33

Today is my 33rd birthday. It surprises me to realize how very young that is. I feel much older a lot of the time. Physically, mentally, emotionally...I just feel aged. I have discovered myself to be more vain than I ever thought I would be as I grew older. Lu will be four in May and I still am working at losing pregnancy weight. Sometimes I work very hard to lose it, and sometimes I seem to work very hard to keep it. But I hate that I still have it. I hate my chin(s). Sometimes I look at myself in the mirror and I just look haggard...rundown...whooped. I don't mind wrinkles or the white hairs that have been popping up recently. What I mind the most is that I mind any of it! Get over yourself Julie! People age, quit crying around about it! So that's my mission most of the time, just to accept that I'm 33, not 23 anymore. I struggle with that mission.

Besides the nuisance of my vanity, I obviously have more important challenges to work through in a day. And even with those, I like to try and remember how much good I have in my life. First and foremost, not everybody is lucky enough to have a partner as amazing as Chad. We have been together for ten years...so he remembers when I was 23 and still loves me at 33. Not to toot our own horn, but as a team, Chad and I are a force to be reckoned with. We have accomplished a lot in these ten years and I am thankful every single day, even if I fail to always tell him so, that we found each other and have stuck together through all of the trials and tribulations we have faced. Because Chad goes to work every day to support us, we have a lovely new home, and everything else we need in life. Plus, Chad's work allows me to stay home and care for Lu myself, which is more important to us than anything money can buy. We have everything we need and who could ask for more?

This is Chad and I at 23, when we met working at Dunhams. We were dressed for Halloween, if that wasn't obvious! This is one of my favorite pictures of us, even though it is a little weird! It reminds me of when we fell in love.

I am grateful for Lu, each and every day. She is literally the most amazing person I have ever met. Even though Rett Syndrome totally sucks and makes her life so hard, there are still so many things to be thankful for. Since leaving school and getting her feeding tube, she is healthy! She has never had pneumonia! So far her spine is staying straight and not showing any signs of scoliosis, which doesn't mean it won't, but for now we can be glad it's not. She hasn't had any seizures yet. I am grateful that even though Lu has Rett Syndrome, at least she has it in the year 2014, and not 50, or 30, or even 20 years ago when so much less was known about it. I'm grateful that she has not shown any signs of having long QT syndrome which effects her heart working properly. I am grateful for technology, specifically Lu's Tobii, which allows her to communicate with us every day. I like to say, "Rett Syndrome sucks, but it doesn't suck as much as you think it will." So far that is the case anyway, and Chad and I try to remember that as often as possible.

When I was 23, if someone had told me that in ten years I would be living in Drifting, behind Mom and Dad, I would have said they were totally nuts! I have never had any intention of moving back to this area. But here I am, and I am glad. We are surrounded my family that love us and care for us, and support us, and I feel so lucky to have them in our lives. Here is a quote that I wanted to include in my last post, but forgot. It is also relevant to this one though:

"Any idiot can face a crisis- it's day to day living that wears you out." -Anton Chekhov

I let the day to day get me down sometimes, but then I try to remember all I have to be thankful for, and since it is a lot, I can usually cheer myself up. So, here's to turning 33 and staying alive for one more year! 

(I don't have a current picture of the three of us together! I'll have to work on that!)

Sights and Sounds of Rett Syndrome

I have a confession.  Rett Syndrome manifests itself in a wide variety of sounds that constantly come bullying their way out of Lucy. CONSTANTLY.  Except for when she is asleep. My confession is that sometimes, often toward the end of the week, when I have been with Lucy all day, every day, and sometimes at night when she wakes up for no clear reason, I feel as if I may just explode, or cry, or scream if I hear  Rett Syndrome force Lucy to make ONE MORE SOUND. It's ironic, since she can't speak, that Rett never stops making itself heard. 

For those of you who have never met Lucy, or any girl with Rett Syndrome, or who just haven't been around Lu much, I'd like to share with you some of the sights and sounds that Rett Syndrome plagues Lucy with each day. Again, keep in mind that the moment she falls asleep, she is free of all of these things. They just go away, and then return immediately upon waking.

Look at her here, at peace:

But here are some things that happen while she is awake:

1.) Never ending hand flapping. This will likely become hand wringing someday, (and has been in the past) and eventually maybe just a pair of clasped hands, but for now they never stop flapping and tapping. Because of this she sometimes pulls her feeding tube out during a feed, so we have to be very careful of where we put it and her. She smacks her own face by accident sometimes, but the most frequent victims of the accidental smacks are me and Chad, or whoever may be holding her. 

2.) Near-constant breath holding. When she holds her breath, it is also completely involuntary, like her hands. Her face can become very red, she arches her back, and contorts her body, and gasps, and makes a grunting sound similar to what it sounds like when she is trying to poop. So, she does this all day long. 

3.) Tooth grinding, also near-constant. Imagine someone running their nails down a chalkboard beside you all day. It makes me feel like that. And she is grinding one of her front teeth down more and more each day.  The tooth grinding plus dystonia causes Lu to hold her bottom jaw cooked and grimace sometimes. 

4.) Choking, gagging, coughing. This happens when she is eating by mouth. We still always have to be prepared for the possibility that she will choke or gag and vomit. A bowl still always sits near us at the table for catching puke. She has actually learned to request "mixing bowl" on her Tobii when she chokes or cough on something. 

5.) Hiccups. She gets hiccups often during her feeds. Sometimes they make her puke. Often they sound like fireworks exploding in her belly. 

6.) Similar to Lu's hand flapping, sometimes she has a low sort of moan/whine/cry that she really can't control either. Some days it is also nearly constant. ,

But, I am used to all of these things.  They are simply a part of Rett a Syndrome. As each of them has joined Lu's list of symptoms, we have checked with Dr. Sasha to make sure they are common, and "normal", and they are. And I barely notice them. But sometimes, when I am tired, or like I said, it's the end of the week and  I have spent five days in a row on my own, they begin to wear on my nerves. I can only imagine how they make Lu feel at times...no, I cannot imagine.

Now, on top of those things, let's throw in that Lu can't walk and now weighs an amazing and triumphant 35 pounds. It is getting increasingly difficult to carry her around all day. I just feel like a struggling, tripping, exhausted fool for most of the day as I transfer her from one chair to another.  To the floor, to the potty seat, in and out of the shower, in and out of the van, in and out of her wheelchair, in and out of her stander or walker.  And then, add to that the times when she is also hooked up to her feeding tube and I have to drag that along with us. I painfully step on things that I can't see, or I trip and nearly have a heart attack. Frankly, I just get frustrated with how awkward every single maneuver that we have to complete can be. 

I hate when I write this kind of post. I know it is kind of, "Boo hoo, woe is me, whaaa!" I know, and I try most of the time to focus on the positive, but the fact of the matter is that there are just some really un-positive, downright miserable parts of Rett Syndrome. And I can't fix them or change them. I can't program the crap out of Lu's Tobii to make her quit grinding her teeth. There isn't a known therapy in the world, to make those hands stop flapping. So many things about Rett just "are" and we are supposed to deal with it and accept it. 

And Chad and I do a bang up job of that I think, but usually once a weekend I just need to escape for a couple of hours. The things I doing during my escape are never anything exotic, or exciting, or even "just for me". My escape usually includes getting groceries, stopping at the library, and maybe sometimes picking up a prescription. Occasionally I might have a special lunch date with my friend Diana and then we go to Goodwill and that is just for me, but those don't happen very often. So, back to my confession. I have said that those sights and sounds just wear me down eventually, and they do. One statement that I have never said out loud, even to Chad is this: I just need some time each week, no matter how short or mundane, to not see and hear Rett Syndrome. And that is the second part of my confession. I teared up just writing it because I feel so guilty to think and feel that way. I know that it doesn't not make me a bad mother to feel that way, but I often struggle with rational thinking over emotional thinking. But, it's not Lu I need a break from, it is just Rett and every freaking thing that goes with it. 

I learned the term "enmeshed" at my last job as a family-based counselor. It means too close. A relationship that is just too close. I imagine Lu and I are enmeshed, but I don't plan to change that, or even know if it is possible, or even want to.  We have to be; I am her legs, and her hands, her arms, and her voice. It is hard to not get enmeshed when a person relies on you so completely. I miss her when I am gone for two hours. I worry that something might happen to her while I am away. But...I must get away, if even for a short time, just to regroup. 

I can't remember if I have shared this picture before, if so I apologize for sharing it again, but I just love it. 

A Few Weeks in the Life of Lu

I have two posts started and I just haven't been able to actually finish anything in a few weeks. So I thought I would just do a lazy picture update of all that has been happening around here lately.

The handsome Weber boys came to play! From left to right is Miles, Chase, and Isaac. Yeah, Chase and Lu are holding hands! Lucy had so much fun!

Lu and I made homemade pizza! And I took photos of the whole process so she could put them in order, and then I made her a book about it for on her Tobii so she could read about how we made the pizza. She loved it and loves reading her book often.

We have started working on beginning sounds and Lu correctly matched all of the above letters with their pictures using eye gaze and her head to indicate yes and no.

All of the "Hubler" (Parks and Gregory) cousins came over for a group photo session. It was fun!

We took Lu to Sesame Street Live and she loved it!  

Ava was there too and then we all had a lunch date afterward!

I made a page on Lu's Tobii this week so she can choose what to put on a Mr. Potato head and here was her first creation! 

So, there has been school time, fun time with friends and cousins, and play time. She got a little cold, probably from the Sesame show, but it didn't get bad. She is weighing in at 35.2 pounds now! That is a gain of about 7 pounds! She has been talking up a storm with both her PODD book, and her PODD on her Tobii. We have just been busy I guess! 

The Great Bike Giveaway

This morning I entered Lu in a contest to win an adaptive tricycle! We have been talking about getting her one, and how to get her one for quite some time, but they are very expensive, so we have just been trying to figure out how to make it possible for her. She will often say on her Tobii that she wants to ride a bike, so maybe this will be her chance! Below is a link to vote for her; it is super simple and we would appreciate her link being shared far and wide to increase her chances! Thank you all in advance for voting!

https://www.friendshipcircle.org/bikes/2014/03/lucille/?s

Healthy and happy

I'm not sure if you can tell in her face as much as I want from these two pictures, but Lu has gained over 5 pounds since the top picture was taken. January 1st. If it is not as obvious in her face, take a look at her thighs. In the top picture she is wearing size 4T leggings and in the bottom picture she is wearing a pair of size 6x legging-type pants! I had to find her bin of bigger clothes. She not only has not gone up a size in the past year and a half, but she had actually grown back into 4T clothes. So I was a little emotional when I was getting to look through the bin of bigger clothes. It's such a relief to not have this sinking, dreadful feeling in my stomach when I think about clothes for Lu. Putting on her clothes each morning was one of the biggest alarms for me that she was losing weight as her clothes just kept getting baggier and baggier on her. 

But now she looks so plump and healthy! Everyone who sees her almost immediately comments on how her face is fuller.  I have noticed her hair even looks healthier! In the bottom picture Lu is practicing sitting on her own without falling over (and doing awesome!), AND helping to fold laundry at the same time! We have even started trying to work on scooting on her bum again. All because she has the energy and sustenance to thrive. 

Just Do It

Linda Burkhart, the wonderful woman who has trained us to use the PODD, told me a month or so ago about a version of the PODD that Gayle Porter (the creator of PODD) took a year to create for use on a high tech device, such as Lu's Tobii. It has been created in a different software than what I am used to using on the Tobii. The new software is called Grid2 and I am learning what I need to learn to use it. You can download a 60 day trial version of the things you need to see how it works for you. Visit this link: www.sensorysoftware.com     What you will need to download is: a trial version of the Grid 2 software, a trial version of the PODD grid set you want to use, and a trial version of a license to use Mayer Johnson's PCS symbols (having Boardmaker will not help you).  We have been using the trial version for about a month now and it has been amazing! And, the Intermediate Unit has purchased the software for us to use, we are just waiting for it to arrive, so that's an option to keep in mind.  Here is a link to where we purchased the three pieces of software that we needed in a bundle: http://www.zygo-usa.com/usa/index.php?page=shop.browse&category_id=151&option=com_virtuemart&Itemid=11

Just to clarify, when I say, "new version", it is still the PODD! It is just a little bit different, and way more efficient than the homemade version people might be using of the PODD on the Tobii.

And here are some awesome things Lu has said with the Grid 2 version of the PODD on her Tobii:

Let's go, in the car, visit, pappy"

"I don't want to do it, let's do something else"

"I want, our, garden, yummy"

"Lucy, yours, play, music, loud, yours, loud, song". I asked her if she wanted me to play music on my iPad for her and she said yes. I asked her if she wanted to hear our favorite song, which is "I'm Yours" by Jason Mraz and she said yes with a big smile and squeal!

"Have, pain, my, tummy, tired, I don't like it" she said this at supper last night. I think she was just full, but we vented her and she seemed ok, but wow! That was like a sentence! 

I have a confession to make: over the summer, the paper book and I had a falling out. I have finally come to realize it was not the book's fault, or my fault, or Lu's fault. It was just stupid Rett Syndrome's fault, as usual. I have mentioned that Lucy had a summer with a lot of changes. Her tone increased quite a bit, so she has become more stiff. She developed some dystonia in her mouth, and head, and neck which causes her to move and sit differently. She started hyperventilating, and now it has become breath holding. These are all common symptoms of Rett, I realize now. At the time, we were frantic about what was happening to her, and why was it all happening at one time. It was like she was under attack, and I guess really she was. 

So, we didn't have her Tobii yet and all of these changes were making things very difficult for Lu to move her body in the ways she was used to. I am sure she was also confused and terrified, as we were just watching her, I can't imagine what it felt like to be her. So, we still carried the book everywhere, but Lu used it very little. Occasionally she was able to get something out. One time it was that it was too hard, and she wanted to do something else. Quite honestly, I was just so mad and confused, I didn't really promote the book's use like I have always done in the past. I kind of acted like it was a jerk that had betrayed us, when in reality it was of course Rett Syndrome that was the jerk, because it always is.

So, fast forward 6 months or so. We have the Tobii, it's great, but Lu is most definitely not relaying messages with the ease and fluency that she did with her paper book on the homemade PODD that we have on the Tobii. While talking with Linda about the new Grid 2 software, she suggested that I add a button to Lu's Tobii where she can ask to use her book. And low and behold, Lu wants to use her book! She does still love it just like she always has, but now she can choose between the Tobii or her book and she is doing great! 

A second important thing I have discovered is that she and I have both adjusted to what her body does now, and she can do her yes and no head movements just like before...well, it isn't just like before exactly. It takes longer, her yes needs some practice, but she's doing it and I understand now that while it looks difficult for her, as it did back in the summer, it's just how it is now, and she still loves using the book, and she wants to use it, and tells me so often.  I just forgot to "Be Zen".

Here are some awesome things she has said with her book:

 "I think it's, you, fun, not, school"

"I want, want, hug, it's about now"

"Let's go, in the car, you, me, can't, it's about now, I love you." She said this on a snowy day when we had been planning to go to the library, but it was too bad out!

Earlier this week her slp was finishing up their session and Lu said she wanted to use her book, and she told Roxann, "Goodbye" 

The final thing I want to say goes back to the title of this post, "Just Do It". I see people post often about just not knowing what to do with the PODD, it's not working for them, they need to learn it better, etc... My piece of advice on how to be successful with the PODD is to just do it. Anyone who has been trained in it officially has been trained by Linda, and you just need to do what she says. That is why Lucy succeeds, because I went to the training, listened to what she said to do, and we do it. As I have just confessed, we have had bumps and set backs along the way, but nothing and nobody is perfect. When Dr. Sasha said this would work with Lu, I did not doubt her. I personally believe that if Dr. Sasha says something, then it must be true, so I went to the training with that mindset. And then after being trained by Linda and learning about Gayle Porter, I have come to have the same confidence in them: if Linda and Gayle say it, it must be true. 

The PODD is Lucy's language and it must be with her, and available to her at all times, whether it is in the form of the Tobii or the paper book, or both. She NEEDS to know that she can tell me something and that it is important to us to hear her. She NEEDS to know that we believe she has things to say, and that we believe the PODD is the best way for her to say them. If you don't believe that, and maybe some people don't, then it will not work well for you, just like it wasn't working for us when I lost faith in it. But, Lucy has told us such amazing things using the PODD as her language, that I do believe it is best for her. 

It just makes every day so rewarding for all of us when she can talk to us. Yesterday she asked for mustard on her cheese at snack. At supper, I was giving her some tiramisu for dessert, but was not having any myself because I hadn't eaten anything yet, and she said she wanted to use her book, and said, "we have to share", and then "more, please"! What a sweetie and manners too! So, the PODD has changed our lives and continues to do so, because we just do it. We just do what Linda taught us, and it works. And Lucy can tell anyone she wants, anything she wants, anytime she wants.

Mid-winter Slump

There are several versions of the stages of grief, some versions have more stages.  It is generally used to explain a person's grief when someone dies. The idea of stages of grief can also be applied to diagnoses of chronic conditions...like Rett Syndrome. For myself, I don't know that I ever experienced denial. Shock yes, but denial, no. Anger? Oh yeah; then, now, and I'm sure many more times in the future. "Depression and Detachment", unfortunately, yeah. I don't bargain. And I don't try to find "meaning" in why this has happened to Lucy, because I don't believe there is a reason. It occurs randomly. I would say we started accepting it long ago, however, I yo-yo through these stages all of the time. At the end of the month it will be two years since we received Lucy's diagnosis, so for the most part, I would say I am generally residing in the "Acceptance" stage and we are getting on with life. 

But, sometimes I am still filled with rage. Every once in awhile I am shocked again that this is our life, and that this happened to our daughter. And then sometimes I am just sad. I am having a period of sadness right now that is making me pretty glum. I'm sure that the fact it is the middle of February and Lu and I barely leave the house right now is contributing a great deal also, but I'm just feeling blah. And sometimes my emotions mix a little anger in there just for good measure.

I wanted to share a surprising revelation that I have had in the past month or so. Two different ladies that I see often were reading my blog. Both of them commented on feeling surprised when I talk about how hard of a time I have sometimes with just existing in the this world of Rett Syndrome and dealing with all that comes with it. They both said that I always seem to be handling everything so well, and they never would've guessed how I struggle at times. I guess it is good that I present myself in that way, and I guess I do manage fine most of the time. The thing is, when Lucy is awake, the only I option I see is to be brave and strong and "with it" for her. She does not need to see me (or anyone else) cry about her. That is not functional, or helpful. She deserves better. But, the other night, after she went to bed, I cried and cried. Just because I have been feeling sad. 

I read an article a few weeks ago, or maybe a blog post, by a mother whose daughter had died suddenly, weeks after birth. Her article was about how eventually the people in her world seemed to think it was time for her to "get over it". They were tired of her being such a downer, basically. I have never felt that vibe from any person in our life, and for that I am so grateful. But the fact of the matter is, I will never "get over" this. That poor mother will have her daughter's absence as a constant and painful reminder of what happened to her, so how could she ever get over it? I have Lucy's presence, thankfully, as a constant reminder that Rett Syndrome exists. Chad and I always say, at least she is here with us. Maybe because death is final, people can move through the stages of grief and hopefully remain in the acceptance stage in the end. The diagnosis of a chronic condition is not final, it is continuous and I think that is why I slide in and out of the stages. 

Dr. Sasha calls Rett Syndrome a moving target. So, when we think we are getting a handle on one symptom, something else pops up that we need to adjust and adapt to, and we do, but it just sucks. I have thought maybe this is why I have been feeling down in the dumps. Because of her feeding tube, Lucy now weighs 33.4 pounds! That's almost five pounds she has gained so far and that is wonderful and amazing, and a relief, and makes us so incredibly happy! But...then I think how will I carry her when she gets too big, how will we do things that we do now because I can just carry her? Because even as things change, even if it's for the better, what will be likely to not change is her ability to walk independently. I guess that is probably a fact at this point. 

I have been wanting to write a post, but I didn't want it to be whiny, and all I have been feeling is whiny. But as I write this, I am thinking it maybe helped me to understand why I have been feeling so sad. Because there is no end to the difficulties Lucy will face. There is no end to the struggles Chad and I will have as her parents. It will always be one thing after another because that is how Rett Syndrome is and I am just letting that fact get the best of me right now. I don't usually let that happen. Rett Syndrome does what it wants with Lucy, but the Shaffers don't generally let it get us down or boss us around. I'll bounce back.

So, I guess I also want to say thank you to all of the people in our life who stick with us, and support us, and always care about us. Thank you for letting me feel sad, when I'm sad, and for celebrating every little accomplishment, no matter how tiny. Thank you for not insisting I "get over it" and understanding this isn't something that will ever hurt less. Thank you for just being with us, and not trying to push us or pull us into what you think we should be, or how you think we should feel, or how you think we should be behave. Thank you.