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Special needs child

Here’s a link to my recent essay, published by The Mighty, expressing how a person can be a good friend on Facebook to a person whose child has chronic health issues.

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Josh at 5

Josh at 5

Dear Josh,

Someday, perhaps, you’ll read this blog that I’ve been keeping since just before you were born; you may also one day question why I completed baby books for your older siblings and have not written one word in your baby book. From the blog, you’ll surmise that, during the first five years of your life, I was immersed in worry and fear. From the empty baby book pages, you’ll perhaps ask why I failed to celebrate your milestones.

Just one month ago you turned five. I won’t lie; getting to age five was a bit like pushing a stone up the mountain. When you were born, I had just one night ensconced in the dreamy future before learning of your failed newborn hearing screening. After many bouts of false hope, you were definitively diagnosed with mild to moderate reverse-sloped, bilateral, conductive hearing loss at ten months of age. Back then, I grieved for you and the extra challenges you would face in life. I had no idea whether you’d join us in the world of spoken language. I knew, of course, that if you didn’t ever speak our language, we would learn how to speak yours.

Thanks to early intervention and hearing aid technology, at age five, you are fully lingual: a highly verbal, extraordinarily intelligent little boy. Lately, I’ve been thinking that perhaps you hit the “jackpot” of disabilities. Indeed, it was only because of your hearing loss that you received extensive speech therapy early in life. When your observant speech and language pathologist noticed issues with tongue weakness, she referred you to an occupational therapist. The occupational therapist further recognized and diagnosed Sensory Processing Disorder in you. This diagnosis allowed early and robust therapy with a disability that may have remained “hidden” and hindered you even more than your hearing loss. Because of your hard work with this same occupational therapist, most of your sensory issues have lessoned: some have disappeared.

My joy in you at age five is immense. To see you going down a slide or riding your bike, for me, borders on the miraculous. To hear you say to me yesterday, in your cowboy duds, “Now I’m going to wander the Wild West” makes me smile. I love how your words provide us glimpses into your vibrant “imaginated” (a Joshy word) world. Challenges have abounded in your short life and I know more challenges will come. Still, I am enjoying the view from the top of this particular mountain. And I am experimenting with a softer grip for the journey ahead because you’ve already shown me just how good you are at climbing mountains.

I love you so,

Mom

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Josh with big brother Ethan

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.

 

I am ready to remove all feeding pressure from Josh. We are taking a six month break from OT too. And we’ll just do a check in with our OT in six months (mostly to check to see if small and gross motor skills remain on track); I don’t know that I’ll ever let him have “feeding therapy” again.

So encouraged by this blog post. Four And Not Growing: Follow Up.

I think we can get to the place where all pressure and control mechanisms no longer have a place at our dinner table.

I cannot do it anymore. Really. 4.5 years (5 if you count the sick, tumultuous pregnancy) of worry. Unremitting worry over Josh’s health. I just cannot live this way anymore. And, in any event, this is not really living.

I was listening to an online program today where the speaker talked about his mid-life exhaustion working at a nonprofit. He said, when exhausted, one just starts to work faster and faster, and you become unable to relate to anyone who doesn’t vibrate at your same frenzied pace. He said that the ultimate humiliation was when he walked into a meeting and asked where “Jim” (his own name) was. At that moment, he realized he was completely tapped out; completely exhausted. That night, he got together to read poetry with his friend, a benedictine monk (yes, I know–a quite different level of exhaustion than the one I am encountering) and he asked the monk what he could do about his exhaustion. The monk said to him:

The remedy to exhaustion is not always rest. Often the remedy to exhaustion is wholeheartedness.

And this quote spoke to me so deeply. When I am running around worrying about Josh’s lack of growth, the color of Josh’s feces, the IgA levels in his blood, his ear drainage, the potential of metal toxicity from his sliver crowns and titanium ear rod, I am not living wholeheartedly; as a mother or as a person. It is as if I won’t let myself really enter this life of mine as long as there are outstanding health issues with Josh. But, in 4.5 years, there has never not been any outstanding health issues.

In the end, Josh’s blood tests came back “normal,” however, our OT and pediatrician talked on the phone and I left J’s OT’s office with a whole bunch of literature on the food pyramid and the correct amount of serving sizes for a 4-5 year old. It was really really a slap in the face. I still love our OT, but I have the feeling that she is not right on this one. She knows that I know far more about nutrition than most moms and yet, I left the office with this literature? Was it our pediatrician or our OT or both. It reminds me a bit of the time that our genetic doctor told us to just put “noodles and butter” in front of Josh and he’d eat. Insulting at a time when he’d only eat vanilla yogurt and cheerios. Ironic though now because Josh would exist on macaroni and cheese if I let him. But, he had to come to the discovery of macaroni and cheese in his own time. No amount of prodding would have gotten Josh to accept noodles and butter back at age 16 months, when we got this comment from the genetic doctor. And with this literature, the OT suggested that I show Josh the food pyramid to try to get him to incorporate more foods into his diet. But she is well aware that Josh enjoys human anatomy books and science books. I have to tell him he is only allowed one science book a day because I like to read stories. Anyway, Josh has been looking at the food pyramid since he was 2.5 and it hasn’t done a bit of good. He knows that meat is supposed to be healthy for him but it doesn’t allow him to tolerate it.

But last night, I was feeling the pressure and feeling “judged” as a parent and so Josh and I had a stand-off about the grass-fed bison crumbles on his plate. In the end, Josh left the dinner table without eating any food, even his “go to” food–which, last night, was a cheese tortilla. Then, he couldn’t fall asleep because his anxiety was through the roof (and likely he was hungry). In fact, his baseline anxiety level has been off the charts for the past two or so months and now that I think about it, this uptick coincides with the point at which his OT started pushing him heavily on meats.

Chris and I both awoke this morning with the same thought–that is; this is more of an anxiety issue than a food issue. And even if it isn’t, we are turning it into an anxiety issue. And being all anxious about his health is certainly modeling anxiety for him, even if he was born with some innate baseline anxiety. And whose to say that the congenitally high anxiety is not from the overly anxious pregnancy, with me sick and unable to eat (now I am convinced that was just Josh’s genetic code inside me already expressing it’s extreme food selectivity issues) and numerous bleeding episodes. Whatever it’s from, Josh is using his food preferences to provide something calm and predictable in his world. He likes to have strawberry kefir with a black straw, purple Cliff Z bars in a purple bowl, a pink probiotic pill with 8-9 macadamia nuts in a separate bowl and has now added in cheerios in a third bowl each morning before school. He likes macaroni and cheese at night, every night. And when he doesn’t get his mac and cheese, his world is turned upside down and he has difficulty going to sleep (sometimes a cheese tortilla will suffice).

And you know what? I am not a bad mother for providing these staples. I am a mother doing the best I can (the new tagline on my blog). I am from Minnesota, the state of Garrison Keillor, so maybe I can just say I am a “Pretty Good” mother. And that is going to have to be good enough. Moreover, I am a mother who raised two “normal” eaters, who ate everything without any need for negotiation. Ever. And so I know that Josh’s issues have little or nothing to do with my parenting. At least not until I received the food guidelines from our OT and I became all self-conscious.

I am a firm believer that you find what you need, when you need it. Thank God I found the blog mealtimehostage.wordpress.com this morning. In particular, Chris and I both read this entry about manipulation and about cried. We (really me) were being manipulative with Josh last night. And it felt so wrong.

I am done. At this moment, I do not know all that this entails, but it does mean that, going forward, I am on a mission to be as wholehearted as a parent as possible to Josh.

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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.

Sorry to leave you all hanging with my last blog entry. It’s just that we were going through some serious internal conflict about our decision at that point. Seeing that your son’s ear has been detached and reattached is extremely traumatic. And then watching it turn every shade of dark dark purple. Horrible. So, in all, I’d say this surgery has been way more dramatic, traumatic, and problematic than we’d previously expected. Indeed, I had to pull Josh from school and daycare for the next three weeks because a cold, especially one with a sinus or ear infection, would place the potential success of the tympanoplasty in jeopardy. Moreover, Josh is under lifting, bending, and exercise restrictions. I am not sure how his school or day care would  enforce this especially since the weather is nice and both places take the kids outside to the playground every day (in the case of my Aunt and Uncle’s daycare, their whole yard is like one big glorious play ground). So, I’ve definitely had to make some quick adjustments in my schedule and no subbing yoga for a couple of weeks. I still need to squeeze in the preparation of a yoga workshop, which I am presenting in two weeks, on using yoga to support life transitions. Hmmm. Funny how the subject of this workshop plays directly into my own life right now. Fortunately, Hannah finishes her first year of college in two days and will be home to help. Yay!

All of this ear drama has sure made Josh’s eight crowns and root canal seem like a cake walk. I was brushing Josh’s gums this morning and he started to cry. I was like, “oh yes, he just got eight crowns placed below his gumline three days ago–of course it hurts to have them brushed.” But we still have to do it. Just as we have to place ear drops in Josh’s right ear three times a day even though he cries and says “no, I don’t like that” whenever he sees the toothbrush or bottle of ear drops come out.

As far as the tympanoplasty goes, we did opt for the titanium prosthetics to replace Josh’s incus and malleus. This decision was done without any internet research or careful weighing of the benefits and contradictions. I remarked to Chris yesterday that it is ironic how I spent three weeks diligently researching alternatives to silver crowns for a toddler and yet, I just go ahead and approve a dramatic replacement of middle ear bones on the fly. This decision, my friends, was purely based on a “strong intuition” (and not mine, necessarily but Chris’s–definitely more reliable as Chris has some uncanny sense for finding “true North”). And so rather than running around second-guessing the decision (like I’ve done for the past few days), I am instead going to embrace the decision and stop focusing on what could go wrong and instead switch to focusing on what could go right. Positive thoughts.

Since the procedure, I’ve also spent much time researching the pros and cons of a tympanoplasty itself. Another decision that was only made on the Monday prior to surgery (although hole needed repairing, we maybe could have put it off a few years).  I am realizing that the recovery from a tympanoplasty is rigorous, if not grueling–as well as lengthy . . . up to six months. And just adding in the titanium prosthetics didn’t do much to increase the difficult road to recovery. It seems that one of the critical issues is whether the graft takes and allows a covering to form over the hole in Josh’s tympanic membrane. The cartilage graft came from behind Josh’s ear and I see a dent behind Josh’s ear where this came from. The graft works like a lattice, allowing Josh’s skin to bridge an otherwise unbridgeable gap. It is so fragile over the next few months that a bad sneeze could dislodge it. So please keep the prayers coming for a full recovery.

I am updating this post to include this link to a fantastic site on Typanoplasty recovery.

My other concern in all of this is the flying prohibition. I am not sure yet whether this puts our John Tracey plans at risk. I am waiting to talk to our ENT at our May 24th post-op. Until then, praying for no colds and trying to keep Josh pretty still (which goes against all of our OT work–sigh). Also, while Josh’s right ear is recovering, no hearing aid in right ear and his ear is filled with so much blood and packing material that when his left ear is down in the pillow, he has virtually no hearing right now. So I guess its two steps forward, one step back. But overall moving forward.

The stitches--photo take day before ear turned purple.

thatgirlArlene

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