Alex has Hearing Aids

2/18/14, 3:00pm

At some point in the past, I think I wrote about how I felt that getting Alex’s hearing aids would be a double-edged sword. Well, I guessed right.

It’s been an emotional few hours. Alex’s dispensing appointment ended just three hours ago at the time of writing this. The appointment itself was very straightforward. We arrived at the building with a few extra minutes to spare; the roads in Buffalo are somewhat messy today. In the waiting room, I saw my first cochlear implant user in person – he looked to be in his 40s and had one CI. The magnet was underneath his hat, somewhat hidden. I couldn’t stop looking – not because it was weird, but because I’ve done so much research on these and had yet to actually see a person wearing.  He was at the office with his daughter. Our audiologist approached them both in the waiting room with a few CI parts – it was then that I saw that the daughter also had a CI. She had a light speech affect when she spoke, but I later learned that she was implanted after having been in school for a while with hearing aids, so she learned to speak based on them. Regardless, it was amazing to see. Aside from the SLIGHT affect (which I was actively listening for), you would never have known she was a CI user. Of course, it helps that the daughter had long hair, but still. Just very cool to see.

When the audiologist was in the waiting room taking care of the family I mentioned, she spotted a few other patients, gave them hugs, exchanged big smiles, etc. Loved seeing that sort of interaction. I’ve felt that our Early Intervention team is truly going to be a major influence on our lives, and to see her genuine reactions was both touching as well as exciting as a parent who was about to start down the path with her.

We met with our audiologist on time (you really begin to appreciate these things after you go to enough doctors appointments). It was my first time meeting her, but between what I’d seen in the waiting room and all of the recommendations that had pointed us to her, I already had a very positive first impression.

As far as the dispensing process went, it was an understandably clinical affair. The casualness of it was tough to deal with, though. Shannon and I, up to this point, hadn’t had to deal with anything visible on Alex indicating that he was deaf. He’s still so young that his deafness isn’t evident in our everyday interactions with him. So after our audiologist put Alex’s hearing aid into his little baby ear for the first time, it hit hard. I knew it was coming, but that action seemed to bring a close to one phase of his life, where no one would know that he had any issues and where his physical needs were that of any other child, to an end. A wave of sadness passed over me, and I knew it had to Shannon as well, who was brave enough to hold him throughout. This didn’t last for entirely too long for me, though. The rational part of my brain kicked in and I reminded myself that we’re doing all of this so that Alex will be able to experience sound, and that’s the goal. This isn’t going to be easy or handed to us or him, and I think it would’ve been odd if WE were very casual about it. I wonder if parents who have to get their kid glasses go through something similar?

His hearing aids are pretty small, even on his little ears. We chose a silver color because we wanted to give him a spiffy color without it being insanely fluorescent, but also didn’t want to try to completely hide them with a clinical beige. Our audi (let’s go with that to keep things short) explained how to insert them into Alex’s ears, how to change the batteries, how to store them, etc. She told us about next steps, which involve testing Alex with his hearing aids in a sound booth, and tweaking the aids (which basically means turning up the power). After she finished with the boilerplate, we talked about Alex’s upcoming surgery date; she was surprised that we had one that early. She also explained that she’s worked with our doctor quite a bit, and that he does somewhere in the vicinity of 50 surgeries per year. That’s quite a lot if you think about it. She also stated that if she had a child who was going to get a CI, that she’d go through him. That was all great information and very relevant; Shannon and I have talked a lot about how, if we find out that Alex is eligible for implants, that at that point we’ll really research doctors and surgeons across the US to determine who we should go to if our current surgeon didn’t have a lot of experience. It’s good to know that if we’re lucky enough, it’ll be less of a decision to make.

After the mini Q&A, we made two follow-up appointments. One for Alex’s next hearing aid tweak, coming up in a week or two, and one for his activation(!) for the week after the fourth of July. I tried to see if we could get in beforehand so that Alex might be able to hear fireworks, but in reality, there’s no way we’d have the kids up that late at night anyhow. Ha. Our audi gave us a little bit of insight into the activation process – it’s about two hours long, and the idea for the first “stimulation” is to give the child just enough sound that they visibly respond to it. She explained that usually, the reaction is annoyance. Then she takes it back a step. At subsequent appointments, the sound will be brought up and up as the child learns to tolerate their new sense.

By the time we finally left, Alex was clearly tired. His hearing aids were out for the car trip, because they will whistle if they’re close to a surface, like his car seat. We left to pick our daughter up from daycare. I think Shannon and I were both in relatively good spirits afterwards, though we were both on the same page of regarding the moment his hearing aids were first put on as being a really big deal, even if he’ll only be wearing THOSE for a few months.

Things got tough when we got home.

We put Alex’s ears in, and had trouble getting them to stop whistle. Most of you have probably heard what a whistling hearing aid sounds like – it’s a quiet, but annoying screech that has a weird digital quality to it, like a really bad MP3 downloaded from Napster circa 2000. I was having a lot of trouble getting the sound to stop. What made it worse was knowing that that sound was being blasted into his ears. Now, I know that he’s deaf and can probably barely hear that if at all, but that whistle is a very blatant reminder that my son can’t hear. I took a big emotional dip here. As I said before, Alex is at an age where you wouldn’t know that he had any hearing loss or anything else wrong with him unless you were going out of your way to test his hearing. Now, all of a sudden, there are two devices visibly strapped to his ears and this goddamned sound that’s coming out of them every few seconds. It completely broke my heart.

Taylor was in the room while Shannon and I were wrestling with Alex’s hearing aids – she took immediate interest. I know that this probably sounds like it’s a good thing, and Rational Me says you’re right, but I couldn’t help but feel hurt by it. I don’t think Taylor has really “gotten” that Alex can’t hear her, and now she did. I felt sorry for her, as if something was just taken away from her as well. It was a stupid thought, but you can’t trump emotion with rationale, so I welled up a bit.

We placed Alex on his bouncy seat with his hearing aids on. I was somewhat pleasantly surprised that this didn’t make his aids whistle too badly, even though they were clearly going off every time he moved his head too far to one side. Shannon got her camera out and snapped a few shots. Alex was still whistling, so I took him out of his chair and laid him on my lap as I sat down. His ears were still whistling. It was another dagger to the soul – I can’t even hold my own boy now without his disability coming into play. I know that we’ll figure out how to get the whistling down and that we’re going to learn how to deal with it like it’s second nature, but it’s a very visceral punch to the gut.

I put Taylor to bed for her nap and came back downstairs. Shannon flipped her laptop around and showed me one of the beautiful pictures she had taken of Alex, and it immediately brought me to tears. No particular reason, just the straw that broke me down from the whirlwind of the day’s events.

Alex Hearing Aids

2/18/14, 5:00pm

Well, got the above out of my system. As it turns out, the abundant whistling that we were experiencing out of Alex’s hearing aids was just because we didn’t have them in his ears completely, causing them to feed back. We both knew that could happen, but I had thought I had them in good enough. Shannon figured it out like the warrior genius that she is, and the whistling subsided almost completely. I quite love this woman. Anyhow – I was holding him as usual, sans whistling, shortly after. Huge relief. The whistling was just the salt in the open wound, so for it to go away was very good for my psyche despite how silly that might sound.

Afterward, I headed outside to shovel out the driveway, which gave me a little bit of time to think and put things back into perspective. Knock on wood, but right now, he isn’t in a wheelchair / paralyzed. He isn’t dying. He has a very common ailment that’s being aggressively worked on, from multiple angles, to either nullify or flat-out cure. His first assistive devices will be the bulkiest and crudest he’ll ever use. I walked back into the house feeling just a little bit better. It was tough to submit to putting equipment on my son, and it’s going to be tougher to actually put him through a SURGERY… but you know what? We’ll bust our asses for him and persevere. I know our boy is going to amaze us every time I look down at him and he gives me a huge smile back, as if he’s telling me that he already knows that everything’s going to be completely fine.

It was a roller coaster of a day, and as I told Shannon, it won’t be our last.  It’s a tough road, but it’s still one that we’re happy to be on given the circumstances. It’s all worth it to slowly open the world to him. One step at a time.

A Sliver of News on the AN Diagnosis and other Thoughts

For the first time in what seemed like forever, we actually had a pretty nice weekend.  None of our evenings were complete Google-fests that got us worked up, and we were able to really enjoy our kids and the family dynamic in general.  Good for the soul.

On Saturday we went to Shannon’s workplace.  They’re a relatively family-oriented company, so they offer a breakfast where Santa shows up on a firetruck, kids get to ask for presents on his lap, etc.  There are various activities for the kids to participate in as well.  It blew my mind when I thought of the fact that this was actually the third time our daughter had participated in it, even though she’s only two.  Crazy how time flies.

Something I’ve found myself doing A LOT now when I’m in a semi-crowded area is searching for people with hearing aids.  I’m not sure why, exactly.  Maybe it’s to comfort myself that Alex won’t be alone in wearing assistive hearing devices (should he be lucky enough).  Maybe it’s because I’m interested in seeing how those people “do” in louder environments.  Regardless, one thing that particularly caught my attention at the event was the amount of people who were wearing glasses, kids included.  And though this analogy is obviously flawed, it made me think that if Alex is wearing assistive tech, is it really THAT fundamentally different than all of these people with glasses or braces?  Now, of course there ARE real differences.  Glasses are practically a fix.  You put them on and you’re ready to go.  With hearing aids / implants, therapy is basically required to teach children like Alex who weren’t born with hearing to learn how to use their sense and get them “caught up” with the hearing children who did.  Glasses are also very common on little kids, whereas hearing aids (let alone cochlear implants) aren’t.  Still, it lends a lot of credence to a common experience I’ve read from many different parents, and that’s that though their children’s peers are often curious about the implants, a simple “these help me hear” explanation suffices and that’s that.

It’s probably a coping mechanism and reach in general to say that an implant is similar to a pair of glasses, but it still brings me some comfort because there ARE some parallels there, the biggest of which is that a person with glasses who’s practically blind without them isn’t defined by them.

Anyhow, it was a nice little family event.  I was telling Shannon that it’s going to be very interesting to see what’s going on with the family at this point next year.  Maybe Alex will be a few months into his hearing journey by that point?  We’ll see.

Later that day I ran out to grab a pizza (our appetites have officially returned, which feels good) and grabbed our mail on the way out of the driveway.  In it was a letter from the hospital containing the official ABR report from Alex’s last test (this was the test where the audiologist doubted the auditory neuropathy diagnosis from a prior test).  I anxiously opened it to see if there was any new information – she may have collaborated with the other audiologist to compare notes, as I know that what gets sent to doctors / professionals is much more detailed information than the write-up that they send to patients.  But there wasn’t!  The write-up indicated that no signs of auditory neuropathy were observed in EITHER ear.  Again, this isn’t really news, but it was somewhat comforting to see that written out on the official report.  A little bit of hope.

We have another meeting coming up with Buffalo Hearing and Speech which we’re assuming will consist of yet another ABR, so maybe at that appointment it can be hammered out either way. We’re still really hoping it isn’t AN because that would mean that Alex might get some benefit from the hearing aids he should receive within a month and, more importantly, give Alex a better chance of not having any other associated health issues.

Speaking of appointments, Alex has a pediatrician appointment tomorrow.  I’m looking forward to asking a few questions to our awesome doctor and hoping to walk out with a clean bill of health that I can then report to the Early Intervention evaluator that’s coming over on Friday.

Emotionally, it’s still a roller coaster.  It’s easy to get caught up in both the lows as well as the highs (though a “high” is just feeling relatively normal).  The Facebook group I mentioned has been a great source of information, comfort, and realism.  What’s great about it is that there are tons of great uplifting and happy stories, but at the same time there are also real stories about the occasional sadnesses involved.  A great example was a mother asking the board about what they said to their kids when they got to the point where they’d ask why the other kids didn’t have to wear “ears” or when they’d be able to take theirs off.  Leaving my techno-phile hat off and ignoring my belief that that’s all going to go away given time, I appreciate those stories because it gives us a hint as to what we MIGHT be in for and it also makes the happier stories all the more real and graspable.  Needless to say, I’m now a big believer in the power of support groups.

Alex is also helping us to keep our heads up by being a good little guy in general.  We’ve gotten a few laughs out of him and he definitely likes to smile at us, which I like to interpret as his faith that we’re going to do everything we can to help him kick as much ass as possible in this world.  There’s always just a little bit of sadness with each of these moments, though, because you can’t help but wonder WHY any of this is happening to such an innocent and happy little dude.  I often feel bitter that Alex is our last child and we can’t even enjoy him and the completion of our family as much as we would be in the alternate universe where he was completely fine.  That isn’t to say we don’t love him as he is now, obviously, but there are very few moments when we’re not thinking about the whole thing and worrying about what’s coming up and if we’re doing everything that we can for him.  It pisses me off that we can’t enjoy this time to its fullest.

All of that said, we’re definitely doing better.  We’re smiling a little bit more and depressed a bit less, though there’s always that underlying sadness present.  I think we’ve come a long way in a few weeks.  Getting rolling with Early Intervention this Friday could go either way.  I’d like to think it will make us feel better because it’ll feel like now we’re actively doing something for Alex, but it could also be a reminder of the long road ahead of us that we didn’t choose.  We should hopefully get closure on which way Alex is going to go within a few months (hearing and mainstreaming or visual / ASL / deaf school) which should also be a big help in getting us moving down the path of what’s best for Alex.

Just keep swimming.

Introduction, Part Two

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…

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.