After the Storm

 I can great hopes for this post, a nice positive post about how even through complete and utter exhaustion I am loving my life. I would love to go on and on about how much I am loving spending time at the ocean with Chloe while Claire is at school. Or how cute it is that Chloe pushes her baby to the bus while I push Claire. Isn't imitation one of the highest forms of flattery? I just hope that Claire isn't hanging out of her chair like that.

I was going to blog about how great it has been to reconnect with food. Not only have I been loving getting to cook all of the food in the CSA. I have been cooking with the girls and I am loving every minute. We made whip cream together and then they helped me assemble the strawberry shortcakes. Teaching them about food, where it comes from and how it works really is a dream come true for me. The large majority of my life right now feels like a dream come true. It is truly a privilege to get to be a stay at home mom and I certainly am not taking it for granted. I really do feel like the storms that have been hitting us over and over have subsided and it has left me open to really enjoy it all. As I try to sit in a place of gratitude and appreciation, all of the sudden I get smacked in the face with the rest of the reality. The ugly not so wonderful part of my life. You see, this week Chloe turns 2. I know that doesn't sound like a bad thing and really it isn't. Except for some reason it made me think about when Claire turned 2. It was two weeks after we had gotten the diagnosis. For her birthday we took her to an evaluation for therapeutic horseback riding. I had forgotten to get a cake or anything of the like so we swung by the market on the way home and picked something up. We had a friend with a daughter close in age with us that day. The two girls sat at the little toddler sized table and ate their cake together. That's right, Claire fed herself cake. I remember it so clearly. I know that Chloe will also feed herself her birthday cake but I will look at it differently. As happy as I am that she is such a brilliant and vivacious little girl, I can't help but wish that for Claire as well. I know that everything in Claire's spirit wishes to run and jump and play the way that Chloe gets to, to eat cake and be silly. In the big mess of thought and emotion that is swirling within me I, I keep hearing these lyrics:

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

I know that this wave of grief and pain will come and go. My hope is that tomorrow will be one of those days, one filled with love that washes away all of the bad. At the very least I do expect that it will be a lovely day for a walk and we can always put flowers in our hair.

Best.Easter.Ever...at least so far

Step one, two hours at the beach.

Step two, making our own dye using red cabbage and beet peelings.

Step three, have a ridiculous amount of fun.

Followed by beets cooked in leftover bacon fat from breakfast.

I sure had some great help for the project.

It shows, the eggs came out great!

It went so well that we did baskets for the very first time.

So glad that we did! The girls loved it!

Then we were off to the aquarium to meet up with Kat, again, an abundance of fun!

The great time was perfectly completed with a trip to Ghiradelli for ice cream.

After great naps the girls had so much fun playing, giggle and joy filled our home.

The two pretty much cuddled and giggled themselves to sleep, sorta what dreams are made of, right?

Possibilites...

 

If you have been reading this blog for any amount of time, you would know that I am often tired. It was a week and a half ago that I got pushed too close to the edge and had to take an emergency step back. Claire was back to her lovely seizure-free self, but somehow between the late nights and the sleep study leading up to that, I became absolutely exhausted. Then we had the unexpected opportunity for an impromptu appointment with our neurologist, which was great, just not a restful experience, driving in San Jose at rush hour never is. It was Wednesday morning, Claire's last day in the autism class before going to the new school and I broke. I called Jared to inform him that I would be checking into a hotel to sleep on Saturday. Of course being Captain Awesome, he said sure, not really, but after talking about it that night he understood and was on board. That afternoon, in an email that I truly believe was affirmation from God for my plan, there was a deal to a hotel in San Jose. It was called the Sainte Claire. The deal included valet parking, breakfast for two and a bottle of wine, perfect! It was just the motivation that I needed to keep putting one foot in front of the other. Finally Saturday came and I carelessly threw a few things in a bag and headed over the hill. Upon pulling up to the valet I could feel my muscles starting to soften, as I made it up to my room I even felt a bit carefree. I had nothing that I had to do.  In the past I have often struggled with my "free" time. Jared will often offer to stay home with the girls so that I can get away, just to find myself down in the dumps because I can't think of anything to "do." There is a sense of needing to rest or have fun NOW because I don't have the girls, but it is so hard to do that on demand, especially when I am tired exhausted. I literally dropped my bag and collapsed onto the bed. After a short rest I looked around and actually really started to enjoy my new temporary surroundings. For one, this room had one of the greatest hotel bathrooms ever! I am a bit of a geek about bathtubs. There are few things that I love more than a long hot bath, in a solid tub. Not a plastic one like I have at our home, a cast iron tub like the one I grew up with. Not only was the tub cast iron to keep the water super hot, there was a beautiful painting on the ceiling, with clouds and butterflies. I actually had to rest from my hour long bath before making my way down to dinner, it was great! My room was on the sixth floor, also the top floor, and there was a great staircase that went all of the way down. Aside from the elevator ride up upon arrival, I exclusively used the stairs for the trip, a luxury not afforded when with somebody on wheels and I relished the slow pace of using the stairs.

 

Eventually I made it down for my first time sitting at a table by myself at a restaurant, but it wasn't as bad as I thought it would be. Again at breakfast I sat there alone, but by then I was so rested, I could actually enjoy it. I really geeked out on the breakfast menu. I did breakfast at a fancy hotel back when I worked, so I have a special place in my heart for that. I was really impressed, the breakfast really was very tasty.

 

 As I sat and savored my calorie laden french toast, I enjoyed looking around and noticing all the old stuff that was in the building.  Silly things like the letter drop that ended in the lobby, I guess long ago people mailed things? It was then that it hit me, I enjoy hotels. Not just because I like being away from home, but I think I can classify myself as a bit of a hotel geek. I have struggled for so long to find something that recharges me, something that I enjoy, alas, this is it, I like hotels! I like observing, sitting back and watching the various stories that unfold all over the place in a good hotel. Having figured out something that I have an actual interest in, that doesn't involve either of my children, I felt like I had just gotten a shot of pure oxygen. Perhaps this is just the beginning of starting to try to be a person again, a real person who has thoughts and does things outside of the daily list of stuff that is required because you are the mom. I have to say, I am very excited about the possibilities.

 I am so glad that I took the time out, to rest, to come back into my skin a bit. Once I returned, Jared and the girls were ready to get out of the house, so we went to the beach, I am so glad that I wasn't too tired for this...

Mumford & Sons - Lover of the Light, Live From Coachella 2011

Really, I will update with words sometime soon. I have been watching this video a lot lately, I love Mumford & Sons and figured that maybe you would enjoy the video too.

Why I Stopped Advocating

When Claire turned 1 I had no idea what it meant to advocate for somebody. Just as she turned 2 we learned that she had Rett Syndrome and that there was a lot that we could do to help her. We had a really great early start team and I never really had to advocate. I never asked for anything that I really didn't think that Claire needed and we were rarely denied anything as it was clearly necessity. Then she turned 3 and we transitioned into the school system. It was a very frustrating process to say the least. We were told that she did not qualify for orthopedic impairment, denied an evaluation for physical therapy and my request for a dedicated aide was not considered. I picked my battles and I fought like hell. She got pt, she was deemed to have orthopedic impairment and I was tired, exhausted. Fighting just isn't fun. Everything that I had to 'advocate' for was with the district, not the actual people that we work with, but it did get taken out on them, in the form of me just not feeling very warm and fuzzy about the whole situation. I never wanted to be the pissed off mom of the special needs kid, but somehow I had fallen down that slippery slope and woken up one morning very close to bitterness. So I stopped. I did not give up, I just stopped fighting and it was the best thing that I could have done. I found the people that believed in Claire the most and I worked with them. In the mean time Claire turned everyone else into believers, how humbling that she did the hard part and left the easy stuff to me.  It wasn't long and everyone that she worked with was a believer. For the first time, my contact with the school was limited, because there wasn't much that needed to be discussed. They were doing a great job with her, she was learning and having fun, so I took myself mostly out of the equation. Then the winter came and Rett started to play it's mean tricks on Claire. All of the sudden there was more to communicate again, this time the teacher and therapist were listening to every word I said and really trying their best to support Claire with the new challenges. Additionally, I listened to them, they really had gotten to know Claire well and brought a lot of good ideas to all of the trouble shooting we had to go through to get a good, safe, stable environment around Claire.  One morning, as I was dropping off Claire's computer, the teacher came in to talk to me. She wanted Claire to have a one to one aide. I couldn't believe my ears!!! I know so many people that have to battle, go to war to get an aide, here Claire was being offered one on a silver platter. Still, this was just the teacher, we still had to work with the school district and the county to find the appropriate place for all of this to happen. A few days later, there was a class for me to look at, a few days later, there were papers to sign. The whole thing has gone down without even having an IEP meeting. I am so glad that I stopped fighting and trying to push my agenda and what I thought was best onto the team that works with Claire. It really enabled them to be able to listen to Claire and respond with what she showed them she needed.  This morning I got a phone call from the teacher while I was playing on the beach (really wish I was blogging about that, please see the flickr pictures on the side, it was epic!) and of course, my first thought is, did they already call the ambulance? What is wrong now? But no, not today. She stepped out to call me because she was so excited. Claire's new aide was there and Claire was being her awesome little self, so much that the teacher couldn't contain herself. Apparently, Claire first used her talker to say, "This is my talker, it helps me speak" Before going on to her family page and telling about each of us. The talker was on her left, Alexandra, the aide on her right, Claire would look at Alexandra after each statement and wait for a response. If there was any doubt in my mind we were making the right changes, I am pretty sure that Claire just gave us her seal of approval. Now, I just need to keep practicing being quiet enough to continue listening, lucky for me, the beach turns out to be a great place to practice that!

Where you go, there you are

Lately it has felt like I have taken quite the beating from life, most of it compliments of rett syndrome and chrone's disease. I won't bore you with all of the details, but I have been talking to doctors way too much! For two nights Claire has been having what we suspect to be cluster seizures in her sleep while she is still fighting off pneumonia. Yesterday horse therapy was canceled so that we could go to urgent care. Once we got her in bed and asleep it wasn't long before the episodes started, we were on the phone with the doc and had the Valium ready to give in the even that we couldn't get the seizures to stop. I fell asleep in her bed, holding her, shaking her every time an episode would come. Around midnight I woke and realized that she was alright and that the hell had passed so I stumbled back to our room to collapse.  About six hours later I heard more sounds on the monitor. I ran in to check on Claire to find that she was simply back. Happy as a clam and laughing in her bed, trying to wake her sister. I tucked her back in and she eventually drifted back to sleep. It was in the moment of the short walk back to my room that I heard it, it was a peaceful silence, it was such a fond old memory. I used to get up early to go to work and I loved the still of the morning. Feeling oddly rested and inspired I deiced to b e up for the day. With everyone asleep I was even able to shower! I made my way to the kitchen, did the dishes that hadn't been touched in days and pulled out the bag from the CSA. It might not be exciting to you, but this was the first week of the season for our CSA and I get rediculously excited about it. I even took a picture of it on Wed. when i picked it up.  

It was such a pleasure to go through and plan what I would cook, first I had to take the two slugs out of the bag and relocated them to the side of our porch. Then I made ravioli, broccoli and the pasta for the week. Just as I finished Claire beckoned that I come get her that very moment. She was very happy to sit and watch Food Network as I finished up. I let her choose what we would have for breakfast, she decided on pancakes, or as Chloe calls them, pan-cup-cakes. Jared slept in a bit as the girls played, I made pancakes and finished up the dishes I started. At ten to 8 everyone was happy, the food was hot and I felt at peace. It took me back to eating pancakes on a trail ride in Colorado. One of the cowboys had said over and over, "Where you go, there you are." I know it sounds obvious, but it was sure a good thought to have. I don't have to stay living every minute in pain and fear because I don't know what will happen next or bruised from everything that just went down. I can be where I am and enjoy it and it certainly helps when my house is full of really great food!

The New Math

What to do, what to do? I added it all up and it seems that my life requires 120% of what I can humanly do. Yet, I added up how much I have to give and it only adds up to 95%, you see my problem? Let me explain in greater detail. I get to give myself an injection once every two weeks. My last dose was mid March. Knowing that I had one dose left, I called and scheduled to have the refill sent mid march, when I would use up my last dose. Somewhere in that time they called to confirm delivery and left a generic message on the machine, I meant to listen to it again, I just didn't. Suddenly it was March 30, two days away from the next dose and I realize that the shipment never came, not good. Of course in that time the pre-authorization for the med ran out even with the refills available, they couldn't ship without first getting the paper signed by the doctor. As it turns out, that person was out until Friday and there was no other person that could possibly fill out the paper. It was so frustrating to have forgotten this, how could this happen? I need this to literally keep from bleeding internally. As mad as I was at Cigna for not shipping it or calling more to verify the shipment, I was so mad at myself, for not thinking about this Monday, or a week earlier. But I had, I had thought of it, just never at a time that I could pick up the phone, sit on hold forever and have a conversation without Chloe shouting ELMO over and over throughout the whole thing. By Friday afternoon I was exhausted from fighting with these people and had given up. I had also had the pleasure of calling on the table mount for Claire's talker that we can only use at home. The vendor said they faxed it, Cigna said they didn't get it, I call and all of the sudden things move. Then there is the wheelchair we are working on, same story. Needless to say, I had done a lot. I hadn't just curled up in the corner and cried through the whole week (which would have been completely understandable), I had kept Chloe from needing a trip to the ER(nothing wrong with her, daily she does things and I am surprised she is not more hurt than she is), Claire only had regularly scheduled doctor stuff, I had enjoyed the park with Chloe and tried to take a little down time for myself. Saturday came and it was the day of the sleep study that I wasn't super excited about, it would be our 7th trip to a hospital in a 6 week period. We got all ready, loaded Tangled on the iPad and headed to LPCH, where they didn't have our chart. I had said to Jared as we were getting ready that it was weird there was no call to verify the appointment, because it didn't exist. So I go to check in they don't have a binder with Claire's name. We wait in the art room while they look into it and try to fit us in. It was then that I lost it. I knew the lady said she would email me and I never got the email, but it was just directions, which I didn't need. Was I supposed to confirm? Did I miss a form to sign? On the heels of the previous weeks frustrations with order drugs and equipment the weight of rett syndrome came crashing down on me.  It is too much. I suppose I could not sleep, I could not slow down enough to feel and have emotion, if I didn't take the time to feel I could get so much more done! But I have decided that I don't want to go through this numb, I don't want to miss the little bits of joy that are mingled amongst all the chaos. Today I called to reschedule and find out where it had gone wrong. Turns out the only problem is in my head. Everything is all set for Sat. April 9th, apparently I am using the same math to count days as I do things on my to do list and it just doesn't add up.