Month: November 2013

Introduction, Part Two

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I’ve struggled a bit to figure out how to keep this from just becoming a babbling stream of consciousness for the sake of keeping things organized and helpful.  I literally have four other posts that I’ve started and not finished for various reasons; regardless, it’s probably best to keep catching up with Alex’s story.

Where we last left off, Shannon and I had found out that Alex had some degree of hearing loss.  We had no idea what the extent of it was at this point.  When we got home, we immediately took to Google and started investigating hearing aids and feeling awful.  Some hearing loss might not sound bad, but understand – our child would now depend on hearing aids for the rest of his life.  And if you know anything about hearing aids, then you know that they’re far from perfect.  Unfortunately, hearing issues can’t be boiled down to “just amplify it!”  It doesn’t work that way.  They contain speech processors, noise reducers, different programs for different sound environments, etc.  Basically – Alex’s hearing would not be able to fixed or brought back up to 100%, at least using today’s hearing aids.  Everything from here out would be a compromise for our boy.

Then, of course, there’s the visual.  He would always be wearing these.  As a guy, he doesn’t have the same benefit as most ladies do in terms of being able to grow his hair out.  Well, of course he COULD, but let’s be real.  Only a select few guys can do that.  Dark thought – he would never be able to approach a girl at a bar and stand on the same footing as another guy who doesn’t have hearing aids.  There’s nothing cruel about that in itself; we’re biologically wired to look for attractive partners who don’t have any potential issues that could be passed to their children.  But as a parent?  It’s a fucked up thought to have.  And I knew it was a fucked up thought to have, so I felt guilty about it.  The dark thought -> guilt -> depression cycle has been a common theme through much of this.

We felt terrible, had trouble sleeping, felt victimized.  It might have been the day after we took the test that we decided to immediately get moving as quickly as possible and call up an ENT specialist.  I’ve worked in the healthcare system.  I know how inefficient and slow it is.  We also scheduled a follow-up ABR with the hospital to get a better diagnosis of what sort of loss we were actually dealing with.  The closest we could get was something like three weeks away.

And just a quick note on those three weeks.  Three weeks is a very.  Long.  Time.  Especially when you’re talking about something as emotionally charged about this.  It’s three weeks of pure uncertainty.  Gives the mind plenty of time to conjure up stressful visions.

Getting back on track – shortly after the initial news, we hosted Halloween at our house with my parents, some of my friends, and Shannon’s family.  I asked my dad (who wears hearing aids) many questions, to which he had many rationally reassuring things to say.  I qualify that with “rationally” because at this stage of grief, nothing rational really helps.  At the end of the day, it’s still a compromise regarding something you would NEVER, EVER, want to do so on – the welfare of your kids.  Speaking with my dad, though, was very helpful.  He’s someone who’s living in the world of less-than-perfect hearing, so to hear his perspective was real, and hopeful.  Much was said about how far the technology has come along since he started wearing hearing aids.

After many tears and heartaches, Shannon and I came to a base form of acceptance regarding Alex’s hearing loss.  Hearing aids wouldn’t be too bad.  There’s some pretty crazy stuff out there for hearing aids, including aids that fit directly into the ear canal.  No one would have to see them down the road, so Alex wouldn’t have to deal with any sort of obvious social stigma from looking slightly different.

Just as long as it isn’t something like, oh, say, cochlear implants… we’ll be alright.

Shortly after Halloween, we had our appointment with the ENT.  Nice building, but the guy sucked.  He wouldn’t look us in the eye.  He didn’t introduce himself when he walked in.  He talked over my questions (Shannon later told me that she knew that I was getting increasingly angry).  He spent much of our time together talking about late night hearing aid infomercials.  Worst of all, though, is that he thought we had come to him a little bit too early, and that typically they don’t engage until the patient is about six months old.  Nope.  Everything we had read up to this point was that getting your baby as much hearing help as possible, as early as possible, is paramount.  As if that didn’t seal the deal that this was going to be a one-appointment thing, his detached manner really drove it home.  It’s amazing to me that someone can get their doctorate and have such a shitty bedside manner.  I didn’t need the guy to give me some hugely compassionate speech or anything and I get that not all doctors are psychiatrists, but this guy was just completely disinterested.  We weren’t there to talk about subjects that interested his whim, we were there to do the best thing that we could for OUR CHILD, which most parents would probably agree is probably the most important part of their lives.  Before we had left the room I was relatively certain that Shannon and I had already telepathically agreed to never see this guy again.

There were two good things that came out of this appointment, however.  One – he looked at the results of the wonky ABR we had taken and made some mention of how it looked like it was mild-moderate or something to that tune.  For those who haven’t done eighty hours of research on this, mild-moderate is basically “get some hearing aids to help you hear optimally, but you’ll be fine” territory.  That was reassuring.  The other positive was that he recommended that we arrange an appointment with Buffalo Hearing and Speech, who have the best equipment, etc.  On our way out of the office the helpful secretary got us an appointment with them that fell before our follow-up ABR with the hospital, so speeding that along was appreciated.

The time leading up to that next ABR was relatively peaceful.  Shannon and I still discussed Alex’s hearing loss at length, but at this point we had a doctor implying that this didn’t look like any major sort of loss.  A hugely important calming factor that was introduced here was Shannon’s best friend.  She wears hearing aids, but you truly wouldn’t know it.  It hasn’t slowed her down at all in terms of being social, intelligent, or generally awesome.  She’s been instrumental in bringing Shannon and I up from the dregs of depression, and for that I’ll always be very grateful to her.

The morning of the next ABR with Buffalo Hearing and Speech arrived.  I treated it as any other morning, so I got changed into my work clothes so I could head out afterward.  I would say that we were nervous, but shaking in our boots, encouraged by the “mild-moderate” bit from the doctor as well as the fact that we still thought that Alex was reacting to some sounds.  Shannon said that she was hoping for just that mild-moderate loss.  I thought I would be more conservative and go with expecting moderate-severe (which is at the upper end of hearing aids getting the job done well).  Something that sticks out to me now as I write this is that as we pulled up to the building and turned the car off, I had this feeling that the next time I’d walk out of the building in front of me, my life would be completely changed.

We had a wonderful and compassionate audiologist who performed the ABR.  She explained what she was about to test.  Shannon and I explained that we felt that Alex had some hearing loss at this point just so she knew she probably wouldn’t be dropping any bombs on us, we went through the family history question (we have none), and then we got started.  I held Alex this time around to take some of the load off of Shannon.  Alex was VERY sleepy at this point, so we were sure we’d get solid test results back this time.  To setup an ABR, a small tube is inserted into the ear, which is basically the speaker.  It goes into the ear rather deeply.  Electrodes are then placed at various spots of the head to measure brainwave activity.  The idea is that if you can correlate the sound coming out of the speaker to the brainwaves, you know that the person is hearing it.  Again, everything seemed to start off fine, and stayed that way for about twenty minutes.  By “fine,” I mean the audiologist wasn’t really making any notes or saying anything was up.  I couldn’t see the results of her testing from where I was sitting, though.  After those twenty minutes, though, I could hear one of the sounds that was being played into Alex’s ear.  And he didn’t move.  My stomach dropped.  Again, these tubes were placed relatively far in his ear… and I could hear what they were trying to get him to react to.  He slept like it was nothing.  I held on to some hope, though.  Maybe the speaker was firing backward and out of his ear for some strange test.  Maybe it wasn’t abnormal to be able to hear that.  Maybe his brain registered it even though I didn’t feel him move.

At some point Shannon stepped out of the room to call my dad, who was mercifully watching Taylor while we were at the test.  During that window, the audiologist wanted to test the other ear.  I asked her how everything looked.  She very gently, but directly, stated that we were in the profound hearing loss territory.  Or in layman’s terms – he’s straight-up deaf in that ear.  I went back to the feeling of grief when we first learned that Alex had hearing loss.  It wasn’t quite as shocking this time, but that was probably because we had immersed ourselves in the world of hearing loss, so this sort of diagnosis was more like a worst-case scenario vs. what had initially felt like an impossibility.  When Shannon walked back into the room, I told her, because I felt she deserved to know it immediately.  The look on her face made it apparent she was immediately back to grieving as well.

Testing on the other ear was indeterminate because Alex woke up and started wiggling.  At that point, it didn’t seem to matter, though.  We had gone from light hearing loss to DEAF.  We did learn that his hearing loss in the other ear wasn’t quite as awful, but it was still very bad.  No consolation there.  I asked the audiologist “So we’re now in cochlear implant territory, aren’t we?”  She sullenly nodded.  During the next twenty minutes, we were introduced to what was going to be our world.  Early intervention.  Special schooling.  Therapies.  Appointments.  Mercifully, the audiologist who we were dealing with was very sweet.  She told us many encouraging things, including that most of the kids that went through the program were successfully mainstreamed.  That was important, as it helped to frame early intervention as a lot of up-front work to help your child go through life otherwise “normally” afterward.

Of course, none of that helped the complete defeat that we felt again.  I called in sick to work because there was no way I would’ve been able to cope with it at that point.  More tears and mourning.  The most evil part of depression, in my mind, is that when you’re experiencing it, it truly feels like it is never going to end.  Welcome to your new existence.

Still not completely caught up, but it’s a good stopping point…

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Why did I start this blog?

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I’m somewhat of a weird guy.  When I have something that’s weighing extremely heavily on my mind, I’ll actually have verbal conversations by myself.  It’s one of my coping mechanisms. So far…

I’ve had these conversations when I’m watching Alex by myself.  One of the earlier ones involved me apologizing to his tear-blurred image for an hour.

I’ve had these conversations when I’m driving Taylor to daycare (although I’m usually talking TO her, albeit at an adult level).  Usually these are about how lucky he is to have such an awesome big sister and how much she’ll help him, and how much I love her.

I’ve had these conversations when I’m driving by myself, often about the future, really functional kind of stuff that brings me hope as a technologist / futurist.

The self-conversations, while admittedly creepy, have always been at least somewhat helpful to me as a form of bloodletting.  It simply feels more therapeutic than leaving everything inside.

One of my wife Shannon’s many inspirations has been her love for Blogging – she runs a popular site over at sittinginatree-blog.com where she’s posted about everyday things dating back to before we were married.  It’s evolved into a family blog which I love reading.  I check her site multiple times in the day to see if she’s posted anything.  Her writing always makes me smile.

Anyhow, while coping, I considered that I could put all of that internalization to some good use, by creating a blog and posting to it.  The internet, if you’re looking for info on something emotionally charged, tends to be both amazing and cruel – look long enough and you’ll find your worst fears or your most naive hopes.  While scouring the internet for information on Alex’s hearing loss, the most comforting information so far has come from people who actually lived through such an event and whom took the time to write about their experiences.  As Shannon and I have been going through this process of grief and loss, I’ve rationalized to myself that no matter how bad I feel now, I will eventually make peace with what is happening, a new normal will be established, we will laugh again, and most importantly – we will love our son for all that he is AND all that he isn’t.

While I’m actually going through this whole adjustment, I thought it would be therapeutic both for myself to write it and, potentially, for others to read it.  A detailed journey, if I keep up the writing.  My greatest ambition outside of my own selfish reasons for this blog is to potentially be a source of comfort for the parents who are going or will go through the same thing we did.

To that end, I intend on holding little back.  I’ve had some seriously dark thoughts at this point, and I’m only a few weeks into the process at this point.  If this is to be as helpful as possible (including to myself), I think it also needs to be as honest and real as possible.  I realize that members of the Deaf community may read this and be appalled at the emotions and feelings of loss that I’m having right now, but that’s the truth of the thing for me.  Going back to the “Greatest aspiration” bit, I believe if I had access to a detailed blog that went into all of the feelings in detail, good or bad, it would have been uplifting to see what one would hope would be emotional progress toward enjoying life and the blessing we have received in Alex.

I KNOW that my child is going to amaze me already, but I don’t FEEL it yet.  From the real-world stories I’ve read from actual parents, none of these people are living lives as sad as ours feel right now, regardless of their outcomes.  Personally, that’s a source of inspiration and it’s something to hope for, but acknowledging the raw and intense feelings that come with this is keeping it real.

Introduction.

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Well, let’s get started.

My name is Andy.  I’m the father in a beautiful family of four who live in Buffalo, New York.

Here’s the quick history, prior to our newest addition, Alex.

My wife’s name is Shannon.  I have had the privilege to have been married to this strong, funny, and beautiful woman since August of 2010.  Shannon and I basically met through an internet hockey board that we both frequented.  She’s the love of my life, and I’ve told her before that marrying her was the best decision that I’d ever made.  I’m not happy if she’s not happy, we spend as much time together as we can, and we see eye-to-eye on a great many things.  Shannon truly makes me want to be a better person than I am for her.

Our daughter Taylor was born in October of 2011.  I realize at this point that I’m using a great deal of adjectives, but Taylor is an amazing little girl.  She’s very well behaved, always has a twinkle in her eye, and constantly lets you know that she’s a very bright and happy toddler.  Shannon and I count our blessings daily that we have such an amazing child in our life.  Sure, she has the occasional attitude, but she’s… just a great kid.  She’s the light of our lives.  I could go on and on, and I look forward to doing so in the future.

We lead a life that can probably only be called “blessed.”  Shannon and I are both driven, hard workers, and that’s enabled us to lead a comfortable life.  We purchased our “forever home” in 2012 in a great school system in anticipation of our growing family.  We have a wonderful network of family and friends.  Financially, socially, and at a familial level, we’ve wanted for little.

Our son Alex was born in September of 2013.  He gave us a much rougher pregnancy than Taylor did.  Our first scare with him was an echogenic bowel that was detected during the anatomy scan.  An echogenic bowel is a possible indicator of the presence of a genetic disorder such as Down’s Syndrome.  A few terrifying weeks later, a specialist ensured us that we were in the clear.  About a month or two away from Alex’s delivery, Shannon went into the hospital with complaints of what originally sounded like Braxton Hicks contractions, but stronger.  The hospital monitored her for a few hours, found nothing, and Shannon was released. 

Shannon was induced on 9/10 (technically starting on 9/9).  She was moments away from pushing Alex out when our doctor threw out quite the surprise – Alex was breach!  Shannon was rushed to an emergency C-section.  Unlike Taylor’s birth, I was unable to even be in the room.  After pacing in the hospital halls like a madman, a nurse popped out and told me that Alex had been born with good stats.  A wave of relief swept over me.  My little boy was wheeled out, and he was (is!) just absolutely beautiful.  Unsurprisingly, I was immediately in love with this little guy.  My relief and joy would be short-lived, though.

The first night of Alex’s stay at the hospital, he was observed to be coughing up what appeared to be bile (the official term for this is “bilious emesis”).  A concerned nurse wanted him to stay that specific night in the nursery so he could be observed.  At roughly 3am, one of the doctors from the nursery came knocking at our door and informed us that they were concerned that Alex’s bile-puke may be a sign of an intestinal blockage, which is potentially fatal.  They wanted to rush Alex to the local children’s hospital.  We were mortified.  We said goodbye to him as the ambulance crew prepped to haul him out; I cried for the first time that I could recall in years.

Alex went on to spend time in the NICU (Neonatal Intensive Care Unit).  Our hospital was kind enough to transport my wife from the hospital Alex was born in to the one where he was currently residing while she was recovering from her surgery.  During that time, testing was performed which demonstrated that he did NOT have a blockage.  Our spirits rose, and his stay at the NICU became more about making sure everything was OK versus addressing any potentially fatal issues.  Alex the troublemaker had struck again!

Shannon was released a few days prior to Alex, who was still being monitored.  Though we were thrilled that Alex seemed to be alright, our hearts ached to bring him home to his house and somehow more importantly, his big sister.  The house seemed empty even though he’d never been in it yet.

Finally, the day arrived when we were told we could take Alex home.  As one of the tests they perform for outbound-babies in the NICU, a hearing test was performed (Shannon and I had initially thought it was an OAE, but it was really an ABR).  Alex failed the first of many hearing tests he would go on to take in the coming weeks.  Distraught, we asked the nurses what failure of that test actually meant – we were told that we’d have to come back, but 9/10 times it meant nothing.

Shannon and I have always been big researchers.  We’re both very internet-saavy users, so like we had done for the echogenic bowel from months back, we immediately took to Google.  There were a plethora of stories from other concerned parents who also received a negative test, but it turned out to just be fluid in the ears.  Since Shannon and I don’t have a (known) history of hearing loss in our family (with the barely-counts exception of my father who wears hearing aids), we didn’t get incredibly concerned, even though Alex would never startle.  I was able to make Alex squint by banging a spoon against a pot, and we had multiple occasions where we thought that Alex was responding to our voices.  Another tidbit that seemed to be in our favor – NICU babies are often defined as being more laid-back / relaxed because of the amount of noise they get used to while there.  We had about a month’s worth of time between Alex’s release from the hospital and the follow-up ABR test.  By the time we went in for the test, we were relatively certain that Alex could hear without any issue.  I recall ALMOST being annoyed that we had to even bother making the trip out to the hospital.

I don’t think I’ll ever forget the day we were told that Alex had hearing loss.  We went to the hospital and were told that only one parent could go in with Alex.  Shannon volunteered.  For the first fifteen minutes, I was relatively relaxed.  For the following forty-five minutes, I started to get anxious.  After an hour had passed, I was worried, but I tried not to work myself up.  Up to this point, Alex’s existence had basically been a training in GET WORRIED GET WORRIED GET WORRIED and it’s fine.  This felt like the echogenic bowel.  Or the intense Braxton-Hicks.  Or the breach.  Or the bile spit-up.

Thinking back to this moment right now conjures feelings inside of me that I think have to be comparable to that of dealing with a sudden death.  In the flash of a moment, your past life seems gone, a memory.

Shannon walked into the waiting room that I was pacing in with a look on her face that instantly made my heart sink to my feet.  My strong wife looked weak and wobbly, the blood drained from her face.  The poor thing was holding both a carseat with Alex in it as well as the diaper bag.  The image is permanently seered into my memory.

I asked her how the test had gone – and she calmly and evenly stated that Alex had some hearing loss.  It wasn’t known to what extent because Alex was awake and squirming during the testing, which greatly throws off the results of the test, but the audiologist who performed the testing had definitely suspected hearing loss.  Our lives had instantly changed.  Our perfect baby, according to our own perceptions at that point, was no longer perfect.  He now had at least some degree of special needs.  He was probably going to need hearing aids and be reliant on some type of hardware for the rest of his life.

At some point, I’m going to explain my reasoning / objectives for starting this blog, but a quick tidbit: I want to be unabashedly honest and real, and describe all of my thoughts and emotions, regardless of how dark they may seem to be.  So with that being said…

At that moment I felt that my son had died.  The “sinking feeling” idiom is, for lack of a better word, legit.  I instantly felt numb and listless, which I now realize must’ve been some sort of emotional shock.  I joined Shannon in what I can only assume is the same sort of feeling she was drowning in.  My second thought was how cruel the audiologist had been to send Shannon out and deliver the news to me – did she realize the consequences of what she had relayed to my wife?  Did she care about how two fragile parents of an infant might react to that sort of thing, or was whatever paperwork / appointment she took next not worth the two minutes that this time would’ve taken?  I felt doubly injured in the emotional haze.  My son now had an issue that he could be dealing with for the rest of his life, and my wife had been thrown to the wolves.  It was as if my family had been assaulted from out of the blue.

We floated out of the hospital and walked back toward the car.  It seemed particularly cruel that we didn’t even have time to really talk about it, we had to pick up Taylor from her daycare.  Taylor, who has always been such a happy little girl, being brought into the cloud that Shannon and I were in.  It seemed unfair to suck her into it.

And thus began our first real grieving session.  When you go through something like this, everything in life becomes examined through the lens of your grief.  For me, home didn’t really feel “safe” anymore.  Walking in the door and just looking at the placement of random things around the house was a reminder of our previous lives before we knew our son had a disability.  See that spot on the table there?  Remember when that was enough of a concern that you’d do something about it, Andy?  See that white noise machine in Alex’s pack and play?  Remember when you thought he could hear it?  See that pile of toys there?  Remember when those were merely annoying to clean up rather than constant reminders that the sounds that come out of them can’t be heard by your son?  See that picture of Alex’s sonogram?  Remember when you thought he didn’t have a disability?  Thought he was on equal footing with the other “normal kids?”  Thought he wouldn’t have any major obstacles to go through to overcome any sort of issues he was born with?  Thought he would never have special needs?  Thought he would be part of the seemingly 99.99999999% of the population that doesn’t have mountains to climb that weren’t their fault?

Devastation.  Our “perfect” family had seemingly been taken away from us.  Our beautiful boy was now compromised.  Nothing would be the same.

Here marks the beginning of the journey.  I’ll stop here, but we still aren’t caught up quite yet.