Sunday, September 29, 2013

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!

Wednesday, September 25, 2013

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.

Thursday, September 19, 2013

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 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!

Sunday, September 8, 2013

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

Friday, September 6, 2013


Tuesday was Lucy's first real day of preschool. It went well and she loved it! I will elaborate some other day!

Thursday, September 5, 2013


We got home from New York late Sunday night. There was mostly good news and I started a post two days ago and it didn't save so I have been dragging my feet to start another. Sometimes, I just need a break from talking about Rett Syndrome! Anyway, the good news is Lu is NOT having seizures. The staring spells are still just that, zoning out. Her hyperventilation is "frequent but not severe" Dr. Sasha said. This irregular breathing is not effecting her oxygen level. It just seems to maybe be distracting to her and effecting her ability to focus as well as she usually does. Her O2 level did drop to the low 80s a few times in her sleep, but it came right back up on its own. The solution to the hyperventilation is an increase in her Lexapro (which she already takes for crying spells she was having that are caused by Rett and just a chemical imbalance). Lexapro can help to regulate breathing, but if the breathing is caused somewhat by anxiety also, it will help with that. So we are trying that for a few weeks to see if it helps.

Dr. Sasha said motorically she has just changed a lot in a short time. Her muscle tone has started to increase which she said she doesn't usually expect to start happening until around age ten. She agreed that all of the other things we have been seeing are different, but thankfully (that's a weird way to say it I think) they are not out of the ordinary. Things will just always change, for better or for worse. And that's all I wanted; to go to New York, have Dr. Sasha look at her and tell me that these changes were common. To us, these changes were devastating, but I thought they were probably nothing out of the ordinary, but I didn't know for sure. So, we just have to, as usual, adapt and move on.

The not-so-great news, Dr. Sasha was concerned with the weight loss and trouble eating. She said that regulating her breathing could help her be able to focus on eating more, but her ability to chew and swallow,which has been declining, will not get better. She said she will likely need a feeding tube in the not-too-distant future. We will watch her weight as she has the Pediasure more regularly and see what happens, but she needs to at least maintain her weight and definitely not lose more. The downsides of a feeding tube are obvious and I know it sounds scary and terribly medical, however, there are many positives that go with it. Lu will still be able to eat by mouth, what she can, but she will be able to get the calories and nutrition that she needs, plus as much fluids as she needs. I will not feel an overwhelming panic/urgency during meals because I know she is only eating a fraction of what she previously could eat, and meals will not need to last an hour or more each time because we will be supplementing with the feeding tube. This is not written in stone and we are just going to monitor her weight and check back in with Dr. Sasha in three months to see what her weight is doing and go from there.