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.  

Summer Freedom

It has crossed my mind many times already this summer what was going on with Lu last summer...a lot and not much of it was good. We were afraid she was having seizures, she started hyperventilating, falling over from sitting, and she lost her remaining hand functioning.  She couldn't chew on her chewlery anymore or even get it up to her mouth, she was losing weight, and coughing and choking when she would agree to open her mouth to try and eat.  She was also falling asleep all of the time, especially at the table and I had to always have the iPad with us to play her music to wake her up and keep her awake, specifically, "I'm Yours" by Jason Mraz would instantly perk her up and put a smile on her face.  I keep thinking about it because she is just doing so, so much better now! We have been trying to figure out the culprit of some daily crying, but that's common and comes and goes and we will figure it out...it's nothing compared to what we were worrying about last year at this time.

We just had three weeks off from therapy and while I always do miss our therapists because luckily they are all great ladies, I didn't miss having appointments all of the time and every day was all ours, we could do whatever we wanted, and/or whatever Lu's mood allowed. I discovered an amazing website, www.artfulparent.com that is just full of super fun ideas for doing all kinds of art with children. Besides the wealth of information, I especially love that the general mood of the site is one that supports very open-ended art, so there is no cookie-cutter end result that generally is boring, and often not all that possible for Lu to complete.  Most of the projects I have looked at are all things that Lu could enjoy with minimal adaptations.  Here is the first activity we tried:

These beautiful works of art were made on watercolor paper with shaving cream and food coloring! It was so much fun, and messy and creative, and Lu did it while in her stander so we were getting some pt in for the day too! Here is a link to this project:http://artfulparent.com/2014/06/shaving-cream-marbling-with-liquid-watercolors.html

We've been doing some swinging of course! 

And playing Mr. Potato Heads! I helped Lu take this picture with my phone and she was tickled with herself.  Her creation is the doctor! She has gotten more interested in choosing the parts using the pages I made for her Tobii. 

And, I found this little book at Ollie's for .99! In the back there was flash cards to cut out to practice matching the words with the pictures in the book because it is a "picture reader". We have read it a few times and so far Lu has correctly matched the words: tree, sun, house, stairs, and door with the pictures in the book!  We've been doing this activity while cuddling on the couch so it is a difficult position for her to make her usual head movements for yes and no, so I ask her to look at me when she sees which word she thinks matches.  I show her three choices, one at a time, until she looks at me.  When it is not her choice, she has even started closing her eyes so as not to look at me, but when it is her choice, she looks directly into my eyes.  So, we've been getting a little school work done here and there too.

And this last picture is of a travel-sized Hungry Hungry Hippos that I got at Kid to Kid over the weekend.  We haven't played it yet, but it have high hopes for the simple adaptation I added to it so she can easily hit the lever and gulped up the marbles! 

So, we have been doing some fun stuff.  Besides these things, there has been some bike riding, lots of picinic so and a TON of swimming! It's been a good summer so far! 

In case you were wondering...

In case you were wondering, if you happen to be in a public place and you encounter a person with a disability, it is not good manners to blatantly stare at them, regardless of your age.  If you notice your child staring rudely, perhaps you could muster up a little courage to parent them, and set an example of how to behave when a person who might be "different" has entered the room. 

In case you were wondering, some acceptable next moves when you notice your child (or yourself) gawking is maybe to just say hi. Maybe ask the person's name, how they are doing...the usual stuff. Children will not learn how to treat others appropriately if their parents and the other adults they look up to do not show them how to.

In case you were wondering, if you happen to encounter a child with a disability out in the community and you notice that they are having some difficulties, again it is not helpful, kind, or polite to just stand oggling  them as if they are an attraction at the zoo. In case you were wondering, it would be absolutely okay to ask if they need anything. Again, and today I feel like I just can't say this enough, if you do not choose to offer any assistance or kind words, the next best thing is to NOT just stare at the child and her poor Momma who is just trying to take her child out to story time at the library without feeling like they are on display. Just go back to what you were doing and discreetly encourage your children to do the same.

In case you were wondering, Lu and I had a tough time at the library today. We haven't made it to story time much lately because she has been crying a lot and when we got there today, on time even, she started to cry. We still went in to get situated and get her Tobii set up because she wasn't doing much more than just fussing a little at first. I thought maybe she would get interested once story time actually began.  Unfortunately, as we waited for the librarian to come in, she just got more and more upset.  She may have felt uncomfortable about the ten or so children and their caretakers who stopped what they were doing as we came in and, you guessed it, just stared at us. I sure did. I made many attempts to engage the children closest to Lu in order to break the tension a little and maybe help Lu to feel better, but nobody would talk to us and not one single parent made any attempt to help. Not one single parent tried to assist their child in interacting with us, and not one single parent discreetly (or otherwise) corrected their child for gawking at us. 

In case you were wondering, it's situations like this that make me not want to leave the house ever. What in the hell is wrong with people? I talk to Lucy all of the time about good and bad ways to treat others.  We talk about all of the differences there are among people in the world and how it is okay and good for people to be different.  And that everybody is different in some way.  Because of past times of people staring we have talked about how rude it is. So, she was already feeling upset about something and then her so-called peers made her feel even more uncomfortable. 

I did my best to smile and stay positive. I did my best to help Lucy calm down and prepare to enjoy story time.  Nothing helped.  We left before the story even began. She cried half of the way home, and then was okay. When we got home I asked her if something hurt and she said no. I asked her if she liked going to story time and she said no.  I asked her if she had been feeling nervous and she said yes. She even seemed a little scared when we got into the elevator, which is unusual because she has ridden in plenty of elevators, including the library's and it has never bothered her.  It seems like a possibility that her anxiety is increasing, which is a very common symptom with Rett Syndrome. 

In case you were wondering, I'm totally pissed, and broken-hearted. It breaks my heart that people can be so stupid to each other.  And it pisses me off.  And it enrages me that Rett Syndrome might be reinforcing the obstacle of anxiety that we already deal with on a mild level.  Isn't it enough that I have to worry that Lu is going to cry whenever we go somewhere without also needing to worry about how others are going to react to her? 

Society is stupid, people are rude and inconsiderate a lot of the time, and home is the safest place to be some days. Yeah, I wish I were a hermit and that it was acceptable to be one...in case you were wondering.

Chad sent this to me one day when I was out getting groceries because she was upset.  This is her standard upset, about to cry face.  This is what she looked like at the library today.  How could people not feel compelled to at least be thoughtful enough to give us a little space and not...just...stare...at...us?  Let's teach our children kindness, and lead by example.