November 26

I marvel at where we are sometimes. I marvel as I watch Sarah listen to her piano teacher, watching what K. does, and doing her best to do the same. I marvel as I watch Sarah play with Amy, engaging ever more in what might be labelled normal play. I marvel, not because these moments are new, but because there was a time when we didn’t know if they would come. It is good to keep the amazement fresh and crisp.

I marvel at how awful my truly awful headaches are and how I can somehow forget. I forget because as they ramp up in the cluster then I experience really bad ones and I somehow think they are the worst and that I am managing. Oh no. Not by a long shot. I wrote a short poem to help myself remember. Please hold me accountable if you ever witness me thinking I can handle a cluster on my own again. I can’t. It is also no good for my family. Give me my own words back. 

I forget

I always forget

just how bad

how impossibly

unimaginably intensely horrific

pulsing through my sleep

waking me with a warning

or a full blown attack

a knife through the eye

lightning through my brain

my legs run miles in unstoppable movement

trying to outrun the pain

I cannot do this

but what choice at this moment?

never

never

never again 

will I try to endure

will I think I can

forever more I must remember 

no more waiting

There can be no waiting to start the Verapamil. I cannot thank Carl enough for being with me in the middle of the night so many times, multiple times in each night, holding me with calm hands that somehow sometimes miraculously put the beast back in the cage after half an hour, as if it had never been. He becomes my Alexander teacher, helping me find my alignment when my pain takes me into the worst crumple. Thankfully, now I can marvel at the efficacy of Verapamil. I have built up to my medium dose and already there is improvement. Two nights ago was bad, but not at all the worst. Last night was headache-free. 

Our Thanksgiving break has been lovely. We are catching up on sleep. We are sorting through toys and books, making a huge pile of things to donate. Not that you will necessarily be able to tell. We still have too much crap.It is a marvel! Amy can make decisions and agree to donate things. Sarah would choose to keep everything because she loves having everything she can ever remember. Unless she is playing with an electric train set and then she is distracted and agrees to donate everything. I try to be careful in my decisions so that nothing Sarah truly deeply loves would go. Anyway, it is wonderful to have a staycation and be able to do house things that have been waiting for years.

We also went to an ice cream parlor with Sarah! There is one in Lawrenceville called NatuRoll. They have non-dairy options and if you have allergies then they take extra special care. Sarah’s ice cream station was completely cleaned before they made hers. 

I hope you had marvelous Thanksgivings.