"Healthy"

I read this article by a father of a son with special needs yesterday. I have read a similar one in the past. Take a moment to read it:

http://themighty.com/2014/08/why-i-stopped-saying-just-as-long-as-its-healthy/

It raises a good point that most people might never even think about, the statement, "as long as it's healthy", but then what if "it" isn't? Life will end? You won't love your baby the same? I realize that it's a statement that is just part of small talk. It's what people say when they are expecting a baby, but again I ask, "What if it isn't?" I think it's a stupid thing to say, and I'm sure I said it plenty of times, without a second thought. 

What I have been having trouble sorting out in my brain is the idea that Lucy is not healthy. Technically, by definition, I guess she's not. Lu can't talk with her mouth, she cannot walk independently, she cannot use her hands functionally, she has to have a feeding tube because her mouth isn't capable of efficiently eating enough food to nourish her body, she holds her breath, grinds her teeth, has low muscle tone, tremors, wears braces on her legs, has chronic constipation, gas, and reflux, and takes a pile of medicine daily. AND, now we are worried about seizures again because Lu has started having almost daily episodes of stiff arms, wide confused eyes with dilated pupils, pale splotchy face, and uncontrollable shaking. In the past ten days she has had 1-2 episodes 8 out of the 10 days. We are going in for yet another extended EEG on September 30th to determine what is happening and if seizure medication is needed. So, just one more point against "health" I guess. 

In my mind, I have such a clear separation of who Lucy is and what Rett Syndrome is, that it guess I don't consider her to be "unhealthy". And when I hear people talking about their relief at how healthy their baby or child is, how they feel like they have won a grand prize, I immediately feel indignant. Like, just because Lucy is not "healthy", I didn't win a prize? Like I don't think Lucy is the most amazing, beautiful, incredible child we ever could've created because she was born "unhealthy"? Once, when we were at the training to learn the PODD, another mother asked me in the restroom if I was a mother of a child with Rett and I said yes, and she said, "Oh I'm sorry." I get why she said it, I'm sorry too that Lucy was born with this horrible, debilitating condition, but I have never, ever once been sorry that I am Lucy's mother and as soon as she said it, I felt like she also socked me in the gut.  I am sad all of the time that Lucy's life has to be so hard for her and, that there is so much that just isn't possible for us as a family, but I never feel like I didn't win just as big as every other mother I meet. 

Lucy is Lucy. She is a whole person whose mind, and heart are 100% healthy. Rett Syndrome is a condition that makes her body not work, and in essence makes her "unhealthy". I've said this before, but I have been thinking about it a lot, because Rett Syndrome is not all she is, it is not who she is, she just has it.  It's an obstacle that we have to overcome each day. But in spite of it, her person, her essence, all that she is comes shining through all the time. That's why I guess I don't think of her as "unhealthy" on a regular basis, I just think of her as Lucy; my daughter who loves to cuddle, and play babies and Mr. Potato Heads, and read all kinds of books. My daughter who loves to swing, and ride her bike, and who especially loves to swim. My daughter who loves cheese, and Mulan, and the Magic Treehouse books that she and her Daddy have been reading.  My daughter, the artist:

(Fingerpainting)

The author:

(Lu used the alphabet on her Tobii to "write" this.)

The beauty:

It just so happens that she also has Rett Syndrome. 

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. 

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. 

A big girl: The importance of age-appropriateness

Lucy isn't a baby anymore. She is a big four year old girl. I imagine that since her physical abilities have not progressed much past that of about an 18 month old, it is easy for others to categorize her as a baby. Literally, the last motor milestone that Lucy reached was learning to stay in sitting when she was about 7 months old, and even now that is not always as consistent as it once was. And, as a big four year old girl, Lucy has developed very reliable yes and no movements with her head. She uses these movements every day to answer questions. In addition, of course, to using her PODD and Tobii to makes statements, ask questions, etc. 

We don't read baby books to Lucy anymore. We read books for kids her age, and point to the words in the leveled readers to help her start to learn to read. I have been reading beginning chapter books to her for months.  Lucy doesn't play with baby toys anymore either. Admittedly, it is a mind-boggling task to figure out ways for her to play and toys she will enjoy, but we don't just fall back on baby toys because those are what she can (sometimes) physically manipulate. The other day we played Hi Ho Cherrio with an iPad app that has the spinner for that game and all she had to do was touch the screen to "spin" it. We play Mr. Potato Head using her Tobii, and baby dolls using her Tobii or PODD book. She loves to fingerpaint and color. She recently fell in love with My Little Ponies. We do a lot of things, but I strive always for those things to be age-appropriate. Even though Lucy's body doesn't let her do the things other four year olds do, we need to ALWAYS, ALWAYS remember that her mind is just like any other four year old's. She knows she isn't a baby, and she knows when people are treating her like one. 

Which leads me to a revelation I recently had that I'd like to share. A way in which I have been treating her like a baby and allowing everyone else to treat her like a baby is by just passing her around, to be "held", without hardly ever consulting her! How could I? That is what you do with a baby. Now, keep in mind, Lucy is a total cuddler, but she might not always want to cuddle. She might want to sit by herself. We do ask her sometimes, but not enough. And the thing about being four is that any other mobile, verbal four year old would just be able to squirm away and escape, and say they don't want to sit with anyone right now. Lucy should have that same choice. As I said, she has a concrete, and consistent way to say yes or no to sitting with someone, and she has the right to say so. 

And here are most of Lucy's chairs that she uses throughout the day which also includes the big chaise behind her.  I do often ask her where she wants to sit when it comes to these, but I could still ask more often. None of them are perfect for her, they each have good and bad qualities and it is important to have her in different positions throughout the day to try and keep her spine straight, so I think I take over the choice making in this area a little too much sometimes because of the spinal concerns, which is justified I think, but I could let her choose more. In addition to these there is of course her wheelchair.  We will have a ramp sometime within the next month going into the house so that then her wheelchair will be in here too as an option.  Most often when we are out and about Lu uses her wheelchair, but sometimes it might seem like it's going to be "easier" to just carry her, so we do. But...maybe she doesn't want to be carried.  Perhaps she feels more dignified when she can travel in her own chair, while looking like a big girl. 

I think overall Chad and I treat Lucy like she is four, just this area of where she sits, and with who, and when needs to be readjusted.  As usual, we are responsible for changing the way others think about Lu.  I think most people in our life have come to understand and believe that she is not cognitively impaired and that she is smart and understands as much as any other child her age.  I just want to implore everyone who knows Lucy or any other child with significant physical limitations, to not let what their bodies CAN'T do mold your ideas about what their brains, and hearts CAN do. 

This is Baby Lucy...

And this is Big Girl Lucy. Let's not confuse the two.