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“If you can sit quietly after difficult news, if in financial downturns you remain perfectly calm, if you can see your neighbors travel to fantastic places without a twinge of jealousy, if you can happily eat whatever is put on your plate and fall asleep after a day of running around without a drink or a pill, if you can always find contentment just where you are, you are probably a dog.”

Jack Kornfield, from A Lamp in the Darkness

Chloe Coleman: Zen Dog

Chloe Coleman: Zen Dog

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.

I think that I’ve ended this blog twice now and have come back to it. Perhaps next time this happens, I just need to say that I’m taking a break for a while. In any event, I’m not good with endings; with goodbyes; with letting go.

I need this blog right now because, more than any other time, I feel in a unique parenting position (now with two in college and a preschooler at home) and I need to express into words this place where I am. I will try my hardest to not specifically discuss my children in this blog. In particular, child number two–who is the one who complained about me discussing his life on this blog. Instead, I’ll try to keep to the “me” part of parenting.

I left child number two off at college yesterday. I left him to his already-messy dorm room with his three roommates, already worrying they weren’t compatible. I left worrying about how he’d wake up for classes on his own. And worrying about his lack of interest in keeping up on the college web site or even emails–wondering how he’d know what was going on. I was sad leaving child number one at college two years ago, but I knew she’d make it. She’d managed a whole 10 plus months in Japan alone at age 16-17. How could she not manage college, only 5 hours away? Child number two, however, has not had that same type of life experience. So this is the first big separation for him. Yet, he is emotionally more independent than child number one (although she is getting there now). Chris assures me that he will be fine–that he is more than capable. And he is. He is.

When I came home last night, after dropping Two off, I found myself pulling out his birth video–still on VHS. We currently have a DVD/VHS dubbing machine set up (for transferring the VHS home videos to DVD–and when I say “currently,” I meant that it has been 4 years now and no one has completed the project) and so I rewound and rewound the tape, finally reaching the day of number Two’s birth. My ex-husband had started taping just after Two was born and placed on my belly. He was peaceful and calm. Then they took him away from me to weigh and such. Then he howled. I still remember how helpless I felt, over there pushing out the placenta and unable to reach my howling newborn. I felt that same way yesterday, driving away with my son still tired from his lack of sleep the night before (he’d already spent one night in the dorm room and I came back yesterday for orientation) and totally unsure about how he (who has always had his own room) was going to function in a room with three other guys. Number two likes his peace and solitude; needs it. I tried to encourage him to go for a single or a two-person occupancy dorm. He went for the quad, however, because it was cheaper. Two’s always trying to save money.

My pelvic region has been in pain for the past week or so. I am going to get it checked out but I am wondering how much of it was just early contractions. My womb preparing to spit out this child once again–this time to a place far apart from me. He felt it too. Indeed, perhaps he is the child most connected with me at a deep soul level. He is the most like me. And so, in preparation for leaving, he suggested we watch The Lord of the Rings trilogy during the week before he left. We watched The Fellowship of the Rings on the Sunday before he left. The middle one (forget the name–it is my favorite of the books and least favorite of the movies) on Wednesday. I slept through much of this one. On Thursday, the night before he left, we watch The Return of the King (my favorite of the movies). With each moment of the movie, I was aware exactly how many hours and minutes I had with that precious son left in my house. I never wanted a movie to drag on as much as that one. We last watched these movies together when he was 13. It was just after I had finished all three books so that I’d be able to discuss them with him (one of the best moves of my parenting life). It goes so quickly–once they reach 12 or 13 and become like these really cool people who like to do the kind of stuff you like to do. It is like having really fun friends right there with you. It’s not that I don’t enjoy playing dinosaurs on the floor with number Three (okay, well I enjoy that he is enjoying it), but the parenting years really get amazing when your kids are old enough to watch movies you enjoy (in other words, out beyond the Disney years) and can discuss novels with you and visit art museums, while intelligently critiquing the art, or introduce you to Broadway plays you never would have seen without fueling their interest. You only get about 5-6 incredible years like this and then they leave. It’s actually pretty sad.

I am quite aware that, had Chris and then Three not come into my life 5 and then 4 years ago, I would truly have not just an empty nest right now but also an empty home. I paused for a moment yesterday to think about what that would have been like, how I would have coped. I just couldn’t wrap my mind around it though, likely because it is just not my current reality. Instead, after dropping two off, I came home and hugged number Three just a little tighter all evening long. After all, he’s turning four years old soon. I realize quite acutely how these days of playing dinosaurs on the floor will eventually give way to days discussing and reading The Lord of the Rings and then, one day, the day when I too will leave him off at college. For today, however, I commit to really being in every moment down there on the floor with the dinosaurs and the puzzles. I am finally starting to recognize that my role as “mother” is the very best and greatest of my life.

Chris told me that my last entry for this blog was a bit of a downer–too much of a downer for what, he says, has been a fairly uplifting blog. Chris would never tell me such a thing unless he really believed it. Chris, like Ethan, is a bit of my “true north,” helping to point me in the right direction. Both have strong intuitive souls, but Chris has the wisdom of the years added to that intuition and oh how I value his opinion and views.

So on this lovely Mother’s Day, I have decided to write one more ending for this blog about motherhood, with one last gratitude list because I indeed have so very much to be grateful for in this life of mine and as a mother. I am grateful that:

  • Chris insisted on a second opinion for Ethan’s epilepsy diagnosis.
  • Ethan’s stay in the hospital (as difficult as it was) and second opinion, led us to an opinion by an epileptologist that Ethan does not have epilepsy (he does have a condition tied to his heart, blood pressure, circulatory system–but much less devastating than the epilepsy diagnosis).
  • Ethan was able to go off the horrible, brain-altering medications that he had been placed on for 6 weeks this past spring.
  • Josh went nearly a full year without a cold. This is a MAJOR miracle given the amount of sickness he had last year. Thus, he had his first real cold this year just 2 weeks shy of the year anniversary of his ear surgery. We were praying for as much time as possible for the ear to heal before an influx of fluid and pressure hit it. All of you who have had preschoolers will understand just how amazing it is to have such a lengthy cold-free stretch.
  • The ear surgery restored Josh’s hearing in his right ear to a level where he no longer requires a hearing aid in that ear and his language development has just exploded this year.
  • The perforation in his ear drum post surgery appears to have healed itself.
  • Josh is sleeping much better these days and thankfully, so are the rest of us.
  • Just two weeks until Hannah comes home from her study abroad in Japan and it has really gone smoothly.
  • Hannah has seemed very happy and content during her time abroad.
  • My older children both have such kind, interesting, honorable, upright friends in their lives.
  • I get to be married to my best friend.
  • I feel myself moving towards a place of beauty and passion not yet before experienced in my life. The wisdom of age is a blessed thing.
  • Right here, right now, right where I am–I am content. All is well with my soul.

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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For ever so long, going back to law school, perhaps even college, I’ve been known to rise up early as the rest of the house sleeps, and listen to music while drinking a hot beverage. The music has changed through the years, as has the beverage–from coffee to green tea to hot lemon and honey water and back to coffee. For nine years, I had a companion crawl out of bed each morning at exactly 6 am, climb onto my lap (next to my lap as he grew bigger) and join me for about an hour of listening (his grade school didn’t start until 9 am, so there was always time for one more song). That little boy, my companion, is now almost 18 years old, 6 foot 2 and nearly 200 pounds of straight muscle. And it’s almost been another nine years since sleep became more important to him than these listening session with his mom. Ethan and I still share music, as in recommending CDs or new artists to one another, but we rarely listen to music together. I did drag Ethan across the country this past summer to see Dave Matthews with me. He fell asleep during the concert. I guess he’s never really gotten into DMB as I have, but that’s okay. We’d both go without sleep for a few days to see Led Zeppelin back together or to travel back in time to see the Grateful Dead.

Ethan wrote me a poem for Christmas and I am treasuring it in my heart. It perfectly captures those mornings–such happy memories I will carry with me always. Much of the poem might only make sense to the two of us but still, I took a photo of it to post here. The poem reminds me to slow down and find a similar shared time with Josh, whatever it may be. Likely reading book after book in my brown chair, that’s more Josh’s thing than music. The activity is not so important as simply taking the time and creating the ritual because little boys grow to be big boys and they carry these memories forward too.

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