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.
3 thoughts on “Scared, the other side of tired”
summer is a marathon for special needs parents. i am running the marathon right along side you! at the beginning of the summer i felt such a deep sadness. it's those first nights of hearing kids running and playing, enjoying all the carefree kidness of summer that gets me, then i kind of adjust. no matter what, changes to routine are hard. thinking of you and your family always…
Colleen, you are so right! When you say it like that I feel like I should grab some shot blocks and plan some time to ice down. Just hoping the marathon ends when school starts 🙂
I can't think clearly enough to write an understandable comment right now. My April, May, June and July have been insane on many different levels and I'm so ready to just breathe. I need to make it to August 14th, but right now that even seems impossible! There is much to be done and I can't seem to do any of it! I just love you.