The Hard Way

Last Sunday morning began like any other morning. Lu had her feed, watched cartoons, and was in a fine mood. When we brought her out to the table for breakfast (chocolate chip pancakes!) she got very upset. Tears, quivering lip, scrunched up face, heart breaking cries...the whole works. I persevered for a few bites of pancake, which she ate, but her sadness continued to increase in intensity. I asked her to use her PODD on her Tobii to try and tell us what was wrong. When it opened she immediately said, "I want, cuddle".  I took her over to the couch and after about 10 minutes of cuddling this is what happened:

And she slept for over a half hour, which is a long nap for Lu. We then returned to the table, Lucy full of smiles, and ate our reheated pancakes. At this point, it seems like a simple enough thing that happened: I asked why she was crying, she used her Tobii to tell me, and then I fixed it. But it isn't simple, and the process to getting here, to this point, which I still view as a very beginning point, has been anything but easy. 

The PODD system itself is quite a process to learn.  It is an awkward feeling at first when you begin to carry the book around everywhere with you, especially because you feel like everybody notices. I felt nervous and self-conscious.  It is hard to "Be Zen", like Gayle Porter, the creator of PODD encourages you to be, when you are a nervous wreck about making sure you model enough to teach your child how to use the system. It can take a long time for a child with severe apraxia, such as children with Rett experience, to have a reliable yes and no head movement. 

Then...we decided to begin the process of acquiring her Tobii. I contacted our local sales rep. We did a trial of both the Tobii and the Dynavox eye gaze system. Our early intervention speech therapist wrote out a long, and in depth report on how well Lucy used the Tobii. We submitted everything. Our primary insurance approved it right away, but Lu's secondary insurance, her state insurance, stubbornly denied it over and over. We got it anyway by stating we would pay any part that the primary wouldn't. Luckily we didn't have to pay anything. And that was all just to get it! I taught myself to program it, to make pages, games, and books for Lucy. With the help of Linda Burkhart, our PODD trainer, I figured out how to get the best version of the PODD on the Tobii, and it was a whole different piece of software that I then had to learn, and figure out how to program those pages.

 And those are all parts where Lu wasn't even involved. None of that included actually teaching her how to use these systems. We have been so fortunate to have wonderful speech therapists throughout this journey, first my cousin Danielle who worked with Lucy three days a week for two years, and now our therapist, Roxann, through the intermediate unit.  With Danielle we started from nothing and Lucy learned to make choices, to use her head to indicate yes and no, and then began to learn to use the PODD. And now with Roxann, Lucy has the basics down and is learning how to actually use language.  

I model language to her all day with both her paper PODD book, and on her Tobii, and of course just by talking to her all day long. We always make sure she has one or both with her no matter where she is. Our old pt gave us a mount for on her wheelchair, so her Tobii can always be with her when we are out and about. In her Tobii, there are many places where she can say she wants to use her book, and in her book she can say she wants to use her Tobii. And, I can get almost any information from her with simple yes and no questions as well.  

One of the most important things I took away from our PODD training was that the PODD is not work, it is Lucy's voice. I have said this over, and over, and over again to anyone who has needed to hear it, and I believe that keeping that attitude always in the front of my mind is what has made Lucy love it so much, and what makes her excel at using it. It is hers. She can use it or not. We don't "practice" using it, or ever make her use it. Look at her face in this picture below. We were adding items to lists in her new PODD book which has 64 pictures per page.

She just cares so much. She knows it is all for her, all so we can know her and know what she has to say.

But, it is hard. I will never deny that there are days when I drop the ball and maybe don't model much. I will also never deny that there are days, and times of the day, where it all just exhausts me. On top of all that goes into Lucy having meaningful communication, then we add her wide array of equipment that she needs just to have her body positioned safely and comfortably. The next time you witness a child just standing and talking, or even yourself standing and talking, think of this picture:

You can see extra wide shoes to go over special braces that are needed for buckling into a less than tiny standing frame. Then, her Tobii, mounted on the rolling floor mount that is so weird and awkward I've almost made a habit out of banging my toes off of it. All of this dragged back the hall so Lu could stand and talk to me while I put laundry away. It totally sucks, but I do it because she needs it. She needs to stand, she needs to stay strong, but even more importantly, it is her right as a human to be able to communicate with me whenever she wants to, and so that includes her communication system always being available to her. 

I just feel so strongly that all humans, regardless of their abilities, have the absolute right to be able to communicate with the world. "They are nonverbal" should not be the end of the sentence. That's just not all their is to it. Yes, I can generally tell when Lu is hungry, tired, needs to poop, is bored, etc., but that is not exactly rocket science, that's just being a mother. I would never even dream of saying that's all I need to know about my daughter, and I don't think any other parents should have to settle for that either. In the short time we have been in this world of a Rett Syndrome and learning all their is to know about it, what I have noticed is that there might be a lack of aggression on the part of speech therapists to obtain actual, functional, robust communication systems for children who are nonverbal. Not in our personal experience of course, but in other parents I have met. I did a training on Rett at our school district's paraprofessional conference last month, and in the two sessions I had, there were a handful of aides who worked with children who were nonverbal, and not a single one of them had a communication system of any kind! NOTHING! 

In my opinion, it is unacceptable for a human being to not have a means of communication. That is just my opinion of course, which I can share because this is my blog. It is also my opinion that communication systems are lacking in children's lives because it is hard work. Lucy's speech therapists and Chad and I have busted our butts, as I described above, for the past two years to get her to where she is now.  And I say all the time that this is just the beginning for her, and I imagine that in not too many years, she will be able to use her Tobii as fluently as if she were using her mouth. I believe that with all of my heart. I believe it is our right (and obligation) as parents of children who cannot communicate in the typical fashion to not just request that they be provided with alternative means of communicating, but that we demand it. It is their right. "Communication is the essence of human life..."says ASHA, the American Speech-Language-Hearing Association. I've shared the entire quote before, but that is the part that always pops into my head. Lucy deserves everything in life that all other humans get to enjoy automatically, even if it requires huge amounts of effort on the part of everyone around her. She just deserves it. 

Strolling for a Cure

On September 6th, we will be joining other families in a strollathon, the signature fundraiser of Rettsyndrome.org (formerly known as the International Rett Syndrome Foundation) to raise much needed funds for the search for a cure. I have spoken recently about my feelings about a cure and how it simply terrifies me to think about it too long and too hard because my hopes just start to soar. But regardless of my protective coping skills, progress is being made all of the time in the search for ultimately a cure, but also treatments for symptoms. 

In 2007, Rett Syndrome was reversed in mice in a lab. Click on the link below and watch the first two videos on the page. The first is before the reversal, and the second is after. That could be Lucy someday. But isn't everything always about money? Unfortunately it is, and we as a community of parents and loved ones of girls with this miserable condition are often the ones out beating the streets, asking (begging/pleading) for the crucial funds to continue research so that our sweet girls might someday get to live full lives. It costs money to safely translate the success in mice to humans and we just want to help move that along as much as we can. 

Reversal of Rett in mice

There are also several very promising clinical trials taking place throughout the world, testing medications that could change Lucy's life. They also cost a lot of money. I know that money doesn't grow on trees, and that everybody works hard for what they have.  We are just asking that if anybody who can spare anything, ANY amount, would be willing to sponsor us in the strollathon, we would be eternally grateful to you and thankful for your caring and generosity. We just want to see a cure within Lucy's lifetime, and from what we hear, this is a very real possibility, but not without the funds that keep the wheels turning. 

Anybody who is interested is more than welcome to also join our team and help to raise money by getting their own sponsors, and participating in the strollathon with us. The more the merrier!

For anyone else, please feel free to make a donation that is comfortable for you. Again, the Shaffer's and the Rett community will be forever thankful to you!

Please visit the link below to join Team Lucy OR to make your donation:

Team Lucy's Strollathon Page

Here's Lu helping me to prepare a container for some Brussels sprout seeds yesterday afternoon. She always asks to garden. What if someday she could do it without a walker, braces on her legs, and me needing to help her hold all of the tools, and guide her hands for planting the seeds? What if she could do that someday? 

Every Single Word

You know, I wonder if people who read my blog ever think, "Ok Julie, we get it, Lucy is awesome, and she talks to you all the time!"  But what I really want others to understand is that Lucy talking to us, communicating with us, and sharing herself and her personality with us NEVER, EVER gets old! Once a person [doctor] tells you there will be nothing your child can do, she will basically be a vegetable, and then all day every day she proves him wrong, you never forget what he said. I am never less amazed, or delighted, and I am always thankful every single time she talks to us. Even when she's just exploring and "babbling" by saying random words, she is talking! That might sound unrealistic, yeah, sure Julie, you cherish every word that your daughter utters all day long...but, yeah, I really, really do. 

In the past couple of weeks Lu has been developing a little of the "mine" attitude that children go through and we are loving it! We talk to her about sharing and not being greedy, but at the same time, it makes our hearts melt to have Lu doing anything "developmentally appropriate" such as claiming everything as hers. She loves chocolate no-bake cookies. I don't understand why they don't make her choke, but they don't and she wolfs them down.  I don't make them because my Mom makes them pretty often and sends some down to us. The other night before supper I brought some in and showed them to Lu and said Grammy sent some of her favorite cookies. Well, after supper, Chad opened the container to have one and Lu immediately said, "Mine! Mine!" with her Tobii. It was adorable! And so unexpected! We reminded her that Grammy sent them for everyone and we would share them. Then, a few nights later, also at supper, Lucy said, "I want, mine channel, mine, mine, channel" or some similar combination of those words. And she seemed to be looking at Chad. I asked if she wanted to watch her channel when she and Daddy watch cartoons, and she emphatically nodded "yes"! 

Chad and I tell Lu all the time if she thinks of anything in particular that she wants for supper to let us know and one morning she said, 

Needless to say spaghetti was served for supper that night and Lu and I made a homemade apple pie in the afternoon to have for dessert. One day last week I made a pageset up in her Tobii with some fabric choices from the armbraces.com site to see what Lucy might like for a pair of arm braces she has started to need. Immediately, a pattern caught her eye, and she repeated it over and over, even after I encouraged her to explore her other options, she still constantly came back to that one choice. After some time for Lu to look at all of her choices I asked her which was her favorite and not surprisingly she chose her first choice. She knows what she wants and is really starting to be able to tell us more and more, so she doesn't have to just settle for whatever I or anybody else chooses for her. 

Yesterday morning Lucy said:

Why, yes, yes we do, Lu. Perfect observation.

I cut my finger badly two week ago and for like a half hour it just wouldn't quit bleeding. When I finally got it under control Lu and I sat down to eat lunch and she said with her Tobii, "Are you alright?" That us all one button she can choose. She might want to hog all the cookies, but she still has compassion and cares about others which to me is one the most important character traits to instill in a child. 

And last night at supper, I told her she could have [one of Grammy's] cookies for dessert and then chad reminded me that we also have ice cream and hot fudge that she could have. I said to her, "Or you can have ice cream if you want." She said with her Tobii that she wanted to use her book. Right now Lucy is transitioning between a 20 per page book to a 64 per page and when she says she wants to use her book, I give her the choice of which she wants to use. She has mostly been choosing her new book, but last night she chose her old book and said, "I do, want it". I asked if she meant she wanted the ice cream and she very emphatically nodded "yes"! 

I said to Chad last night that I believe eventually Lucy will use her alternative communication system as naturally and fluently as we speak with our mouths. I think getting girls started as early as possible is critical to helping them understand that this is just how they do it, and it becomes the norm to them. It often occurs to me, kind of surprisingly at times,  that Lucy doesn't talk with her mouth. We talk to each other so much all day, that I seldom dwell on her being "nonverbal".  Even when we might be on the couch, in the middle of a crying episode where she is so distraught that she won't even look at her book or her Tobii, she will still often answer my yes and no questions to determine if she knows what is making her cry so I can possibly help. Does Lu use her mouth to speak to us, aside from the occasional, no, yeah, ma, da, nope she doesn't, but does she let the world know who Lucy Shaffer is anyway, uh yeah, all day, every day!

All That I Am?

When I decided not to return to work, not even part-time, after Lucy was born, I went in one day to tell my boss about my decision and to tell everyone goodbye.  I don't know that he was surprised by my decision. I think maybe he said something about how some women can be stay-at-home-moms and some can't, but he knew I could be. But the one thing he said that I have always remembered had to do with not forgetting that there is still a world outside of being a mother.  I don't remember the exact words he used, and I have always tried to remember how he put it because I think I knew, with Lu being only a month or so old at that time, that he was wrong. Not wrong entirely, of course there still is a whole world on the other side of motherhood, but there is nothing in "the world" that I have ever, ever cared about as much as I care about being Lucy's mother. I knew that way back then, when I still had no reason to believe that Lucy's life was going to be any different than any other little girl's.

I kind of hate Facebook. I get on it, but it often just seems so trivial. I don't just give it up entirely because I can stay in contact with other parents and professionals of girls with Rett. That is super important to me.  I don't post much, mostly just new blog posts.  What prompted this post was a realization that came to me this morning while posting a news article on FB that my friend shared with me by another mother of a child with a disability.   Anything I post on FB that is not a picture of Lu or sharing a new blog post, almost always has something  to do with disability awareness. It's what I write about, it's what I post about, and it's often what I talk about.  Is it all that I am? Have I forgotten that there is a world outside of Lucy's disabilities? I suppose some might say yes, but what I say is that accentuating Lucy's ABILITIES within that outside world is almost all that matters to me these days. On Monday we had a tear-free trip to the library.  This has not been the case on our past few trips and I literally could not stop talking about it all afternoon. I was just so happy. And while we were there, I started asking Lu if she wanted this book or that book and she said, with her Tobii, "I don't want to do it" and I asked if she wanted to choose books herself and she said, "No". I think maybe she gets overwhelmed with all of the choosing and being out somewhere in public at the same time. So I chose most of them, but still did ask her just occasionally if she thought one looked good, and that seemed okay to her.  Nothing is more important to me than helping Lu live in that outside world as easily as she can. So, that day we spent the morning talking about going to the library and prepping for it, we spent the afternoon actually going there, and then I gushed about our success for hours afterward. 

Is being Lucy's mom all that is left of me? Absolutely not! I still love to read, and swim, and crochet, and cook, and collect recipes, and attempt to garden.  I am still conducting an informal, spread out over many years "research project" on hippies, the 60's, and Woodstock.  I have started trying to take a nice bath each Sunday night, and pumicing my feet, just so I can relax and pamper myself a bit (it sure would be better if someone else would pumice my feet for me, but I digress.)  I exercise almost daily.  I still have my own dreams and goals.  But...not one of them means more to me than Lucy, and every aspect of being her mother. And besides providing her with the most exceptional care that I can manage, empowering her as a human with worth is what is at the very tippy top of my list of priorities.  And I guess this goal makes me almost obsessively manic about all of the things that will make it possible for her to live a full life.  

Is being an advocate for people with disabilities my new identity? Maybe, and I hope so.  Is being a communication enthusiast for people with complex communication needs a huge part of my life these days? Yep. Am I a nurse, a teacher, an activities director, a physical therapist, speech therapist, and occupational therapist? I am.  And all of these roles are because I am Lucy's mother. Is that all that I am, JUST a mother? It's all that I need to be. 

Longing For Winter

Only when we are in Nanny and Pappy's pool or eating good food at a picinic am I in favor of summer this year.  I am feeling intolerable about any heat, and I find myself almost counting down to fall.  This has all been pretty baffling to me as I have generally loved summer and hated winter for most of my life. So, when I began seeing red and yellow leaves in the yard last week, I instantly felt relieved and then confused by my relief.   Why do I dread summer this year? I have been thinking and thinking about it and gradually came to the realization that winter is easy on me and Lu. I know, for those of you that must leave the house for work, school, etc. it is a nightmare at times, but if the roads are bad, or it's too cold, we don't have to go anywhere.  We are obliged to remain warm and safe in our sanctuary.  But in summer...we are expected to go places.  

Also about summer, kids are out of school, schedules are forgotten and unnecessary, and there is a constant feeling of freedom...unless you are us. We still have feedings every four hours.  It is still extremely difficult to get around to places. It's too hot for Lu a lot of the time. And regardless of the season, Lu still demands to be in bed at 7. So maybe I like winter better because everyone else has more of a structured life too, and then we don't feel so left behind. 

Right now we are waiting on some volunteers to build us a ramp.  We have the supplies sitting in the driveway and we are just waiting for the carpenters to have time.  Having a ramp I think (hope) will make getting outside a ton easier for us as I can then keep Lucy's wheelchair in the house and load her up and just zip outside to the swingset, to the yard, for a walk or whatever we want to do.  As of right now, I have to go out to the car, unload her wheelchair, load her into it after carrying all 40 pounds and 41 inches of her outside, and then reverse the whole process when we are done.  So, all of the things I imagine us doing, like catching bugs, swinging, picking flowers, gardening, gathering supplies for nature art...all seem so close, but so far away when I look out the window.  Everything is right there, but this whole awkward and laborious process stands in our way.  It's like all of the fun we could be having is mocking me every day, and if summer would just go away, then I wouldn't feel guilty for not doing more outside.  Let me tell you one thing though: when I do get her outside to ride her bike, or swing, or anything else I have mentioned, I am so damn proud of myself.  In spite of the fact that a typical child could do five fun things in the time it takes us to do one, I am just happy that we got that one thing done, and Lu had fun. 

For example, we did get a little "gardening" done the other day.  It was on the deck, and in containers, but we still had a great time doing it! We planted basil, Venus Flytrap seeds, peas, and a Brussels sprout plant that we thought had died, but it came back to life.  I helped Lu get her hands right in the dirt and she even had it all over her lap!  Yes, Lucy actually getting dirty was one of my favorite parts of the whole thing!  And, she also was able to hold the pea seeds in her hand, and then drop them in the trench we made for them while I just supported her arm to keep it steady. 

I guess maybe what I'm saying is that there is just so much pressure to have a big freaking blast in the summer, and I've had enough of it for now. We go to the pool every single chance we get, which is most days, and not only does Lu LOVE it, but it is good for her, so that is a thing we can do and I have gotten pretty adept at the process of getting her there and into the water, even if no one is there to help me. The pool is the only thing I will lament about the end of summer. (And getting to go for walks with my Mom in the evening.) I miss it desperately all winter for both Lu and myself because I too love to swim.  Anyway, we are at least lucky to have that so easily accessible and lucky that Lu enjoys it and it makes her happy.  But, I will still not be sad when the pressure to go outside and have the time of our lives doing super fun and cool summer activities has passed.  I guess this year I am a Grinch about summer which probably means I should only allow myself to be half as Grinchy about Christmas this year. Thanks for listening to my whining!

The Diving Bell and the Butterfly: a book report for grown ups

I just finished a book titled, "The Diving Bell and the Butterfly" by a Jean-Dominique Bauby.  The book also became a "major motion picture", and was published in 1997, so many people may already know his story and I am just now catching up, but I wanted to share a little about the book and about Bauby, and why I think every able-bodied person would be doing themselves a favor to read is memoir.

Jean-Dominque Bauby was the editor-in-chief of French Elle magazine. When he was 43 years old he had a massive stroke which resulted in something called "locked-in syndrome".  Locked-in syndrome is just what it sounds like: Jean-Dominique was locked inside of his body and the only thing he could move was his left eyelid.  And with his left eyelid he wrote this short memoir.  A partner dictated for him as he spelled out each word, letter by letter, using partner assisted scanning, just like we do with Lucy's PODD book.  His speech therapist created an alphabet grid that he used to choose each letter of each word by blinking his eyelid.  Even if this was a book about how mushrooms grow on poop, I think everybody should still read it simply out of respect for Bauby and his perseverance.  But it is not about mushrooms growing on poop, it is about how his life as he knew it ended and his experiences being confined to a hospital and trapped in his own body.

I was first interested in reading it mostly because of the amazing way in which it was written, but Locked-in Syndrome very obviously has many similarities to what children with Rett Syndrome experience every day.  The main difference being that while Bauby's body did not move, Lucy's never stops, but neither of them have/had any control over them. And both children with Rett and Bauby were and are completely cognitively aware of the prisons that their bodies are for them.  

This book is sad, and funny, and heart-breaking, all within 132 short pages. Bauby viewed his condition with alternating grief and sarcasm, and even with optimism at times.  But he seemed to have a strength that wouldn't allow him to just wallow in his own despair.  One of my favorite lines from the book was in regard to Bauby refusing to wear the generic hospital sweat suits and insisting instead on wearing his own clothes when he ventured out of his room.  His reasoning was: "If I must drool, I may as well drool on cashmere." 

Jean-Dominique Bauby died two days after the French publication if his book.

Here is a photo I just grabbed from Google before the stroke:

And here is after, it looks like he is dictating to his assistant:

Imagine that we didn't have all of the abilities that we do.  Imagine that at the end of a day that started perfectly ordinary, ends with us in a coma.  Instead of always wishing for better "luck", or more of this or less of that, perhaps it might do us all a bit of good to just stop occasionally, and be glad that we have what we have.  Maybe just feel grateful that we can put one foot in front of another, and speak one word after another until we are tired of walking and talking.  I'm sure Jean-Dominique Bauby never thought to himself, prior to his stroke, "Man, I'm glad I am not completely paralyzed." And certainly I realize that if Lucy didn't have the challenges that she does, I would probably take her perfect health for granted.  But I guess my point is just...don't. Don't take what you have for granted. Try to remind yourself every now and then just how lucky you are...and totally read this book. You will be glad you did. 

Not "if", but "when"

Ever since our first appointment with Dr. Sasha two years ago, I have been always on the verge of writing a post about the possibility of a cure for a Rett Syndrome, since she says there will be one. Currently at the Rett Center that Dr. Sasha is the director of, she is running a trial for medications called statins, or cholesterol medications.  She has included only older girls, and only girls who could walk in the first wave.  She explained to us in the spring that by using girls who can walk, she is able to see results more quickly than with girls who are not currently ambulatory.  This past week, another Rett mom shared a link to a video with me of Dr. Sasha giving a speech at a fundraising event recently.  She thanked all of the supporters that have donated and raised funds over the years and she said she was happy that she finally had something to report.  I'm going to include quotes from her speech here, but I will also include a link to my Understanding Lu Facebook page where I posted the video for anyone that would like to see the whole video. I encourage everyone who can to do so!
https://www.facebook.com/Understandinglu?ref=hl&ref_type=bookmark

Here are quotes of Dr. Sasha's: 

"Just like every other doctor and scientist, I do know the cure is on it's way.  We have very solid, robust evidence.  So, we replace the question 'if' with the question 'when'." 

 "Many of the girls who were treated can walk and run up stairs for the first time in their lives."

"Some of the girls who were treated speak words again."

And here is an article with more detailed information on the statins and why they may help:
http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.rsrt.org%2Fabout-rsrt%2Fpress-releases%2Fstatins-suppress-rett-syndrome-symptoms-in-mice%2F&h=EAQGAFCUe&s=1

So, a medication is helping girls walk better and speak again.  I literally nearly had a panic attack when I heard Dr. Sasha speak the words I have quoted above.  I was instantly bawling. I imagine a panic attack might seem like a confusing reaction, and quite frankly it is, and it is why I have always hesitated to write much about my feelings about a cure.  I want it just as heart-wrenchingly, desperately as every other parent with a daughter with Rett, there is no doubt about that.  What throws me into a panic is how quickly my hopes soar higher than you can imagine, and I am terrified of getting my hopes up. It's like a kite that the wind takes away from you and you are afraid that you are going to lose it before you can get it reeled back in again. There are so many, many people that I have encountered virtually and in real life who just go ahead and expect a cure to come, maybe even depend on it as a future reality.  Everybody has their own ways of viewing things and dealing with life, but mine is to expect that Lucy will have Rett Syndrome for the foreseeable future and to work unceasingly to figure out how to make that future as functional, healthy, and happy as possible for her.  And then, if or when a cure becomes part of our reality someday, she will be as ready as she can be to learn how to do things that might then be possible for her, like walking independently and talking, that she just can't manage right now.  

I also feel like it is a delicate situation wherein I want Lu to understand that we want her to be healthy and to not have the struggles that she has, so that she may be able to have a full life some day, but I do not want her to think that she isn't good enough as she is and that all I want is to change her.  She is amazing...I've said that a jillion times...just how she is.  However, I would do anything for her to be able to breath regularly, to use her hands, to walk, to talk, and to eat and drink without choking. But, if she never can, we will love her just the same.  The world won't end.  It already did for a second on February 27, 2012 when we got her diagnosis, but it started again.

I am vehemently against denial, especially when it has come to Lucy and Rett Syndrome.  It is what it is, and I don't let myself or anyone else in Lucy's life hide from her reality.  I guess maybe I sometimes feel as if simply assuming there will be a cure is a form of denial in that if you just believe Rett Syndrome will go away someday, then you don't have to feel as worried about it right now.  But there is no guarantee at this point.  Not even those miraculous words from Dr. Sasha make it a guarantee in my mind because something may still go wrong.  They might discover that it actually can't be cured.  I don't know what will happen and that is why I am so adamant that Lucy be kept healthy, and educated, so either way the question of a cure goes, she will be fine. I still just can't bring myself to say "When there is a cure." I just can't. If there is one someday, and if it works, then I will let myself believe it whole-heartedly.  For now, I will just wait and see.