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Tuesday, January 30, 2007

3BTs & Ode to a Hot Water Bottle

1. Meeting school teachers, administrators and therapists who were actually happy to meet us - especially Ellie. I was overwhelmed nearly to tears by their expertise. An example of this was their handling of Ellie's auditory defensiveness which has been a real barrier to Ellie participating in any activities with other kids. When her auditory defensiveness kicked in over an unfamiliar song and the dreaded clapping in under a nanosecond, without communicating it to each other, the teacher and two aids simultaneously changed to whisper singing the song and ceased clapping altogether to accommodate Ellie. Doesn't it make you want to tear up? Hope and more hope that Ellie might get to be a part of this amazing program.

2. Also during the same circle time song - which was a hello song sung to each child - when it came to Ellie's turn - she stopped winging and actually paid attention to it. It was like she was thinking, "Oh? OK! It's still all about me so this is fine." Our Lady Muck is definitely showing us that she is ready for school especially at a place where they truly understand her processing issues and were enthused about all her amazing potential. Cross your fingers for our Warrior Princess.

3. Filling up three hot water bottles each night. Not only the hot water bottles themselves, which are one of life's best inventions, thank you very much Slavoljub Eduard Penkala (1871 - 1922), but the fact that we each have one and they are all red. I think Ellie's gives her the comfort of feeling something warm by her in the cold wee hours of the morning, which has allowed her, without our assistance, and I say this ever so softly as not to jinx it, sleep through the night for the past three nights. Oh, Sleep Through The Night Gods, thankyouthankyouthankyouthankyouthankyouthankyouthankyouthankyouthankyou!

Monday, January 29, 2007

A Girl Wants to Know

More observations from the blogosphere and life.

I was thinking about my blogging experience lately especially after the last post. Dave said it was “hard core”. Translation – I can’t believe you wrote about that in a public forum. To which I dispassionately replied, “I don’t care.”

“I know,” he said knowing it as a losing battle, worrying how much of my sorry journal crazy self would be bursting out onto the public scene.

“It was a good post,” he relented and then gave me a hug and said he was sorry I was feeling bad. It was one of those moments in my relationship with him when I revel in the fact that I married the right guy.

But it got me thinking about my blog. When I first starting writing it I told no one. It was me and cyberspace. I think it really was me and me alone. Then I told Dave and he read it all and liked it – well most of it. He made me delete other bits, which I am sworn to secrecy about. Ryn Tales – racy black hole of the blogosphere… (It will be funny to see what Google searches turn up because of that last sentence.) Sigh.

But I digress. Then I told a select group of friends and family. In the first posts I was earnest. After I told everyone, I had a crowd and it was fun. It was fun to see if I could make my readers laugh. It was like a honeymoon period and that lasted all the way until these late winter months and some of the more serious issues started to creep into my book of days.

Then I got to thinking about my relationship with Dave and I asked him,

“Am I still funny?”

“Oh, you’re funny.”

“I don’t mean quirky, I mean comedic.”

“Yeah, you’re still funny. Our lives are just in a different context now.”

“Yeah, it’s much easier to be funny working in a dot com living in Socal where it’s 76 degrees and sunny every day. Way easier.”

“Yeah. You still ask a lot of strange questions.”

“Let’s stick to the topic of me being funny. A girl wants to know.”

So that is the way of it? Am I leaving the honeymoon phase with my blog? Am I at a turning point? Is it go deeper or get out? Hmmmm. Will have to think about that one for a bit. Does all of this mean I am in some sort of weird marriage with my blog? Are Blog and Blogger so intertwined? Or is it just the cold sub arctic temperatures and the long scary month we have had?

Will I ever get my funny back? A girl wants to know.

Sunday, January 28, 2007

Grief in the Joy of Life

I have been struggling to post lately. But that’s what I do. When things are really bad inside, I disappear. This blog is a way to be present in my life. For some days now it has been hard to be present. It’s not that life is so bad or hard. It’s more the pain of living in general, the pain of having an open heart. Lots of things can rip open a heart that is slightly closed or just not as open as it could be. One is grief.

Lately I have been grieving. We finally found out why, why, why Ellie was born so early under such violent conditions. It has taken several doctors and 4 years to finally put the mystery together. With the answers I can no longer blame myself and I cannot responsibly try for another pregnancy either. That is a sad thing to suddenly find out your child bearing years are over. As unbelievable as this may sound, I am so incredibly grateful to have gotten to carry Ellie as long as I could. I am even more grateful that we are both still here to share our life together as mother and daughter.

When an answer comes to a question that has been asked for so so long it is like being immersed in cold water that makes you immediately numb. I suppose this is the way the body protects itself from death or the mind’s way of insulating itself from insanity. Numbness. Nothingness. Stuffing pain down into the cold water of shock while one cheerfully gets on with their day to day or snaps at their poor sweet husband.

This is what I have been doing on and off since mid December. All my dreams of carrying another baby and “doing it right this time” have been decimated by the truth that if I do the doctors assure me I will most likely die and take the baby with me. The best case scenario is a repeat of what happened with Ellie. That would be completely irresponsible on my part. So that’s it. There you have it. Grief come on down and do your thing.

I first learned about grief when my Nana Helen died. She was the first person I felt consistently and unconditionally loved by. She was amazing in her ability to transcend an incredibly difficult childhood to become wise. She is the reason I went on and slogged it through my own really awful childhood. She died when I was 21 leaving me to face grief alone. Newfound grief is the worst. I have found over the years that when grief comes, and it does, in its own unpredictable way, it is bittersweet and not so life threatening as when it is new. It comes on a whiff of wintergreen lifesaver and there is Nana in her gloves sitting next to me on a long car ride slipping me a wintergreen lifesaver with a twinkle in her eye and an arm around my small shoulders. I contemplate my paten leather clad feet that don’t reach to the end of the seat and am happy to be near her. No car seats in those days.

Life has its twists and turns and sucker punches and joys and love. It’s a mixed bag. I look at Ellie now and even more than before, when I did not know why, thank God for the miracle of her having survived, for getting to carry her and bond with her in that way a mother does. What a huge gift in light of its impossibility. If we are not here to unfold as souls and to learn to love more and find true compassion, why are we here? Ellie teaches me about both each day. Grief enriches the whole thing and reminds me to be thankful for what is in the here and now – which is a lot.

Wednesday, January 24, 2007

Hope your week has been better than mine...

But if it hasn't, this picture is for you!

This coming week is National Mental Health Care week. You can do your part by remembering to contact at least one unstable person to show you care.

Thursday, January 18, 2007

Morning has broken...

Ellie's fever finally broke last night and with it her appetite returned. She is still coughing a lot, but not every waking moment, and is still tired and snotty but definitely on the mend. She is playing more and in good spirits. The antibiotics seem to be working which is good because I hate giving her antibiotics, especially before it was established that her pneumonia was bacterial or viral.

Here are the others things I have been giving her to help her fight the pneumonia and heal:

1. Essential Oils of eucalyptus and lavender and frankincense in her humidifier. The eucalyptus helps to open her airways and lungs. Lavender because it is especially anti viral and helps her relax, and frankincense because that is what my gut told me to give her. We had been using frankincense (one drop to 3 drops olive oil) on her feet because it brings oxygen to the brain as it is a turpenoid (not sure I have spelled that right). I am not sure if it is helping here, but my inner voice kept telling me to put it in her humidifier last night so I did. If you don’t know what an inner voice is, first of all I am so sorry for you, second of all, don’t worry because your are probably hearing it all the time, especially when you are about to do something you should not. So just listen up and you will find yours quite useful.

A word on essential oils:

My friend Pey, who is an excellent aroma-therapist, advised me to only give them to Ellie 6 days a week and then give her a rest. They are pretty intense and you never put them on a child directly or internally! Dilute, dilute, dilute! This is why they go in her humidifier and just a few drops are necessary.

If you are buying them, make sure they are organic and wild crafted. Whole Foods carries some commercial brands, but these lose their effectiveness in the mass production. Essential oils effect a person’s energy and body and emotions. In the US I get them from my friend Kerry at
Useful Weeds. You can also order them for Materia Aromatica in the UK.

2. Freshly squeezed vegetable juices: carrot, beet, ginger, garlic juice once a day and given directly after being juiced. All of these provide live enzymes to help her system overall. The ginger will help her body burn out the infection in her lungs and garlic, especially fresh squeezed is an excellent antiviral, antibacterial, anti fungal, anti most bad stuff that effects the body. If I weren’t chickenshit I could have just tried giving Ellie these things instead of the antibiotic. But I am chickenshit and did want to experiment on her in this way especially since she was so sick. NOTE: The first day on the juices I used 1/3 freshly juiced combo as described above to 2/3 filtered water. Two days after that I used a 50/50 ratio. I cut the juice because this combination is very strong for a child.

3. Stopped giving her the goat's milk formula she normally gets as it was making her too gunky as most milk products are phlegm inducing.

4. Giving her the whey protein I described here. I am happy to report she is doing great on it. Even though whey is a derivative of milk - remember curds and whey - it does not contain lactic acid which is the thing in milk responsible for making people allergic to it, phlegm being one of the major symptoms of lactose intolerance.

5. Chest PT – meaning with a cupped hand you tap her rib cage in order to loosen up the phlegm in her lungs. The nurses showed me how to do this. I am so glad to have the nursing care when Ellie is sick because, especially in this instance, it is the only thing keeping us out of the hospital.

6. Red Lentil, beet, carrot, garlic soup – very watered down for some easy to digest and nutrient rich calories and more garlic.

7. Water and more water as well as watered down cereal. When Ellie was going through the worst of this on Monday and Tuesday she could not handle any solids and her system just needed fluids to keep all that phlegm moving up and out.

8. Tylenol Infant Drops. See, I walked both paths here – allopathic and naturopathic. Sacrilege I know, but she was in pain and coughing constantly and when her fever got up there I gave it to her and she was able to sleep. I was also able to sleep without the fear that her fever would get high during the night without me knowing it.

9. Flovent. The doctors prescribed this steroid to help open up her lungs and bring up the phlegm. It works even though it is difficult to administer.

10. Lots of hugs and love and sleep. I have been covered in Ellie who could only stop coughing if she were on her side on my chest. So there we were for a couple of days. I have never been covered in so much snot since I was probably her age. Sigh.

I am very happy to say that she is doing much, much better and able to laugh once again even though it makes her cough, which is a good thing to get all the “yuckies” out of her lungs.

Here are some more pictures of our trip. The first pic is of Ellie all dressed in a red velvet dress at her Nanny’s wedding. Someone else asked me what the hyperbaric tank looked like and you can see it here with Column (sorry to misspell your name!) Column volunteers his time to run the chamber for Advance. He is an ex-diver among other things. I think he is also an ex- 007 type, but he won’t admit to it. There are 3-4 gentlemen at Advance who volunteer their time to help out with the Hyperbaric chamber. Thanks to all of them. The last picture is of Ellie and Great Grandmother Bridie. Bridie is having a little "nurse" with Ellie. "Nurse" being the Irish phrase for having a snuggle. Ellie loves being the center of attention and getting lots of love from all manner of Grannies, Grandpas, Aunties and Uncles and Great Uncles and cousins in Ireland when we visit her family there. Wish we weren't so far away.

Disclaimer: These are the things I am doing to help Ellie get better but I am not writing this post to recommend these things for anyone else. Work with your own medical or naturopathic practitioners and your own inner guidance to help your child or yourself. I am just a mom when it comes to this, not an expert. This post might give you some helpful ideas but that is all it is intended to do as well as to let everyone who cares know that our little warrior princess has conquered pneumonia (because she so rocks!).

Wednesday, January 17, 2007

Oxygen On Planes or Why We Are Boycotting AA

Dave and I have been going back and forth about getting Ellie oxygen whenever she has to fly anywhere but especially to Advance for therapy. Flying is hard on her as it is on everyone at a high altitude with low oxygen. Every time we arrive at Advance or in Ireland it takes Ellie at least 2 weeks to recover. She is tired and pale and needs to sleep a lot and is not as bright and interactive as she usually is. Linda has been telling us that if we get her oxygen it will reduce her jetlag and will allow her to better assess Ellie as well as help Ellie get more out of the therapy. Linda prescribes exercises based on her evaluation of Ellie and it's hard to evaluate one who is exhausted from jet lag. Linda, as with all the things she recommends, takes her own advice. She uses oxygen every time she flys. She is opening up centers in South Africa and the Philippines and sees many families when she goes there with no extra time for fatigue and jetlag. After our big Scare with Ellie having a seizure as I described here, this time we decided that for our flight back we would request to buy some oxygen for her on the plane. We were flying American Airlines.

Dave called the English branch of American Airlines 2 days before we were to leave. They told him that they needed 72 hours notice for oxygen on planes and that since we had broached the subject at all they would now have to have one of their doctors examine Ellie to determine if they should let us fly at all. Dave tried explaining that it wasn’t medically necessary for Ellie to have oxygen on the plane but that it would help her with the jet lag at home. The airline representative he spoke with said that they would want one of their doctors to examine Ellie at check in, in order for her to fly. Dave said this was ok.

Great huh!

We arrived at Heathrow 3 hours before our flight and went to the check in. Alice, the American employee at the desk, started the check in process. In under a minute there was a problem. She asked for our medical release form. We asked what medical release form. She then, looking very put out, informed us that we needed one from a doctor for American to let Ellie on the flight. We said we didn't have one and that on the phone American Airline personnel told us if they needed to examine Ellie there would be a doctor here at the airport. Her response was, "Well I don’t know anything about that but, you're not flying today." We explained that we were only visiting England and did not have a doctor here. We tried explaining that it wasn't medically necessary for Ellie to have oxygen but only nice to have it in order to speed her recovery at home.

Alice was unmoved and by the pinched sour expression on her face getting more annoyed by the minute. She told us that we would not be flying today again. At this point I, ah, kind of lost it. I told her I wanted to speak to her supervisor immediatley. And I mentioned that if we were stranded in Heathrow with limited medication, diapers, and food for Ellie I would sue the airline for all it was worth.

Her supervisor came out pretty quickly and after a rather heated discussion took our case to their medical people whom we never saw. We cooled our heals by the check in desk and waited for 20 minutes. The supervisor came back and asked us a little about Ellie’s condition and we assured her Ellie had never had any trouble flying. She came back 10 minutes later and said we had been cleared to fly. She also informed us that if Ellie needed oxygen on the plane while in the air they would have to divert the flight.

This whole story was unbelievable to our friends at Advance as British Airways understands the need for oxygen on the plane and will gladly sell it to you. Virgin Atlantic gives it to you for free.

After this incident this same supervisor was very kind to us getting us on the plane first and out of her hair. That said, we won't be flying American Airlines again. Clearly the fact that one AA employee could tell us on the phone that there would be a doctor at the check in and then Alice never having heard of this shows that they did not have a policy in place to deal with this. Had they told Dave on the phone that we needed a medical release form from a doctor, at that point, two days before our flight we would have been able to get one. This is not the first time I have experienced their very poor customer service when it comes to someone needing physical assistance. On this trip for instance, we let them know that though we had Ellie in a stroller versus her wheelchair that she can’t walk and that we need to bring her stroller to the gate. This was fine but upon deplaning in Boston there was no stroller at the door and the employees on the ramp told us we had to go down stairs to get it. As it turns out down stairs meant baggage claim. We had to walk miles and wait in a long passport check line with no stroller. The stroller arrived in the baggage claim. What’s up with that?! When I was 6 months pregnant with Ellie I was flying for my company. I was having trouble lifting my case into the overhead. There was an airhostess coming down the aisle towards me. I asked her if she could give me a hand - I had my case midway there. She said if I was unable to manage my carry on I would have to get off the plane. And then proceeded not to help me but stare at me as if I had two heads. It was humiliating.

So you see, I have had it with them and won't fly with them again. Not to mention that on the way there we were in some sort of twilight zone of a seating arrangement such that when the person in front of us put back their chair the seat was literally 3 inches from your face. Very difficult to hold a Hypotonic child in this position.

So, sorry American, but you won't be getting our business anymore. And for the record, Alice should really go to customer service training.

Monday, January 15, 2007

Rocky Landing Ramble

Ellie's stuffy nose that she has had for a couple of weeks turned into a persistent cough and now pneumonia. She is now on antibiotics and an inhaler. She is generating more snot than her little body looks capable of. When she is not sleeping between coughing fits she wants to play. Play with everything. It's like she feels she is sleeping during normal play time and has to make up for it. But her cheeks are rosy and she seems to be fighting "it".

Sigh. What does this mean for 2007?

This reminds me of my birthday superstition. Every birthday I try to fill my day with all the things I want to have lots of during the year. For example, it's great to have a consulting gig on that day, some good food, good exercise like yoga, and time with friends and of course sex. As my superstition dictates - this will ensure a year with all of these things present.

So if you get sick at the start of a year is it going to be a bad year?

See that's the thing about superstitions - they are just mental games that ease one's anxiety over the fact that we can't predict the future and most of the time we don't know what the heck is going to happen next. It's not like when I am reading a novel and one of the characters gets into trouble so I peek ahead and make sure they are still in the book. Ever done that? Yes. Can't do that in life though. I have had lots of dreams that have come true. And some deja vus that were pretty convincing but when I am most worried I can summon up nothing. None of that wonderful intuition I have regarding anything I am not stressed out about or care too much for. It's a bummer. Surrender can be so difficult at times.

Sunday, January 14, 2007

What a long strange trip it has been

We arrived back from England and Advance on Thursday – exhausted. Our trip had two key purposes. 1 – Go to Advance for more therapy for Ellie. 2- Attend Dave’s mother’s wedding in Dublin where I was also the photographer. (Obviously his mom and step dad are a bit nuts but the pics actually turned out well). Ellie, is normally a great traveler. On this trip she was her usual self - happy and excited to get Mama and Dada in close proximity for hours at a time. She is even able to catch some z’s on planes and in her stroller which reclines back. This is definitely something she inherited from her father. But for the first time, we flew to Ireland via Heathrow to save money and use up the last of my road warrior air miles on American Airlines. Usually we fly straight to Dublin. This leg to Heathrow made our trip 6 hours longer than it normally is and the high winds caused even more delays. By the time we were on the flight from England to Dublin we were all exhausted – especially Ellie. We arrived at Dave’s mom’s house, gave Ellie a meal and then Ellie and Dave lay down for a nap. I joined them about 30 minutes into it after a bit of organizing. As I lay down beside Ellie, she turned to me and tried to sit up. She was pale gray and her right arm was pumping, hand fisted and hitting her head. She was trying to get to me. She was having the worst seizure she has had since her time in the NICU.

After a couple of minutes of this, I got the emergency seizure kit (Diastat) and gave it to her. The kit says you are supposed to wait for 5 minutes but this was a big seizure for Ellie so I did not wait. For another 7 minutes she was seizing. Dave’s mom called the ambulance. Ellie finally stopped seizing after a total of 10 minutes. I had her on her side as the folks on the emergency medical line instructed. I was talking to her and crying at the same time. She was reaching out and grabbing my hand. And gently reaching for her Nanny’s necklace. It was as if to reassure us that she was going to be ok. The ambulance arrived very quickly and they gave her oxygen and rushed her and us to the hospital. While the ER team was a little disorganized and had trouble getting an IV in, once we were on the floor in the ward the doctor there was excellent. She got all the right tests ordered when the ER folks said they could not be done on New Years eve. Ellie’s aunt later told us that she heard that same doctor telling off the technicians to kick them into high gear to get things done.

Ellie and I spent New Year’s Eve in the hospital. Ellie was monitored and slept on and off. Dave’s brother and sister-in-law insisted on staying the night in the room with us. They had us in a closed off room with two beds and a cot. It was different and nice to have help when Ellie is in the hospital. We haven’t had that since we moved to the East coast. Usually we are there by ourselves the entire time and taking shifts to manage work.

The Irish doctors conferred with our Boston neuro team and they both agreed. The scans came out fine.

Seizures are scary things. When Ellie was first diagnosed with them in May her neurologist stressed to us the importance of putting her on medication for them. In May her seizures were way less severe and we were concerned that the meds would keep her in a zombie like state. We were under the impression that the brain was only effected adversely from a seizure if there was a lack of oxygen. Our neurologist disabused us of this notion stating that in a developing child short term memory is erased randomly during a seizure. So seizures effect and delay the child’s development. I had noticed that Ellie would “forget” some things I thought she knew at this time and I think that was from the seizures.

The reason the doctors surmised that Ellie had this seizure was that her med dose had just been lowered by our Boston doctors (because Ellie had been symptom free since May). We wanted her on the lowest dose possible because she is only 4 and her liver is being asked to process a lot of meds already due to her reflux. We tried a drop of her seizure med, Depakote, and the stuff burns the tongue. I worry what it does to her insides. This lower dose combined with the stress of being tired may have just been too much for her.

Also, for the record, all the decisions we make for Ellie are never black and white. Someone recently said to me that “clearly you have a lot of guilt” over choices we have had to make for Ellie. This is not quite right. We are always choosing between two evils and hoping we picked the lesser one. There are always shades of gray especially when dealing with the brain. So it’s not guilt, but the difficulty of having to live in the gray area and always hoping you did the right thing, which does not always bear out right away but over time. Don’t get me wrong, I know we have done very well by Ellie and worked very hard and used all of our god given gifts and energy to do so. For me, I can’t really go to the place where I might feel proud or comfortable with all of this because I worry that I will become less vigilant. Maybe that’s posttraumatic stress talking. But I do not want to ever relax my vigilance over my daughter and her needs. I will probably never think, ok I have done enough. No, that is not in the cards for me this lifetime. I will be working to help Ellie until I die and that is that and that is ok. It’s a good problem to have because I have become a better person in doing so.

The scariest thing during the seizure was wondering when it would stop and thinking Ellie might die. And then when it did stop wondering if it took some of Ellie with it. We would not know this for a couple of days because she had to readjust to her new med dose and rest. Now that we are back she has remembered all the games we played before the trip and her language has come on even more. She is starting to make word approximations and this is very exciting stuff.

Just the same, seizures suck. I felt really bad for Ellie and what it must have been like for her which I can’t even imagine never having had a seizure. And I did feel guilt about dragging her tiny self across the Atlantic. Though she has done this twice a year for 2 years and never had an issue I still feel bad that she had a hard time of it. We are moving forward on a more formalized schedule of testing her Depakote levels. The entire trip after that we let her rest a lot. Usually I wake her up in the morning each day a little earlier to help her adjust to the time change. I didn’t do that this time so we spent the entire trip being up with her from about midnight to 4am. Ellie had multiple naps during the day though we did not.

We made the decision to continue on to England for the therapy and Ellie was fine for the rest of the trip.

The therapy session at Advance went very well. The picture you see is Ellie in the Hyperbaric Oxygen chamber with Dave. The Hyperbaric O2 Therapy is used to give her diaphragm a work out to adjust to the new therapy regimen. We were given double the amount of exercises we had before which is going to require twice the commitment we had. We are on for it. It’s encouraging to look at Ellie’s recent photos from this session and see all the progress she has made. Her head control is so much better. She is more solid in general and can sit up straighter and is so much stronger. Her coloring too has noticeably improved where she used to be so pale. Her reflux has also improved greatly which is a wonderful thing.

Regarding nutrition. The turkey I mentioned trying was only making Ellie more acidic and reflux more as well. Linda has discovered whey protein that is not sweetened. We took some home with us and it’s excellent so far. I am trying it out myself as well. It is mixed with water and is very mild. You can find it at We are starting slowly and so far so good. Ellie usually shows adverse effects to foods either right away or over a few days so I will keep you posted. We are also going to add some live enzymes to her diet by juicing vegetables and grapes. Grapes are also very good for increasing motility. We tried Ellie on both before but she was too sick to handle them a year ago. So I am hoping she will be able to tolerate them now.

We are back and moving on from the trip and the Ashley mailstorm. To borrow a phrase from Jacqui and apply it to trying to discuss the whole thing somewhat rationally – you are damned if you do and damned if you don’t. I am tired too. Uncle!

Moving on with a 3BT

1. Home at last after a long journey
2. Ellie excited about seeing her favorite toy - vtech globe
3. Woodstove burning brightly on a cold rainy winter day

Saturday, January 13, 2007

Ashley from Stepford- Reposted

I have taken this post down and put it back up again because that is the only way I could get rid of an inappropriate clotheid commenter who thinks that profanities are a meaningful way to communicate. I have also turned on the comment moderation to ensure that this psycho will not be able to mar my blog any longer. If he posts without profanity, personal threats to me, and has something intelligent to add to the conversation I will let his comments go through. It's the first time I have actually been threatened via my blog and probably not the last. Sigh.

Apologies to Maureen, Emma, and Janet who left meaningful comments that got wiped out with the rest. I have also take the opportunity to update this post after thinking about it more.

First off, let me be really clear. I think the "Ashley Treatment" is wrong. Wrong now and wrong forever. There are so many reasons why it is wrong but the main one being that it is a violation of Ashley's human rights. How horrifying that there are now proposed studies to try this on other disabled people. Disabled people who are helpless to protest or disagree.

Ugh. I am just so disgusted and upset at the whole thing. I have so many questions. There are so many "nevers" on their blog. She will never do this or that. All their "could happens" are negative things like cancer and sexual abuse. My biggest question is have they ever tried any alternative therapies to helpher brain heal or grow? Is she not an excellent *future (if it is safe one day - which is might be if the government stops blocking the research into it) case regenerative stem cell therapy? What if that becomes a reality in the future and she could have a chance at a better life - but oopps you are 9 forever????

Even if her condition is truly one that will persist and never change, is it right to alter her body in these ways? It is the system that needs to be changed to include support for these parents. Technical support like a lift and emotional support to deal with the situation. The medical support they are receiving seems quite a slippery slope toward massively infringing upon the civil rights of all disabled people.

This quote below is from the Disability Rights Education & Defense Fund and captures how I feel about this exactly(see link below):

We deeply empathsize with parents who face difficult issues raising children with significant phsycial and intellectual disabilities. However, we hold as non-negotiable the principle that personal and physical autonomy of all people with disabilities be regarded as sacrosanct. For decades, parents, families, and the disabled community have been fighting for this principle, and for community-based services for children and adults that make it a reality. Their advocacy led to the enactment of state and federal laws in the 1970s that established extensive rights to full personhood for children and adults with disabilities. These laws were passed to remedy our shameful history of abuse and mistreatment of people just like Ashley.

The medical profession believes there is no recovery from many neurological conditions and some of these conclusions are based on very, very limited population sizes statistically. When something is not clear, making a decision about what to do about it becomes more difficult. Whether Ashley's parents deny it or not, their situation and decision IS all about ease of management. They sound like loving parents - kind of. But the fact that they keep denying this is about managing Ashley physically really irks me. Why not just admit it?

I can personally relate to the fear of a child who is not mobile getting bigger - god my back is in pain every singleday. But my goodness I am creeped out and even if Ellie did not show as much promise as she does or any promise, I would not alter her body unless it was medically necessary for her survival. I think these parents are not being totally honest about their motives and therefore the whole discussion is twisted to begin with. It is such a slippery slope regarding it's impact on the rights of disabled people.

So not trying to be quick to judge but I can't jump on the middle of the road live and let live band wagon either. I am just too creeped out. Gimp Parade, as usual, offers a great perspective and some important points on this whole thing that you can read here.

David has also posted on this here and it is definitely worth the read from the Disability Rights Education & Defense Fund here. It seems that my abusive commenter is all over David's site and Gimp Parade has been lucky enough to have an encounter with him as well. Sad that some people can't discuss things in a civilized manner. Diversity of thought through civilized discussion is what brings enlightenment. Anger only generates fear and ensures ignorance.