I have something to say!

We finished the PODD training today and the final thing that Linda Burkhart, the trainer, said was:

"Now go home and talk to your daughters."

Even as I write that I am tearing up again, as I did when she said it. Toward the end of the training I was having a hard time keeping it together, probably brought on by the drain of sitting for two days in a row in a training, being away from Lu, and just being away from home in general, but also because this is no small task we are about to take on and it is not a matter of little importance. It is HUGE! A quote that Linda used toward the end was:

"Communication is the essence of being human."

Yeah it is. And right now Lu has her own ways of being able to communicate some things to us, but as she learns to use this program and begins to understand that this book is her voice, she will blow our minds with the things that she will be able to tell us.

As we sat in the training I did my best to latch on as hard as I could to the main concepts behind the system so I can always bring everything back to those ideas. The very most important thing that we and everyone in Lucy's life will have to always, always keep in mind is what I just said above: THIS IS HER VOICE! She currently uses her voice to vocalize and laugh and do all kinds of things, but by saying "voice" we mean it is her way to communicate and this book needs to be with her always. It is not work, we won't take it out, practice with it, and then put it away; it will need to always be present, or it won't work. And it is not a small book, nor is it inconspicuous, stylish, or convenient. But I said to Danielle and Chad that we need to think like this and so does everyone else: we would not duct tape a child's mouth shut for parts of a day because it is easier for them to not talk at those times and not having her book available to her is essentially doing just that.

Linda Burkhart, was trained by the woman who created PODD, Gayle Porter, from Australia. Gayle said that her best advice to us as we begin the process of learning to be fluent in the system so that we can model it and teach it to our children is to
"Be Zen." Easier said than done for myself because I do not tend to be zen when it comes to something of great importance to Lucy's well-being. I tend to be anal, worried, tense, and vigilant. Why she says that though is because it is not something that is going to be taught overnight. It will be a process and Lucy will not just pick this book up once I have it made and tell me things...we have to be patient, relaxed, and not pressure her.

Another key thing I need to keep in mind to help me stay focused as we learn is that the PODD is a "visual language". It is just like learning sign language, or a second language, or even like children learning a first language. It is not just a picture book. It is a whole mind shift, it is not very widely known in the United States either. Linda is the only trainer right now that is certified to do trainings in the U.S. So, when people see me lugging this book around with us everywhere we go, they will not know what it is or why we are doing it, which is a little intimidating to me. But below is a picture of some new bracelets Chad, Lu, and I will wear when we start using the book. We will model for Lucy how to lift up her arm with her bracelet on to let us know that she has something to say. Let me repeat that...to let us know that she has something to say!

Far and Away

Today Chad, Danielle, and I left for Yonkers to attend a training for Lu. For anyone that doesn't know, Danielle is Lucy's speech therapist, and also my cousin. She has been working with Lucy since shortly after she turned one. The training we are here for is to teach us to use a communication program called PODD (Pragmatic Organized Dynamic Display). It is a "low-tech" system using eye-gaze to tell us what she is thinking, feeling, wants to do...all kinds of things. I don't even know all of the things that she will be able to tell us, but luckily we have been working for several months on teaching her to use her eyes to tell us yes and no. I think I have mentioned this before, but she can look at us if she wants to answer yes and will look away for no, and she keeps getting better and better at it.

So, Dr. Sasha has invited her patients' families to this training FOR FREE! It costs $10,000 to have the trainer, Linda Burkhart, come for two days and luckily Dr. Sasha was able to get a grant from a Jewish organization to cover most of the cost, the catch being that we couldn't have the training on the originally planned dates because it included a Friday which is Shabbat, so we are having it on Sunday and Monday instead. I am so very excited to learn all that we can, be able to get started as soon as we can, and to help Lucy talk to us.

But I miss her so much when we are away from each other! It's like a part of my body is missing. I was in a near panic this morning when she left with my parents. I do appreciate the time away where I am able to be "off-duty" and just read and crochet or knit, or whatever I want to do, but I guess I love being on-duty, as it turns out. It is hard and tiring, and sometimes extremely frustrating and stressful. Sometimes at the end of the day I am so relieved that it is finally over all I can do is sit on the couch and zone out to sitcoms. But no matter how hard a day is, I LOVE IT! I would not give up being Lucy's mom and spending all day, every day with her for anything in the world, and I miss her terribly right now. I know she is happy and having fun with Grammy and Pappy, but part of my heart is missing when she is away from me and the only thing that makes it easier is knowing that we are here learning something that will improve the quality of her life.

Apple Pie

I have been feeling lately like I have a lot to say, like I just want to sit and write and write about Lu, but I don't because I don't think I have anything new to say. It's just the same old, same old, but it always seems new and fresh to me. But it's sad and whiny stuff. Thanksgiving was a little difficult because we were around people that don't see Lu often and I was asked about her hands several times, but in nice ways of course. It made me realize though that things change with her and I just go with it, but then when people ask about it I realize how obvious it must be, since I see her all day every day. And what is especially wonderful to me is the way our families love her so very much and kind of gravitate to her and she just LOVES the adoring attention, but being my hyper-sensitive self, I always see the sadness, the hesitancy, and the desire to not say the wrong thing. And I don't feel hurt by any of those things; our families are being kind and thoughtful, I just hate that they exist at all. That I have to see those things makes me sad. Which then makes me think and think, and want to get it out, but I've already said all of the things I am feeling before. So instead, I'm just going to share this picture of an apple pie I made yesterday and if you look at the bottom edge in the center, you can still faintly see where I helped Lucy use her teeny fingers to pinch the crust shut! It was delish and she loved having a little slice for dessert!

Maggie

So, here is our new puppy. We have named her Maggie and she is a cockapoo, which is a mixed "breed" of cocker spaniel and poodle. She was born almost two weeks ago and is in New Castle. When Chad was growing up they had a cockapoo named Cookie, but they always called her "Bub" and he basically seems to measure all other dogs against Bub's perfectness, so we decided to try and find a responsible breeder of cockapoos to add to our family since losing Elmer. I searched online for quite a few days and finally settled on this lady who seemed very caring and the website did not give me the creeps. It was a little stressful because you don't know who these people are or if they are running a shady puppy mill, but I feel confident that she breeds the cockapoos responsibly and has been very professional and friendly so far in our dealings.

We will be able to bring Maggie home in the middle of January. I am excited, but then get overwhelmed with sadness for Elmer too. He was so sweet, and so good with Lucy. I cried so, so hard one night a week or so ago because I just want him back and that is obviously not going to happen. But I think it is nice to have a dog around. And the lady who cuts our hair also made the point that it is nice for Lucy and I to have a distraction sometimes too. She will have curly hair like Elmer I think. I have showed Lucy her picture a few times, and we have talked plenty about Elmer and what happened, so I think she will be excited for a new puppy too when the time comes. I wanted to wait a few months anyway, so this worked out perfectly. The breeder said she will send weekly pictures to let us see how she is growing, so I will share those when I get them!

The Monster At The End of This Book

I have a video clip that I wanted to share, but I can't seem to figure out if it is possible to include a video in a post, but here is a little picture anyway and I will just explain this great thing Lu has learned to do in the past week!

She has her own iPad that her Grandma Brenda got her for her birthday and it has a Gumdrop case on it that is extremely protective so she can use it somewhat on her own. I prop it up on a book holder and she has been enjoying it while in her stander. Our pt, Mari, told me about an app of the classic Sesame Street book called, "The Monster at the End of this Book" which we have and have read plenty, so we got the app. We played it together quite a few times and then one day Lucy was in her stander beside me while I sat at the kitchen table peeling eggs and she was playing this app, but I had her beside me so I could help her turn the pages. But then, after a few minutes I realized that she was turning them herself! I had her arm brace on her left arm because the page turning and activities that you need to finish are in the right side, but her right arm is much less functional that her left arm, so I figured she would need help. But she didn't! And she didn't try to turn the pages until Grover said so!

And then the next day I decided to try it again and this time she was also completing the actives such as touching Grover's belly to tickle him and then touching his ropes to turn the pages, touching boards to make them fall apart, and touching a brick wall to make it fall down, all so she can go on to the next page. So, not only is Lucille May following directions, but she is using her hand, her RIGHT hand at that, to do so! She never quits amazing me! Phooey, I wish I could post the video!

Thankful all year long

Last Thanksgiving I wrote about all of the things I love and am thankful for about Lu. This year I have a whole new list to share, but first, a thought. On most holidays where you are  either supposed to honor someone, be thankful, be holy, whatever, it often occurs to me that it seems silly to make such a special effort just one day a year, when really we should be thankful every single day, not just onThanksgiving Day.  We should always cherish our parents, our children, our spouses, partners, etc., not just on Mother's Day, Valentine's Day, or whatever other holiday you can think of.

I don't mean to toot my own horn, or to make myself out to be some sort of accepting, saintly, serene being, but I do believe that I make a special effort to be grateful all year long for the good things in my life. And I constantly remind myself that things that are less than perfect could certainly be so much worse. Now, just last week I had a mini-meltdown while watching TV one night...I started laughing at some mediocre joke and then proceeded to simultaneously laugh and sob. I get down, I get blue, I get overwhelmed and I get completely pissed. I act cranky, and frustrated, and tense sometimes. I cry, I yell, I snap at Chad, and I lose my patience.

But even on the most frustrating days I am always grateful that I am able to be home with Lu to take care of her myself. Even when Rett Syndrome is causing something especially heart breaking to occur, or I am sick of bottles and medicines, therapies and equipment, I always try to remember that at least Lucy can still eat and drink.  She does not have seizures, she gains weight like she should, and that at least all of those therapies and medicines, and equipment exist to be able to improve her quality of life.

I am not grateful at all for the presence of Rett Syndrome in our lives, but I am grateful to Huda Zoghbi for discovering that a mutation on the gene MECP2 causes Rett Syndrome and because of that discovery a blood test was able to give us an accurate diagnosis. We didn't know anything last year at this time and now we do, so I am grateful for the knowledge, and I am grateful that we have found many wonderful people to help us move on and teach Lucy so many amazing things.

I am grateful for the constant mantra of parents who believe in their daughters: "They are smart, and they are in there." I am so incredibly grateful to Julie Peden, the IRSF representative who has taught me so much, but especially that she was the first person to tell me that Lu is in there. I am grateful that we found her (Lu) in there and have worked so hard to figure out ways for her to express herself.

The truth is, no matter who you are, where you live, or what you do with your life, some days suck and some days rock. What makes me feel grateful is that even on a day that totally sucks, I love my life with Chad and Lucy and all of our family and friends more than I think I could ever express in words. We are fortunate people, and I am thankful for that.

A Sunday in Holland

Today, in her new stander that we are trying out, Lucy helped me make Chewy Lemon Zucchini cookies. She has never been able to be at the counter with me!

Later we colored a picture with some new colors of Twistable crayons that I got her yesterday and with her "universal cuff". The Twistables fit into a little pocket in the cuff and then the cuff velcroes around her hand. I have to first fold a sweatband in half and put that over her hand because her hands are so little and then I can cinch the cuff snugly over that. It's still mostly hand-over-hand, but she's learning a little each time how she could maybe do it on her own someday.