellie I knew within the first month of the pregnancy that she, was a she. I knew her name was Ellie and that she would need braces on her legs. I knew this because I was dead tired the whole first trimester (while my body was busily doubling my blood volume) and one day after work I was lying down to take a nap and as I was falling asleep, I put my hand over my belly and asked, "Who are you?" And in a flash I saw this girl in a plaid blue and green skirt, white shirt and blue sweater with braces on her legs and she looked a lot like Dave and she told me her name was Ellie. So that was that. From that point on I would say, "Ok Ellie, we are going to take walk now, or go to work." I had this running conversation with her.

Then at 27 weeks and 5 days gestation she was born in a torrent of blood and chaos and zero oxygen. It was as if my normally developing baby and what my doctor just 4 days before had called a "boringly healthy pregnancy" had been in a train wreck. Her APGARS were 0,5, 6. On day 2 of life she had a brain bleed in her ventricles classified as a grade 3. The doctors told us she would not make it through the next hour, then the night, then the day, then the week, then the month. They told us she would be a vegetable if she lived at all.

So instead of having a third trimester that would lead to birth and breastfeeding and carrying her around and eventually seeing her run and play I got to dance with Death. I would sit by her incubator and talk to her silently, because even the softest noises would make the oxygen saturation in her blood plummet. Any NICU mom's out there know what monitors I am talking about. But I would sit there and carry on my silent conversation with her. Death would be sitting right next to me. I don't know what it was saying to her. I would say to her - if you want to stay - it's going to be a rough road - but I would be so, so happy and we will figure it all out together and be with you 100 gazillion percent. But if you are not supposed to stay, I will love you always, but don't let a mother's wish keep you. I am not sure what Death thought of that either.

The NICU stay lasted 133 days and two weeks after our release we had more visits by Death when the neurosurgeon at Cedars Sinai in LA did not check to see if the shunt he had placed to control her acquired hydrocephalus was working. From this she sustained more brain damage and his attempt to fix it raises eyebrows to this day by the excellent neuro team at Boston Children's. So there were a few more brain surgeries where Ellie would be under the knife and I would be dancing with Death. Dave and I would wait in the stark, fluorescent lit waiting areas and we would both close our eyes and try to imagine being in the room with her and imploring all the angels and inner guides in the universe in any shape or form to assist and keep her with us. I would feel Death's hand on my shoulder. Death's hand felt pretty cold and pretty familiar at this point. It did not shake off easily so I just accepted Its presence.

Acquired hydrocephalus is a nasty thing. For the first 2 years of her life we were in the hospital on a weekly basis because the symptoms of pressure on the brain are distinct and she had them a lot.

So when I hear people talking about fear and love I know they are forever intertwined. I have not, as a new mother, been able to separate them. They do a dance and I am taken along. But having become so intimate with fear and the possibility of death has made me learn to love more. To love from the present moment to the very deep depths of my soul. That is how I love Ellie every day. Completely here and now and deep, deep, deep. I know some parents in the same situation keep their distance, try not to get attached, buy into what the doctors say, and rarely come to the NICU. And fair play to them. There are a lot of people like this out there in not so severe situations deciding to hold back on loving someone because of fear of some sort of death - la petit morte. But I chose to dive right in, though it wasn't really a choice for me or Dave. People say we are amazing parents and it's amazing what we have all been through and how well Ellie has done. But in truth, we could not have done otherwise because we dove head long into the deep well of love for her that was our guide. So we stayed in the NICU every day for 133 days for 20 hours per day or on bad days the entire day taking shifts, sleeping in our car in the parking garage or not sleeping at all. We bought medical texts to educate ourselves in all the doctor speak so we could make informed decisions. We looked in our hearts and knew she would be amazing. We keep our hope for her and science's new discoveries that may help her brain heal.

I am so glad she decided to stay. I am so thankful she is not a vegetable. Today she communicated to me that she did not want me to sign choices to her but to write the words down for her to pick from on her magna doodle board. The astounding thing is that when I obliged she knew the words and picked what she needed. Ok - so she's not even four yet and can read words I didn't know she knew and has picked this up from somewhere - the books we read to her, the labels on her toys. Death can hang out all it wants, but Ellie has a path of her own and is sticking stubbornly to it - Death be damned. This is why I think of her as my little angel who delivered me from death by staying alive.

Being married, being me and the in between

Why, at times, does my husband remind me of my father? Creepy as that is, it might not be him but me. My reaction to getting directed on things that I am perfectly competent at and might have actually taught him a thing or two about is, you could say, a bit strong. I married the oldest child you see and he had a lot of responsibility growing up looking after his siblings. So naturally, he is a bit bossy. But still, for crying out loud, I don’t need just in time lessons on how to drive while driving or load up the wood stove. I grew up with a two wood stoves in a house solely heated by wood. He grew up in a centrally gas heated row house in Dublin. Who knows more about wood and wood stoves? That would be me. He did not even know what kindling was until I told him or how to start a fire until I taught him. I yi yi. But still, another girl might think it’s cute. Another woman might not mind being told how to do every day things by men. Maybe it's because of #11 in the about me post.

But why me? Is this normal to get so much direction? Or for some reason do I look entirely incompetent? Do I somehow attract question and a need in men to “help” my sorry ass? I would really like to know. Or are they just all this way – ever helpful and know all and hovering? But of course not so much when it comes to taking out the garbage or lifting the heavy stuff. Sigh.

Ah, well, we have been married almost a year now and I still think he is great. And I know I get most annoyed at him when I am so tired I think my face is going to fall off. So you tell me. In the mean time, I will go on proving my competence and suffering suggestion on every day things. Maybe I will even learn a thing or two.

About Me

This is the stuff I could not fit into the "about me" bit in the profile. Probably way more than you want to know - but this is my blog so read it or no. But there it is.
Important things you should know about me.

1. I am a 30 something New Englander turned Los Angeles transplant, mother of one, wife of an Irish guy, artist turned organization psychologist. I live in the burbs which are geographically close to the best children’s medicine in the world though sadly plagued with a long forgotten hideous thing called winter and an astounding and tedious amount of white bread snobbery and haughty pretension.
2. For the record, I miss diverse, open, anything goes, 76 degrees and sunny every day, fresh fruit and veg everywhere, beach walking, night clubbing, insane freeway driving, smiling, raw food eating, moveable feasting, we will coo over your baby even with all the tubes sticking out of her Los Angeles. But alas, we are here for good purpose and no good deeds goes unpunished. Such is life and more that you can read about here at Ryn Tales. Also known as the black hole of the web, where posts go to die and a writer can communicate complex life events completely in fragments to no one. Ms. Russo, eat your heart out.
3. I am relatively sure I was switched at birth, which would explain why in my mind as a toddler I referred to my nuclear family as "those people" and never felt myself really “one of them”. In psychology this is called feeling marginalized. And, just to be clear, I love them anyway with all the diabolical preconditioned DNA magic that god gave me. Damn her!
4. As it turns out being marginalized is a great background for being an organizational psychologist, which is how I prefer to make a living, helping other people not be so marginalized and more effective at work.
5. I am married and live with my wonderful husband Dave (Don’t gag. He really is great though he snores and is really stubborn and tries to wear his tee shirts twice when he is really a once wear man) and my beautiful elfin daughter Ellie.
6. I write a lot of bad poetry which I may share on this site.
7. I write a lot of bad pros which I have been sharing.
8. My first love is art as in oil painting. I did it for awhile as a profession but could not stomach dealing with 50 something menapausal gallery owners who treated me like dirt or the customers who are more concerned with my painting matching their beige leather sectional than the quality of my art and lastly, the people who would come to my shows and say, "wow, those trees are eerie" or, "Is she into devil worship?" (No! Why is painting trees about the devil?), and other equally stupid comments.
9. I have a painting studio waiting to be used. I will keep you posted.
10. I started my blog to communicate with and inform other parents of my experiences as a mom of a child with cerebral palsy.
11. I use my blog for the purpose above but also to vent and muse about life.
12. I am ABD, which is different from ADD or AHDH, but not really. The point is that I actually finished my dissertation, but my ratbastard chauvenist pig of a frustrated barely published lame ass professor, D.M., intentionally sabotaged me during my final defense and then I had Ellie and then we were in the NICU for 133 days and dealing with a child being near death for the first 2 years of her life and it’s only since the start of this year that she is sleeping through the night at 3 and a half…so you see I have not finished revising it…. But anywho, I kick ass at organizational development and love, love, love that work with a passion!
13. I had the highest IQ in my 7th grade class. I know this because my friend Cathy looked in her teacher dad’s brief case and then told everyone their results.
14. I was state champion bicycle racer in road race and time trial for 3 years in a row as a junior
15. I take an eastern approach to spirituality, which totally filters the way I view the world. It includes a belief in karma and past lives and soul travel and life beyond this one as well as a god who is not really interested in people's day to day bullshit. I can’t help it, my experiences are my guide. But I deplore the evangelical approach and strongly support respecting other people’s experiences and reality, even if it differs from mine.
16. I think George Bush is an incredible idiot and every time I see him I see a little beanie with helicopter like rotor on his head in multi color.
17. I flew small planes for awhile and loved it.

Pitter Patter

Free writings are such that the mind is unleashed and one can simply flow with the river of their thoughts. Futile to try to stop the tide. As one can sit by a river so one can sit within themselves and watch or listen to the great current that is their mental self. A juggernaut of natter always on except in the deepest of sleep and most interesting in the song of dreams. By day, mostly meaningless white noise peppered with Freudian-like popups of potentially important things. Important to whom, though? Blah, blah, blah, blah blah.... So why chart it? Why try to capture it in a free writing? Why is this post even about a free writing when the entire thing is supposed to be dedicated to my daughter and our life as parents raising a child with disabilities? Does it really matter, since no one reads this blog anyway? So I can unleash all of this into the void. The black hole of the web, also known as my blog - ryn tales.

Anyway, free we are to write and write whatever, whenever, from wherever. Gotta love modern technology -transcending space and time to allow for instant gratification and communication - even the tracking of one's meaningless mental chatter.

Invisible reader, forgive me if you exist at all.

The Impermanent Self

Rychlak said that the self is as impermanent as the weather. It changes daily and transforms completely over time. At first I found this hard to digest, as a believer in a more permanent self I call soul. But over time I have seen Rychlak’s assertion come to pass. And, as it was upon first hearing, it is disturbing. But maybe that’s because I am sentimental. I try to cling to the past for those brief moments locked into imperfect memories that bring the illusion of comfort in the present.

I look at myself from a distance at times and wonder how did I get here? Why don’t I do this anymore or that? I am reminded of the “this and that’s” as I go through all of my belongings and every nook and cranny of the house searching for things to give away, throw away and organize. For too many years I have carried around about 50 pounds of clothes I never wear, books I feel pressure to read when I see them, but don’t want to read, items I feel obligated to keep but only remind me of unpleasant events. All of it, and I do mean all, has to go. And go as soon as I can get a charity to come to my door and take it. That day, for a three boxes and a bag is tomorrow. Hurray!

It was surprising however as I went through things the memories they brought back. The person I was. There were many old love letters and some blow off letters. God, if I could tell my 18-year-old self what I know now, none of those letters would have hurt at all. But that is the ever-changing self as well as the developing mind.

It’s been 3 months now that I have been self and clutter clearing. The big purge as it were. In doing so, I feel lighter and have more floor space. My mother, monitoring the inner channels only mothers can, simultaneously decided to clutter clear as well and brings me a new box each time I see her. But I must admit, the antique china and cut glass candle holders that were my Nana’s wedding gifts are way better than anything I have given away. And now I have somewhere to put them – kind of…

But that’s how it goes. Clutter clearing is good Feng Shui or as my husband pronounces it – Fang Shuueeey. In giving away all I am open to accepting the new. In accepting the impermanent self I am allowed to imagine a better self. So I am imagining a fantastic self: who is not afraid or uptight or stressed, who looks in the mirror and sees beauty all of the time not just in rare moments, who is full of abundance of heart and expects an abundant life, who is capable of living up to her highest potential and exercising daily her many gifts. Thanks Rychlak!

Dragonfly

Walden Pond is crystal clear. Was his thinking clarified by proximity to it's waters? The house was small but vast in it's ability to allow one space to breath and be. I understand what he meant about possessions weighing you down. I shared the crystal clear waters today with some fish, many, many dragonflies and several hundred children. There was nothing meditative about it. But I was revitalization by the waters, the sun, and the high pressure day. Taking care of one's soul is difficult when you are weighed down by obligations to people and things. A man said to me today, "You must take care of yourself first, because no one else will." He was right.

I was a bridesmaid this weekend last at my sister's wedding. For the record, I rather eat pigs brains then be a bridesmaid. I will do it if asked, but maybe if all my friends read this I will never get asked again. Blogs can be so useful. Anyway, in my experience, it is never fun. The dress always sucks and you are dealing with a Bride. All brides have a bit of a bridezilla in them - I did for about 5 minutes...that's a good story for another post. But despite the fact that my dress did not quite fit right and the stylist gave me a big 80's style updoo in the basement of the salon while my two sisters were getting their locks tamed into natural looking down doos upstairs...the wedding was a beautiful thing. I am happy she has found happiness. She's a great person who has lived through more than her share of hardship and she has found a guy with a big heart and a lot of love to give. She deserves it all and more.

Weddings, however, are for the bride and groom. Mine was for me and Dave, my friends were for them and this one was too from the cake made of doughnuts to the poetic personal vows. The experience for me was somewhat overshadowed by the family dynamics (read between the beauty parlor lines) and the fact that Ellie decided to add to the ceremony by screaming through the entire thing. Dave, not realizing how loud Ellie was and not receiving my telepathic pleas for him to bring her inside, kept walking with her back and forth just behind the group to ensure that her cries would be evenly dispersed amongst the wedding party. Her screams echoed against the amazing mountainous backdrop only to assault my selfconscious ears again and again. Never the less I lived to tell the tale. My sister's wedding really marked a turning point in my psychic liberation from the past. There will always be grief for me that my family is not one of those super close, we see each other for who we truly are families. But at least this time, I was able to see the family dynamics and not be completely consumed by them. In fact, there were a few times when I thought they were kind of funny. The experience of almost losing my daughter, living the last 8 years 3,000 miles away in Los Angeles and gaining a husband who loves me and looks for the best in me instead of the worst created an extra layer of protection, light enough to go unnoticed but strong enough to keep me safe. Ah for Teflon linings.

Handicap Placards and New Car Purchase in Summer's Heat

Metro West is a low land cauldron of summer heat. Air conditioners drone as the heat and humidity compete for what little oxygen is left in the atmosphere. People move slowly and perspire just the same. We take refuge in our ramshackle house that does not know what style it is and is perpetually in renovations. Walls knocked down in order to be able to see her at all times and get to her quickly if she is choking. Doorways widened to accommodate the "chair" and all windows and cabinets with lead removed. She already has brain damage - why add to the problem. Still it is our home - ours. Our refuge from the heat and outside world. It is quiet and accommodating and filled with the good vibes of happy past inhabitants. Babies born in the downstairs tub. Hand prints of children in the foundation. Nicks in the door frame from forbidden inside ball games. All happy bits of laughter and love haunting our house with a great benevolence. We are peaceful here.

The winds of change are blowing a cooler wind our way. This week we were able to acquire a car that will fit "the chair" and allow all the discs in my back to stay in place while getting her and out of the car. Now I sit higher on the road when I drive and in doing so feel less back pain. It took 7 months to get the handicap placard. The clerk at the RMV told me when I called after the customary month that the website says it will take that they were running two months behind and to call in two weeks. She said that they were usually two months behind. So I called two weeks later and another clerk told me that there was no record of the paper work. This put me over the edge. The RMV makes it a bit difficult for a handicap person or caretaker of such a person to get a handicap placard. First, you have to get a signed form from your doctor. This I have no problem with. But I do have a problem with the fact that it expires after one month. So tell you doctor not to date it. I got my first form signed by my child's doctor in December and then my child got sick and we were house bound. By the time I could have gone to the RMV it had expired. So I started again. So that is the first thing wrong. In February, I brought my daughter down, forms in hand only to be turned away by the clerk who jotted down the number of the medical advisory office and said I would have to come back to get the picture taken in another month once I was sent a letter telling me to come down. OK - a disabled person has to go to the RMV TWICE in order to access handicap parking spaces that were created for them! That is ridiculous. I should have right then and there asked to speak to a manager.

After one more month I called and that is when the clerk told me all of my child's records were lost. This is when I really got mad. I asked to speak to a manager. I communicated to her my story of woo in a near hysterical but strangely crystal clear coherent raised voice. She told me the clerk should have never turned us away when we went down there. I could hear an older man in the back ground expressing his outrage at our situation in a gravelly Boston accent in the background. In the end I had to have my doctor fill out the forms for the third time and fax them to this manager. She alerted the RMV that I would be coming down again and told me to ask for the manager when I arrived. I did so and upon arrival and a 2 minute wait they took Ellie's picture right away. We were out of there in 20 minutes. The placard arrived two days later. So there is some humanity in the RMV - you just have to find it.

For all parents of a disabled child - know this: if you have a handicap placard and you are buying a larger car to accommodate your child and all their equipment needs the law exempts you from paying sales or excise taxes. You will need your doctor to sign the RMV form 33 and bring it with you when you purchase the car. And if the dealer tells you they have never heard of it they are ignorant. Here is the link to that webpage: http://www.dor.state.ma.us/rul_reg/dir/dir_03_11.htm

The only reason we knew about this was because another parent of a disabled child told us. Take advantage of this!

Ok - there is my rant for the day regarding the RMV.

Introduction to Life with a "Special Child"

This blog is about my journey through life with a special needs child. Anyone who has read the bit about going to Italy or Holland knows what I mean. Anyone who hasn't can find out a little more by reading this blog. We (my husband, daughter, and I) have had many adventures thus far and have come to know quite a bit that might be helpful for other parents of not so able bodied children. We walk the medical path, the alternative path, the management path, and the healing path. We live in the healing paradigm, meaning we believe that our child's brain can heal versus just be managed as if it were in a static state. I will explore the consequences of the management paradigm, the fallibility of doctors and the medical paradigm and also focus on nutrition. Mostly, I will share what has worked for us to get our child to heal.

The perspective I am coming from can be understood through the avenue of language. Here are some thoughts on that.

Special. You have to love that word. Especially how "they" apply it to children or adults and everyone in between with disabilities. I have heard all kinds of politically correct (PC), corrections to using the terms normal and abnormal. PC terms used to describe my daughter who has cerebral palsy: differently abled, not typical, disabled, special needs, and handicapped. With their opposites - able bodied, typical, and normal.

What most parents of special needs kids, some therapists and nurses understand is that "special" means a great deal more. Special, in our world, refers to the fact that we live a life with an angel. Yes she is a kid. Yes she whines. Yes we have to learn to discern from a whine and an approximation of language so that we can discipline her at times and answer her at others. Angel, because it's a miracle that she is still here. Angel because she has opened our hearts wide enough to let a torrent of love in, painful as that can be to a new parent. What people don't get is that, sympathy is not necessary. We have not "fallen on hard times". If you come to understand our world you will be in awe of it. The spiritual, emotional and mental unfoldment is something to be in awe of.

When I think of special, I think of my daughter who amazes me daily with her courage, intelligence, love, and ability to extract joy from life. Someone said to me today that we were "low incidence" - meaning there are not a ton of kids like my daughter in the public school system. I think that there is a low incidence of kids with CP in the mainstream population centers like school, and the library, and on public streets because of poor accessibility. It horrifies me to think where all of these kids and people have been shunted away to. But yes, on the other hand, and thank God, most kids do not suffer traumatic brain injury at birth.

The most important realizations have come from conversations with other parents we have met along the way in the NICU, at the therapy centers we go to and the most surprising places. One mother ran after us in the Home Depot parking lot, her child in her "special" stroller bouncing along, because she spotted our daughter in her Kid Kart. That was a particulary excellent outreach move on her part. More pieces of the school navigation puzzle were answered by her - at just the right time. There is so much syncronicity or coincidence in our world it's quite weird at times how our struggles and questions get answered - even when we don't always ask them aloud. I would like to know more parents and kids in situations like ours, because it's a rather isolating thing to have gone to Holland when everyone else goes to Italy. So do chime in, any time! I will share what we have learned here. If any of it helps even one other mother or father or person in similar circumstances, then I have succeeded.