...the most poignant of all lyric tensions stems from the awareness that we are living and dying at once. To embrace such knowledge and yet remain compassionate and whole- that is the consummation of the endeavor of art.
-Stanley Kunitz.
The content of this blog including all writing and photography, unless otherwise noted, is my creation and belongs to me. I'm thrilled that you're here, but I'm not so thrilled if you're here to filch. If you must steal, go big, go Nabokov, and leave me and my little blog cabin in the woods alone.
I’m in love with the world through the eyes of a girl…- Elliott Smith
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She asks me: What do these wildlfowers smell like to you? To me they smell like maple cinnamon syrup on mud pies.
She asks me: Are you published yet Mommy?
No, honey. Not yet.
It’s very hard to get published, isn’t it?
It sure is.
(quiet pause)
Well, we’ll just have to keep writing and writing until we get published, Mommy.
She writes. Song lyrics, stories, chapters of books. Lately she has been working on a book about an orphan girl who becomes a pirate: If you traveled into our little town and kept going straight down the dusty dirt road, and found the blacksmith and the grain and feed shop, well right to the side, squished in the corner, you’d find the orphanage I live in.
It’s a grand adventure.
Life with the girl who wrote those lines is a grand adventure.
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This week, she’s having a story-worthy adventure all of her own, without Mommy and Daddy. For the first time ever, one week at sleepaway camp. The camp preparations were lengthy. Hunting, gathering, and labeling everything down to the last sock: sleeping bag, pillow, sheets, water shoes, bathing suits, towels, water bottle, bug spray, sunscreen, toiletries, stacks of socks and underwear, sturdy shoes, hats, and maybe a few little hidden treats. One particularly rebellious stuffed purple poodle sneaked her way into the duffel bag even though the angel insisted that she’s gotten too old for stuffed animals. Crazy poodle.
This is the longest amount of time we’ve been away from each other; even when I’m in the hospital, S or my mother bring her to visit me. Even though I want to keep her close, keep her in my arms, keep her safe and surrounded in love and nutritious food and early bedtimes, I have to let her go. I have to let her choose her own adventures and make her own memories and mistakes. I must allow her to ride the waves; highs and lows, storms and sunshine. I need to let her giggle secrets with her friends and feel what it is to go out there in the world as her own person. I must let her climb the thin wobble of rope up into the crow’s nest so she can look around her at the wide expanse. It’s dangerous, and scary, and so rollercoaster-heart worthwhile.
Before she left, I told her two things (two things besides wear sunscreen! drink water! i love you i love you i love you!).
First. Everything that happens on this new adventure, whether it is good or bad, is something you can use. You can learn from it, you can write about it, you can feed yourself with it if it turns out to be a satisfying experience. If it turns out to be a negative experience, you’ll simply be one step closer to choosing something you love.
Second. Wherever you go and whatever you do, you have our love with you. The next words, though, were left unspoken: Our love is in the boat that carries you through the waters, it’s in the water that holds you if the boat falls apart.
Bibliomancy. Oh, how I love this word. Before last week I didn’t even know it existed. I’ve been doing it for as long as I can remember, but thanks to Noan I now know that what I’ve been doing has a name.
I’ve written about Noan here before. She is my Robin Hood; she regularly leaves treasures for me to find at the entrance of my lonely cottage. In the short time I’ve known her, I’ve already learned so much. Most importantly, I’ve learned that you can feel friendship with someone whose face you’ve never seen and whose voice you’ve never heard. In reply to one of my posts last week, Noan sent me a piece she’d written for a writing class. I loved it and I asked her if she’d be willing to let me share it–share her–with all of you. It’s with great pleasure that I introduce my first official guest post writer: Noan Cleary.
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Bibliomancy: the use of books in divination
It was spring of 1999, and I was on the search for a surgeon. My younger daughter, Elizabeth, was seven years old at the time. Elizabeth has cystic fibrosis and that year she needed sinus surgery, and she needed it as soon as possible. I had an appointment that afternoon with one of the surgeons recommended by Elizabeth’s doctors, but unfortunately the appointment did not go well. This surgeon, I learned, was not the type of doctor that answered questions. When my husband called to see how it went all I could think to say was: What is the difference between God and a surgeon? God doesn’t think he is a surgeon.
I drove home from the appointment feeling rather beaten down and slightly weepy. Fortunately – because this type of physician-induced miasma was becoming familiar to me- I knew just what I needed. I needed a good book. More specifically, I needed that focused relaxation I feel only when my head is buried deep in a book. It came to mind that Anne Lamott had a new book out, and since I pass a bookstore on the way home I decided I would stop and treat myself to the guilty pleasure of a full-price, hardcover, chain-store book purchase. You can imagine my profound disappointment when the bored young clerk at the bookstore informed me, Oh, we don’t have that book in stock. I searched the store for an alternative purchase, but no other book felt right, and I left empty-handed.
Arriving home, I immersed myself in the nightly tasks of dinner preparation and homework tutoring. I was up to my elbows in long division and marinara sauce when I heard a voice say, Anne Lamott, and looked up to find Rosie O’Donnell on our TV screen. Anne Lamott, Rosie announced, is going to be with us tomorrow to talk about her new book, Traveling Mercies: Some Thoughts On Faith. How funny, I thought; I never remember seeing an author on the Rosie O’Donnell show before. I’m going to have to keep looking for that book, I thought to myself.
The following day I succeeded in tracking down a copy of Lamott’s Traveling Mercies, and that evening I settled in bed and began to read. It had been over an hour, and I was just beginning to feel sleepy when I read something that caused me to sit up and take notice:
On an otherwise ordinary night at the end of September, some friends came over to watch the lunar eclipse, friends whose two-year-old daughter Olivia had been diagnosed nine months earlier with cystic fibrosis. I know that sometimes these friends feel that they have been expelled from the ordinary world they lived in before and that they are now citizens of the Land of the Fucked. They must live with the fact that their younger daughter has this disease that fills its victim’s lungs with thick sludge that harbors infections. Two-week hospital stays for nonstop IV antibiotics are common. Adulthood is rare.
What surprised me most about this passage was just seeing the words cystic fibrosis on the page. I had never come across any mention of a child with CF in any book I’d ever read. I thought to myself: pay attention. And I kept reading.
We stood outside for a while longer, talking about this last flare-up, how frightened she’d felt, how tired. And I didn’t know what to say at first, watching Olivia go chasing the big kids, coughing. Except that we, their friends, all know the rains and the wind will come and they will be cold – oh, god, will they be cold. But then we will come too, I said; we will have been building this barn all along, and so there will always be shelter.
I read that ending two or three times, slightly puzzled. I would love to say that I found it illuminating, or at the very least satisfying. But I did not. I did not at the time want to hear about shelter from the damn storm. I just wanted the storm to end. I wanted a sign that better weather was on its way. But I paid attention because in some twinkle-twinkle-ding-dong kind of way I felt like the universe was trying to send me a message. Since that day, I have pulled Traveling Mercies off the shelf numerous times and re-read that ending, and it is only now, twelve years later, that I realize it told me exactly what I needed to hear.
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Thank you, Noan. You have been my source of bibliomancy quite often lately, offering little chunks you’ve gathered from books and life to help me divine my own way and find shelter from the storm.
Noan chose today’s poem: (click link to read entire poem)
Below is a conversation I had with S on Saturday..
S: It’s right turn only here?
L: Make a u-turn. It’s what we always do here. Make a right and make a u-turn!
S: Jeez, alright, why do you get so mad?
L: I’m emphatic, not mad. Just don’t pay attention to me.
S: Okay, fine; I won’t pay attention to you anymore if that’s what you want.
L: There is nothing you can say or do that scares me.
[silence]
L: How’s your latte?
Nothing is ever simple. Black and white is simple; we dwell in gray. Following directions, paying attention, fear, possession, frustration, desire, shared coffee: just a few of the different file folders that fill the cabinet of marriage. There is bliss too. That sun-dazed place you wake up in every so often, surprised at having found the secret island again because you’ve both lost the directions to get there.
You can’t hold love–romantic and otherwise–in a cup without spilling. You can’t hold it in a cup and understand it. It’s messy and it dribbles down your chin.
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Poetry makes us think about things in a way we might never have before. Below you’ll find a poem by a writer who thrills me with her ability to disturb my world and make me think. This isn’t greeting card poetry. If you prefer a blanket-swaddled view of motherhood and womanhood you might want to skip this one. It offers difficult ideas and imagery, and I offer it to you as just one more shade of gray to the complicated tones of motherhood. I offer it to you because nothing is simple.
My mother and I are extremely close. We’re also extremely different. My mom is loud, spicy, Mexican, talkative, overflowing with joy and enthusiasm, and has more energy than the Middle East. She loves to dance, sing and eat chocolate and ice cream. Me? Not so much. None of the above. As a child I’d often ask my mother to turn down the volume of the record player (yes, record player) so that I could concentrate on my book. Despite the differences, it somehow works for us.
This blog has occasionally been difficult for my parents to read. I’ve considered censoring myself but for the sake of getting ever closer to truth (my version of it, at least), I’ve written what I’ve needed to write and forced myself to ignore their potential discomfort. I don’t think either of my parents knew what a sailor mouth their daughter has…
Today I’ve caused my mother even greater discomfort by asking her to answer some of my questions about her experience raising two kids with CF born over 30 years ago. She did it side by side with my father (who I adore and who I am painfully similar to) but because it’s Mother’s Day, I will be focusing on my mom. She is phenomenal. She wrote much of her doctoral dissertation cramped in the tiny bathroom of my brother’s hospital room.
My intention, other than publicly declaring my love and admiration for my mom, is to hopefully provide some insight and support for mothers whose children have recently been diagnosed with CF. At the very least, I want you to feel a little less alone in your aloneness. I want to acknowledge you; mothers struggling to do your best with the challenges that have fallen into your warm, frightened, loving laps. I want to hug all the moms who make this world a better, kinder, softer place.
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How did you feel when you received the diagnosis of CF for your first child?
With the first diagnosis I felt numb. Rationally, I knew it was a sickness, but because I had never even heard the name of the illness, I imagined that my baby would somehow be cured very soon. I couldn’t rush home to google CF. There was very little information and even doctors didn’t know about CF! Your brother’s first pediatrician told us he wouldn’t make it to age 10.
How did you feel when your second child was born and received the same diagnosis?
We had consulted a geneticist before getting pregnant and he (incorrectly) informed us that the chances were slim to none of it happening again. So we decided that with low statistical probability on our side, so much love for the first child and more love to give to a second baby, we’d have another one. When the doctor told us that you had CF, we never looked back. We never regretted having you, CF or not.
Do you feel that a period of “grieving” is a natural and necessary part of the journey with CF?
I would call it grieving if you’re referring to anger together with sadness and limitless fear. If this is your definition of grief, for me it started when your brother got very ill when he was 10 months old and needed to be taken to the hospital where I lost his beloved stuffed animal (Laika) and I lost my belief in the fairness of life. Somehow I could handle the emergency hospitalization but losing that dog broke my heart a million times. It still hurts.
Did CF influence your approach to parenting?
I can’t tell you if I would have been a different type of mom to a child without CF because I never had that opportunity. Looking back, I wish we would have been more open or comfortable with CF so it wouldn’t have been such a heavy burden on all of us, trying always to appear as if everything was ok. Because of the almost secrecy, I allowed CF to take too much energy, prominence and space in our lives. By trying to pretend it wasn’t there, we allowed it to define who we were. I also think I was too lenient.
How did you manage your fears and worries? (You always made me feel that everything would be okay, that everything was okay. Now that I’m a mother, I know what a hard thing this is to do when you’re falling apart inside).
I have never managed my fears completely but I have NEVER lost hope either (except once for a short period, before your brother’s transplant). I’ve done everything to deal with my fears: cried till my eyes hurt, prayed a lot, bargained with God a lot, banged walls and hollered, talked non-end about it, kept silent about it. In order to deal with it I have kept busy with work, dance, art, too much bad food, and I have been helped by a husband that will listen and doesn’t cry when I need to cry, having a mother who shares the tears with me; having one sister and a few friends who try to understand.
What is the worst thing about CF for you?
There is not a single worst thing about CF for a mom. There are various: my guilty feelings because it is a genetic disease, my impotence of not being able to make it “all better”, no matter how much I try; coming to terms with the randomness of life’s “justice”; and of course witnessing how you and your brother suffer when you don’t feel well, when you get bad news, when you’re frightened.
Is there any good that you think has come from us being a family with CF?
Yes, believe it or not, there are good things about being a family with CF. We don’t take time, health, laughter and life for granted. Every day counts, and every good thing that happens is worth celebrating. Not many families live like that. Most people live as if they are owed a good life. We have been VERY lucky to be aware of the miracles that have been given to us, such as the success of your brother’s transplant, you getting pregnant and giving birth to your angel, being witnesses to how courageous a human being can be (as we have watched you and your brother); witnessing the love that S has for you. Lots of sadness, but how many families laugh and love the way we do? Both somehow come from the same place of deep love for each other and for life.
How has CF affected your life personally (not just as a parent)?
For a long time CF defined my life. When I used to wonder “Who am I?” my first definition was always a CF mom. That definition always made me feel different from other moms and I hated every mom that had a healthy child. That has changed with time. Now I am a wife, mom, grandma, daughter, dancer, sculptor, etc. And, oh that’s right, my kids have CF.
If you could, what would you tell mothers and fathers of children who have recently received the diagnosis?
Today’s parents have a lot to look forward to in terms of research and many new treatments in the pipeline. Even though CF is a genetic disease, it’s NOT YOUR FAULT! Nobody chooses to give an illness to a kid. It is simply life happening. So if you need to, get psychological help ASAP and get over the guilt. If your child needs to be hospitalized, do whatever you can to have a family member there 24/7. You can (and we did) prevent errors from happening if you’re there and you’re watchful. A support system is very important. Even though everyone else seems to have healthy kids, don’t lose your friends; you’ll need them. Do not despair, there is ALWAYS hope. Doctors know a lot, but they don’t know everything. Nobody knows what the future holds. Take time to take care of yourselves (mom and dad) and find activities that take your mind, body and spirit away from CF (yes, fundraising and outreach are important but don’t let CF become your entire life). Do not forget that you and your child are alive right now- don’t lose the now because you’re worried about the future.
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Thank you for answering my questions Mom. Thank you for being my Mom. I love you and today’s poem–my little offering– is for you.
Happy Mother’s Day to anyone who is a mother and anyone who has a mother.
*if you’re new here, or have just wandered over, this post will make more sense if you start reading from Timeline Part 1, and work your way back to this most recent post.
17
The first six months of parenthood consist of vacillating between a lack of sleep induced gauziness, and of complete elation. I finally emerge from the foggy first months of parenthood and we begin to establish a routine. I depend on my mother for help almost as much as my baby depends on me- my mother comes over to help with whatever needs doing: groceries, laundry, an extra pair of hands to hold or rock the angel if I’m desperate for a nap. Which I always am. But the days begin to take shape and seem clearer. And the Angel is such an easy, fun, happy baby. Every day is a new world with the Angel in my arms. I never knew I could love someone this much. My heart feels like it will burst.
18 (the present)
There is nothing more important to me than being the Angel’s mother. Is being a mom with CF different than just being a mom? I wouldn’t dare say that because of having CF, I love my child more than another mother loves her own. I will say though, that each day I have with my daughter is a blessing that I am acutely, joyfully, and painfully aware of. Sometimes, when I am feeling overwhelmed by CF and by worry, I try to figure out what age would be okay with her if I died. When she was first born, I asked God to let me live until she was 7 because that way, she’d at least have some memory of me. She is eight now. Would she handle my death better at age 10? 18? I negotiate with God. These days I pray to see her graduate from high school. Maybe I’m getting greedy. No age is the right age.
Part of a mother’s work is to try to give her child the skills to leave home and make their own way. If we do our jobs well, our children are ready to take off into the world, able to live their lives well without us. I think moms are usually only aware of this in a general and eventual way, like something that needs to be in place at some point before the kid goes off to college. But it’s something that moms with CF are constantly aware of on a regular basis. We NEED our children to know that if we are not around one day, they WILL be able to go on and have a damn good life even without us. It’s fucking hard: even for a few days, when I go to the hospital for a tune up and the angel and I have to be separated, I have to force myself not to come undone. It kills me that I’m not there to pack her lunch the way she likes, to do her hair in the morning the way she likes it, to see her face coming out of the schoolyard and know instantly whether she’s had a fabulous day or a miserable one. But I try to use the temporary separation as an opportunity to let her know that even when we are apart, our love remains. Love is eternal- you carry it with you, it becomes a part of you, it becomes who you are. Love does not go away, even if people do. CF is strong, but it is no match against love.
As the years go by, my life is filled with the beauty of watching the angel grow and witnessing her life. But each year gets tougher physically, as more and more is required of me to simply get by. I have an interesting daily To Do list: besides all the typical SAHM stuff–wake the angel/get ready for school/ breakfast/off to school/shower/attempt to do some form of exercise/clean/cook/groceries/errands/ laundry/pickup from school/afterschool snacks/homework (because there must be discipline even if I feel like saying life is short, so don’t worry about homework)/shower/dinner/pack lunch/and do it all over the next day…I also have my daily treatments and medications that take about 3 hours a DAY (when I’m feeling relatively well). I do these treatments and medications so that I can function, breathe more easily, and put off lung transplant for as long as possible. My daily negotiations with the god I’m not even sure exists take up some time also. Oh, and every day, several times a day: telling her how beautiful and kind and smart she is–so many times, enough times to leave a surplus for when I’m no longer around.
Without doubt, CF has impacted my parenting and my marriage. S teaches me what it means to BE a spouse, a life partner, to put words of love and loyalty and devotion into action. And the angel teaches me, every day, how to live contentedly and joyfully. I never planned on being a mom because I didn’t know it was possible for me. That’s the thing with CF: for better or worse, you never know. The doctors said lots of things to my parents, but they really didn’t–and couldn’t– know. I worried in my bedroom as a teen, but I didn’t know either. I never, ever imagined my life would look like this. Some days it is rough and ugly, and I curse and cry and get mad. I’ve had those dark days, and I know there are more in store for me. But then there are the moments of absolute gratitude for the life that has unfolded, and the many moments that brim over with love or beauty or intense satisfaction. The moments are there for the taking, and they make every struggle, every gasp for air, every disappointment, every hurt, worthwhile. Small, soft, quiet moments that add up. More beautiful moments than I ever could have imagined.
