Made a Wish

Claire had a pretty hard time being 4. Just as her sister started to do all of the things that she had lost, the trial for her eye gaze computer ended and she lost her voice for the 4+ months that it took to get insurance approval. Our doctor suggested it was a good time for a Make A Wish to get Claire through so that is what we did. Claire wished to meet Ariel, her kindred spirit that can't speak and has wobbly legs. You can read about that adventure here. Fast forward a few years, Chloe is super into the princesses and loves to look at the pictures of her sister with them. She has heard us tell people about Claire's wish and the fun she had meeting Ariel. So I shouldn't have been surprised when Chloe announced that she was ready for her Make A Wish trip. I explained that it was only for kids who had to go to the doctors a lot to which she replied, "I go to the doctors a lot." I couldn't argue with that logic. I explained that mommy and daddy would have to pay for her trip so it would take us a while to save up. For months she asked every day if we had saved enough money yet. When we were out and she wanted things she constantly heard that she couldn't have it because we were saving for Disneyland. So I wasn't really shocked to her response when we finally told her it was time to go. "You have enough money! Hooray!" Like most things on the typical side of our life it was all pretty amazing. Chloe anxiously gathered up everything she needed; her Belle dress, her blankie and an Ariel doll. The drive down was easy thanks to the ipad and some Tinker Bell movies.

 We arrived shortly after my parents and headed out to Downtown Disney for a little shopping. Chloe thought she was in heaven. It was obvious we don't get out much as she was star stuck as the shopping center alone. Both the girls were in heaven in the huge Disney store, if I had known that I wouldn't have bothered with admission to the park.

 After shopping we celebrated Chloe's 4th birthday at Goofy's Kitchen, it was so much fun. Chloe wasn't super excited about the 'creepy' characters but she was pumped for the peanut butter and jelly pizza and copious amounts of fresh fruit.

 Somehow Chloe had a hard time falling asleep after all the excitement so we let her sneak out of bed to watch the fireworks with us from the balcony. As great as the fireworks were it was breathtaking to watch her enjoy them, to remark about the colors and shapes and see her jump out of her skin when she saw Tinker Bell fly around the castle. That's the stuff that can't be taken for granted and Jared and I soaked up each minute of it.

 This was one of my favorite moments. It was 8am on Mother's Day and I had two smiling, happy children that were excited for a day of fun. Not going to lie, it was a huge stroke to my ego ;-)

The first order of business in the wish making process was to go see the fairy godmother in training.

 Then all that was left to do was enjoy the magic and watch her soak it in for the first time.

 It sure helped that Claire was having a blast too. She loved all the fun and extra loving she got from her daddy.

 Pixie Hollow was pretty much a dream come true for Chloe, she was star struck by Tink.

 Claire and I almost went on Splash Mountain but she got so excited she stopped breathing as we got in line, as she recovered Chloe was there being the compassionate little superhuman that she is.

 While Claire slept off the crazy we managed to have fun waiting for the parade.

 Chloe was beyond excited, she named off every character as they danced by us, the anticipation as the princesses got closer was almost more that she could handle.

 After all the fun she was eager to get back to the hotel and so were we, all that was exhausting.

 Day two we did California Adventures with our friends, friends that we had never met before, that's normal right? I met Laurie in New Orleans when I crashed dinner that some of our mutual friends were at. We discovered that our little seemed a lot alike and I have dreamed of getting them together ever since then. So glad we did, it was so much fun and Chloe and Claire have new friends for life. 

 While we waited for them to arrive Jared and I took turns going on California Screamin' the fast roller coaster. Yes, at 9 am I made my children wait in the shade while we rode the roller coaster and it was the best decision. It was eerie how relaxing it was to be thrust upside down, a good reminder at how crazy my world is, I have to go upside really fast to come down from the stress of my life, that might be something I work on in the future.

 All of the girls had fun with the princesses at Ariel's Grotto and we enjoyed being inside and having food served.

 Once it cooled down we went for a few rides and had a ton of fun with our new friends.

 That night the girls cuddled up under the magical fireworks on the wall and quickly drifted off to dream land. Mission accomplished, we had made Chloe's wish come true.

 Before we left we managed to get a little swimming in and by swimming I mean jumping.

 We had breakfast with some friends, Chloe made a great cup of tea for Claire and the Mad Hatter.

 

Like that it was time to go. So glad we went, it was exhausting but worth it!

 But it was also good to be home.

Her voice

I have been afraid. I have been avoiding something fairly important because I was afraid and this week I was forced to look at it head on. I have known that Claire's brain often becomes overwhelmed when she gets the chance to use her talker, it's a lot physically, mentally and emotionally and often after getting to speak her mind her brain lights up a brainstrom that sends her muscles twitching and takes her breath away. It's such a high price to pay and I have really struggled to know when is it worth the risk but this weekend it all came to a head. Claire screamed, crocodile tears streamed from her face. She wasn't overstimutlated or tired, she was sad and mad and she made it clear it was pretty much our fault. Jared was trying to feed her but she wouldn't open, not even her favorite food would help. It occurred to me that she wanted to talk about it so I asked if she wanted her talker to which I got the  'it's about time you had a good idea' look. As soon as it was up she made it clear, she wanted to talk. She told us how she wanted to smile and suggested 'let's eat dad' We joked about how he didn't taste good and she remarked how she liked being funny. That is when we locked eyes and one of those Nemo and Marlin moments. She looked at me as to say, I can do it mom. I thought about the fear of the storm that was brewing inside her head but couldn't deny her, she wants her voice. I told her I was sorry, sorry for not being better about turning her talker on when we are home. She said sorry to us for her screaming, I was overwhelmed by her charachter, the courage and coordination it took for her to say that melted my heart. I told her that it would change today and she repeated, today. Jared and I talked about the barriers to getting the talker on and realized that when we moved we chose to put the stand to a place that was hard to get to and use. The arm of the couch high and limited her from talking when she sat on it so we decided that the couch had to be replaced. Lucky for me the local furniture store was having a going out of business sale so I was able to find a great deal on a lovely couch that met all of our needs. Last night Jared brought it home and this morning we had her talker ready to go when she got up. What did she say, "love awesome being" I have to admit I love that she's awesome too. It feels like I am doing the scariest thing in the world, giving her greater access to something that could make or break the world but I've heard that often the best things happen when you step into what feels the hardest.

Why I write

With the whirlwind that has been life I haven't been reading and writing as much as I like to. Yesterday I had to really fight for it, fight for the energy, fight through the fear that I was being too much of a downer and whiny and I am really glad I did. For whatever reason, yesterday's process was so therapeutic, so healing, it was the perfect reminder. As I sat in the coffee shop staring at my screen
another writer saw what I was writing and remarked that the whole world should read it and that I really deserved a much bigger audience. Not going to lie, I really liked hearing that as I am pretty insecure in my writing. Once I posted the blog I got two message from people that I have had the pleasure of meeting but only because we had met in the blogosphere. I was reminded that I wasn't alone in this, that there are many on this path and that through the magic of the Internet we don't have to feel so alone. So thank you, to those who leave messages on the blog or Facebook, for those that message me and to those of you that write and share your stories, thank you. Things get overwhelming and scary more often than not and I was reminded yesterday of the gift that I can share those hurts and fears and be surrounded with good company. I was reminded of the benefit of the process, so we will see, perhaps you will be seeing more from me in the next few weeks, months, I really hope so.

Too much

If I think back far enough I can remember wanting to do nothing more than being a stay at home mom. I dreamed of the stories I would read with my kids, the time we would spend laughing on the floor and how I would make the best lunchbox snacks. Nowhere in the dream did I imagine that I would be so lonely when I was home with my kids. Never did I imagine that afternoons would be filled with therapy appointments instead of trips to the park or the library. It didn't occur to me that I would eventually become so exhausted that I would stop feeling, stop caring and become little more than a mother robot, going through the motions of life with so little meaning. It wasn't the dream, but that is what life has come to. I fight it but on some level, when your afternoons consist of holding your 7 year old on your lap as she passes out after a seizure and your 4 year old turns the oxygen on and insists that she needs it for her seizure there is little choice, it's just too much to feel on this little energy. Honestly, that day I wanted nothing more than to just turn off, completely and for a little while I did and it wasn't good. There was no hope, there was no joy, no relief, just emptiness and now that I am a little further from that I can see that is not what I want for my days. The struggle is, how do I turn on, just a little. I want to see the kind person at the checkout who lets me go ahead when the girls are getting restless. I want to see the love that Jared has for the girls after a long hard day at work. I want to see Chloe's sweet intentions when she climbs up and sits on Claire to give her a hug and a kiss. But I don't want to risk the pain, the heartache of epic porortions that comes with the stuff that fills my days. Right now I am too tired, too exhausted to be able to deal with that. I suppose that's where the tension in my head is coming from right now, trying to find a balance, feeling and seeing a little, trying to find the balance in what is enough.

The Downside Risk

You might not have guessed, but before I was a tree hugging hippie in Santa Cruz I was a yuppie banker in Scottsdale, my life was far from organic. I don't think much about those times as I really do like my life now. However yesterday I was reminded of a concept that I learned from my life long ago and that is the term, downside risk. Here is one definition that I found for it: "Downside risk is the financial risk associated with losses. That is, the risk of difference between the actual return and the expected return (when the actual return is less), or the uncertainty of that return."  I have to admit that I think about this more than I would like, not with our retirement accounts or investments but with something far more valuable, Claire. It stands to reason that with therapy you can work toward gaining skill and getting stronger. With Rett Syndrome...not so much. The actual return is often far from that that was expected. Our most recent experience with this was with the power chair. It's a pretty big deal. I had honestly never thought about independent mobility for Claire outside of walking. So when her pt put her in a power chair and she did well with it at the first crack I was blown away. Suddenly there was possibility that I had never even dreamed of. Yesterday, at physical therapy Claire was enjoying the freedom of rolling herself around with a demo powerchair for the third time. She was focused, peaceful and so happy. She had been going backward and in circles. She stopped, her hand subtly shook as she tried to get her arm to push the joystick forward, her physical therapist gave me the silent look that said, "look at that, look how purposeful, that's amazing" then it hit. She froze, rather, seized. She stopped breathing and slowly all of the muscles in her body tightened, we held her hands and reassured her that she was going to be alright, but it felt like a lie. After the fireworks I transferred her to the car and as she fell off to sleep she smiled. It was so obvious that she really wanted to be able to go forward, she was putting the pieces together, purposeful hand movement was but a moment away. Part of me never wanted to try it again, not if THAT is what would happen. It left me thinking, which is the greater risk. On one hand to learn things she has to seize and with that we risk aspirating and a number of other complications, it's playing with fire. If we don't push her, we risk depression, anxiety and that she will slowly slip farther away from us. Neither really seems like a good option. Then I step back, take a breath and realize that those are just the downside risks. While they are very much a part of reality I have to remember to look at the potential too. Claire has already made the world around her a better place. People who get to spend time with her often share stories of how she impacted them, changed their thinking or encouraged and inspired them in some way. Claire has already accomplished things that I was told she never would. I am still struggling to figure out how, but I have got to keep looking at that side of the picture. I have to keep choosing to look for the opportunity and remembering that with higher risk comes higher rewards. I'd like to think that someday that reward would be her telling me, "Thank you for not giving up on me even when it was hard." Of coarse at that time she won't be needing me for much more than help with her injections since the treatment that was discovered for Rett Syndrome was so wildly successful. I think I will choose to end my story there.