My alter ego, the superstitious southern Italian peasant woman needs to just come on out and tell ya'll that Sophie's seizures have dramatically improved. This might be because the IVIG has kicked in
or the new drug Vimpat is helping
or the weaning of Keppra (she was on it for over seven years but I refuse to allow more than two drugs, so it had to come off) is helping
or the combination of all of the above, coupled with regular visits to the osteopath are conspiring to improve the strange workings of Sophie's brain
or the planets have finally aligned for her.
Your guess is as good as mine.
But it's good, really good.
And while I feel a bit like the pile of ashes left behind as the phoenix soars, my gratitude, hard-won, could burst at the seams. I'm adrift, laying back, my face to the sun but too tired to row.
30 comments:
Or maybe it is all the love and the caring and the hoping that moves through the mysterious ways where those who hear the pleas for the ones we love finally realize that we need and we are grateful for any sign of hope.
Happy as hell over this news. You and Sophie are so close.
love,
rebecca
float dear friend...
Crossing fingers, lifting prayers. So glad, Elizabeth, so glad
I know that Sophie has such profound challenges in life, but you - you are her blessing.
I'm so thrilled! SO thrilled. And hope you really can float for a while...
It's not just the superstitiousness, you also have the remarkable resilience, perseverance, and strength of an Italian peasant woman. I think you are amazing, and you should just let yourself float a bit without feeling guilty about it.
I'm glad the seizures have decreased, for whatever reason.
Whatever. It is. I am grateful beyond measure for you. And now that you can rest a bit more, you are realizing how profoundly exhausted you are.
Normal.
Now. As rebecca said- float.
beauty, feels soft and released
Good news. Now take care of yourself.
Drift on! That is fantastic to hear. Simply fantastic.
It's so hard to stop wondering and pondering when things like that happen and just let them happen, regardless of the reason. I hope that Sophie continues to have relief and you can enjoy these days without looking over your shoulder.
WOOOHOO! I do know, however, the phenomenon of finally getting what you want, and then being too worn out from the fight to enjoy/appreciate it.
Coast. Don't row. Bask in the glow of those aligned planets.
Love to you all.
Whatever the reason, hurrah! Keep it coming.
so wise of you to turn your face to the sun in gratitude and take your hands of the oars for a while. i am so happy for you and sophie.
peace
Oh wow, goosebumps.
I loved your last line, felt it, saw it, brilliant. Enjoy the sun. Long deserved.
I'm so glad!
May you be restored and replenished xo
Not rhyme, nor reason,
not this time of year nor season.
Will explain the confounding,
the confluence, the sense of treason.
But somehow, the gods of seizures, you are appeasin'.
So so glad to hear it...
So deeply glad for you, and Sophie, and your family. It warms my own wee corner of suffering and makes everything, brighter. And damn girl, you sure can write!!
Ah, the gift of good news - and how it stengthens all of us to share it. Thank you for your generosity, in spite of the voice of that beautiful southern Italian relative.
May Sophie's health continue to improve; may you feel the energy of her healing, also in your own body and spirit. May blessings abound upon all of your family.
Enjoy it--both you and Sophie!
Best,
Bonnie
I am absolutely THRILLED to read this update. I pray that I can type something similar one day about Emily.
Soak up the good times!
i am quietly rejoicing so as not to disturb the peasant woman. just keep your face to that sun...
Well if it's the superstitious peasant woman coming out to tell us, it must be a for real thing. I know how she wouldn't say anything prematurely and jinx it. Maybe it's time for her to go back to the old country anyway. Your boat is still floating even without a rower .....
So glad to hear your good news about Sophie's improvement. And love that you and Ruth connected over her beautiful work. Fingers crossed, salt thrown, and star wished upon that the seizures diminish.
I was going to leave this space all sacred and as is.
But I want you to know how this is just so incredible.
love love to you both, to all of you.
baci baci
( and I love Italian way more than French. My daughter that is at McGill , is not impressed either. She took one year of Italian at high school and is practically bilingual ( I'm sure she has absorbed much via the nonni and zia , but still ) , but here she is living in Montreal , very French compared to when I lived there, and she just isn't feeling it. )
So happy to read this.
I am cautiously superstitious about recent medication influenced improvements over here too.
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