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.
As a mother of a special needs child, I understand how you must be feeling. It is not easy. It is scary at times. We started up with early intervention when our son was two, and we were fortunate to have had phenomenal teachers come right to our house. Our son has progressed so much and is now going to BHSC in Williamsville. He does not suffer hearing loss, but has his own set of troubles.
If you are anything like me, you will go through the tough times wondering why you couldn’t just have had a ‘normal’ kid. You want to pull your hair out because you can’t understand what he is trying to tell you. You are afraid to take him out in public because you never know what will spark a huge tantrum. You worry about all the roadblocks he will face. Yeah, it’s tough, but it’s not tough all the time.
In my experience, his special needs are no longer an extra burden on our lives, but an interesting journey. Simple accomplishments become huge tearful celebrations. The “needs” has dropped away, and it is more and more obvious every day how truly special he really is. You may need sign language. You may have to switch to toys with lights. Your whole life plan may need to be re-mapped, but it is totally worth it and will become second nature. Hang in there 🙂
Thanks, Heather. All makes sense. Even since I’ve written that post we already feel quite a bit better, and a lot of that is because our new normal is being established and we’re starting to accept that we have a path in front of us (regardless if we go implant / ASL). But you’re right-on. It’s going to become the norm, and it doesn’t mean that we’re going to be eternally sad or not being able to accept our boy’s difference / disability. We’ll adjust, and we know it.