Funny, I thought I was on the ragged edge of exhaustion and fighting back, forcing myself to rest so I can get back to being somebody who thinks in complete thoughts. Well, after last week I learned that it is possible to function, much, much more exhausted. I knew that I needed to rest going into last week because we had planned for Jared to go back to Arizona on Friday to see his mom who was fighting cancer in the hospital. Monday I was worried as I felt like I was getting sick, my throat was sore and my muscles ached. Then Jared got the call, he needed to get on a plane asap. We immediately changed gears, Jared flew to Arizona and made it to see his mom hours before she passed early Tuesday morning. If you'd like to read about her life please click here. I don't think I have ever cried like I did that night. The sadness was overwhelming, this was a very difficult loss. Still, the days go on. Jared came home, bleary eyed and attempted to go through the motions. Later in the day on Wednesday Claire developed a pnuemonia, secondary to aspirating because of her cold. Her fever spiked, her oxygen stats dropped, we did all the stuff we do when that happens and five days later she has just started to laugh again, her vibrant self is emerging from her tired body. We are preparing to drive to Arizona in 36 hours. Short of reserving a rental car and a hotel room, nothing has been done to prepare for that. I could be freaking out. I could be huddling in the corner, overwhelmed and fearful. But today, on our way home, I drove with the sunroof open, Imagine Dragons blasting, Chloe singing and Claire laughing. I have so much today. So much to enjoy, to savor, to fight for. So with that, I will leave you with this.



Have you even thrown your name into a hat, without thinking about it much, figuring you won't get picked so it won't matter. I sorta did that. In late June, when I was exhausted and clearly not thinking well, I saw a post on Jon Acuff's blog, something to the effect of; adventurers wanted, 24 people, 24 days, 1 awesome result. There was mention of risk, passports and machete's so of coarse I sent in my info to join, doesn't that sound like what a tired mom needs? Fast forward, I am somehow in this Start Experiment and before groups get assigned I need to pick a risk for the 24 days. I was so depleted that the only thing I could think to risk was figuring out how to restore myself. I didn't think about it long, it's what came to mind and I went with it. Ever since then I have been trying to figure out, why is that a risk? What makes restoring myself dangerous? I've come up with a few hard answers. I want to share it here because I am curious, anybody else ever feel like this? If I am completely honest, I am afraid to rest, restore, have fun because I fear that those around me will think that everything is alright. How can I possibly be rested and having fun in the same day that I hold our 7 year old limp and blue after seizures? The truth is that is my reality. I have to do just that, enjoy one moment and grieve the next, if I stay down I choose missing the good stuff and I am not willing to do that. It doesn't mean I don't need support but I fear that is how it will be taken. The other thing that holds me back is the fear of failing at whatever it is I attempt to restore myself. It happens, grief has a way of striking when I attempt to rest. Regardless, I know I need to do it. I reached a level of exhaustion last week where it no longer became an option. This needs to happen, I know it will be good for me. My favorite part about this is that it's an experiment, you can't fail at an experiment, you learn from it. So here's to what happens in the next 22 days, so far I took a bicycle ride with Chloe and got a red journal.


Scared, the other side of tired

Much to my delight, yesterdays half thought out post primed the pump and it appears that I am able to think in full sentences again. As the clearer thoughts trickled into my brain I realized something, not only am I tired, I am scared. I am scared because I can't figure out how to get untired. I went away to the wine country and came back just as exhausted as when I left. I feel guilty that no amount of rest seems like enough. I told Jared that I was exhausted and needed to be taken care of, nursed back to health and with the most loving and sincere eyes he looked at me, his lack of words said, if only I could. He too is depleted, empty. So we sit together, get takeout and fall into the couch at the end of the day in exhaustion, neither of us have anything to say, there is no tension that fills the space, it's empty. And so I am scared. I don't see the way out right now even though I know it is there, I know we will make it. I know that both Chloe and Claire are doing well by all measures. Claire is healthy by normal standards, which is phenomenal given her genetics. Chloe has imagination and energy that surpasses many of her peers, she lives and loves wholly. That reminds me that even in the exhaustion, we are doing a few things right, but it's not sustainable forever. I wonder, how long can we go like this, how long will this much be required? I know that right now, it is summer, the days are much longer than during the school year. I only have to make it at this insane rate until Sept. 2. I think about all the research that is happening TODAY and how hopeful that looks. If a treatment is coming, I feel like I can run on this little for a few more years, to finish strong. I would gladly finish ragged if there is a medication that Claire could take that made it so she could use her body more. I would love for her to be ready, physically and mentally strong and ready to rehab, which might actually be our reality. On the other hand the treatments that all look so promising could slide sideways, the research could take another 20 years and if that's the case, I don't think I can hang in that long. Either way, I feel better just thinking about that day, the day that there is a treatment. Lucky for me I am at delusional level of tiredness so it's isn't that hard to believe. So I continue to waver between scared, tired and hopeful and I will just tell myself that I'm not bipolar, my life is. I also drink a lot of coffee.


It's no wonder I'm tired

I know this comes as no surprise, but I am still tired, ragged edge of sanity tired. I dropped my cup of coffee, completely full, for no reason other than I let go tired. All sorts of little things have been slipping through the cracks. I missed a deadline to file some important papers for Claire's insurance. Claire's new shoes bruised her toes and it didn't occur to me that is why she cried when she walked for three days, it was her pt that figured it out. I carried Claire down three flights of stairs to get from our car to our home only to remember that we moved in because of the elevator, that was so perfectly right next to my car. I am just not thinking well right now, I am not feeling either. It is a little scary to feel so numb, maybe this is my attempt at looking over what we've done and seeing why I am so depleted. I can't articulate well the highs and lows, so I will share a few pictures and a video clip of something that is very exciting to be working on.

We enjoyed the aquarium and ran into a favorite friend.

 I parked with a nice view while Claire slept off some crazy brainstorms.

Of coarse, when she came back a few days later she was more fabulous than ever. 

We enjoyed a few decadent mornings before Claire worked on her walking and standing.

We took the girls to Monsters U, which they loved.

We tried to wear Chloe out on her scooter, to no avail.

Jared and I got out for 2 hours, the first time in months!

We met up with Claire's friend from school at the aquarium, first real play date was lots of fun!

We celebrated the 4th of July with a parade and fireworks.

One of my oldest friends came up to visit. We headed up to Sonoma for a little child free space.

Chloe has started to climb trees.

And Claire has started to work on this...

There's been a lot of highs and lows, now to figure out how to get rest :-)