A Very Busy Week

Well, the title says it all.

Yesterday:

  • I took Alex to his three-month checkup at the pediatrician’s.  We talked for a bit about Alex’s hearing loss, but otherwise Alex was looking good from what the doc could see.  Good measurements, etc.
  • Our ENT called to give us a phone number to call the genetics department at the hospital Alex was born at.  We’re absolutely going to do it, but my heart races a little bit at the prospect of doing it and learning that our poor little guy has more hardship coming at him.  It may also show that Alex’s hearing loss is the only genetic challenge in front of him, though.
  • Buffalo Hearing and Speech confirmed an appointment we had next week for another ABR.  I asked to be transferred to the audiologist’s voicemail to give her an update on the whole auditory neuropathy thing, just to see if she still wanted the appointment for an ABR or if she wanted to do something different with the time.
  • Shannon was called by the hospital to confirm a follow-up appointment that they do with all kids who were born in the NICU.  From the sound of it, it’s going to be another evaluation to see how those NICU kids are developing and to catch anything early.  It seems pretty redundant at this point, but whatever.

Things are definitely picking up, which makes me generally happy.  It feels good to be taking steps forward.  There’s some sadness in all of the appointments because it feels like a sneak preview of what our life is going to be for the next god-knows-how-much-amount-of-time, but I’m taking the optimistic route and looking at all of these appointments as the beginning of us chipping away at the sum total that Alex will have to go to.  Taking yet more comfort from the hearing loss parenting board we’ve joined, it’s also cool to see that a lot of these parents are asking each other what they bought for their child’s therapists and audiologists for Christmas.  It firms up the notion that these folks are really here to go to war with Shannon, myself, and Alex and they’re going to have a huge impact on Alex’s life.

The audiologist from Buffalo Hearing and Speech got back to me today to respond to my voicemail.  This was the same kind soul who had to give us the news about Alex’s profound hearing loss but did so in a very sweet way, so it was nice to speak with her again.  Her general take on the auditory neuropathy confusion was basically this – the treatment is the same whether it’s AN or not, so it’s not worth losing sleep over it.  I asked her how many AN kids they’ve seen and how they’ve done, and it sounded like a dozen or so had come through and that they had done just as well as the other kids.  She also said that the results from Children’s were encouraging if for nothing other than the fact that the AN indicators she might’ve seen could have just been fleeting.  At the end of the day, her stance was that another ABR wouldn’t be necessary because it wouldn’t really change anything and that we could use our meeting time for something much more productive – getting Alex fitted for hearing aids!  That definitely perked me up.  Even though putting those hearing aids on Alex’s head is going to be tough because it’s going to drive home how REAL the idea of him wearing something on his ears / head for the foreseeable future is going to be, the thought that they might help him pick up some environmental sound and get his brain hearing more trumps the aesthetics, which I firmly believe are going to be temporary anyhow.  A few other tidbits of good news coming out of that phone conversation:

  • Bless our audiologist’s heart, she’s going to try to get the head person at the oral school on the phone to speak with us during our meeting so we can ask any questions we have for that track (the other of which is the ASL / total communication route).
  • She hasn’t seen any kids roll through in a long time that weren’t eligible for cochlear implants because of physical limitations.  Though that’s clearly not a guarantee that Alex is going to be the same, it’s good to know that if we choose to go that route, it’s likely the option will be there.
  • My dad as well as a local parent who is on The Board (which is what Shannon and I call it and what I’m going to use from now on to describe the fantastic Facebook board I’ve already gushed over) both recommended a specific audiologist in the area who’s apparently wonderful with kids and gets great results.  Her name was brought up during the conversation because she’s apparently hopeful to work with us, so I immediately said “Yes, we’ve heard great things!”  Great to know that the person we’ll be working with has already come highly recommended and is experienced.

So overall, a good conversation.  It would’ve been ideal if she had flat-out said “Yup, those other ABRs definitely cancel mine out, no AN for you,” but I still consider it all a solid win.  We’ll take what we can get.

The next two days will also be busy.  Tomorrow we meet with Early Intervention for Alex’s evaluation as well as the formation of his plan, which I don’t think should be anything too insane.  We know we want to go with Buffalo Hearing and Speech regardless of track.  Saturday we actually have an interview with a nanny.  We’re hoping to find someone who’s both reliable as well as experienced who can watch the kids for two days a week.  It’s easier on the kids, it gives Alex more one-on-one time, and it’s easier for Shannon and I to get straight to work and drive straight home to maximize the amount of kid time we get.  Shannon and I have already talked about how we want to supplement anything that therapy does with Alex (or ASL lessons) with him as well, so getting those extra 30 minutes for two days a week will be huge in helping Alex out while also not taking away from Taylor time.  The Boards have mentioned a few times that their children actually find the therapy fun, so with a little bit of luck our little sessions can feel more like play sessions.  Who knows.

In the midst of this whirlwind of activity, it’s a depressing thought that we have to take the efforts to integrate all of this into our lives, but I think we’re all about ready to get to work.

Advertisements

Why did I start this blog?

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.

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.