Fading to anger

This morning Claire and I dropped Chloe off at her preschool and headed over to...Target. It's a pretty big deal as it went from being a 30 minute drive each way to being right on the way from Chloe's school to the ocean. Claire beamed and I thought to myself how different things are from just a few short weeks ago. I had even started to write a blog post in my head about how much I love drugs. I was going to explain why I was so hesitant to start her on them but once we did the positive change it has made. Last weekend she went to the aquarium with no episodes and yesterday was the last day of summer school with no episodes or seizures, the drugs were working! I am lexapro's new biggest fan. No longer would I have to fear Claire getting too happy, lest she twitch and stop breathing, with the medication, she was happy and herself without the horrible stuff. As I thought about this I looked into my review to see that her hands had stopped, her neck was bent back and her face taught, it was coming. First it was the dystonia and then it was a small focal seizure. I cringe as I say small because she still turned purple and before I could pull over she had gasped for air and started to foam at the mouth. Needless to say, I have decided that I would rather blog about how mad I am. I am really, really mad. I hate this! I just want to enjoy Claire and I can't. Sure she recovered quickly and still wanted to go shopping. She picked out a new hello kitty outfit but I had to stop and do deep breathing with her every minute or two as we shopped to ensure that she didn't all out stop breathing again. We went down to the cliffs to watch the waves and I couldn't laugh at the funny and witty things that she said because they weren't out loud. We went to Verve for some coffee and a treat and as much as I do truly enjoy time with Claire, I imagine how fun it would be to watch her feed herself, how she might fidget if she could. We came home and she loved her bath. I told her that she could have a special strawberry body scrub because her sister wasn't home but the truth is we were bathing without Chloe because Claire needed to be scrubbed, to find her body, to know where all her muscles were. I let her pick my fancy lotion and gave her a special massage which is really code for checking range of motion and I absolutely hate that I have to do this. Of course she knows all this too. Claire is a smart cookie and knows the difference between a gentle rub and when I am trying to get her to relax into her body. I truly believe that she might even hate that this whole charade goes on more than I do. Sure she handles it better. She grins and laughs her with her dark sense of humor whenever I screw something up. She is aware that for most, summer is fun and not just a series of appointments and therapy. Yet she plays along, knowing that regardless of what other people are up to, this is what we do and she does her best to enjoy it all for what it is worth. I do enjoy it, if you can enjoy something while simultaneously being really mad about the whole thing. I just imagine how much more amazing she might be if she could just use her body a little more and today I couldn't get past that thought. Maybe I will get some good rest tonight and in the morning I will sail right on by the anger and settle right into acceptance, I sure hope that I do.

Otters, Dolphins and therapy

A while back I remember going to the Monterey Bay Aquarium as we often do on the weekends. I was with Claire and we were going to watch the otter feeding. Here is the short version of what happened: people crowded in around Claire, the trainers talked about how important an enriched environment was, I started to cry, the trainers talked about how the otters are relearning to feed themselves by playing games, Claire started to cry, we left. Although we had been been back to the aquarium many times since then, Claire and I hadn't returned to the otter exhibit at all. Fast forward to this weekend. Saturday night we watched Dolphin Tale, Claire had loved it in the theater and we figured Chloe might like it too. I was busy doing this and that and didn't really pay much attention to it until Jared stopped me and motioned to pay attention. There was a little girl in a chair similar to Claire's that was looking through the glass into the dolphins tank. The little girl looked at the dolphin missing it's tail and proclaimed to her mother, "she's just like me". While that scene alone is enough to bring anyone to tears, the look on Claire's face as she watched and then looked into Jared's eyes was so much more amazing. Suffice to say, this is one of Claire's favorite movies and I suspect it will be for a long while. Sunday morning we got up and went to the aquarium. We did our usual tour and took a little break on the observation deck in the big open ocean tank. Claire was very peaceful and engaged as we watched the the large tuna, various sharks and schools of smaller fish gracefully dance in the vast space. I leaned in and asked her if she thought that Winter (the dolphin from the movie) would be a good addition to the exhibit and she clearly responded yes. Then, for whatever reason, it clicked. I mentioned the otters to her. I told her that much like Winter, the otters at the aquarium couldn't survive in the wild and that they are in the process of getting stronger as well. She lit up. We went on with the rest of our visit as we typically do. She touched the sea stars and the kelp. Chloe pushed her around like a maniac and we tried to keep her from running into too many strangers. Before we left Claire and I had a few minutes to ourselves so we went and sat on the glass at the otter exhibit. It helped that there were few other people around since their feeding was all over. She sat and watched with bright eyes as the otters played at the surface. I told her about the game that they were playing and that it helps them get better at being able to feed themselves and in that moment, she looked at me and with those beautiful eyes all I heard was "mommy, they are just like me". Funny how a little different perspective and slight shift in mindset can make the biggest difference. At first I hated the otters because I didn't want to hear the terms "enriched environment" and "therapy" at all more or less that otters get it when so often girls with Rett Syndrome don't. Looking at them through Claire's eyes I don't see my frustration and pain, I see equality and inspiration. Note to self, look at things through her eyes more often.

It isn't the best pic, but eventually Jared and Chloe met up with us and Claire took a minute before we left to show her dad what she had seen. I just love seeing those two together.

Happy Birthday to Captain Awesome

Today marks 33 years for Jared and I felt it appropriate to celebrate him here to start the day.

Captain Awesome, you make the most interesting man in the world look boring.

You enjoy scotch and cigars by the fire one night and have your toes painted with glitter while watching princess movies the next.

You ride your bike through the forest to get to the ocean because you know how to have a good time. 

You can screw things up pretty good but figure a way to make it all better.

You always have my back when that clever little three year old tries to pitt us against each other.

You take a day off to scrub the bathrooms and take care of the hair bow/ribbon "situation"

You can laugh and play games in an ER or a surgeons office better than anybody else.

You work hard all day and rush home to read stories and love on the girls.

You can hug other men that you barely know because you know how rett can make a man feel.

It hasn't always been pretty or easy but you have never quit my love and I am so proud of you! I can't imagine this life without you and look forward to when things settle down and we can begin to pick our own adventures instead of having them slung at us. Maybe we can hang glide over the ocean or climb El Capitan. Wherever the adventure lies, I know it will be good because you are part of the story.

Full

July has been full. Lots of good stuff and some pretty hard stuff either way I think the best way to describe it is full to the brim. With the few moments that I get here and there I am attempting to read a bit and enjoying a book by Henri Nouwen. The girls have also been enjoying an album that I got for myself so that has been a particular treat. Since I don't have my whits about me enough to write about all the other stuff swirling in my head (don't worry, it's coming, will post eventually) I thought I would share this video of the girls favorite song and a few quotes that have given me food for thought.

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey 

“Somewhere we know that without silence words lose their meaning, that without listening speaking no longer heals, that without distance closeness cannot cure.”
― Henri J.M. Nouwen

Higher Expectations

Funny thing about being on the ragged edge of exhaustion, it gives you the super power to say out loud what you should probably keep inside your head. It was one of the first days back to summer school for Claire. Chloe and I were walking with Claire and her aide to the back of the campus where her class was. On the way, one of the adults who knew her from the previous school year said hi to Claire. When Claire looked at the lady who was greeting her the lady said, "Good looking Claire!" and in that moment the little filter that keeps the thoughts inside my head broke. I kindly looked at the lady, smiled and asked her to never again praise Claire for looking at her. I explained that it is something that she does easily as long as her body is letting her control it. She is 6 years old and you would never say to a typical 6 year old "good looking". All of the staff from all of the different special ed classrooms stood silently as if some superhero had just frozen everyone except for me. Claire's aid looked down and Claire looked up at me with the biggest grin, even Chloe help still as I spoke.  I quickly tried to back pedal and also told the kind lady that I knew that she meant well and reiterated that I just don't want people to treat Claire below her level. When I go order coffee and pay, nobody pats me on the back for remembering my money, it is expected. I know that the children affected by rett syndrome aren't the most consistent group of people. We rarely have the same successes two times in a row. None the less, I am now insisting that we raise the bar for Claire. I have always tried to advocate for Claire to be treated as somebody who was severely physically impaired as I feel that is the best way to describe her. Yet, I have stood on the sidelines as people have cheered her on for every time she has peed while sitting on a toilet for three years. Maybe it was the good stuff from conference or the mental breakdown in the airplane. Maybe it was Claire rolling her eyes at me for the umpteenth time as I praised her pooping when I put her on the toilet. I just think that I need to have bigger dreams for Claire. Not just that she might be able to look pretty and smile when it is requested. Rather that I honor her by talking to her just like I would any other girl her age. Also that I will honor her by teaching her everything that I hope to teach her sister when she is 6. The world is really big and I think that I am finally ready to risk it a bit, to put it out there and expect that she will be able to achieve the unachievable, that's only fair, right?

I absolutely loved the opening talk at the congress that was given by a parent, Mickie McCool. You can link to it here, it will ask you for a name, you can type in anything and don't need to fill the rest of it out. It is 18 min. of inspiration. In her talk she tells the people good eyes, good looking and then assumes that they just must not be that smart. That is what happens every day to our children and it is just not alright.


Note: After I posted this I was rereading it as I heard Claire belch at the breakfast table in the other room. Jared said, "That was a good one Claire" as her burping keeps a host of other, less fun problems away. Chloe quickly piped in, " No Dad, she has to say excuse me!" which is the response that we would expect from anyone when they burp. This to say, I am speaking as much to myself with this post as I am to the rest of the world. The only people who might not find anything interesting with this concept of higher expectations would be the amazing siblings of special people, they already get it. 

One Lovely Blog Award

Wow! Somebody gave me an award, thank you Catriona! I am honored that you find my blog worth sharing. Here are the rules:
1. Thank the person who gave you this award
2. Share 7 things about yourself
3. pass the award on

I had the pleasure of getting to know Catriona last year in Boston at the annual rett syndrome conference. To say she is extraordinary would be an understatement. I am thankful to have gotten to spend some time with her and also for her witty self on the Internet. Thank you very much for this award and for thinking of me.

1. When I am stressed out I dream in German.
2. Captain Awesome really didn't know who I was until I ruined his artwork by accident in a high school art class. Now that piece is framed and hanging in our bedroom.
3. I have resolved to never wear nylons/stalking again, ever!
4. I am a little obsessed with Albert Einstein.
5. When it comes to food I am a simpleton. I like grilled cheese, mashed potatoes and pizza.
6. Despite enjoying simple food I am a really good cook, in part due to the classical training I received in culinary school and my time working in the resort in Scottsdale, AZ.
7. I am a procrastinator, I like pressure too much to plan very far in advance.

And the award goes to....Maren! There are a lot of blogs that I could share but I think that checking hers out would really be worth your while. If you really like hers, then you might also enjoy Dear Little Leah.

Step 7 and the rest of that story

After finishing my post about my trip to New Orleans I really felt like there was a little bit more of the story to tell, so here goes. I had a two hour lay over in Las Vegas before I got to head home. When I landed I saw that my flight was delayed by 20 minutes. I made my way through the terminal to the gate that it was scheduled to depart from. I sat and charged my phone, killed time on facebook and refilled my water bottle. I still had an hour before the flight was set to depart so I walked back a bit to get coffee then went straight back to the original gate. But the sign said Phoenix, not San Jose. I was redirected to yet another gate, one that I just walked by, twice. I looked at the clock and it was 20 minutes before the time that it was to leave so I sat down. I looked around and noticed that there was no one else around and thought nothing of it. I then noticed that the plane was at the end of the jetway and breathed a sigh of relief that at least it was there. Then I sat and did nothing for a few minutes. While I sat doing nothing I overheard the gate agent ask a woman who was about to walk down the jetway if San Jose was her final destination. Then I had the thought, all the people were on the plane, I should be on the plane. I walked up and asked if this was the flight to San Jose. The man looked at my ticket and told me that they had been paging me for a while. I didn't even notice that they were paging people, more or less people with my name, but they had been. I quickly found a seat between two people that weren't giving me the evil death stare and we were off. As the plane ascended it hit me, all of it. I could have missed the flight, how could I miss a flight? I'm miss pay attention to details, getting on an airplane is a big detail to miss. Then it occurred to me, I'm tired, really really tired, of coarse I didn't hear or notice what was going on, I was exhausted. Then I sobbed. I was overcome with the emotions of the weekend as well as the past few years. Hearing people's hard stories, the reminder of the pain that had filled my heart not long ago. There was also the joy of being in the presence of those that I love so much. The excitement of the researches talking with such enthusiasm, I could here them in my head saying "not if but when" and "my promise to you is that it will be done fast". It all swirled around in my head as I sat and cried my eyes out for 40 minutes. I had no tissues, my tears just rolled down my chin and soaked my shirt. Eventually I composed myself, closed my eyes and tried to rest. I thought about how I joke that I am not bi-polar but my life is. I often go in crazy fast cycles of laughing and crying but only because Claire stops breathing and scares me and then her sister does something wonderful like singing a sweet song, helping her doll with the oxygen mask or standing on her head. But up in an airplane, I had no circumstances like that to throw me around, just my thoughts. That is when it hit me, Step 7, acceptance. I was peaceful, aware of all the crazy that fills my life but in that moment it occurred to me there is no changing it and that it will, indeed be alright. I am sure that this was an easier conclusion to reach with the fresh reminder of all of the love and support that I got from being with my rett family. Additionally, I had spent hours that day looking out the window, down at creation, for me it was a very strong reminder of my creator and how much He loves me. I remembered that even within the big mess there is beauty and in that airplane I took a breathe deeper than I have in a long time. I think I normally sigh as I go through the relentless grieving process that is my life. Perhaps it is because I have only been going through steps 1-6 over and over. This whole concept of acceptance is a bit of an odd thing, I still get twings that I should be more upset about things, then I somehow am able to take a deep breathe and smile. It's been a bit since that moment in the airplane.  A lot of life has happened since then. Claire's had more seizures and longer harder bouts of the dystonic/rett craziness in fun places like the car while I am driving and the ice cream parlor. I wish I could describe it better but it is just a little different and by different I really mean good. I had heard people say that with rett syndrome it does get easier with time and I could never wrap my head around that. I think that they meant that they were pushed harder than they ever could have imagined and eventually it made a bit more sense. I know that I haven't completely arrived, I still feel crazy, exhausted and go through the grief cycle several times a day. It just more feels like the wind is to my back than in my face, even if it is still making it hard to stand.