Coming out of Poetry to Talk About Cholesteatoma

I’ve noted a definite trend over the past year: my postings on this blog have migrated largely into the realm of poetry. It was not a conscious migration. I think that when I am in the midst of such uncertainty, as we’ve been with Josh’s right ear, I need to use the sort of vision-scope that only comes through the lyrical. I am touching down into tender places; touching lightly so as not to upset any of the delicate balance we might have found on a given day (or week or month).

But this blog has, in the past, gone into great detail about Josh, my third child’s hearing loss journey. If you’re here because of your own (or your child’s) hearing loss, you may want to check out past entries to get all caught up. Still, I haven’t posted in a long time, so I need to update the timeline.

Josh is now six and has started Kindergarten. He still wears a hearing aid in his left ear, which shows moderate conductive loss (so it has slipped through the years from mild-moderate loss–we are not sure why he’s losing ground because conductive loss typically remains stable). This year, Josh is using an FM system at school and loves it–he loves hearing his teacher so clearly in his left ear.

In May, 2012 (at age 2.5), Josh had a tympanoplasty and an ossicular chain reconstruction, with a PORP (titanium rod) replacing his first two middle ear bones. He needed the tympanoplasty to repair his eardrum, although we would have waited until he was older if he hadn’t needed major dental surgery. The decision to replace his first two middle ear bones was made in the middle of his surgery. You can read more about this surgery on this blog if you look under “tympanoplasty.”

The surgery restored Josh’s hearing to (at one point) 10 db across all frequencies. It was pretty miraculous. We’d often forget to use Josh’s left hearing aid because he was hearing so well in his right ear, we wouldn’t even notice when his left ear went unaided. Still, within 5-6 months of the surgery, that ear started to steadily discharge an amber greasy matter. We saw our former ENT many times in the following two years; occasionally the discharge was cultured and never churned up anything. Perhaps his ear just couldn’t rid itself of ear wax, we were told.

In December of 2013, Josh’s hearing in his right ear started to decline–slowly, but steadily. We’d chip away at 5 db every 3-6 months. It was worse, for sure, when he had a cold. His former ENT raised the possibility of cholesteatoma and ordered a CT exam. The CT exam showed excess fluid in the ear and so Josh was put on three-week course of strong oral antibiotics (at age 4, this was Josh’s first time taking antibiotics–now it’s become routine) and it was hoped that all was resolved. It was summer then, so Josh seemed to improve (although his hearing never went back to 10 db–we did get to about 20 db).

During the 2014-2015 school year, Josh had more trouble again with his molars (all molars had been capped in his surgery at 2.5). Two of the roots became infected and he lost 2 molars–with spacers inserted in their place. Are the teeth issues tied to the middle ear issues? No one can tell us. We’ve been told Josh’s issues are syndromic, but after repeated testing, Josh’s genetic doctor has not found an exact cause or a similar case to Josh’s.

In March of 2015, Josh had terrible ear pain in his right ear (9 on a scale of 10–and Josh is pretty experienced with rating pain). On the way to the ER, the eardrum ruptured, relieving his pain–and he was placed on more oral antibiotics, instead of drops (because it was the ER, after all). The next morning, Josh awoke in a panic; he had absolutely no hearing in his right ear. He also ran a fever for about a week, in spite of the antibiotics. His infection eventually healed, but his hearing stayed at about 25-30 db. Three weeks later, the same thing happened; fever and loss of hearing his ear. His ENT refused to engage in a conversation about what was going on and said Josh was unlikely to have cholesteatoma, because the CT scan a year earlier hadn’t shown it.

We went to the Mayo Clinic for a second opinion. Our new ENT suggested sedating Josh to go in and see what was going on. He told us that CT scans and MRI’s don’t always catch cholesteatoma (and it can hide out in the mastoids). On June 19, 2015, Josh was sedated at a hospital in Rochester, MN. The ENT came out from the OR to tell us that he was 1000% sure Josh had cholesteatoma–it was coming out of his ear and had wiped out some of the eardrum. He proceeded that afternoon with a five-hour surgery to remove the cholesteatoma in a wall up procedure (retaining Josh’s ear wall); tympanomastoidectomy.

Our ENT told us that he was confidant he got all of the cholesteatoma (although one can never be 100% sure because if a small speck is left, it comes back). Cholesteatoma is basically extra skin that gets in the ear and grows much like a tumor but is almost always benign. Where cholestetoma can wreak havoc is it can erode the ear bones, the facial nerve, and worst case, can grow near the brain and cause meningitis. Thus, it has to be dealt with if present.

After removal, cholesteatoma returns in 30% of the cases (I’ve seen the odds at 50% for children because they often have eustachian tube disfunction, which can create a pressure that pulls in the eardrum, creating a good environment for cholesteatoma). Our ENT also was able to retain Josh’s previous PORP because it wasn’t in the zone of the cholesteatoma.

By October of 2015, Josh’s hearing on the right had returned to 25 db across the frequencies. We tried a hearing aid, but Josh complained it was “echoey” and that the ear mold rubbed against the still-angry scar where they took cartilage for his new eardrum. So, we gave up on aiding the right side, for now.

Our ENT is monitoring Josh but did not propose a “second look” surgery at the six to eight month point, which is done when an ENT is not sure they got all the cholesteatoma and they want to go back in before any returning cysts get too large. While the cysts are yet small, an ENT has a better chance of eliminating all of the growth.

Our ENT told us if he did have to go back into Josh’s ear a second time, he’d likely do a “wall down” procedure, that would involve removing Josh’s ear wall and basically eliminate the outer ear, creating a large cavity that couldn’t ever get water in it and has to be cleaned out every six months. I’m not sure how Josh could have much hearing left after a “wall down” procedure. It’s so hard to think of Josh never being able to swim or play near water.

Well, Josh was almost at the five month point past surgery and we were feeling pretty good, especially since it seemed this tympanoplasty actually took and Josh’s new eardrum is holding up really well. Josh had a bad cold last week and then awoke on Thursday morning, as my poem references, with a fever and ear pain in his right ear. He was placed on antibiotics over the phone since his ENT at the Mayo Clinic cannot see him until this coming Thursday (the 19th). Josh’s hearing has been knocked out again too. This makes us quite worried about the return of cholesteatoma because colds causing ear infections were rare in Josh before cholesteatoma and they never knocked out his hearing.

We are still out here hoping and praying for the best possible result; and the ENT will unlikely be unable to “see” anything on Thursday, as cholesteatoma exists mostly within the middle ear. I’m sure Josh will be monitored more closely now, however. I’m not sure if this event is enough to have the ENT schedule a “second look” procedure. We aren’t eager for more surgery; we fear Josh having a lifetime of surgeries. We may even seek a third opinion if a wall-down procedure is proposed–because this is, after all, Josh’s entire lifetime ahead that will be impacted.


Wait Five Minutes To Extend Battery Life!

This boy is my hero. Do you know how many batteries Josh has already gone through in his five-year stint with hearing aids? Quite a few. And I had no idea what those little orange stickers were before reading this! Student makes discovery when it comes to extending hearing aid battery life.

Embrace the Maximally Postponed Decision

From Chalk Board in Daughter's Dorm Room
From Chalk Board in Daughter’s Dorm Room

“Embrace the maximally postponed decision” is a philosophy I’ve embraced ever since I read about it in a book about trying to buy/build a 1000 square foot house for under 100,000 dollars. As an aside, since my twenties, I’ve been intrigued by the concept of living in a very small, but well-built house. I still plan on embracing the small-house movement, but it continues to remain not appropriate for the number of people that I have floating in and out of my life. Fortunately, Chris shares my fascination and maybe someday, we’ll live in an airstream.

Anyway, back to the decision. Ever since Josh’s right ear (situs of Tympanoplasty and Ossiculopasty in May, 2012) started to drain late last year, and our ENT told us it was time to either have a CT scan or an MRI, I have engaged in extensive research, as well as entertained an internal dialogue, debating the pros and cons of each. Josh was originally scheduled for a CT scan in January, but I talked to our ENT and asked if we couldn’t  just “watch” for a few months to see what happens. He agreed. We were going to make a decision in March, but our ENT appointment was rescheduled twice and we didn’t end up seeing our ENT again until April 3rd. In the meantime, our ENT seemed to have changed his own view on the matter, now favoring a newer type of MRI to look for cholesteatoma in Josh’s right ear over a CT scan. At the same time, our new pediatrician called the radiology department for me and concluded that a CT scan (it would be Josh’s 2nd CT), even with the high radiation, would be better for Josh than trying an awake (without sedation) MRI for Josh. In all truth, I think I was hoping that somehow neither would be necessary, if we postponed the decision long enough.

To monitor Josh’s ear, we’ve been seeing our audiologist every six weeks throughout this time and, unfortunately, from February 9 to April 17, she’s noted a 15 decibel loss across the frequencies for Josh (so he is now at 30 decibels–but likely still falling) This is a very significant loss and it’s definitely hurt him at school. In particular, he cannot understand the kids on the playground and he always feels left out (his words for this are “no one tells me what they are playing anymore”–very typical situation for Hard of Hearing kiddos). Josh has had more than his fair share of tears over the past month that I believe have their origin in the social isolation he is feeling (also, I think he is grieving this loss, without really understanding what is happening). In the meantime, the hearing loss in Josh’s left ear has been getting progressively worse and we thought it was supposed to remain stable because it is conductive loss. Needless to say, we would be aiding Josh in the right ear again if it were possible but there is too much drainage for an aid right now. On April 3rd, our ENT and I agreed to first try Josh with an awake MRI to see if he could handle it. Most people I’ve talked to since have told me they don’t believe a four year old could handle an awake MRI. The thing with Josh is that he is super amazing about some medical procedures but has a terrible time with others. For instance, he’ll sit perfectly still to get his ears cleaned out under a microscope, even with a vacuum suction, but he freaked out completely when given his sweat test for cystic fibrosis earlier this year (and we were told by the lab tech that it would be painless).

With our MRI scheduled for April 28th, I continued to debate whether I shouldn’t just change over to a CT scan to avoid all of the anxiety the MRI might entail. I’ve been working through Mark Nepo’s The Book of Awakening this year. I happened across a daily entry this past week that had to do with making a major decision. Nepo says that if you are having trouble making a decision, look what is under that decision. Yep. I did this and realized that I am trying to make the perfect decision in this case because I feel like I so failed Josh in a medical decision two years back (see this blog entry for further details). Because of this decision, I think I’ve decided that going forward, I owe Josh the most well-researched, well-reasoned decision. Always.

As the debate waged on in my head, something happened. On Wednesday, Josh told Chris he heard a “whooshing” sound (he described it sort of like a whirring fan or static on a radio) in his right (surgery) ear. It was really bothering him to the point that he was hitting his ear. While the ENT’s office was about to close for the day, I miraculously got a hold of our ENT’s head nurse (I think I’ve learned to work the system a little bit). She told me nothing could be done but to have our audiologist look in the ear the following day (J. had an appointment already scheduled) and call to tell them what our audiologist saw. She also suggested trying to move up the MRI. Thankfully, the whooshing noise stopped before Josh went to bed that night.

The next morning, I got on the phone with radiology and they moved up Josh’s MRI for Monday, April 21st at 8 am. Since time is of the essence here, it was decided to also schedule a CT scan for 9:30 am, in case the MRI without sedation doesn’t work for Josh (it would take a week or two longer to get a sedated MRI scheduled). So, there you have it. Done. The decision will really be made for us by how Josh does on Monday morning.

When our audiologist looked in Josh’s ear with her otoscope she was pretty sure she was seeing his entire middle ear; meaning perhaps a total failure of the tympanoplasty (reconstructed ear drum–where did you go?). She let me have a look and yes, I am seeing a completely different ear than I was a few months back too. I am not sure if the tympanoplasty “blew” last week when Josh heard the whooshing noise. I called our ENT’s office from our audiologist’s office and they put Josh on our ENT’s appointment for Tuesday the 22nd at 9 am. So we should be learning more soon. At this point, I recognize our desperate need for information as to what is going on in Josh’s ear and so I welcome whichever test works for Josh on Monday. It is a bit of a relief to know that one of these tests has to be done and the decision has all but essentially been removed from my plate. And all that wasted time spent worrying . . . although I do not regret the time spent researching this issue. Still, it is good to know that sometimes, the answers just come and no amount of forcing will get us there sooner than we are supposed to arrive.

Sometimes the decision maximally postponed gets made for you. In a way, it is a weight off of my chest. Crazy as that sounds.

Josh at his sweat test in February (after the worst part of it)
Josh at his sweat test in February (after the worst part of it)



Do You Have a Decision You Regret?

I’ve been attending Al-Anon now for nearly six months. Al-Anon is a twelve step program that utilizes the same twelve steps as Alcoholics Anonymous. Al-Anon acknowledges that alcoholism is a family disease. It does not differentiate between the alcoholics and their family members–we are all addicts in one way or another; we are all powerless over alcohol. It has been thirteen years since I’ve lived with an alcoholic and still, I remain powerless. It’s only recently, however, I’ve begun to understand how this disease continues to impact my life. It is ingrained into my every thought pattern; my approach to every problem; it underlies my every action. I, like so many others impacted by alcohol, try desperately to control. The need to control or the notion that we have the power to control is our addiction and slowly, but surely, it erodes not only our own inner selves, but the lives of those around us. And so we attend meetings and “work the steps.” Thus far, I’ve been hanging out on the first three steps, which are as follows:

  1. We admitted we were powerless over alcohol–that our lives had become unmanageable.
  2. Came to believe that a Power greater than ourselves could restore us to sanity.
  3. Made a decision to turn our will and our lives over to the care of God as we understood Him

And, in my true yogi fashion, I am telling myself that it is okay that I am stalled out here on the front steps. It’s exactly where I am supposed to be and when it is time to move along, I’ll know that too.

So what got me through the door of Al-Anon (aside from a good dose of God’s grace and prodding) was the fact that I was living in a state of complete and total lack of forgiveness towards myself for a decision that can be read about elsewhere in this blog. And it became clear to me that this lack of forgiveness; this intense regret, if you will, was causing vast destruction to both myself and those around me. Why not just get a therapist you ask? I’ve had therapists. Sure, therapy feels good, but underneath it all, I am still little old me, with my destructive thought patterns and intense need to control every situation and the debilitating anxiety that comes when you think you probably should be able to control everything. I am the woman walking around trying to hold up the world saying, “Yes, I know–you tell me there is a God out there somewhere who is in control and it’s true, I believe in that God–but still, I can’t let go of this world–everything might fall apart on me and then what?” I am still, underneath all my past therapy, a child of an alcoholic. A small child thinking that she has to hold everything together; that is “her” job and if she doesn’t do it, her family is going to fall apart. I am that middle-aged school child, trying to be super perfect and successful–because then and only then, things might be okay. I am that high school student who will not tolerate a grade below an “A” because somehow, her “A’s” are keeping her family from crumbling under this sad disease that everyone in the family is powerless over.

When that child has a child (at age 22), likely because she thinks that this child might save her first alcoholic and her newly acquired alcoholic, she begins the slow road towards exhaustion, trying to control everything in that child’s world so that this child will never know sickness or pain and sorrow. But in trying to control this child’s (and the two to follow) every move, as well-meaning as she is, she begins to pass down the family disease. Still, she manages to raise the first two kids, at times without the help of the second alcoholic in her life. And then, miraculously, at age 39, she is given another go at it. She has a baby boy and she is certain that she will be a much more laid back parent this time around. But then, the day after that child is born, she learns that he has a disability; hearing loss. Something about this disability–the fact that she has no control, sets her on a path towards trying to control more than she’s ever tried in her life. The world she is trying to hold up becomes heavier and heavier until she begins to sag and sink under its weight. In time, however, she begins to see that things are still “okay.” The sun still rises and falls; her son feels not only sadness but joy. He is just a regular kid, with a disability–but he’s never known it any other way and so he accepts. Because of his acceptance, the woman child too moves to a place of (more or less) acceptance.

By the time the little boy had his hearing aids for a year, he was even making great progress with spoken language and she relaxed her grip a little. Then the little boy’s molars started to crumble and he required dental surgery, placing crowns on all of his molars. The little boy’s ENT suggested repairing her boy’s perforated right ear drum at the same time. She agrees but this is the first decision she now agonizes over. She didn’t know anything about Tympanoplasty at the time and thought it was a fairly simple procedure that you did once and it was fixed for all time. During the Tympanoplasty, the ENT came out and announced that he could see the cause of her boy’s hearing loss. He was born with malformed, small middle ear bones. The ENT said he could likely fix this (80% chance) by removing the first two bones and inserting a prosthetic device, called a PORP. He rattled off some risks but she didn’t really process the risks. She didn’t really know what to do. She hadn’t researched this at all, but it seemed like it was another example of saving her little boy a surgery somewhere down the road. Her little boy had the bones removed and the PORP placed. And it was good, for a while. The little boy regained hearing; the surgery deemed a success. At the same time, the woman learned more about the surgery after the fact, learned how often Tympanoplasty’s fail and PORPs are rejected by the body. She began to hold on tighter than ever–if nothing else, then to this gift she was given, this gift she perhaps improperly took. Was she greedy? This is where her health begins to fail and she wonders what will happen if she is not around to be the “controller” of everything in her small son’s life.

Back to first person point of view. I think I just needed to distance myself from that girl who became a woman, with bigger decisions, entering places where perhaps the illusion of control seemed more real than illusory.

Today, J’s hearing is declining in the surgery ear, which means something is not quite right in there. J’s last two audiological tests have shown notable drops in his hearing levels–enough that we know something is happening. He is now borderline in that ear. We see ENT next week and the dreaded CT scan will likely follow. Maybe another surgery. It is a possibility at this point (and we control freaks like to run through every possible worse case scenario in our heads–so we are prepared? cause we are negative people? because we never learned to trust the people in our life?). So, I have been working once again with regret over this decision. I’ve been waking in the morning with “why did you make that decision?” running through my head. I then get up and read my Courage to Change (Al-anon literature) and read the first three steps. I pray for J’s ear (along with my other prayers) and sometimes, I try to envision some best-case scenarios. I even try to be grateful for the time (almost 2 years) that J has had of hearing normally out of his right ear. In all truth, I’ll never really know the true benefit of those years as compared to a scenario in which we 1) waited until this year for the Tympanoplasty (our previous plan); or 2) Just did the Tympanoplasty without the ossicular replacement.

When I was reading the 12 steps yesterday morning, I stopped on step 3–reading and re-reading it until I cried. Why does it hurt so much to be asked to relinquish control, even to God. When I awoke this morning, I had the same old theme of “Why?” running through my head–the new variation on the theme this morning was to flog myself about the small window I had to research Tympanoplasty and potential surgical interventions in the middle ear after our ENT mentioned the possibility at our appointment less than a week before the surgery. Surely then we would have been set up to make the “right” decision. But then a voice inside my head began to say to me, “Are you God? Are you bigger than God? Do you think that God is smaller than this decision? Do you think he could not have acted or intervened in some way to prevent the Tympanoplasty or Ossicular replacement (PORP insertion)? Was it really all on you? All on your shoulders? Put down this big heavy world you have convinced yourself you are carrying. At long last, put it down now child. I am God. You are not God. I am. I am. I have my hands under this one. Let go. Turn it over to me. My will be done–not yours. You will be able to bear my Will. My will is always bearable. I work in All circumstances. All.”


Photo entitled Morning Light (by Scott Fettig)
Morning Light, (c) Scott Fettig. Please do not use without permission.



Ear Surgery, Courage, and that Ever-Elusive Place Called Serenity

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.


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.


Mother’s Day Postscript

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.

Not Perfect but Functional

There is just something so tidy, so comforting about receiving an “A” grade on a test or report card. Good grades provide a physical confirmation that “yes, I did all that I could–I gave my very best.” So how does a former straight-A student learn to live with the C’s and B’s that life inevitably doles out? Well, this imperfect mother is still learning, at age 42, how to deal with less than perfection in her own life and the lives of those around her. A perfectionist lives from one event to the next; always delaying happiness for that later time when everything will finally be perfect. Good grades feed a perfectionist because they might, for a very short moment, say that all was done as it should have been done. But no sooner received, the perfectionist is already looking ahead to the next challenge on the horizon. Gratification is always delayed; is never realized. True contentment is rarely recognized.

If you haven’t previously read about my son Josh’s recent surgery, here is a recap. On May 3rd, Josh underwent a tympanoplasty to repair his perforated right eardrum. This surgery was elective in so far as it might have been delayed a few years until a point in time when his eustachian tubes were more stable. Still, Josh already was having dental surgery and so, upon the recommendation of his ENT, we decided to go ahead with a tympanoplasty in an attempt to save Josh from a further sedation. While performing the ear drum repair, Josh’s ENT observed that the first two bones of Josh’s middle ear were malformed. More specifically, these two bones were too small to effectively conduct much, if any, sound. Well, we finally knew the SOURCE but not really the CAUSE of Josh’s congenital hearing loss. We were also given the option of proceeding with a potential repair, known as an ossicular chain reconstruction, where Josh’s first two bones would be removed and replaced with a titanium prosthetic device in the hopes that the prosthesis would conduct sound more effectively than the malformed ear bones.

While our son was in surgery, we decided to proceed with the ossicular chain reconstruction. The recovery from the tympanoplasty has been grueling. I would never advise another parent of a child under the age of five to undergo such a surgery unless medically necessary. The literature on tympanoplasty from an ENT office makes it seem like the recovery is a simple matter of a few days on pain meds and a week or so of laying low. The problem is, a cold or ear infection (quite common in this age group) can undo the entire procedure. We didn’t know this before surgery. We pulled Josh out of school, occupational therapy, and kept him mostly away from public places throughout the months of May and June. Remarkably, neither Josh nor the rest of his four family members had even a mention of a cold during these two months. We had a bit of a scare at the end of June and brought Josh into the ENT. He noted that Josh’s ear drum was in tact and healing nicely. We sighed with some relief. We had  made 8 weeks (the first critical landmark) without incidence.

We let Josh go back to open public places, such as parks. About 3 days after the 8-week marker, Josh began to run a 104 temp (of course on the weekend). We brought Josh to the ER. They did not know the source of Josh’s fever but looked at his eardrum and saw that it was still in tact. Another sigh of relief. Throughout the next week, Josh’s temperature occasionally shot up and his ear began to drain. We went to the pediatrician at the 9 week point post surgery. Our pediatrician noted a small perforation in the ear drum repair. Our “A” ear report card had been downgraded to an A- or B+.  The following week, at 9.5 weeks or so, Josh saw his ENT who noted the perforation. He said it was small and located in a “good” place if Josh was going to re-perforate. He actually said to me, “it’s not perfect, but still functional.” Okay, so I guess we were downgraded to a B here and I felt the downgrade in my heart, but tried to practice gratitude even in the face of “less than perfect, but still functional.”

At the same time, Chris and I had been observing a language explosion with Josh since about mid-June. He would hear the ice machine shift in the kitchen when he was around the corner and in the living room. It was the smallest of sounds and Josh would ask “What’s that noise?” He was overhearing conversations and building language from this secondary source, which is something that often escapes kids who are hard of hearing. An example of this incidental language acquisition in action: one week, Hannah and I were discussing the health benefits of quinoa. The next week, Josh brought a bag of quinoa into Hannah and told her “Hey Hannah, quinoa is healthy for you to eat.” We were hearing Josh routinely put together 12-word sentences. A beautiful thing. Most of the time, Josh didn’t even ask for his left hearing aid and because he was doing so well unaided, we left it out. Still, throughout July, Josh’s ear began to drain on and off.

The week that was supposedly “the finish line”–that is, the 12-week post surgery marker–Josh’s right ear began to drain more fervently than before. Because we had our post-op with the ENT, as well as an audiology appointment scheduled for the next week, I decided on Friday afternoon to just run into our pediatrician to make sure the ear wasn’t infected. I wanted to avoid another weekend ER trip. Josh’s pediatrician looked in Josh’s ear with her otoscope for what seemed to be hours. She finally emerged from the ear and told me that the perforation seemed much worse. She also reluctantly told me that she saw whitish matter from the center of the ear and worried that Josh might have cholesteatoma. Cholesteatoma is no small matter and would have surely required more surgery. Chris and I proceeded to spend the most agonizing weekend we’ve ever had together. He developed a low back issue from the stress and I acquired about 20% more white hair (seriously–no exaggeration here). Meanwhile, Josh began saying “what? what?” to everything we said outside and in the car. He also was completely frustrated by this obvious drop in hearing and tantrums escalated. The left hearing aid went back in.

I was able to move Josh’s ENT appointment up to Tuesday first thing in the morning. I still brought Josh to his appointment with his audiologist on Monday. After testing, the audiologist noted no changes in Josh’s left ear (this was the no surgery ear, so “stable” was good) and noted great gains in the lower frequencies on Josh’s right ear. Because Josh was born with a “reverse slope” hearing loss (meaning the high frequencies were heard better than the lower frequencies, which is the exact opposite of most hearing losses–but typical of a pure conductive-type loss) he was almost into the unaided zone across the board–his audiogram, which I’ll try to post soon–was nearly straight across the board just below the 20 decibels. Here is a link to a “speech banana” showing where typical speech sounds are on an audiogram–so you can see that 20 decibels is still giving Josh great access to speech. His audiologist said that the low frequencies are where one hears inflection in the voice. Notably, Josh’s inflection had improved greatly this summer as well. He sounded much less “robotic” which was a noted problem with Josh’s speech earlier this spring. As great as these results were, I felt we had lost some of the gains with the perforation. I really believe that pre-perforation, Josh’s hearing had likely been in the normal (probably 10-15 decibels across the frequencies).

Well, sigh of relief. Huge relief. Vibrant, glorious relief. Our ENT did not see a cholesteatoma, and felt that our pediatrician was seeing the cartilage used to repair the ear drum. He did note the enlarged perforation and expressed concerns over Josh’s continued drainage. He believes that the perforation and draining both are acting to decrease Josh’s access to sound. He wanted us to be sure to get in for an ear culture the next time the draining began (before treating with antibiotic ear drops as we had been doing). And well, that would be today, 14 weeks post-surgery. The drainage has kicked up again and we are going in for a culture this afternoon. The ENT said that, depending on the cause/source/continuation of the drainage, he may have to remove the prosthetic device. And so, here we are–in this gray zone. In this zone of less than perfect. Definitely not “worse case scenario” (which would have been cholesteatoma) but not the perfect result we had hoped for. Indeed, I can’t even see that we opened a door and walked through. Perhaps we just opened a window for Josh for a time to greater access to language. The road ahead is uncertain. But I guess so could be said for any child, any person. I read last week of a child who contracted a deadly brain infection from an amoeba that swam up his nose to his brain after swimming in a Minnesota lake. He was gone within days of contracting the amoeba. Oh, my heart goes out to his parents.

This life is uncertain, fragile. It seems that the effort is to embrace each day, each opportunity fully–regardless of any overhanging gray clouds or imperfections. This imperfect moment may be our last. When Thoreau wrote of sucking the marrow out of life, I doubt he meant that we must wait until all conditions are completely favorable, blue skies ahead–complete assurance of a straight-A kind of day. I think he meant that, to suck out the marrow, you must dive right into the grayness, the muddle of life. In spite of the imperfections, the uncertainties, the vast amount of suffering that befalls each human life, we must endeavor to keep our hearts fully open, breathe in deeply, and walk ahead–palms open to receive it all. Head bowed in thanks for it all.