Firework

I don't really have much to say about rett syndrome right now other than I am still a little heart broken. Claire isn't back to herself just yet but we are working at it. I wanted to share this with you. While this girls story is a little different, in a way it is not. It also happens that Firework is one of Claire's favorite songs. I hope that you can enjoy the whole clip as I found it very moving.

When you least expect it

Yesterday got better as the day went on. I imagine on some level a good cry for me is a bit like a seizure for Claire. Often you can see it building. She isn't quite right, something is off. I try to calm her or distract her but it doesn't work. It could be days of her being off, before, boom, it hits and then by some miracle, she sorta seems better. It is weird. She vocalizes more and uses her hands to swipe at things purposefully after she recovers from a seizure. That is part of why I have such a love/hate relationship with her brainstorming, it is only in the afterglow that I get to hear her voice. I felt the grief creeping up on me and it was good to let it run me over and then get on with my life. I am really glad that I did because today I was able to keep up with Claire. I don't know if she just needed time or if the new medicine is helping, but either way, she was ready to rock'n'roll this morning, so that is what we did. After a fun morning and a great day at school we were off to PT. Our last session ended with me grabbing Claire as she started brainstorming and the therapist whisking Chloe away to play. I was confident that today would at least be better than that. When we arrived, Sue was finishing up with the person ahead of Claire. Chloe had seen her friends at the playground and ran to the back door in an effort to escape and join them. I started to walk Claire to catch up with Chloe. Much to my surprise and delight her body moved effortlessly. In no time at all we got all the way to the play structure where Chloe's friends were. Sue caught up with us and began to help Claire up the stairs. Time flew as I watched Claire laugh while she played with her sister and the other kids. My heart welled with joy as I stood and watched as Chloe, Claire and Sue formed a train to go down the big slide. I felt like Claire was getting to be the pure version of her, not tormented by her body and able to enjoy and play. As Claire landed at the bottom, a friend from her 1st grade class walked into the area. As soon as she saw Claire she ran, arms open and gave her a giant hug. I didn't even cry (good thing I had gotten it out!) as Claire stood up and then quickly made her way to go down one last time. I stood talking with the girl's mom while Sue helped Claire back to the top of the slide. The moment was a dream come true. Both of my kids playing together on a warm sunny afternoon as I stood and enjoyed chatting with another mom. Of all the things I expected today to be, super normal wasn't it, but I'll take it!

What doesn't kill you...

I am sure you have heard the saying; What doesn't kill you will make you stronger. Perhaps your skin crawls like mine when you hear that or maybe it has encouraged you in a difficult time. This morning I decided that I was too weak to accomplish anything so I took a walk. I sat on a bench over looking a beautiful scene. The waves gently crashed and the sun glittered on the smoother part of the water. There was a gentle breeze that carried the fresh salty air. As I sat I ran different scenarios in my head. I wondered if this latest bought of challenges would be Claire's last. I felt the grief of remembering her sitting next to me smiling on what was a good day. I wondered if that would ever happen again. Much like she lost her hand function, I often worry that when something else disappears if it will ever came back. I sat in the sun and cried my eyes out. I actually fogged up my sunglasses. I eventually regained my composure and was carried off by the rhythm of the waves crashing. I know I say it a lot but I am thankful for the reminders that come to me through the waves. As I sat, captivated by the cycle of the water going in and out it occurred to me that I will survive this. I was reminded of how big God is and how I am never alone. If for somehow Claire's time with me ends soon, I will not be alone even if it feels like I am. If Claire progresses and gets worse and I get more tired, still I will not be alone. It was the aha that I desperately needed. Really, both scenarios sort of suck, it is fairly reasonable to think that there are more hard things in my immediate future. But after the good cry and the reminder that I am not alone I am alright with it. I wouldn't choose it or wish it on anyone else. It is fair to say that at the very least I am a hella lot stronger than I was when we got the diagnosis 5 years ago.

One at a time

It was a hard day. One of those days that you just feel like you are being kicked over and over. Claire would turn a corner and then out of nowhere, boom, more crazy brain problems. I felt defeated. It is hard to balance what you can and can't control on days like this. Thankfully Jared and I were scheduled to get out for a few hours tonight. The tide was out so we went down to the tide pools and the beach. As we walked down the stairs I saw a big starfish in one of the pools and went right too it. It looks so vibrant from far away. As we got closer you could see that some of it's arms had been eaten off and they were regenerating. It was just what I needed to see and be reminded of. We were made to be adaptable and that starfish and Claire are perfect examples, I need more reminders of this when I am this tired. We walked on and enjoyed the waves and the sunset. I couldn't think about the next day. I don't know what it will bring or how I will deal with it, but one wave at a time great things happen.

It's just not that simple

It's not so much that I am surprised but mad, really, really mad. It was such a lovely weekend. I picked Claire up from school and her aide told me about what a great day Claire had. It wasn't just that she didn't turn blue, she was super on and loved the day. It was one of those normal great days that I dream of. So with that we were off to go ride horses on a lovely warm October afternoon. Claire nodded off as we drove on the curvy mountain road listening Tchaikovsky and Chloe quietly listened as she watched the trees. Traffic was light so we had time to stop by Captain Awesome's office. Chloe went inside for a minutes and I sat in the car enjoying the cool breeze with Claire as she slept. Then, without any warning, she started to shake. I ran around the car as quickly as I could so I could stroke her head and talk to her should she be able to hear me. This wasn't dystonia, this was scarier. It didn't last long but it wasn't more than a minute before it happened again only worse. After that one she seemed to try to be coming back. She had smaller ones, farther apart until it seemed to subside. Jared and Chloe came back out with her prized bag of Chex Mix and then a much worse one came. He saw the look in my eye and jumped in. Helping her as she foamed at the mouth and vomited. Then it was over. She quickly started to come back so we figured it was worth trying to ride. Sure enough she was alright. She struggled to hold her head up as her neck muscles were close to fatigue from all of the convulsing. At the end she smiled one of those smiles that so clearly said, wait, I'm coming back, don't give up. My heart broke. I hate seeing her so alert on the inside and struggling so much more on the outside. The worst part is that I am fairly confident that this is because she was having a good day. This is the second time in a few weeks that she has had a fantastic day and responded like this. I think of it like a gastric bypass, because of the restriction, you can't eat too much, it will come back out. Claire's brain can only handle so much. While she is capable of enjoying school and learning a lot she doesn't have the infrastructure to support her thirst for life. The trouble is that she is just so incredible, I don't want to dial it back but if we don't I fear what might happen. Rett syndrome takes small things like the simple pleasures in life and complicates them, ugh.

Restoring without rest

My days have been full for a while now so still, it is no surprise that I am exhausted. I could use a few days off to sleep in and nap in the afternoons, perhaps even do something just for fun and nothing out of necessity but I don't see that happening this year. Rest just isn't an option right now and that is why right now I am thankful for a few beautiful moments that restored my spirit. Saturday morning we met with three other families from the bay area to stand with others all over the world and symbolically ascend to the top of the stairs. When you stand back and honor what the children with Rett Syndrome do every day you can't help but stand in awe, their courage and strength is amazing.

While we were there Dr. Mary asked me to be her date later that night as her husband was unavailable to attend a fundraiser with her. Those of you who know me well know that it is extremely out of character for me to trade my jeans and flip flops for a dress and high heels but to spend time with Dr. Mary and the other families that were going to be there, I was honestly excited to. Over the coarse of the evening I was able to meet Dr. Lubin, the CEO of Children's Hospital and Research Center Oakland, the man is inspiring. It is another one of those things that words don't adequately express but this was the picture that was taken as Dr. Lubin approached Erica, Paige and I. As Paige tells the story, Katie's Clinic was the brainchild of Dr. Lubin. I wasn't there, but something tells me that Paige and Jesse were a pretty big part of it to. Either way you tell it, today there is a Katie's Clinic and it is making life better for the families that go there. My life is better because of what Katie's Clinic does. I honestly cannot imagine where we would be if it weren't for the help that we have gotten from the staff of Katie's Clinic and the people that have been working to keep it funded and running for the last eight years. Listening to Paige and Dr. Lubin talking about it I was reminded about how far we have come and the tremendous support that surrounds us.

It was so worth it to wear high heels and lipstick and be surrounded by heroes like this. I just don't know how some days end up working out like that, but they do. I didn't have great expectations when I woke up that Saturday morning, but I sure had higher hopes when the day was over. Even with my higher hopes, I still woke up tired the next morning and sore from my fabulous shoes. We took it easy. Hung around the house, Claire got a haircut and before dinner we went out to the tide pools. Claire was so relaxed, she took slow deep breathes and her body relaxed as the breeze gently blew a little spray from the waves toward us. It is moments like that that she tells me it's all going to be alright. She is tired too but she is hasn't given up. After she strolled on the sand she even climbed up the last 15 stairs to get to the car. It wasn't a nap and carrying her up a flight of stairs after wearing heels wasn't easy but it restored a part of my spirit that had really been depleted so I gladly take it.

Siblings

When you think of the word sibling, what is the first word that pops into your head?  Is it rivalry? If you Google it, rivalry is the one of the first things to pop up. It is a known association in our culture. If you were to ask me, I'd say superhero. As Chloe is getting older I am more in awe of the special bond that she has with Claire. A lot of the people that we meet are often impressed with how caring and compassionate she is. I honestly think that it has little to do with anything except Claire. You just can't teach this stuff. It seems that as we spend time with other families that have circumstances similar to our own, there is a very consistent trend, the siblings are amazing and consistently surpass expectation. I suppose that it is one of the less crappy side effects to the random mutation. I would love to write more about this but I am going to let the pictures speak for me.

  

When You Write it Down

There really is something to writing things down. If you write down what you are eating it becomes clear why you feel like junk and aren't loosing weight. If you track your expenses and your cash flow you can see where your money is going and make more informed choices going forward. Or you can blog often and it appears that indeed, you aren't crazy, your life is. That is where I am at the moment.

Today has encompassed so much. It started with Claire turning more purple than normal and for longer. While both of the girls were at school I got to go meet up with Jared and the real estate agent that is helping us to buy our very own little slice of California. While we were going over the HOA stuff Claire's aid sent me this fantastic picture of how they were making the most of the rainy day.

 

 The day also included getting to work with the phenomenal people that are putting together a day to raise money for Katie's Clinic as well as a good report from my physical therapist that I am actually healing, hooray and hooray! Chloe didn't drive me absolutely crazy and once it was time to watch Cinderella I got the pleasure of watching Claire's face light up as she soaked in the story all while Chloe hid under my blanket, afraid of the cat. It was the perfect end to a rainy afternoon. Once Jared was home I ran out to check one more thing at the new place before we signed off on it. I turned the corner and this is what I saw, I thought it was breathtaking.

 

After poking around one more time I went to get pizza as I had no greater aspirations than to do nothing for the rest of the night. While I waited for my order to be prepared a man walked in with his son. The boy was so vibrant, his smile lit up the room, however I suspect that he was non-verbal. The dad played with him while they waited, clearly he was just trying to keep the boy from getting into trouble. As I watched this I was overcome with grief. I was able to hold it together until I walked out but I sobbed while I drove home. How I wish that I could play with Claire like that. I long for her to be able to walk even if it means keeping her from walking away or out the door. I feel ashamed to be jealous of another family that is living with a disabled child but in that moment I was. So I guess that pretty much sums up my rather typical day, ironic right?