Look who decided to show up for dinner!
That's what Oliver said in his inimitable Big O'ish way last night when Saint Mirtha decided to let Sophie sit in her regular seat at the table instead of the wheelchair. She's been fed in the wheelchair for weeks and weeks, unable to sit up very well or swallow properly, but over the last week and since I weaned her a bit more from the benzo Onfi, she's gotten stronger.
I'm grateful for my children's sense of humor, for Sophie's irrepressible life, for trust in my own instincts, for the generosity of family and friends, for the moments of grace when relief comes out of nowhere, for Virginia and New Jersey this morning.
Most of all, I'm grateful for all my people who do this thing we do and for their children who inspire and honor us. It's National Family Caregivers Month (or National Fucking Family Caregivers Month, as my friend S calls it). Happy NaFuFaCaMo, all you MoFuFaCas!
What do I think? I think we're on the right path for NOW, and there's really only NOW.
My friend Carrie Link sent me this video this morning. Natalie Merchant's album Tigerlily was released on June 20, 1995. I listened to her song Wonder over and over throughout Sophie's infancy and childhood. I realized today when I looked up that date that it was the day we left the hospital after her diagnosis on the 14th of June, 1995.
As Carrie says, there are no accidents.
Doctors have come from distant cities just to see me, stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders
of god’s own creation and as far as they can see they can offer no explanation.
Newspapers ask intimate questions, they want confessions. They reach into my head to steal the glory of my story. They say I must be one of the wonders of god’s own creation and as far as they can see they can offer no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
People see me; I’m a challenge to your balance. I’m over your heads; how I confound you and astound you to know I must be one of the wonders of god’s own creation, and as far as you can see you can offer me no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as she came to my mother, “know this child will not suffer.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
I am most grateful to my "homies" in the great Commonwealth of Virginia, for the voters in New Jersey and for Sophie sitting at the table.
ReplyDeleteBest,
Bonnie
Chills. That's all Mary - she is not one for subtlety.
ReplyDeleteAh, beautiful.
ReplyDeleteOliver is awesome.
ReplyDeleteI am going to check what happened is Virginia and New Jersey. :-)
This gave me chills, the good kind. Oh, wonder.
ReplyDeleteBeing back at the table is as beautiful a metaphor as it is a reality.
ReplyDeleteAnd Oliver- excuse me, when he did he grow up? Was it this week or last?
I love seeing Sophie looking for the next bite, eager to eat.
ReplyDeleteYour kitchen must be an amazing space. It has seen so much, absorbed so much and always looks like it offers so much love and safety for your family - a sacred place.
I am sobbing and it's okay. A fitting response. Sophie at the table, you here sharing this with us. Oh, so much that is holy, how do we not simply spin with the impossibility of it all. xo
ReplyDeleteI remember listening to that song over and over. I loved it. And that video, OMG people suffer in this life. There is suffering and there is joy too. I'm glad Sophie made it to the supper table.
ReplyDeleteThe simple of things is really what life is all about. If we would live like this more I think we would appreciate more. Eating, sitiing at the table with family etc. Love you sophie, Elizabeth and boys. Love from bertram's
ReplyDeleteWonderful to see your family in action, Elizabeth and to see how well you hold onto humour and good will, all of you through every irrepressible day.
ReplyDeleteWonder! You and Sophie and Oliver at the table and the story of one of the many families that Natalie Merchant touched with her song.
ReplyDeleteJust learned that the Democrats took back the legislature in Washington State, where I live.
Take what you have gathered from coincidence. This past week a dear friend of mine who was abandoned by her mentally ill mother and adopted as an infant in Germany by her American parents in the 1950s and who suffered from bipolar disorder throughout her life, died peacefully after what she said was the best year of her life, in astounding recovery from alcoholism and drug addiction. She blossomed. Among other of her belongings, her mother gave me the round blue fabric case holding the handful of CDs that she owned. The first CD I saw when I opened the case was "Tigerlily." Although I am fond of the Natalie Merchant's voice and aware of her kindness, I had not heard that entire CD before. With faith, we'll make our way.
Sending love to you and your family.
Good grief! Is that Oliver?! He looks so grown-up! I'm glad Sophie was able to re-join the table (a metaphorical act, as Ms Moon pointed out). Your Onfi resistance is paying off!
ReplyDeleteThis is unbearably beautiful, Elizabeth. Thank you—infinite gratitude.
ReplyDeleteThank you so much for introducing me to "Wonder". It reduced me to real tears - I can't remember when that last happened. I suppose it resonated particularly now, with C. in the hospital and doctors standing around her bed every day.
ReplyDeleteNatalie Merchant is a gem, and this song always made me sob, but never more than this morning. So glad Sophie is doing a little better and I love that Carrie is the one who sent you that link (ha! pun intended). I am breathing deeply for you all and holding you in my heart and raising my fist in the air in defiance against the fucking hypocrites who make things so much harder just because they can. I love you.
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