October 24th

For the last 4 years I have hated October 24th. 2006 I was traveling home very ill after doing the Nike 1/2 marathon for my mom, who I thought was dying (Oct. 24 is also her b-day). 2007 we had just gotten the diagnosis. 2008 we were just starting school and in iep hell and a huge legal battle 2009 Chloe had started to shove in my face just how not typical her sister was. Aside from the 1st birthday, which I was required by grandparents to, I haven't done a real cake for Claire. It has been a friend or a small dinner party, but nothing really for Claire. 2010 was our year and I am hoping that this is just the start of the birthday celebration that just gets better every year! It was more of a long birthday weekend than a "day". It started after horse therapy on Friday. Our ABA conveniently canceled so we got to go to lunch with my parents who had just flown in and my cousin who was in town for hockey. We ate at The Counter and Claire got a milk shake and french fries (can you tell we are trying to fatten her up?) this was huge considering she typically gets organic whole grain pasta with grass fed ground beef, kale, eggplant, peppers and tomatoes. Saturday morning we did our usual trip to Verve for coffee, but Claire got a special treat, a whole cup of whipped cream sprinkled with chocolate shaving. Then we were off to the mall for shopping with Nana and ear piercing! A few weeks ago Claire announced "My birthday is October 24th presents earrings" how could I not give positive reinforcement to such wonderful and clear communication! We had a lot of fun shopping, she is very good at picking out clothes. Later Saturday we chose to open presents and then watch a movie before bed. Sunday was the actual birthday. We slept in a bit, played wii bowling and went out to breakfast all bundled up for the rain. I don't know why I am so consistently shocked, but Claire does so well eating out. She had a quesadilla with peppers, onions, mushrooms and some other stuff that looked really good, and she ate it up fast! A little later we did "the cake" which was a pretty big deal. Not only did she get a real cake, we hooked up a switch to the fan so that she could blow out the candles. So we ended up singing close to 5 times, just so she could keep blowing the candles out, it was such fun! For the final birthday feet, Claire took in a tray of gluten free cupcakes dripping in purple and yellow sugar crystals, the closest thing to glitter that I could find. Her class had a huge party for her and even gave her a present of a little toy cat to hold on her lap (it is super creepy but she loves it!) and some hair clips. All in all, I think that 2010 will go down in the books as a huge success!


HibOO d'Live : Mumford and Sons "Timshel"

Third time's a charm

Jared and I have always enjoyed music. Before we had kids, we enjoyed a lot of concerts. We still like to try to get out when we can. There were three concerts that we had wanted to go to within a two month period. I know it sounds crazy to go out three times in two months, but we were really going to try. First was Green Day. We had last seen them when I was 9 months pregnant with Claire, back when we had no clue that there was anything besides sunshine and roses ahead of us. Our sitter canceled at the last minute and it was the most disheartening process to try to find somebody to sit at our place while our kids slept. For one reason or another, no body was around. At the last minute, our dear friend Tim called to say he could come over, as long as they stayed asleep things would be fine and if not, he was strong enough to handle a full hour of both of them screaming while we rushed home. Sure enough they slept fine. We got to the concert just as they were starting. It was a good show, they were great performers and could really get the crowd going. It was fun, we enjoyed it and went home, tired. The next round was Jimmy Eat World, we couldn't find a sitter at all so I ended up going by myself. Which in hind sight, driving up to the city by myself with a dead cell phone to a venue that I had never been to, maybe wasn't the best idea ever. It worked out well, it turned out that our pastor was in the same box as I, small world! As always I enjoyed there show, it was actually at the exact time that the pepsi challenge closed and rett syndrome awareness month started. I have to say how great it was to hide from that all for a few hours. The music was loud and it was a lovely vacation as it always is. The third show we wanted to see was Mumford & Sons. We had only recently started listening to them and have fallen deeply in love with the album. So you can imagine how my heart sank when the sitter called to cancel the day before the show. I felt like Job as I thought, "Why do you forsake me?!?!" I knew in my heart that God had it and I couldn't see it all, but it really felt like he didn't care much about my need to get the smallest amount of a break. As it turned out, I wasn't all alone. Our friend Chris was able to spend the night at our place so that he could catch an early flight and we got to go without worrying about getting home on time, phew! Finally, third try and we left the house with plenty of time and weren't super stressed out and might even enjoy a show. I am really at a loss for what to type next. The show was amazing! I don't mean amazing in a well produced sort of a way. I mean amazing in a new way to experience emotion and feeling. It might sound crazy, alright, it most likely sounds crazy. I feel like a new person after watching that performance. There just aren't words for the blogosphere to explain what that night did to my soul, but it is good. I figured the best way to explain was to just share some clips I found on youtube. You have to remember that they don't touch the awe so seeing a guy play a guitar and belt out a song while using his feet to control a bass drum as well as a tambourine, but they will show a little sliver of what I saw that night. I am posting two videos. The one titled timeshel is for my rett family. I am forever grateful to have you along this journey. The other is one of my favorite songs with footage from a show. I enjoyed it so I thought I would post, just in case you might too. More to come on the whole feeling and emotion thing.

Mumford and Sons - Roll Away Your Stone



Three years ago today the phone rang. I saw that it was LPCH and figured it was somebody to either set up an appointment or remind me of one that we had. You can imagine my surprise when it was Dr. Suttcliffe. She was calling to let me know that the test had come back for Rett Syndrome and it was positive. WHAT?!?!?!?!!!!! You see, three days earlier I had sat in our neurologist office, it wasn't that big of a visit. She had told me that the test for Rett Syndrome was negative and that Claire seemed to be doing well, so we could come back in a year unless we needed to see her about something urgently. So what did I do, what any parent would do, call another specialist for a third opinion. We were scheduled to see genetics in a few weeks, so I called them to be a tie breaker. When they called there was all sorts of apologizing for the mistake, but it was true. She had Rett Syndrome, we could stop searching for the problem. At this point, I had no idea what Rett Syndrome was, none. I had taken the approach of not looking anything up until we had a conclusive diagnosis. So I googled it. The first thing that popped up was the International Rett Syndrome Foundation. I went to their website and looked around a little bit. I remember feeling so deeply relieved, this didn't seem that bad! I read about how they couldn't toilet independently. I thought it wouldn't be a big deal to help her unbutton her pants, maybe we could just go elastic. I had no idea that she would not have the ability to walk in there and sit down on her own, I figured it was coming. The next morning I went to Bible study and shared how overjoyed (DENIAL) I was that the search was over, we had a diagnosis. One of the ladies in our group told me that there was a story about it on the front page of the paper. I thought that surely she was confused. This is super rare, not headlines in a small town rare. I was wrong, there it was Madelyn's Dream. There was a whole gala for Rett Syndrome that week, 8 minutes from our home. We wouldn't be able to go for the dinner, so I emailed the lady organizing it so ask if we could attend without paying if we left before dinner. I think my phone rang 30 seconds later. We talked for almost an hour. Later in the week I got a call from Paige, who had a daughter Katie, as in Katie's Clinic, I wasn't alone. Through the whole thing, every day of the last three years, I have been in awe of the people that I have crossed paths with at just the right time. I have learned a lot about the "system" and how to be in it but not defined by it. Claire has taught me to slow down, to notice the smallest muscle movement when she is trying to help. It has been a very long three years and I am very tired. But I am still strong, not because I am some sort of freaky superhero who feels no pain and advocates relentlessly. It is because I have started to feel the pain, because I know that I will never be enough and that I am dependent on my creator. I know that He has put each of you in my life to help me through this storm. As much as I wish the phone never rang 3 years ago and that it was just environmental and Claire was in regular ed now, I am so deeply honored to have met each of you, my rett family that I am on this journey with. I love you all so very much.


So I guess this is normal

For the last year I have really been trying to slow down and not operate in crisis mode. With everything that happened so quickly after Claire was born, my mom, moving to Arizona, moving back to CA 6 months later, starting early intervention and getting a diagnosis, I think that I felt like I really needed to slow down. Who can keep up at that pace? Then we got in a car accident had a baby and a few surgeries. Then it was summer and then school started with a new team and now we are into IEP season. I keep saying that after the next thing life should settle down. So as I go through the days, just putting one foot in front of the other over and over, I wonder how can I keep up at this pace. Then it dawned on me, as I was talking with a friend about Claire's daily care and the lack of margin, how there is more stuff to work on then there is hours in the day, it isn't going to settle down for a while, a long while. Honestly this thought feels like a big punch in the gut. I really would like to have one of those normal lives where people do things like shower and think about what they want to eat or which book they should read. But it looks like my normal is just different. More of a shower every third day if I am lucky and grab some sort of protein bar to consume as I go to therapy and crash at night normal. It isn't that bad, it just wasn't what I expected.


Captain Awesome

I was going to wait and write this on our anniversary, but I just can't wait. On Nov. 6 we will be celebrating 11 years of marriage. Not 11 years of good times, 11 years of marriage. But I have to say that it feels like the celebration of us has already begun a little bit, and I am really excited about that. In particular, the last few years have been very hard, there were times that I really didn't think that we would ever celebrate 11 years. Rett Syndrome seems to have a way with ruining marriages, I would be a liar if I said it hadn't given us a run for our money. We came up with the name Captain Awesome for those moments that you really do try to do something, but for one reason or another, it just all goes sideways, like putting Claire's shoes on while she is screaming bloody murder and then she can't walk, come to find out they are on the wrong feet, when Jared does it he is Captain Awesome and when I do it I am Miss Amazing. I love our nicknames, it gives us both the freedom to just screw up because our life is too hard, it helps us to laugh at ourselves and with ourselves. Last night Jared insisted that we watch Beauty and the Beast (we just got it this week!) with no kids. That's right, he loves Disney princesses, to the core. Claire has sure left her mark there! So we sat on the couch and had a great 2005 BV Cab (sort of sentimental, we were in napa for that harvest, days before Claire was born) with pizza and watched Beauty and the Beast. Just made me smile, I am so glad to be stuck in this mess with one of the greatest men to have ever graced this planet, I wanted to shout it from the mountain top, but I am too lazy to hike, so I figured I would blog, close enough?


The Pearl

I know that I have been super bad about posting lately, I promise I really am trying, it just doesn't seem to happen. I feel like a huge update is due but it is too much to take on right now, so I will just stick with this little slice of the story. Today, the highlight of my day has been Ducati. Weird right? For many years I have had a love hate relationship with that word. It is the company that Jared works for and it pays our bills, for which I am very thankful. A lot of the time I feel like all the work might not be worth it and that is when I have a more hate relationship with it, but today it is love! Let me give you a little background. Jared LOVES motorcycles. In fact, that is how I hooked him. I was the only girl in our school that pretended to like motorcycles, so he talked to me, and my evil plan worked, a plan that began in 1997. Soon after we married Jared got his first bike and has always had one since then. I have always said that I couldn't be married to him without it because he gets so cranky when he hasn't rode in a while. Enter life, he is at the top of the motorcycle world. In December we purchased the bike that he always dreamed of, 'the pearl'. Jared thinks that he is a pirate and likes The Pirate's of the Caribbean way too much! So he has a blacked out bike that he named after the ship in the movie. He really loves this bike, he takes pictures of it by the ocean he likes it so much. Through this whole little Rett shitstorm it has been his outlet, the closest thing to therapy. So you can imagine the fear inside me when I figured that we needed to sell it. The accident that I was in 18 months ago has been very expensive and we still haven't settled, so we need money. Lucky for me, Jared has been hating his job lately, so he quickly warmed up to the idea. Not only did he warm up, he sold it within days! When we got up this morning, the wire had come through, the pearl was sold. We both felt a huge sigh of relief, happy that the whole thing went so smoothly. I am so proud of Jared! He has really let go and moved on in the healthiest way I can imagine. He is looking into mountain biking and some other things that he could do to get a release, he is even getting excited about taking both girls out for bike rides so I could stay home ALL BY MYSELF!!!! I have to admit I really like that idea. As I have a huge grin on my face because I feel like I have won the battle against Ducati, Jared says he got an email (which are normally Ducati related, back to resenting). There is a dealer in Florida that has an open house every year. I guess he just woke up and thought he would do something super awesome and is doing a raffle and silent auction because of Claire, to benefit IRSF. Wow! I think that the part that has meant the most to me is the wording that was used. You can click here to see the newsletter that went out and the explanation of the event. So now the pearl is gone and Jared is feeling loved by Ducati, can a girl have her cake and eat it too?