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prayer

I know it’s only the 21st, but I am already eager to put this month behind me. It’s been another month of ear issues (both ears this month) for Josh and we are not sure exactly what’s going on. We haven’t been able to get his ears stable enough/healthy long enough for even an audiology evaluation since October. He just finished up another course of strong, broad spectrum antibiotics. I have an essay coming out soon in The Mighty that will shed some light on how I feel about our latest run in with antibiotics.

In light of all of this, it is time for some mood-boosting gratitude.

  1. There is an owl living in one of the large pine trees behind my house. I hear him hooting each night at about 5:30 pm (dusk here in Minnesota in January) and sometimes just before dawn. I went out into the woods behind my house on Sunday, with my long wool coat over my PJ’s–it was ten below zero at the time, and I listened just below the tree. I cannot tell you what a singular thrill it is to hear an owl up close. But then, he decided to swoop down on some prey and I saw his wings spread over me (I wasn’t the prey). It will likely be one of the most awe-inspiring moments of my life. I feel most protective of this owl and sometimes I fancy the owl is protecting me.
  2. I’ve finally set up my own writing room in the upper level of my house. It is a light, airy space. It is a piece of heaven in my own home.
  3. Trampled by Turtle’s song “Duluth,” which gets me through these cold winters. “Still I like the quiet/Of Duluth in the winter/In the sacred bond/There’s no place like home.”
  4. The rosary. I’m not Catholic, but I’ve had lots of Catholics in my life, including my dad’s whole family. All of my kids have spent time in Catholic schools; now, Josh joins the ranks. He’s learned to pray the rosary. I’m learning too. I’ve thought much about how Mary was acquainted with this experience of watching her child suffer. I feel a kinship with her when I pray the rosary. Although, I’m not sure I’m doing it right, maybe “right” doesn’t matter so much as the act of saying this prayer with a willing heart.
  5. I was given the guidance to get my hands on a copy of Paul Kalanithi’s book When Breath Becomes Air. I elevated this book above the waiting 25 or so books on my “to read” list. I read this book in less than 24 hours; I will read this book again. It is a magnificent, life-changing read. I thank Paul for leaving behind surgery to write before he passed away last March. God be with you, Dr. Kalanithi. You’ve made a huge difference in how I view life, God, vocation, the act of writing, and how I view my son’s doctors and surgeons (I think I wanted them to be small gods–now I realize it can never be so; God can use members of the medical profession, but they will never be perfect, as life will never be perfect).
  6. My thesis project seems to be falling into place, during this second semester of thesis writing; and I have a new blog to support the putting of my thesis out into the world, when it is time. See www.heidifettigparton.com.
  7. I get to see the below view when I leave my local food co-op; even beautiful on cold winter mornings.

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  1. the way you can tell you’ve spent so much of your life smiling and laughing instead of frowning and scowling (because you have lines along the outside of your eyes instead of along the inside, by the bridge of your nose)
  2. the way you and E. discuss comic book-based movies, with such immense and dedicated passion
  3. the way you entered the life of my older two kids when we first started courting–you were so quiet about it; never demanding their loyalties, just slowly, over time, earning their respect and love by simply being the good, loving man you are
  4. the way you patiently wait as I shut down and go inside, all of my wounds that pre-date you making me so completely scared to trust this most wonderful love that has been placed into my hands
  5. that you and I can spend our fifth anniversary walking around Fleet Farms, wanting to buy survivalist gear but laughing together at how we’d both be so very incapable of using the gear if we ever needed to rely on it (not talking guns here folks think life straws and seed packages and turn-handle radios)
  6. the way you just smile (usually) when I drag home another cast off from the Goodwill or consignment store
  7. the way you occasionally raise your one eyebrow at me when I drag home another cast off from the Goodwill or a garage sale, because “they didn’t know what this harvest gold classroom chair from the 70s is really worth and I got it for $13.00!!”
  8. the way we can laugh together about things like you not remembering where we put our wind-up radio and me telling you that I remember telling you where I put it (and so you should know) but I don’t remember the location that I told you
  9. the way you say my birth month, JOO-ly
  10. because you watched me dance to Cortez the Killer and you recognized my soul out there on the dance floor
  11. the way you didn’t end the dialogue that began with my mixed tape (well, okay, a CD–but mixed tape sounds better)–and the dialogue continues to this day
  12. the way you color pictures (or do puzzles, or play Break the Ice) with our son each morning so that I can sit around with my tea and stare at the fire because you know I need a slow, gentle entry into the new day
  13. the love you have for your parents–when I saw how kind and respectful you were to your mother, I knew that I wanted to keep you
  14. the way we give each other permission to be bums on the weekends (I mean, we might have a cleaner house with a more pristine lawn if we weren’t so enabling of each other’s laziness–but I think it works better this way)
  15. how you bought me that plum-colored Carhartt coat on our anniversary date–most people do not realize that the 5th anniversary is the Carhartt anniversary (wood schmould)
  16. the way you can still show interest as you listen to me discuss the latest, greatest dietary means I’ve read about for treating all of my self-diagnosed conditions
  17. the way you pray for my complete recovery from all of my self-diagnosed conditions
  18. the way you defended my coat in that bar so long ago–I knew then that I wanted to keep you
  19. the way you spend so much of your weekends bringing our son to museums, libraries, and parks because you love it, because he loves it, and because you want to give me space to work on my book
  20. when you told me this morning that you were like your dad because his kids were his hobby and now your kids are all the hobby you need
  21. the way you eat/try my braised brussel sprouts, mashed cauliflower, steamed broccoli, and roasted cabbage even though you don’t like vegetables so much
  22. the way you always thank me when I buy you ice tea at the store (and I’m not even making it from scratch!)
  23. the way you gift me vintage station wagons on Pinterest
  24. the way you process hard news about our son’s health issues quickly and thoroughly and then bounce back into optimism the very next day
  25. while I am I am freaking out and running worst case scenarios at lightening speed, you calm, center and ground me
  26. the way you sign even the most mundane, household business text (i.e., new hot water heater on order) with 143, in this way always reminding me that you love me

Happy Birthday My Dearest Rhurac

Love Your Hysedai

143

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It’s been a long while since I’ve written an ear update. At this point, I am sure our ENT would categorize J’s tympanoplasty as a success. Our ENT not only repaired J’s ear drum (well, more accurately, he rebuilt a new one with cartilage taken from behind J’s right ear), but he also discovered the physiological reason for J’s congenital conductive hearing loss. He found that J’s first two middle ear bones were abnormally small and therefore, could not strike his ear drum. And, in any event, the right ear drum had been destroyed by J’s previous ENT who insisted on inserting tubes into his ears even after discovering in surgery how abnormally small J’s ear canals were. I guess fortunately, she never really managed to get the left grommet into his left ear drum.

During the tympanoplasty, J’s ENT emerged from surgery, told us about the deformed ear bones, and asked us if we wanted him to remove the first two ear bones and insert a titanium prosthetic device (TORP) in their place. We went ahead with the procedure and it restored J’s hearing to within normal range. In consequence, J has been unaided in the right ear for the past 19.5 months. Although J’s language development was coming along nicely once fitted with hearing aids that actually worked for his small ear canals at 18 months of age and with the help of a Moog-method based school, J’s language exploded in new and exciting ways post surgery. A few months post-surgery, J no longer qualified for speech services and in our recent check-in with a SLP, J’s expressive language ranked somewhere in the 95 percentile for his age group. For all of this, I am so grateful.

J’s right ear, however, has continued to drain intermittently post surgery. We’ve spent more time at the ENT’s office post-surgery than I care to recount here. Unfortunately, in the past two months, the drainage has kicked up a notch. His ENT thought J had an ear infection a month back, but the culture did not grow anything. When we went in for our follow-up appointment yesterday, J’s ear had begun to drain again. Our ENT suggested it was time for a CT scan to check for a cyst. I said, “Do you mean cholesteatoma?” He answered, “yes.” Well, if you want to strike the fear of God into a mother, just use the word cholesteatoma in the same sentence with her child’s name. Especially if the mother has already been through the horrors of ear surgery once before with her child.

And, sigh, . . . I’ve been working so hard on my fear-o-meter with respect to J’s right ear. In fact, I have a large number of alcoholics in my life–mostly past life but still a pivotal family of origin member who remains actively using. Let’s just say that since childhood, I’ve had a way of collecting alcoholics in my life. Countless times throughout my life, people have recommended Al-anon for me. But I always thought that I could go it on my own. Finally, however, I started attending Al-anon this past fall. Mainly because I realized that my living in constant fear over J’s right ear was impacting my health. I needed to learn how to turn that which I cannot control over to my higher power. I am working the program but I have a feeling I’ll be attending Al-anon for the rest of my life. Alcoholism is the family disease that keeps on giving. Anyway, the word “cholesteatoma” puts my mama fear-o-meter right back into the center stage of my life. Cholesteatoma is a disease that can be dealt with, but there is never a guarantee that it won’t return. I asked our ENT if J’s ear surgery increased his risk for cholesteatoma and he answered, “yes.” And then, of course, I had to ask what percentage increase came from the TORP procedure and he told me, “about ten percent.”

Well, I must admit, I thought I had finally found the serenity to let go of my desperate clinging to J’s ear health. On December 5th, we visited his audiologist for testing of his right ear post-ear infection (that really wasn’t an infection). We learned that his hearing had remained stable (no drainage at time of testing)–of course when he is actively draining, he definitely loses some hearing capacity in the right ear. I talked with our  audiologist (who is outside of our ENT’s office but we keep her because we love her so much) about J’s surgery and about how much hearing J will lose if the ENT has to remove the TORP (I wasn’t thinking about cholesteatoma at all at this point) due to the continued issues with drainage. Of course, it will be total conductive loss, which is about 55-65 dmb. When J still had his ear bones, it was about 35-40 dmb, with a reverse slope loss. His left ear still has all three ear bones, but was never quite as good as his right ear so about 40-45 dmb range of hearing. I talked about how I’d second guess our decision if he loses that much hearing in his right ear because we decided to remove the ear bones. And then, unexpectedly, she gave me a gift. She told me how she used to work as an audiologist in a clinic for kids who had lost hearing due to meningitis and she told me that even if they had had two years of natural hearing before meningitis took their hearing, it made speaking so much easier for them. She told me that this time we had given J of natural hearing (unilaterally) during his language formative years (0-5), was extremely valuable and probably weighed in favor of the surgery we had done. I left her office feeling lighter than I’d felt in 19 months. I left saying, “Okay, God (my name for my higher power). You know J’s every need far better than I ever could and I am going to stop taking this burden of worrying over this ear. I am going to stop second-guessing our decision. I am going to start being absolutely, joyfully, grateful that J is fully lingual at age 4 years, 3 months.

I had about ten days of this blissful state. And then, yesterday, I heard about the “ten percent increase for cholesteatoma.” J’s ENT also conclusively diagnosed J with a perforation in his right ear drum yesterday. And so today, it’s back to working my Al-anon program.

God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.

CT scan scheduled for January 15, 2014. And I am so worried about radiation exposure too.

In the meantime, I am hoping to relish this holiday season. E is already home from his first semester of college and got all A’s. H is coming home in 3 days. I am so excited for us all to be together and to cook for my family and to have us all under one roof. To me, there is no greater joy than having all of my kid’s together. I do not intend to “miss” this time by shouldering the heavy sack of ear worry that I’ve been carrying over the past 19 months.

God, you know J’s every need. You love J more than I ever could. You know far more about his ears and what he needs. I put his hearing, his ears, his health into your hands. I lay my burden down. I trust in you. If this is the proverbial thorn in my side (and I think it is), you’ve told me that the only remedy is grace. ‘Let my grace be sufficient for you; for J.”

Enough. There is always enough grace for ANY situation.

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E and J eating at my favorite restaurant (given I am gluten free–and I suppose I need to begin to tell you all about my health journey this past year) before J’s ENT appointment. E held J on his lap while ENT cleaned out J’s ear under microscope. Such a loving big brother.

Everyone needs places of refuge. Here are some of my places:

  • The rest, the spacious comfort, quieter mind found in meditation
  • Walking outside, particularly on a wooded trail

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  • Just sitting in my pjs in my chair

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  • Being fully captive in a book has been a refuge of mine since the day I first could read
  • The lake cabin my Grandpa Roy built
Photo by Cousin Leif

Photo by Cousin Leif

Photo by Scott (brother)

Photo by Scott (brother)

  • Resting in my Chee-E-O’s loving arms

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  • Listening to my music in the dark or by the light of one candle

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  • Yin Yoga (practicing and guiding others)
  • Green Jasmine tea at 5:30 am, before the rest of the house awakens
  • Ithaca, NY

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  • Just browsing used books stores, antique stores, and thrift stores
  • Finding “the flow” while doing my art
  • Being with my kids

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  • And, of course, that humbling place down on my knees. When life brings me to my knees, it is  exactly where I need to be and there I find the ultimate refuge.

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The above photo is not of our house, but something about this photo both delights and haunts me. When I was younger, there was a tall old tudor situated quite near the river in my home town. It was beige stucco with dark red trim and surrounded by tall trees, always barren in winter of course as I lived in the bleak far north. This generous portion of trees was only to be found along the river. More common were the wide open fields of rich farmland in this river valley-based agricultural community. In December, the beige and red tudor was always laced by Christmas lights. As we’d drive by the house, which was on our way to the other side of the river–a whole different state, where I went most days for gymnastics practice, I’d see this house and I’d be filled with intense longing–especially with the outline of lacy bare trees highlighted only by the hush of sun still left in the sky, just as in this photo. And when strung with Christmas lights, it gave me hope that this Christmas would prove magical; that my mother might be healed from her demons and that peace might be known between my father and mother, at least for a short period of time. Back then, we lived in a 1970’s ranch house. I somehow thought that if I lived in the red and beige stucco house, all would be well. I guess children need coat hooks to hang out garments of hope.

Bad picture, I know. It shows the back of my tudor. Only picture I have. It was the last day in my house before it was sold.

Not a great picture but I didn’t own a digital camera until the very end of my single years. This photo shows the back of my tudor. It was the last day in my house before it was sold.

After my divorce in 2002, I bought my own stucco tudor-ish house. I established a house of peace for my own two children who too had suffered through a few years of marital discord the likes that I certainly regret. I worked to establish our own health inside and out. I banished sugar and embraced whole grains–real whole grains (not General Mills cereals). We ate a very simple and affordable vegetarian diet. I worked for inner peace, taking up yoga and reading endless books on Buddhism and simple living. I listened to Ellen Stanley aka Mother Banjo’s two-hour women folk radio show every Sunday afternoon when my children were at their dad’s house and I drank tea, journaled. At this time, I really felt a deep satisfaction with my life. Sure there were dark hours like the time the boiler went out in the middle of the night in the dead of winter and I sat with a 65-page manual to my boiler trying to figure out how to restart in, finally falling on my hands and knees on the cold cement basement floor tearfully praying. It all worked out in the end and I don’t even quite remember how–I think when I got up off my knees I was able to address the problem. Good times, hard times, but they were my times. I wasn’t looking into the window of another person’s home, wishing it were mine.

OLYMPUS DIGITAL CAMERAI just found a few more pictures in my archives. Above is picture of Hannah from 2007 taken by my dad.  She is seated at the front of my house. She was in a play that day, hence all of the excess makeup. And then I also found a picture from our last Christmas in the house together, four years ago. Chris was in our lives then but still living in his cool Cathedral Hill town home at the time. He was with us for Christmas that year and took the below picture of me, Hannah, and Ethan. I didn’t even know it at the time, but I was about 3 or 4 days pregnant with Josh in this picture. So Josh too was present.

I still miss that tea cup. It broke a few years back. Ellen Stanley and that tea cup were essential parts of my seven single years.

I still miss that tea cup. It broke a few years back. Ellen Stanley and that tea cup served as essential props to my seven years of single life.

We once again live in a lovely stucco house. Not a tudor but a sturdy four square. I too have always loved four square’s, which is what my Aunt Gretchen and Uncle Lee live in, just down the road from my house. I think I’ve previously mentioned in this blog that the week or so I spent with them each summer was the most peaceful, satisfying part of my childhood and young adult years. They grounded me and provided me with a sense of stability in an otherwise chaotic world (my parents finally divorced when I was thirty one and now have, seemingly, become best friends in their aging years although remain separate. So you just never know).

Ethan was recently accepted at the Minneapolis College of Art and Design (MCAD) and also awarded a generous scholarship by MCAD. Today he decided to attend MCAD. He wants to live at home, at least for the first year or so. He loves Josh so much and Josh loves him so dearly. They are really the best of buds and so I am happy they can live in the same house for a few more years. Ethan also told me this morning that, last year at this time, he thought he wanted to go away some place warm for school, in California or in the south. He than said, “but now, I really love it here. I really love being here.” And by “here,” I think he was referring to this house. This glorious house which is a place of peace. Chris and I live together in such amazing peace and harmony. I never knew this was possible. We certainly make a very good team. Even if we are facing some exhausting days parenting these three. It’s mostly the little one that provides the material for our exhaustion, but every now and then, one of the other two comes into the mix–in need of more intensive parenting for a time. But I am grateful for it all. I am grateful to be right here in this moment, in this family. It is all I ever wanted. I feel like I finally found my way home.

I'll see if I have a winter photo.

I’ll see if I have a winter photo.

Umm, well, sort of . . .

Umm, well, sort of . . .

I have a heavy heart tonight. We received some not so great news today about Josh’s right ear (surgery ear). I am waiting to say any more until we see his ENT next week–it was supposed to be our final post-op and assessment of the success of his surgery. But now, I am just hoping that we aren’t facing worst case scenario. Please pray for Josh’s right ear. And for Chris and I, his parents who are stuck in a “why did we do this” hole that we just can’t seem to climb out of. I read a quote yesterday about not looking back, not looking forward, but looking around with awareness. It is just so hard to do in times like this but as I was driving down the highway, 94 West, tonight and trying to look back over my shoulder at a potential accident on 94 east, oncoming traffic. I thought, “Stop it! You are jeopardizing your own driving by looking back over your shoulder.” And then I thought about how we do that in life too. I can’t keep looking back and wishing we’d made a different decision. Because we didn’t and it is depleting my mental energies from being here, in this moment, where I am needed. Likewise, looking ahead on the highway (at least when stuck in traffic and not knowing why), trying to figure out if there is an accident ahead, also only jeapordizes one’s driving, and never ever delivers any information about what’s to come. We are not meant to see what’s ahead. So, the other challenge is to get away from all the fear and “what if’s” about Josh’s hearing future. And surgery future. And pain potential future.

Be here now. Heavy heart and all. I will give myself to this moment. And the heavy heart. We cannot continue to live in this little shell that we’ve existed in over the past 12 weeks. A state of constant regret and fear. No, it will not do for us or for Josh. Josh deserves our fullest hopes our deepest faith our most abiding love. And who can appropriately love when they are busy flogging themselves?

“To love at all is to be vulnerable. Love anything & your heart will be wrung and possibly broken. If you want to make sure of keeping it intact you must give it to no one, not even an animal. Wrap it carefully round with hobbies & little luxuries; avoid all entanglements. Lock it up safe in the casket or coffin of your selfishness. But in that casket, safe, dark, motionless, airless, it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. To love is to be vulnerable.”
C.S. Lewis, from “The Four Loves”

This lesson just keeps coming up on my path–perhaps it circles through on everyone’s path–time and time again. If you want to love deeply, you will, at one time or another, experience a broke-open heart. No other way around it. Maybe just maybe you have an option of whether to be vulnerable in your adult relationships, but the moment you open your heart to a child, there is no option but to be in this place of love and vulnerability. Being a parent is one wild ride but I would choose this ride again and again. It is the place where I have learned to open my heart; where I’ve learned to bleed in the name of something higher than my own selfish needs.

Hannah is in Japan once again. And Josh is not “out of the woods” for another month or so. We are living on the little island of our own home, as if each day were a winter storm, shutting us in the house as we try to spare Josh any unnecessary germs. There have been moments over the past few days where I realize I am holding my breath, no longer breathing freely. Ah, but this does little to protect my own heart or my children. I must learn, once again, to let go. I am vulnerable. My children are vulnerable. It is our human state. The lesson is to make peace with the fragility and vulnerability of life and still breathe deeply, open wide the heart and yell “yes, yes!”

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