Funny how easy it is to wind up somewhere and not really think of how it was that you got there. Over the last few weeks I have been going through an identity crisis of sorts. I know this is normal for those in the mommyhood but it still has my head spinning in all sorts of directions. Earlier this week I had the privilege of a time warp of sorts and it really stirred my thoughts a bit. It started on Saturday night. Jared and I went out to see one of our favorite bands since they were playing so close to where we live. In recent years I remember enjoying their shows if for nothing more than a 90 minute break from the harsh reality of life. It was a form of loud music therapy for me, in a way it just blasted all the excess crap that I would never have time to process out of me. Life is seeming less harsh at the moment and I think that helped me to enjoy the show even more than I had in the past. This being the case, I took the opportunity to go see them again on Monday up in San Francisco. That is when I was thrown into the time warp of remembering 10 years ago. Captain Awesome was happy to stay home and get caught up on life so I got to go with a new friend that I was eager to talk with and learn more about. It happens that she is 8 years younger than me and also newly married. As she shared stories about her life and the adventures of being married it took me back. I had completely forgotten that years ago I lived a completely different life. It took me back to all the plans that we had. How we desperately wanted to not live in Arizona. California sounded good but we were sure that we could never afford it. I dreamed of going to culinary school and working as a professional cook. I worked at a bank and wore fancy dress up type clothes almost every day. We lounged around on weekends and went out to eat a lot. It was surreal to talk about our life of years past. I was snapped out of the dreamlike thought once we got up to the city where I miraculously did not get lost and quickly found great parking. Soon the show started. The band was playing an album that they had released 10 years ago in its entirety. Since I have kids now I don't often listen to grown up music, more or less an entire album, so it had been a while since I had heard some of the songs. It is amazing how you can hear a song that you haven't heard in a while and it can transport you back in time. In the light of what life looked like back then, it really is amazing that we have ended up where we are. Yet I don't think that we could be in a more perfect spot. It certainly was not the dream but I am in awe that it is better than what I could have come up with. It makes me wonder, what plans do I have for the next 10 years. Certainly life will happen and they will evolve as we go. Maybe there really will be a research breakthrough and Claire will be better able to use her body, maybe there won't be. Maybe we will completely loose our minds and move to another country all together. Who knows, I don't. Isn't that the point though? To soak it in as you go, not taking any part of it for granted. I am trying to soak it all in. Today being thankful for new friends and old music to help me see where we have come from and inspire me to hope that it is very likely the future will be better than I can even dream of.
You are never going to believe what happened today. I woke up and sure enough, Claire still has Rett Syndrome, drat! She even did her shaking stop breathing thing just as I cuddled up to her this morning, just in case I had any doubt. Then she was fine. She ate well and played with Chloe. As we left to go to kid quest she was all smiles and was happy to show off her new shoes and how well she walks in them. Her days are really full of so much good stuff right now. She is making lots of friends at school and learning a lot. 1st grade is so much more challenging that kindergarten was and that has really helped her to come alive, the girl loves to learn new stuff. This week in pt she did a quarter mile on the treadmill in just under 15 minutes, a new personal best! I could go on and on about the mounds of small meaningful things but I think you get my point, she is doing well. Earlier this year that was definitely not the case so I am really enjoying this season of everything going well. At the same time we have friends that are having new challenges thanks to rett. While it is nice to know that you are not alone it is heartbreaking to know the pain that somebody else is in since you were just there. I would never wish any of this on anyone, but these people are my friends (you know who you are) and I hate the thought of their hearts sinking as they are just trying to do the normal simple things in life and can't. So, to those of you reading this, strangers and friends, I want to remind you that there is hope. It is often so easy to forget, but it is there. There has never been more going for research in Rett syndrome than there is now. That is why we are going up to Oakland next weekend. To meet with doctors that are trying to figure this blasted thing out and also to help to raise the vital funds to support the research that the girls so desperately need. In the chance that you are reading this and don't fall into the category of somebody struggling to fight Rett Syndrome daily, please consider supporting Team Claire by clicking here. To the rest of you, YOU CAN DO IT!
There are so many ways that I could explain that last few years. They have been full of chaos, many things that were unexpected and harder than anything we ever could have imagined. There has also been unimaginable joy, laughter and some of the most amazing people along the way. I suppose it might be best to sum it up as quite the adventure. It made me think of the movie Space Camp. We were just a couple of kids, excited to sit in the shuttle during a test when boom, that wasn't supposed to happen and before we knew what hit us, we were in outer space. We spent all of our time talking in acronyms like OT, PT, SLP, IEP, GI, LPCH, AAC and mls. As our daughter slowly disappeared before our eyes we just sort of slipped into the land of doctors and disability. We blinked and three years had gone by. We were going to run out of supplies, be it patience, energy or any of our resources, we were burning through it all at adventure rate and that wasn't sustainable. We grieved good and hard and then started to fight our way back. We started with small victories like our finances and then moved onto larger obstacles like how to spend our time, grappling with our faith and eventually we got to the monster in the closet, rett. It has been exhausting to do so much hard work. I can see why people choose to continue to live in chaos, it is really hard to get out of. The month of August was the real reentry for us. I felt the excitement of getting back to normal but first had to get back into the atmosphere without burning up in the process. Once that happened and I had my feet on the ground it took a while to readjust to having gravity and all the other trappings of this world. Slowly it is all syncing and even running relatively smoothly. I sometimes even have entire days with not a single catastrophe. As I sit here and type this, Captain Awesome is clear on the other side of the country sitting on the edge of a different ocean than the ocean I was on today. I was a little nervous about getting to be the sole parent and grown up in the house for six days. Now with two days done, I can sit back and enjoy it. This must be what other people do, hold the fort down while their spouse occasionally travels. I am looking forward to things more than ever, now that we have safely landed and gotten our feet back on the ground. The whole adventure sure has given me a different perspective on living both in and out of orbit and for that I am grateful, but I really do hope to stay here for a while. On a side note, if I haven't returned an email or kept in better contact over the last few months, thank you for understanding. Things did get pretty crazy as I came back down and I look forward to keeping in better contact with you all now that I am back.
Over the summer, in an effort to maintain sanity, I purchased a princess sing along video for the girls. Most movies scare Chloe and they are long, so this was the perfect solution. I will admit that I used the video for when I was about to break and needed to go hide in my room for a few. I would then try to get whatever needed to be done during the rest of it, but I rarely sat and watched it with the girls. A few weeks ago (by this time they had watched it more than 10 times) I was in the kitchen getting dinner ready when Chloe exclaimed, "other girls, other girls, my favorite!" then as the song started Claire let out a loud sound of joy. This caught my attention so I watched with them. You can see for yourself, but the gist of the song is that the princesses don't want to have to be so formal, they just want to be like other girls, quickly I got it. You don't have to think long before you figure out why Claire would identify and Chloe often prefers what Claire does for no better reason than being the younger sister. With school starting I am again becoming more aware of the other girls. Those normal ones that wave good bye to their moms as they go off to 1st grade. The ones that play on the swings and don't have to be pushed, they also eat their lunches with no assistance at all. I think that in her non-verbal, clear as a bell way, Claire used her response to this song to tell me that is what she wants, to be normal. Funny, because that is what I want for it to be but sometimes I get so wrapped up in our special needs world, that I completely forget that the other one is out there. So how do I respond to that? For starters I went to parent night, but that is another post, one that is hopefully coming soon.
Could it be? Did we have a super normal fun filled weekend as a family? Yes, yes we did! When we first moved up here (and I was under the impression that Claire was a typically developing child) I was so excited to take her out to the farm, to cook with her and raise her to know where food really comes from (hint: not your grocers freezer!) As you might have guessed, that whole dream got interrupted when our life slid sideways with the whole rett thing. Saturday morning we got up and all headed out to our spectacular farm for their u-pick tomato event. We had never taken Claire out because of the situation with her wheels and all of the soft dirt associated with farms and I am so glad that we finally just decided to do it because it was awesome! As it turns out, everyone in our family likes to eat tomatoes right off the vine with a little salt, even Captain Awesome who has sworn off tomatoes for as long as I have known him, I had to get a little photographic evidence. There is just something so nourishing to both the body and the soul to be where your food comes from. Every week we get a big bag full of lovely produce from this farm and it was such a treat for everyone to get to see and smell where it comes from.Chloe was chief in charge of picking, which is a dangerous job for a 2 year old, we like to live on the wild side. She did such a good job, we ended up with 24 pounds which was enough to fill a few jars. Just as we were about to leave we were able to hitch a ride on the tractor to get back to the car (which was great because I was pretty sore just from pushing Claire the one way). Farmer Tom was so kind to help hoist Claire up and everyone moved around to make room for us. It is moments like that, when nobody makes a big deal about it and you just get treated like a part of the group that feel so good and go a long way toward the normalness that we seek. We got a little tour and the farmer even stopped to pick teddy bear sunflowers for all of the kids. Both girls absolutely loved the ride on the tractor and it was the perfect close to our little adventure for the day. Farmer Tom wrote about here it and if you look closely in the picture of the tractor with the wagon, you can see Claire sitting in the middle surveying the land.
As you might imagine, we were all pretty tired after all that fun so we went home to rest and get ready for our next adventure, which was only 2 hours away! Yes, us doing more than one thing in a day much less week, who knew that we could have so much fun?!?! After we all had a good nap we packed back up and headed to the beach for Erica's 21st birthday bash! From the sounds of it you might think that this sounds like an event that might not be appropriate for the girls, but it was. We met Erica at Kid Quest (the super awesome hang out/respit house that has saved my life a million times over) She and Claire both have a converse shoe fetish and that was just the beginning. As soon as we got there Valerie (Erica's mom who works at kq and loves Claire a whole lot) whisked Claire off to do introductions to everyone and I got to hang out and chat, which is something that I don't do frequently, but I could get used to it! Chloe quickly found the sand toys and it was so awesome to experience various people, some that I knew and others that I didn't come up and play with her. Claire hung out with Natalie while Jared went to get a closer view of the bait ball feeding frenzy (you can see it in the background). We all had hot dogs that were cooked over a big fire pit along with all the normal picnic food like potato salad and watermelon. As it got later we sang happy birthday and it was time for cake. Despite the cake being chocolate, after one bite, Claire clamped down and didn't want anymore. I saw that there was a little smirk in her face and asked if she was just holding out for smores. She laughed out loud and beamed with the brightest smile. Our friends around all laughed at what a clever and funny little thing Claire is. I quickly found some marshmallows and made my way to the fire to make what was the first smore for both Claire and Chloe. As the two of them ate them, covered in gooey wonderfulness, the fog started to blow in and the sun faded. I looked around and we were surrounded by some of the best people that I never knew to dream of. Here we have been fighting to get back to normal ever since our world got tipped upside down about five years ago and we have arrived. I am not sure exactly where or when it was that we stopped trying to make it back and just started living and enjoying a truly blessed life, but I do think that it was somewhere between a tractor ride through the tomato patch and Chloe going down to the water to free a hermit crab with a friend, none the less, we made it. With that, hello fall, I can't wait to enjoy you!