Kaitlyn and Lisbeth, 1986mixed media on Rives BFK, 1986
Kaitlyn and Lisbeth at Mount Hope, 1986mixed media on Rives BFK, 22" x 30"
Lisbeth and Alec, summer 1986.
Lisbeth and Alec, 1986.
Lisbeth's 3rd birthday, October 27th, 1984.
The Millers, summer 1984. Clockwise from Lisbeth (center front): Kaitlyn, Andrew, Garry, Eben, Martha, Alec.Feeling some sadness this morning. Lisbeth is in the midst of a rugged seizure cluster. I am grateful that she has dedicated helpers who take good care of her through these hard spells, and I'm grateful that I no longer have to observe every one of Lisbeth's seizures. Even though I have seen thousands of them, there is a level where I have never gotten used to this.
I've often remarked that I had no idea we were living a charmed existance before Lisbeth became ill in 1988. Life is like that, isn't it?
In my junior year at MECA in 2005, I took a memoir class with professor Claude Caswell, and he gave us many powerful writing exercises, including several "free writes." One morning Claude told us to do a free write on the topic of lost love. "Write about lost love for 30 minutes," he said, and he set the timer...
Lost Love
My heart is beating
fast
scared.
Write about lost love
he says.
All I can think of
is Lisbeth
and how
I lost the little girl
she was
that day
in sparkling summer.
She'd been ill
and was feeling better
then awoke
that morning
saying
Mommy
I don't feel good.
I laid her on the couch
and gave her some Tylenol.
Twenty minutes later
It happened.
She was grey
eyes rolled back
the whites of her eyes now yellow, moist
a faint clicking in her throat
her body stiff
jittery
I yelled to Garry
to come.
Call 911
he said
and somehow
I did.
Waiting on the front steps
for the ambulance
the word epilepsy
playing
in my head.
The ambulance.
The men carrying her out.
Garry rode with her
I followed
in our car
praying
oh god
please
this is not
how I want to grow up
The ER.
Lisbeth
on the stretcher
they'd cut
her pink summer shorts
in half
tubes
down her throat
And Garry.
leaning over her tiny body
her shiny white blond body
her perfect pink six year old body
her blue eyes
shut.
What
(The Fuck)
was happening
wanting to turn and run away
Garry saw it in my face
and said
gently
c'mon Mart.
I walked to the cot
where she lay
and I
began
to sing to her.
I sang all the lullabies
I'd sung to her
when she was a baby.
I knew what my job was
now.
Years later I would dream that Lisbeth's head
was just an egg
an egg that I held in my hand.
The doctors came in and said
that they
could re-attach her head
an egg that I held in my hand.
The doctors came in and said
that they
could re-attach her head
to her body
but
I saw them look at each other
worriedly
doubtfully.
I saw them do that.
And all the king's horses and all the king's men
couldn't put Lisbeth together again.
but
I saw them look at each other
worriedly
doubtfully.
I saw them do that.
And all the king's horses and all the king's men
couldn't put Lisbeth together again.
Martha, the grief lives on in us, doesn't it? We learn to cope, sure, but it's always there. I'm glad you have this outlet and can share with us. In a way, it helps to keep things in our lives in prospective. Thank you for sharing your lovely family pictures, your paintings, and your heart. ~karen
ReplyDeleteThis is incredibly moving. Thank you for sharing it. I only discovered your blog recently and if it means anything, I am finding your positive and creative attitude truly inspiring. I have a daughter who is sick at the moment - nothing like as seriously as Lisbeth, but still quite poorly - and your approach really is helping me not to get too low about it and to find energy to keep supporting her.
ReplyDeleteSob!
ReplyDeleteThank you for sharing this...how profound and emotional. Lisa L.
ReplyDeleteReading this made me cry. Life can change drastically in one small second. Thanks for sharing your pictures. What a beautiful family.
ReplyDeleteHi Karen
ReplyDeleteThankyou for reading and listening! Writing is a great outlet! Yes, grief does live on! It dies down and then it'll rear its head again, huh. Today's a better day!
Hi Jo
ReplyDeleteI'm sorry to hear about your daughter! Are you her primary care-giver? It can be so difficult and exhausting - I hope that you have some outside support! I took care of Lisbeth for the first 6 years of her illness and it was brutal. That was the toughest thing for me, asking for help. But I finally HAD to. When Lisbeth was 11 I found out that she was eligible for The Katie Beckett Waver ( a special medicaid that waves the family income and takes into account just the child's needs). We could then afford to have nurses come to the house to help with Lisbeth's care. A Godsend.
Hi Sue.
ReplyDeleteNot bad thing.
Thankyou, Lisa L. I first posted this on my other blog a couple of years ago, and was hesitant to do so - it seemed too raw. But it did feel good to share that hard day. I reposted it here at the urging of my sister Sue who suggested that I tell more of the beginning of Lisbeth's story...
ReplyDeleteOh, thankyou, Deborah. We all have the rug pulled out from under us at different times, don't we? I remember thinking, Why Lisbeth? Why me? Why my family? Then I thought, Well, why NOT us? Everyone gets dealt some hard cards at some point. And THEN I remember thinking, Thank GOD it's us! Because Lisbeth might have been born into a family that simply could not handle the situation...
ReplyDeleteStunning, heartbreaking, and beautiful. The photos of Lis before the illness struck just pierce the heart.
ReplyDeleteMartha, it's Megan from a scent of water here again. I have started a website celebrating quite acts of courage, and I thought of you (obviously) and this post especially. I was wondering if I could share it on the site? There would be full links back to this blog, your blog too if you would like, and Lis' etsy shop too.
ReplyDeletePlease let me know via email (athousandcheeringstrangers@gmail.com) if this is okay with you.
I meant 'the' scent of water and 'quiet' acts of courage - it's late and I need sleep!
ReplyDeleteThis made me cry Martha. I wrote a poem about Lisbeth about 8 years ago when I was thinking about the path I wanted to take in life. I found within myself the strength to work as a helper and a healer because of her, and because of your admirable ability to cope with it all. I took some creative liberty, but I hope you like what I wrote.
ReplyDeleteOrange Juice and Pills
Lisbeth and I would play cards for hours
Go Fish, Crazy Eights,
Egyptian Rat Screw, Blackjack, Poker.
Her trembling hands would
bridge the deck with
practiced ease while she praised her oldest brother.
“Evan’s twenty-two, someday I’ll be that big.
I’ll be the boss of everyone.”
She would always stay six years old,
the year of the fever,
the year when it all started.
Even as a child I knew to have
a watchful eye.
Her lips were always dry.
Piles of flakes ready to drop
from her cupid mouth.
Damn Depakote, Pepto Bismo Valproic Acid.
Morning, noon, and night
her mother brought a spectrum of pills and
orange juice
that Lisbeth couldn’t afford to skip.
The first time it happened I never forgot,
I learned eventually the meaning of care.
Her eyes rolled back,
(the cards scattered like forgotten leaves)
Her tongue lolled,
(my own voice calling for help)
Her body jerked and cracked with spastic ease.
I slowly rolled her over on her side.
(foam leaping from her mouth)
Her mother kneeling seconds after
Orange bottle in hand.