Scary

I don't know about your life, but one of the most common things that we talk about is yesterday. We are often updating therapist or just reliving fun stories and today was no different. As it turns out, yesterday was a pretty big day for us. First off, Tangled came out. So Chloe and I ventured all of the way to Target to get it and talked all day about how we had to wait for Claire Bear to watch it, it was a pretty big deal. Chloe really liked her Tangled themed coloring book, I assume because Rapunzel has wonderful hair and there is a horse. None the less, Chloe was excited about the movie. Claire had had a pretty rough day at school and fell asleep as we watched, she did see it three times in the theater. Pretty quickly Chloe opted to watch from the kitchen, only occasionally peeking out to actually look at the tv. We talked about how it was scary and that it was alright to hide. With Claire asleep on the couch and Chloe playfully dancing to one of the songs in the movie, I thought I might run into my room for a minute. I heard a sound, an unfamiliar, run too it as fast as you can sound. As soon as I turned the corner I saw Claire's poor little body convulsing/ jerking. Her arms were in sync going up and down and she was foaming at the mouth. She stared out the window, there was no connection to the world that was around her and just as quickly as it happened, she was back asleep. I immediately called Fairy Mary and after talking I really do think this was her first honest seizure. After 25 minutes she slowly woke up, but her body did not. She was so floppy and jerky and Jared had to hold her in his lap and steady her head while I tried to get her a little dinner. We ended up having to lay her in her bed because it was the only safe place for her, heart wrenching really isn't adequate, what Jared and I felt was something worse than that. I kept thinking about poor little Chloe as this went on, Claire required both of our attention and Chloe just got the scraps that night, it isn't always like that, but I feel like it really should never be that way either. Claire slept it off and woke up to a new day. She was back to her normal self, she even opted for two layers of nail polish, first pink, then purple glitter, a true sign that nothing was out of the ordinary. Sara our ABA trainer was here (I would never put two coats of alone with them both!) and chatted with Chloe while the nail polish was drying. The discussion quickly turned to Rapunzel. Chloe said in the cutest, almost two year old tone, 'it was scary'. While I admit it is scary, Disney does a great job of creating antagonist for a thrilling story line. But she saw Claire's seizure. She saw Claire weep and scream as she struggled to control her body. Yet, that didn't seem to evoke feeling of scared. She can walk up to Claire when she is screaming at 110%, give her a hug, tell her she loves her and then turn to me and announce that Claire is sad. So the word for yesterday will be scary, for Chloe it was the creepy evil lady in the movie, for me it is the mecp2.

Now and Then

This past weekend we had the pleasure of journeying up to Oakland for the natural history study that Claire participates in twice a year. It is a fun time, we get to see people that we don't see often but love very much. We have a few friends that are very close in age to Claire and it is always interesting to see what their path has looked like and what rett has thrown their way. When you are dealing with hard stuff it is always easier to deal when there are other people who get it and in similar circumstances. Soon after we arrived on Saturday, Fairy Mary (also known as the unbelievable Dr. Jones) told us that there was a family that we had to meet. I really didn't think anything of it, until we met. Her name is Lucy, she just turned three and is the closest thing to Claire that I have ever seen in my life, she was wonderful. It feels like my life goes by very slowly, so I don't often see the change, but Saturday afternoon it smacked me in the face. I didn't realize that Claire had grown up until I saw this sweet little girl who had just turned three. She still had a stroller just like Claire did at that age, she also had the same willpower to stay awake and see it all much like I remember Claire doing. I looked back through pictures to try to remember more of that time, it was a really great time. Recently as I have been more actively working through grief and the basketful of stuff in my head and heart related to all things Claire, I have associated that period with being numb. While that does still hold true, after seeing Lucy I have a little fresh perspective, my new word to attach to that period is tender. Like a really bad bruise from a recent injury, it was sore, but it didn't paint the whole world yet. It got me thinking about the two and a half years that have transpired since Claire turned 3. In that period she went crazy for all things princess and is now over it. She has developed a deep love for learning while at the same time attaining new levels of silliness and play. The road has been rough and long, there haven't been many water stops and I am very tired. Looking back, it hasn't been all bad, with the hard and the ugly there has been so much good. It was really fun to get a little window into our past in the form of another sweet soul a little further back on the road. I am finding myself refreshed and renewed, in two and half years we are no worse off, we are still just enjoying the days that we have together and I just don't think it can get better than that, cure for rett aside :-)


The first picture was taken of Claire just before she turned three and the second was taken at the study on Saturday by Megan, a fellow rett mom and truly amazing woman.

The Greatest Birthday Ever!

I love my birthday. Why wouldn't I, it is a celebration of me! But when you grow up, which, technically, I think I might have, birthdays can be a little trickier. First off there is work, my current employer is not fond of any type of time off. Then there is the budget and a host of other annoying things that fall into the category of 'adult type responsiblities' that can take away from one's birthday. In my 20's I had the pleasure of having colonoscopy three years in a row, on my birthday. Other than that, I have very fond memories of my birthday. My mom was awesome at making me feel like the most important thing in the world on my birthday. I always got corned beef and cabbage made just for me, alright, it was St. Pat's Day anyway, but I do love that feast! The last few years have been less exciting. I imagine that I am not the only person out there who has had disappointment from a spouse's failure to adequately celebrate the birthday. Add young kids with some other random complications and it is pretty easy to not have much energy to celebrate, it happens. This year was different, it was exceptional! It started getting to cuddle with my Claire Bear and she gave me a card and a necklace that she had made just for me, priceless! It wasn't long before Chloe joined the party and things were rolling. Jared took her out to get cat food as we can completely neglected to remember that we were entirely out, oops! When they returned home, Chloe came running into my room yelling, "mommy, mommy, birthday cake!" It was brilliant! I don't think that I had ever conceived in my mind just how great it would be to have a little girl run in and ruin a surprise, it was bliss! Even the best birthday ever had a little blip in it, Claire had a pretty major episode where she stopped breathing and got super floppy following. I was so proud of Jared for rolling with it and staying calm, I had no idea that we had reservations, more or less at the greatest restaurant ever and Claire needed to be dropped off so that we could get there. Our friend came to stay with Chloe and we left to take Claire to Kid Quest, both with pretty heavy hearts. Watching Claire stop breathing isn't fun. Even with her doing it almost daily, it does not get any easier, but it is our lot, no use fighting it. We dropped her off and started our journey to the still unknown destination. It was nice to have some time to talk about how hard the whole Claire thing can be but quickly the conversation turned to the crazy weather and our destination. About 20 minutes into the drive I started narrowing down options as we passed exits and freeways. In typical Captain Awesome fashion, I was given a clue, wonderland streams. It took me half a second to figure out, ALICE WATERS! It never even occurred to me that I would be going to Chez Panisse. That Jared had reservations and had gone to great lengths to keep the secret spoke volumes to me. I pretty much giggled in the car the rest of the way there, despite gale force winds and massive amounts of rain, all I could do is grin. We were seated at a very cozy table (they pull it out for you to sit down and push it back, small space!) and given the days menu. I didn't think it could get better until I read that today's menu featured dishes inspired by Julia Child, one of my other heroes. I won't do the food the injustice of my words, I will just say that it was marvelous. The company was also very nice and I am amazed at the fun grown up, non kid things that we can talk about when given the chance to eat at a time that we are also not completely exhausted, again marvelous is the best I can do to sum it up, but that really is an understatement. Eventually we had to leave and journey home, again through crazy wind and rain, but I was so content that I drifted off to sleep. We finished the day off with a princess movie, pizza and a birthday cake with two of the greatest little girls ever. Huge props to Captain Awesome, I felt like the luckiest girl in the world that day, probably because I am.

Sometimes You Want to Go Where Everybody Knows Your Name...

...sometimes you don't. In my case, it seems to be that I don't really get to pick, but none the less, I have recently had great experiences with both. The past Wednesday was far from a normal day. Jared had taken it off because Claire had to go up LPCH to get wired up for an ambulatory EEG. Since he is Captain Awesome, he offered to take her, at first and I must admit I was a little nervous. I pictured him in a ball crying while Claire screamed during the long process of gluing 28 wires to her head. I have done it twice and both times my nerve were a little fried at the end. I had BSF, which I figured would be a good distraction and maybe the wonderful children's program that they have would wear Chloe out so she might nap well. Of course I was running late, it was the day I was supposed to get there early for the fellowship and I had all I could do to put one foot in front of the other without bursting into tears because Jared and Claire were off doing something that makes me very sad. As I dropped Chloe off, one of the women who runs the toddler room handed me a card. A few months ago I had run into her at Verve, my favorite coffee shop, while I was out with both Chloe and Claire. I quickly noticed that it was a gift card to Verve :-) and thanked her. She smiled and laughed with a remark about how I must need all the energy I can while watching Chloe run across the room. I honestly think this is one of the kindest gestures that anyone has ever done for me, at least in recent memory (which I admit is bad). Since I am being honest, I really don't enjoy BSF that much. I go because Chloe loves it and I don't mind the lectures and small group, I sit in the back, don't talk much and try to blend in as best I can. But it didn't work, somebody noticed me and it turned out to be the biggest of blessings. The two hours had gone by, it was time to head home and still I hadn't heard from Jared. Eventually, this picture is sent to my phone, of coarse it went smooth as silk, that is why they call him Captain Awesome. I don't really remember what the rest of the day held, I do remember being really tired, but in a good we did it sort of way. Then I woke up. Thursday morning I opened my eyes, looked at the video monitor and saw just the wire in Claire's bed, no Claire. I ran in to find her giggling, sitting on the floor with the bandages that protect the wires off her head. Panic ensued, doctors were called and it was decided that she needed to go back in and they could squeeze us in at 8:30. I had a meeting at our home scheduled for 8:30 with the ABA team and Claire's classroom teacher. So, Captain Awesome volunteered to take her. They were there and back quickly, other than the freaky episode in the car (which is why we are doing the EEG in the first place) again it was smooth. The rest of Thursday was pretty uneventful. We met up with Jared's brother and his wife at the aquarium, saw fish and ate ice cream. Friday we were very pleased to see Claire in her bed in the morning. She was pretty excited to be going to get the wires off her head, it was obvious that it was very uncomfortable. Of course we opted to go get coffee first. I just love that I can take her into Verve with her head taped up and everyone talked to her as if it were no different than any other day. It really is one of those places where it feels good to go in and yes, most of the people in there know my name. After that the drive was surreal. She lit up, in the purest and most typical little girl sort of a way.

 The video doesn't really do it justice, but it is all that I have to try to show you. In the moments in the car, she didn't hate rett syndrome, she wasn't being actively robbed in the form of a dystonic episode, it was just pure. We pulled up to LPCH and the valet looked surprised, his remark was, different driver today. For some reason that really took the wind out of my sails. Being recognized at the coffee shop is way better than at the children's hospital. As we waited for them to look at the data before unraveling the wires, it felt like everyone who walked by knew Claire. It was truly one of those bittersweet blessings.  While it is great that we have a place to go that offers such great care, I really wish that we didn't have to go.

Good Grief!

It has now been five years since I really entered the land of the grieving and five years ago I had no idea. Honestly, I spent a solid three years in denial, without even being aware that there was a grieving process and that I had anything to grieve. After all, my mom didn't die. Claire didn't die. It seemed like the appropriate response would be to be thankful for this, right? I remember the day we got the diagnosis for Claire, I was so genuinely joyful that it wasn't a death sentence, something that we had feared. Last week I was speaking with a friend who was struggling to pull herself together and push on. She too has had a life altering set of circumstances that have left her with some physical challenges. She said to me that what she has was not nearly as bad as what Claire has and that she shouldn't feel so bad for herself. She had articulated so clearly the elephant that is often in the room when I am with others. For some reason, we tend to compare our trials to others. If what we have isn't as bad as somebody else, then shouldn't we just get over it? No. I think this happens a lot in rettland. I have friends who's daughters walk, which is amazing! I have heard musings of how hard it is to be frustrated when they have friends who are in the hospital with seizures or feeding problems. All this to say, my new answer to so many is to grieve. You don't have to have it worse than everyone else in order to be entitled to grieve, you just have to have a loss, that is the only prerequisite. I really wish that somebody had told me it was alright to grieve years ago when we were in the earlier stages. So to any of my friends not as far down the road to rettland, it is alright and I highly recommend it. I do think that grief had a pretty negative tone in my head at first. In part it has to do with my upbringing within the church. There is a need to always be praising and grateful, while those are very good and important, the Bible does also say to 'mourn with those who mourn' but that really gets a lot less publicity than the everything is fine message. The last two years have really been a much more active part of the grieving process for me. I can look back and see that there were periods that were full of anger, bargaining, depression and acceptance. But with my situation, there is no completion. Claire is not dying and she is not really getting better. A few weeks ago a friend asked me if I felt like there was a place that I would reach, that would allow me that final acceptance. Sadly, my answer was that once Claire passes, I will get there.  Hopefully, that won't happen for a really, really long time. In the mean time, I think that I have adapted to go through the whole grieving process on a daily basis.  On rough days I think I might go through it two or three times and sometimes it might span a few days. It looks like this, Claire screaming her head off, thoughts in my head are along the lines of, this is typical she is five, kids are hard. Then the screaming evolves into heartfelt sobs, I begin to see her for the normal kid she is, trapped inside her body and get mad, why?!?!? this is typically when I have my WTF conversations with God. Then she starts to calm, I think to myself, if I can just get her walking, talking or more regulated, then we can get through this. Once she is better, I turn on pbs and go hide in my room, look at baby pictures and cry my eyes out. Eventually, I hear the girls laughing in the living room, which brings so much joy to my heart, I wipe the tears away and go and enjoy them. The point is, that allowing myself to go through and feel the different stages, has really allowed me to feel more in general. I have given up on trying to be the strong one who is really alright with it all and have come to rest with the notion that it is hard and not alright, yet everything is going to be fine, sort of....you can see that it is a work in progress.

Good

Today I walked down the beach holding my daughter's hand. We played in tide pools, stood in the sand as the gentle tide washed over our feet and it was good.

Being

It has been a year now since I actually have been feeling again. Within that time there have been plenty of ups and downs along with the twists and turns and I can confidently look back over the coarse, with a grin on my face. I feel proud that I have not just survived it but took a lot of it in. Sure there were a few corners that I closed my eyes for a minute and the occasion that I had to let up on the gas, but overall it was a good time. Through all the tears and the joy, I think that I am finally starting to maybe learn a few things through it. Right now, that seems to be the concept of being. The thought has been floating around in my head for a while, I often pause, think to myself what it would look like to be and then get on with my doing. It is easy to do, to just keep putting one foot in front of the other, it doesn't take much thought, after time it becomes automatic, the treadmill slowly increases speed and without too much effort, you just adapt. But I don't want that. My problem is then, what? How do you not do? Seems impossible. Today we went to the aquarium with the girls. While Jared chased Chloe I sat and fed Claire while trying to just soak it all in. Like most nice moments it was cut short by a toddler (thankfully not mine!) wondering off in a direction that was clearly against his mother's plan. He was interested in looking at the ocean tide pool area through the fence, his mother desperately tried to get him interested in the display. She ran after him saying, don't you want to see the frogs? They have water over here too. Claire and I relocated and yet another mom, was chasing after her youngster, trying to get him interested in the exhibit, with this it occurred to me that this is a very noticeable trend. Since I was already volleying the concept of being in my head, I couldn't help but notice that both mothers were clearly trying to get their son to 'do'. As a culture I think we are wired that way, even as toddlers we teach this. My next filter was to think about this in the lens of a special needs parent. The list of things that I NEED to DO is very long, so long that it would be very easy to hide in for roughly the rest of Claire's life. She must be fed, walked, stretched, dressed, groomed and communicated with and that is just before school. Is it even possible to think about really trying to make this shift from doing to being or am I just doomed to fail? When we entered the land of special needs we were in the early intervention program. As the term suggests, the intervention was pretty comprehensive. We had a minimum of 9 hours a week of appointments for 18 months. During that time I learned to advocate for Claire, I would strive to get her everything that she needed without overloading her and giving her enough down time to process, but not so much that she was bored, it was a fine line. Then in 2008 research was released showing that mice with rett showed improvement when exposed to a rich environment. It was the evidence that I needed to keep going to keep pushing. Then I blinked and it was 2011. It has been 4 years to the day since we saw our primary doc and she was alarmed, sending us to the regional center for support. Today, Claire is 'doing' well. She is learning a lot, slowly getting stronger and more confident with her walking. As she napped today all of this swirled in my head, can I just 'be'? What is that? Am I crazy for even attempting such things? Then Claire woke up, Chloe had just fallen asleep and I had to be quick to keep Claire from waking her. I climbed into bed to cuddle with her and she looked straight into my soul with her vibrant eyes and bright smile. She was happy and it sounded like she was trying to talk. I told her how I love the sound of her voice and that I know she wanted to control her mouth but that it doesn't happen. She started to make the sound of the letter f. She carefully blew, with her two teeth over her bottom lip, she tried so hard. We laid for a long time just saying f words like fun, Friday, father and flower. I would wait and she kept trying to speak, over and over she would blow and try to say fun, she got pretty close several times! I was humbled by how hard she tried and how much she relished the smallest of her accomplishments. Then it dawned on me, I was being. While I was trying to get her to talk which can be construed as speech therapy, which would go under the column of do, I was following her lead, which I think is one of the defining differences. If I hadn't been still enough to notice what she was doing, I would have moved her to the couch, put the tv on and missed a really beautiful time. As for the video, it was one of Claire's favorites when she was into Seasme Street, now she likes the real Beatles, but it seemed fitting for the wide range of things that are in my head tonight.