Busy girls

Both Lucy and I have been busy girls lately, which is my excuse for neglecting my blog. As I have said, Lu uses a version of the PODD on her Tobii. It is incredibly helpful as a visual language that she already knows, but I have been feeling that she needs a more advanced version of the PODD, like the paper version we had made for her in the spring.  The version she uses on her Tobii right now has 12 buttons per page, but she was using 20 per page in the paper version.  Unfortunately, there isn't a Tobii version of the PODD available as of now with 29 buttons per page. Dr. Sasha's speech therapist in New York said another mother is apparently working on this version, but she doesn't know when it will be done. I have decided to start working on the new version on my own instead of waiting for someone else. To get it done. And, that is why I have neglected my blog. Usually in the morning between Lucy's bottle of Pediasure and her breakfast I have a cup of coffee and that's when I can get a blog post in, but I have been using that time to work on the PODD. So, here is a condensed, pictorial synopsis of all of the amazing things Lu has done recently:

Lu has gotten her first chore. She pulls her dirty laundry behind her walker in a clothes basket that is velcroed to a scooter board. She is so proud to be doing an actual important job that helps out the household! And she gets practice walking!

Lu got two new fish, Little Bluie, and Scooby Dooby Doo!

Using her hand cuff, water colors, and masking tape, we made this beautiful painting of the letter E. (That's the letter of the week at preschool) Lu chose all of the colors using her Tobii. It was a lot of fun.

Also using her Tobii, Lu designed her first jack-o-lantern and she and her Daddy carved it. I have to add two pictures of this because they are so cute!

Lucy was Elmo for Halloween! We had a party in lieu of trick-or-treating

Lu had a ton of fun with her cousins and friends! It was a good time.

And the grand finale: several times this week Lu has said with her Tobii, "I have to pee" and then I take her to the potty and and she pees! And today at breakfast she said, "panties, me" so we sat on the potty and then [Lu] put panties on. The picture above is of Lucy coloring a Halloween picture, while wearing her panties which she didn't pee in and waited until I took her to the potty to pee, after about 45 minutes of wearing them! She was so proud of herself and of course we were so proud of her too, but the look on her face brought tears to my eyes. 

So, that's what we gave been up to. I apologize to our faithful readers for my slacking. I might not improve on it for a bit though, so bear with me.

The wide open air

Here is a beautiful picture Chad made for Lucy at my request:

It is a page from "Oh The Places You'll Go!" By Dr. Seuss. Chad has been getting more and more into art in the past couple of years so I asked him to make this picture for Lu to hang on her bedroom wall and he did an amazing job! Here's a little story about why I wanted this page in particular. 

This was the first book I read to Lucy and I started reading it in the first week we were home from the hospital after she was born. In that first week I was of course emotional as new moms tend to be with all of the hormonal upheaval, and then the added distress of Lucy not being able to nurse really had my tears standing at the ready for any little thing to set them off. The page before this page says:

"You'll look up and down streets, look'em over with care, and about some you will say, 'I do not choose to go there.' And you might not find any that you'll want to go down, and in that case of course, you'll head straight out of town." 

And then comes this page stating, "It's opener there, in the wide open air." (Sheesh, I'm tearing up as I write this!) As I read that to teeny, Utiny, less than a week old Lucy, I cried each time at the mere thought that my brand new baby, fresh from the oven, would leave me some day.  I simply could not bear it! But, as I read it to her, I also assured her that it most definitely is opener out there in the wide open air and I would not ever keep her from it.

Fast forward 21 months and we receive Lu's diagnosis. We had read that book to the point of near memorization, but after we received the diagnosis of Rett, I couldn't bear to even pick the book up, let alone read it to Lu.  After some months I tried, and I couldn't. I felt like the book had somehow betrayed me. I believed (at that time) that Lu was never going to get the opportunity to choose where she was going to go in life. I believed that she would never know how opener it was out there. That she would never experience the wide open air. So, I had gone from lamenting the day she would leave me, to despairing over her future of never getting to be free of me. 

 I'll tell you what I did...I sold that book on half.com. The moment it was sold, I instantly regretted it. I immediately felt like now I had betrayed Lu. So, I bought her a brand new copy and I wrote her a note in the front of it. I told her about all of these feelings of betrayal, but then I explained that I had bought her a fresh copy for the new dreams we would have for her. But more important than any dreams I have for her, are the dreams she will have for herself. 

So, I am writing this today because it was the first day that I didn't stay with Lucy at preschool, at all!  Her personal care aide fed her lunch and snack without me being there. I was terrified to leave her there. Not because she isn't surrounded by wonderful people, because she is, but because I do everything. I am the one who takes care of her the majority of the time. I suppose I'm a control-freak about her care and about being the one to do it. But...this is her first breath of the wide open air. If I wanted to be selfish and do everything the way I want to do it, I'd never send her to school or away from me at all.  But she likes it and she deserves the openness, just like everyone who wants it does. 

My big girl.

This kid's face

Look at this kid's face:

That giant smile is because of her Tobii. Here is the page I made for her that caused the smile:

Those are the movies we have that she can choose from and she chose to watch Despicable Me and was so happy. What a little thing, but sooooo huge. Choosing what movie Lu  would like to watch may not "technically" fall under the "medical necessity" umbrella, but I think it should in regard to how it makes her feel mentally and emotionally to make choices so easily and readily.  I made a page also with all of Lucy's classmates at preschool and she can look at the page and say hi to them. Also, that is a tiny thing that is actually huge for her. I've put some books on her Tobii too. Some I found that were already made for eye gaze, two so far I have made myself. Lu can now look at some books and turn the pages again...with her eyes! It has been almost a year since her hands quit being able to turn the pages of books, which used to be one of her favorite things to do. 

Luckily our primary insurance company covered all that needed to be covered in regard to the Tobii. The secondary insurance, Gateway Health, again denied it as not being medically necessary. Fortunately we don't need anything from them, but it is just sickening to me that they could say it is not medically necessary for a person to be able to independently communicate their wants and needs. Again I say, look at that kid's face! She is often smiling, but that smile is because she was able to tell me something; quickly, easily, and accurately. The Tobii is expensive, that's why it took so stinking long to get it here, but I know that Chad and I would pay any amount for the rest of our lives if we had to, to keep that smile on her face and to keep hearing what she has to say. 

A whole new world!

Last Friday Lu and I had a nice girls day out. First Lu saw Mari, for her outpatient pt. There was a wheelchair mount at Easter Seals that had been there for a long time and nobody was using. It worked with Lu's Tobii and they just gave it to us! And then Mari (because she is such a super smarty pants) figured out how to mount it to Lucy's Kimba Spring wheelchair.  So, after pt we went out to lunch at Wegmans and shopping at Target with Lu's Tobii mounted right in front of her to communicate at her will! It was so exciting and she said while we were eating lunch, "I think it's, great/awesome!" 

Lucy has been saving [hoarding/squirreling away] her money in her little purse for months! Each time anyone would give her a little bit I'd put it in her little owl purse and she just would not spend it! Even on vacation, she did not want to buy anything. But on Friday, she said with her Tobii that she wanted to go look at baby dolls. After A LOT of careful consideration, she chose a beautiful Merida doll (from Brave) and was tickled with herself! I made a special shopping page on her Tobii and one very, very special button said, "Stop, I see something I like!" I have always, always wanted to hear her say that! And she said it several times as we walked through the store. It was wonderful! 

Outside of Target.

Her choice!

I'm glad to be me

You don't realize how trivial a lot of life is until a situation arises in your life that puts things into perspective. I never mention it, but often people have worries, complaints, and gripes that really do not compare to the challenges that I watch Lucy face every day. They do not really compare (in my opinion) to what it is like to live with the fact that your daughter, the beautiful amazing child you had so many other plans for, cannot do most of the things her peers can do. For all of the petty things that people whine about I want to say, "Uh huh, but my daughter can barely eat on her own. Lucy can't walk or talk, or hold a crayon.  Suck it up."

And then, there are other people's lives that are so much worse than mine and I am reminded of how incredibly lucky we are that although Lucy's disabilities are severe, she is relatively healthy. She is not dying. She doesn't even have seizures at this point which is great! She is smart and alert and happy. I have a friend on Facebook from Massachusetts who I have never met. Her daughter was originally diagnosed with Rett Syndrome even though she did not have the genetic mutation on the MECP2 chromosome. Last year she found out that her daughter does not in fact have Rett Syndrome, she has Tay-Sachs Disease. The life expectancy of Tay-Sachs is 4 years and she is currently dying. She is not yet 3. And so when I read her posts I think about how lucky we are that even though Lu can't do all of the "typical" things a three year old can do, at least she isn't dying. 

You know what I often think when I see people look at Lucy and I when we are out in public? I can tell that sometimes people (especially mothers) are thinking, "I'm glad I'm not her." I get it. I understand why people would be glad to not be me. And I get bristly about it sometimes by thinking what a luxury it must be to get to feel that way. But I will confess that I selfishly think about how glad I am that I am not my friend from Massachusetts. It's terrible to think that, but I can't help it. And I bet that my friend completely understands that people are glad to not be her. My heart breaks for her and I don't even know her. I hope her daughter goes as peacefully as possible. I hope she and her son can keep themselves together enough to move on a little at a time. I hope I am never her.

The past week

So Lucy did get her amazing and wonderful Tobii last Thursday! And it's totally awesome and I have been wanting to share the sweet and funny things she has said, but she has also been sick for over a week and I am exhausted! She had a fever all last weekend with a lot of congestion and has basically not had a full night sleep since last Monday night. She just keeps waking up over and over again gagging on snot. And then on Sunday night she developed a hacking cough. Tuesday I took her back to the doctor (because we had already been there on Friday), just to make sure her lungs still sounded clear and she threw up all over herself in the car on the way there from coughing so hard. Last night was a little better. It's just a virus, nothing is infected, her lungs are clear sounding, so we just have to wait for it to clear up. Here are some sad little pictures of her in this past week:

She's been napping a lot!

But, even sick she has been doing awesome with her Tobii! We have a version of her PODD on the Tobii so that is helpful as it is an actual language that she knows well enough to make complete thoughts, but she just has to use her eyes! So, here are some of the amazing things she has said in the past week, hold onto your hats:

1.)"I'm hungry, tuna sandwich...so I made her a tuna sandwich!"

2.) "make something, cooking, yummy"

3.)" I want to do what the others are doing, something at school, outside/recess, slide, playground, swing, park" (this isn't as sad as it seems, at "recess" in preschool Cen-Clear doesn't allow the kids to play on the playground because they are too little, I think that's the reason)

4.) We found the I love you button and mom and I suggested to Lu that she tell her Daddy she loves him when he came in the door from work, and she did and he was so happy and then she said, "Just kidding" and just started cracking up! And we were laughing too so she laughed harder and it was awesome because she knew she made a joke!

5.) Yesterday I was getting some paint ready for a little project and she navigated to "I love you" all on her own and then when I told her I love her too she said "thank you"!

6.) Before we went to the doctor last Friday she told me she had a headache and that her back, teeth, and nose hurt.

7.) she has also been telling us to hurry up (which I said she has probably been waiting her whole life to tell me because I tend to be pretty slow), she tells us when she wants "more" at meals and when she is "finished/done", and when she is tired. 

8.) Chad will likely roll his eyes that I am including this next one, but she said it and it was a little startling and weird. She said, "I'm telling you something, it's going to happen, baby, boy, we/us/our"

We have NO plans of adding any babies to our household, however, so I don't know where that came from.

 

So, she's doing great with it and I am just getting started at figuring out the full capabilities of the device. I have started putting some of her board books in so she can look at them and hear the words and turn the pages by herself! It's just going to change our lives, and hers especially!

Bravery According to Lu

A few nights ago, Chad said he was proud of me and my blog and how long I have been writing it.  In November it will be two years since I started writing. I am proud of myself too. Something I am also proud of is in these past two years I have not needed to increase the dose of my anxiety medicine, I have not started smoking again, and I have not once drowned my sorrows in Clarion River Red (my favorite wine). All of those things have of course crossed my mind [often], but my medicine is fine, I don't have time to smoke (among a zillion other reasons to not smoke) and I cannot bring myself to even have one glass of wine in the event that Lu needs me. I must always be alert for her, I believe. So, I have been a person who leaned on vices in the past, but not now, and I am proud to say I have bravely traversed this whole life-changing situation sans crutches. 

On our way home from New York last week, as we crossed the Tappan Zee bridge and were finally leaving the wretched city, I said to Chad that I feel so proud of us for taking Lu to Dr. Sasha and going to the city to give her what she needs. It makes me feel brave and it makes me think of quotes about bravery and what is often said about being brave...I'm a real sucker for quotes:

“I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.” 

― Nelson Mandela

The first time I was told about Dr. Sasha and heard she was in the Bronx I immediately thought, "Uh, no. That's absurd, we are not going there, no way, no how." And now, it's barely an issue, we just get in the car and go, no big whoop. So, even though we were terrified, we did it. That's being brave the quotes say, and I agree.  And I often say that Lu is the bravest girl I know because how could she not be afraid of some things, but she still just carries on. I have been thinking over this past week about what is even braver than that about Lu. What I truly think makes her the bravest person I know is that she is happy, even though she has plenty of things she could be sad about. That is brave. 

“It is hard to be brave, when you're only a Very Small Animal.” 

― A.A. Milne, Winnie-the-Pooh

Lu IS just a Very Small Animal, but she acts braver than most Very Big Animals I know. She acts braver than me to be honest. And, quite frankly, I believe that a great deal of the bravery I muster up each day is inspired by...and demanded by...Lu. How can I wallow in grief when she sits beside me smiling?  I have known people in my life that have been sad about, what appeared to be, nothing. I have been sad about nothing.  But instead of being like, "Oh boo hoo, whoa is me, I can't do things just like everybody else! Wahhhh!" Lucy says, "This isn't how the other kids do it, but I'm still doing it! Hooray!" 

In these two pictures Lu is wearing a baby doll sling I got her on Etsy so she can hold her babies. This isn't how she would "typically" be able to hold them, but it's better than not holding them at all! 

Here Lu is coloring some thank you cards for generous contributors to the "Sometimes it's expensive to be Lucy's parents" fund (which isn't a real thing!). She's sitting in her special chair, using her cuff, and is still happy as pie. 

"I’m not perfect, no I’m not

I’m not perfect, but I’ve got what I’ve got

I do my very best, I do my very best

I do my very best each day

But I’m not perfect

And I hope you like me that way"

-Laurie Berkner

 And this is her usual morning face.

“A kind of light spread out from her. And everything changed color. And the world opened out. And a day was good to awaken to. And there were no limits to anything. And the people of the world were good and handsome. And I was not afraid any more.” 

― John Steinbeck, East of Eden

I often wonder how so much strength and optimism can be inside of such a little girl. Imagine for a moment how we might behave if we were dealt the hand Lucy has been given. What if we were trapped inside of our bodies like she is? I feel certain that I would not be likely to behave well. I realize that life has never been different for Lu and that she doesn't know any other way, but she can see what she cannot do, and she can hear what she cannot say. But, she still gets up each day with a smile and gets on with it. One of the greatest gifts I believe I can give her as her mother is to do the same. 

“What's the bravest thing you ever did?

He spat in the road a bloody phlegm. Getting up this morning, he said.” 

― Cormac McCarthy, The Road