I’m going back in time nearly 2 years today… I realized that I’d never really recorded the day of Danny’s ABR. Fortunately (in a sense), this is one of those memories that seems to have crystallized, so I can still remember much of it – the important parts – as though it were yesterday.

It was a Wednesday, because we visited the hospital every Wednesday for 6 weeks after Danny got out of the NICU to touch base with his infectious disease specialist, where we monitored his blood work, watched for signs of issues with his treatment, and discussed how long to keep him on his oral medication. Rather than have to do multiple trips out, I’d made the appointment for the ABR about 3 hours before his regular appointment, and Dr. C had told me to just call when we were out of the ABR so they could fit us into the schedule if we were early or late.

Much like the perinatalogist visit where we discovered Danny was going to be born that day, in hindsight I’d wished John had joined me, but at the time it made sense for only one of us to go. Probably like most parents, even though Danny had been referred – they wouldn’t call it “failed,” just “referred” – on his second hearing screen in the NICU, we held on to hopes that the test had just been wrong and everything would be fine. After all, I told myself, Eric had failed his newborn hearing screen and he hears just fine. Not only that, but at the same time he’d been retested, we had the NICU’s therapists telling us how well he tracked to voices. I’d slammed a car door the other day and he had startled at the bang. Surely he must hear.

…Right?

In the depths of my mind, I think I already knew how the test was going to turn out, to be honest. But I held on to those hopes and thoughts, not really willing to accept it until I had no choice.

I arrived at the audiology lab not having any idea what to expect inside. I’d been told that Danny would need to be sleeping for the appointment, so I’d tried my best to keep him awake for the whole morning, and hadn’t nursed him much either. She ushered us into a tiny little room and explained that it was soundproof, and we would be doing the testing in here. There were two uncomfortable plastic chairs, and she had me sit in one in the corner right beside the door. I was offered a pillow, which I took and placed under my arms so I could hold Danny more comfortably during the test. She introduced me to the strange machinery in the room, two ear buds that would be in Danny’s ears with spongy ends so they blocked any other sound from getting in or out, some electrodes that would monitor his brain activity during the test. We ended up clipping one of the strings for the ear buds to me to help keep it in place, and I was on monitor duty to make sure they stayed in as well as I could.

She left, the room got dark, and I nursed Danny to sleep so we could begin.

I sat in the dark, in that hot little room, for what seemed like the entire day. I knew the point was for him to be asleep, but I stared at him (since what else was there to do?) hoping he would shift, startle, even wake up. They played clicks through his ear buds so loud that I could hear them, and with each one I thought to myself, this is the one that will surely wake him up. He did shift at times, as babies do, and nurse a little more, but he did not wake.

He always was a heavy sleeper though. He got that from me, surely, and that’s why he’s not waking up.

When the audiologist (not that I knew that’s what she was called at the time – she was just another specialist in a slew of specialists that had overrun our lives) started to come in “just checking the ear molds to make sure they’re set right and haven’t fallen out,” I started to get this pit in my stomach. She tried to be casual, ensuring me that it didn’t mean anything was wrong, she just wasn’t getting readings and they fall out all the time with babies, but I watched her hands closely and the she never really moved the ear buds at all. They were always right where they were supposed to be.

I spent some of that time trying to imagine where she was and what she was viewing, just to keep my mind off of Danny and the test. I envisioned huge panel computers, read outs like the heart monitors they put on pregnant mothers that print out long sheets of paper with scribbles on them. In reality, I’m sure it was just a desk with a computer on it, but I made it larger and grander with every imagining, ever more complex to keep my attention. I spent more time studying the walls and ceiling as best I could in the dark, tracing patterns in the walls and finding shapes in the shadows.

I spent some of the time convincing myself that I was wrong, and the test results were going to be fine. It was taking so long because there was so much to test, right? Maybe he had some hearing, and they needed the extra time to pinpoint just a tiny loss, something that wouldn’t impact his life. I had no idea that it takes less than an hour to pass an ABR (so I’ve been told).

When she came back in, I felt like a deer in the headlights. There were more tests, she told me, and she shifted electrodes and held a tiny little black box to his forehead. She explained that this would test his conductive hearing, vibrating his bones to see what his hearing picks up when it’s not going through his ear canal. That should have been the “a-ha” moment that sound wasn’t going through his ear canal, but I focused instead on it being just another test they have to do.

Finally, we were done. The lights came on, and she left the door open, apologizing for how hot it could get in the booth, especially holding a baby the whole time. I was finally able to shift Danny to the other arm without disturbing wires, and she pulled up the other chair in the booth, sitting across from me and leaning forward. She had a stack of papers in her hands, and she held it out, giving me my first glance at an audiogram and a speech banana.

Then, she told me that they didn’t pick up anything from Danny during the test.

There was so much information that came after that. She explained the difference between conductive hearing loss and sensorineural hearing loss and the difference between unilateral and bilateral; she described an audiogram and the different levels of hearing loss from mild to profound; she explained about hearing aids and cochlear implants and manual options. She gave me a whole bunch of information to read, and told me that we needed to contact an ENT, and that it would be all right. Not a word of it sunk in as I sat there trying desperately not to cry and fall apart in front of her.

And that, as they say, was that. I don’t remember much of that day afterward to be honest. I remember stepping onto an escalator making my way through the hospital to Danny’s next appointment wondering what on earth I was going to do. I know I contacted John somewhere in there, but I don’t remember how or when or any details about how that conversation went. I know I had an appointment with Dr. C that day, and she came in talking and stopped mid-sentence to comment that I didn’t look so great before her face washed with realization and she remembered we’d just come from our ABR. I remember our pediatrician calling me that same day, full of sympathy and understanding and caring. Instead of overwhelming me with ALL the next steps, he just told me to focus on the next one: get him an ENT and make an appointment. He gave me three names, in order of his recommendation, and a phone number for them, then said if and when I had questions and needed anything I could give him a call. (Have I mentioned our pediatrician is awesome?)

As a side note, coming back to the present, it struck me during the parent panel the other night how everyone else spoke of having 2 or 3 ABRs before getting their diagnosis. It never occurred to us to go anywhere else and do the test again. Of course, being a CMV baby, deafness was rather expected (even if I’m still not convinced CMV was actually the cause) and no one questioned the results one bit. I’m glad for that; I can’t imagine having to do that again.

A couple weeks ago, I got a call with an offer I was thrilled to accept: I was going to school!

Well OK, maybe not exactly. I was asked to sit on a parent panel for a class of deaf ed/early interventionists to be. She was looking for parents of hard of hearing/deaf kids to come in, share their experiences, and answer questions on our journeys so far. On one level, I was apprehensive; I’m not much of a public speaker! But it was as part of a panel, so I wouldn’t be alone, and the opportunity to help not only these students but future parents as well was an exciting one.

I was prepared to rehash some of the harder times of our journey, along with the positive ones. I was prepared to be honest and forthcoming. What I wasn’t prepared for was what an amazing experience it was. I think all of the parents there agreed at the end that it was great just to talk about it, and to know there were other adults out there who talked like we did, about the things we did. The experiences among us were varied – some “just” deaf, some with various delays, some with cochlear implants, some with hearing aids – but no matter how different our individual experiences were I found myself nodding so often at the things they were saying.

These other parents, they got it. And because they got it, I felt connected to them, even if I couldn’t tell you their names. When one mother, who had just gotten a CI surgery date, started to tear up, I wanted to pull her into a hug and comfort her even though I’d only met her 15 minutes before. (I resisted, though.)

Time passed so quickly, and the hour turned into an hour and a half almost, but it still seems to be over so soon. I’m so, so glad I did it though, and would do it again in a heartbeat. It reinforced my desire to go to the Moog workshop this summer too, if only to meet other parents and get that feeling of not being so alone again. I have wonderful support and wonderful friends and family, but there’s always that “step apart” feeling at times. It’s amazing what spending time with other D/HOH parents and sharing your story can do. It’s cathartic to go back to those days and emotions again. (It also made me realize that I never recorded our ABR experience…that’s something I plan on doing in the next little bit, just to have it down. Much like a birth story or a story of activation or surgery day, that’s something I’d like in here, and remembered.)

I think that’s part of why I blog, and have reached out to the blog community…for those ties. But it’s not the same as sitting in the same room, no matter how great all the online folks are.

I saw this in the paper a little while ago while it sat on the table in our lunch room at work, and have been meaning to bring it up ever since.

We’ve known for a while – OK, for a good long time now – that we are lucky to be in St. Louis with Danny. Since we’ve chosen an oral route for our family, it really is the place to be. We’ve got 3 solid oral-deaf schools, which do everything from help teach masters students training to work with deaf children to hold workshops in the summer that parents and families travel miles for.

The news story I saw was that one of the schools is reaching out to families outside of St. Louis once again, in a modern way. For years, the schools here offered residence programs that families away from St. Louis could send their children to, but as oral deaf schools start to pop up in other locations and resources become more readily available for parents of deaf children with hearing aids or cochlear implants, those programs have suffered and pretty much been put to an end.

Now, St. Joseph Institute for the Deaf has begun offering online therapy sessions, a first in the country. This opens up the boundaries so much for people with no local oral school to still get the guidance and therapy needed to help their kids succeed, without displacing families. St. Joe’s has put in all sorts of money to ensure they’ve got the technology and the secure connection, so sessions can’t be eavesdropped on, and they’re also reaching out to rural communities in the state to work with their school districts.

I love to see this kind of stuff. This technology is amazing, but I know first hand how much else is needed. It isn’t just a case of getting a child a cochlear implant and then – BAM! – they are talking. It takes a lot of time, work, and therapy. I think this new way of reaching out is awesome, and hope to see programs like this popping up all over!

The news story: New online program connects therapists with the hearing impaired

A familiar thought crossed my mind as I was climbing the stairs at the gym today heading back to my car. They had their posters up for their classes and programs, and one of them featured swim classes with a photo of a baby being held on its back in the water. It got me thinking of swimming, which got me thinking of the boys, which got me thinking of Danny’s being deaf.

And I wondered what it’s like.

As he progresses further and further with his cochlear implants – to think, my little guy is babbling! – I find myself thinking of him as deaf-but-not. Cochlear implants do not “fix” or “heal” deaf, and he will always be deaf, but I treat him as I would a hearing child. I talk plenty, I tell him about the world and how we fit into it, I wait with baited breath for him to finally make some big leaps. (Any time now, OK kid? Our IFSP is like a month away, and I know you can go 4 for 4 on your outcomes.)

I wonder what it’s like to be him, what it’s like to hear and then to not. What does he think when the sound turns off? What is it like going swimming or playing on slides, seeing the world go on around you but not hearing it, when you know there should be sound? When he’s walking and he trips and falls, the fall usually bumps his head pieces off and turns off the sound…what does he think of that?

Basically, what is going through that head of his?

I can’t imagine it. For all I try, for all I wonder, I honestly can’t. Growing up, I remember contemplating it at one point. I don’t know where the question came from, but it’s one of those things that came out of nowhere: if you had to give up one sense, what would it be? I always thought that wasn’t very telling, because really, some are obviously more than others. Smell, taste, and touch…losing them would undoubtedly suck, but it doesn’t happen often, there’s no name or awareness of them. Sight and sound – blind and deaf – if I had to choose one, I wondered, which would I choose? I couldn’t imagine being without either.

I still can’t.

In many ways, I’m in no rush to have my kids grow up, but there are times I look forward to when Danny is grown and we can have these discussions. 20 years from now, sitting down with my son and asking – what’s it really like? Of course, he’ll know nothing different, but it’s got to be an odd thing at times to have a sense turn on and off like that.

I read another blog, a little while ago, of a mother who hopes her child has deaf children. It got me thinking. It got me wondering – about the future, about my hopes and expectations, about my life as it is.

Last night, I realized that I have found peace somewhere in the mash of cochlear implantation, impending occupational therapy, first birthday madness, and the anniversary of loss. I lay down in bed last night and, as I was falling asleep, I thought of the fact that Danny is deaf and delayed. It wasn’t in a “oh my god” sort of way, nor in a “sucks to be us” kind of way. I thought of the fact that Danny was born with CMV, that I caught this crazy virus I’d never heard of. It wasn’t in a “I totally failed him” mindset.

Somewhere, as I accepted the fact that he is one and nowhere near table foods or sippy cups or walking, as I watched in amazement as he began to crawl, I forgave myself and God and everyone else. I’m not even sure when it happened.

I realized this, then I reflected. I have found peace, I have found the elusive “ok with it.” Deaf is part of who Danny is, as it his unknown and yet to be revealed challenges. I feel for the kid, certainly, and will never be 110% okay with it, because it sucks that he has to work so much harder. But – he’ll do it. WE’LL do it. Despite that all, though, would I wish the same for him?

No.

I hope he has children that are whole and healthy. Maybe if his hearing loss had been a genetic quirk and not a remnant of illness and near fatal infections, I could wish for a grandchild like him. I have no issue with his deafness, I crossed that bridge long ago and have no looked back. But I would never wish anyone the journey we went through, the fear and uncertainty. Especially not my own child.

CMV sucks.

Hopefully, money I raise in the March of Dimes walk (more on that later, ha!) can help make it suck less. Maybe even make it go away, at least make it stop disabling babies and ending lives before they begin.

But Danny had it, and that’s OK.

I thought about it all, then rolled over and went to sleep. At least until Eric woke me up at 3am announcing he had thrown up, then took me by the hand, pointed to the mess on the stairs, and told me quite sternly, “you clean it up right there.” Oh, the joys of motherhood.

I found this article particularly intriguing. I think I read elsewhere, in a related article, that they are looking into the feasibility of maternal testing – probably another one of the tests that can be run but often isn’t for pregnant women who have no reason to think themselves at risk. Ironically, sort of like the CMV maternal testing! Boy, have I learned a thing or two about accepting the tests and knowing your risk factors ahead of time…

Anyway, the sum of the article is that they are now studying and seeing a link between a certain type of strong antibiotic and profound hearing loss. The antibiotics are used for patients undergoing treatment for a few serious conditions (chemotherapy, for example), and are also commonly used in NICUs to fight bad infections in premature and sick babies. They’re a sort of “jack of all trades” antibiotic, used for a number of different things, but in people with certain genetics, it can trigger profound and almost immediate deafness.

Sound familiar?

We will probably never know what exactly caused Danny to lose his hearing in the first 2 months of his life. When a child is diagnosed with a profound loss, typically they undergo testing to find the cause, but with a congenital CMV diagnosis everyone assumes it is that. After all, the disease is rather good at causing hearing loss. However, when I first found that antibiotics can sometimes cause hearing loss, it clicked in me. I honestly believe that his bacterial infection and the immediate and severe treatment needed to prevent it from killing him left his hearing as a casualty. CMV typically causes progressive hearing loss, and I know one or two people have commented that it’s odd that he passed his newborn hearing screen with no problems and then came up with such a profound loss in such a short time.

This article just makes me more firm in my belief that it was the antibiotics, and not the CMV, that left him for deaf. Of course, the argument could be made that he only got the infection because he had CMV, which lead to the treatment that bottomed out his white blood cell count.

So what’s the solution? Who knows. Maternal testing could be one part, to see if there is a disposition there to lose hearing with those types of antibiotics. Finding alternate drugs that are just as effective at saving lives without potentially killing cochlear hairs in the process. I’m glad they’re looking into it. Maybe, 10 years from now, a child will be in a similar situation to Danny’s and come out with his or her hearing intact because of the things they’re doing right now.

Ever since the ultrasound that determined my placenta was no longer low-lying, but something wasn’t quite right with the baby, I’ve been playing a game of catch up. Catch up on information about CMV. Catch up to those who know how to handle the NICU. Catch up to those who know about hearing loss, cochlear implants, hearing aids, etc. So often, I have found wonderful people – online and off – who have been there before and taken a moment to give me a hand up. They offer advice, strategies for coping, and most importantly understanding … a feeling like I’m not the first, nor will I be the last, to go through all these things.

Every time I came across one of these people, I marveled at them. I envied their strength as I learned from their knowledge. They seemed to come from a place far away: a place of I’ve Been There, and It Will Be Fine.

A few days ago, I realized…I made it. I’ve crossed to the other side, from needing a hand up to offering one myself. My old boss came in to the office – she still works for the company, but has moved out of town and works from home – and we spent a while catching up. When things came around to Danny, she mentioned that a friend of hers in her new home has a daughter who was just diagnosed with a profound hearing loss. They have no insurance, and are unsure where to go, what to do.

Suddenly, I found myself doling out information. Everything I’ve learned and been through, I wanted to pass on, though I only did a small bit with an emphasis on “please, give her my number, tell her she is more than welcome to call any time.”

It’s a pretty awesome feeling to be able to take what I’ve learned and help someone else with it. 5 months ago (only?), as the audiologist sat down and told me he had failed spectacularly, I never imagined I would one day be helping and consoling someone else, telling them that it would be all right. Sure, I wanted to a while ago, as I passed the audiology lab on the way to Danny’s MRI. But I actually got to do it. I’ve become the woman on the other side of chaos.

I hope I get many more chances in the years coming to offer someone else a hand up the way so many have me.

It’s hard not to get caught up in looking forward to next Halloween. Don’t get me wrong, I am loving this one! Eric and I have had so much fun with window stickers, pumpkins, spiders, you name it. I brought in the pumpkin this morning that we are going to carve tonight and he was so, so excited – he could barely contain himself! I went to put it on the table and he was quite upset; he wanted it on the floor “right there!!!” so that he could check it out and sit by it as I got ready. There is a huge spider on a house on the way to daycare (fake, as big as the house) and every morning as we drive by it he exclaims, “Big Spider!!” He is totally loving it.

I do think forward, though. Next Halloween, Nat and I will be able to compare costumes for our little ones. I do believe it will happen, I’ve gotta believe! Next Halloween, Danny will be able to hear Eric’s excited squeals and give his own. I look at all of the words Eric has learned for Halloween and fall and am so excited to see what Danny picks up next year. Plus, of course, just double the fun with two boys to enjoy the holiday!

We did Fall Festival at daycare yesterday. Neither of the boys minded any of the costumes at all, and Eric had a lot of fun. We saw a lot of his friends dressed up too, they were far too cute. Of course, so were my boys. There was a girl about 12 helping the festival, part of a girl scout group doing community service, who had bilateral cochlear implants. I didn’t want to make her uncomfortable, so I didn’t ask any questions, but she commented on Danny’s hearing aids and I shared that he was in the process of going bilateral himself. It was pretty amazing to watch her hear without any problems even in the crazy bussle of a daycare festival with kids everywhere.

So I’m changing Danny today, and he is right out screaming. (He’s teething and having a miserable go of it, only wants to be held and cries most times you put him down.) I think to myself, By this age, Eric was doing more than just crying to communicate, he would ‘complain’ and babble in an unhappy voice. I wonder if there’s something the matter with Danny.

…

…

Ya think?

It absolutely amazes me, as I sit back after all of the research I’ve done in the past few months, how lucky we are to be here in the St. Louis area with a deaf baby. One of the most recent news pieces to hit the CI community is a study confirming the safety of cochlear implants in children, authored by Anita Jeyakumar and Randall Clary. Yup, as in the guy I met with yesterday morning. The study was conducted at Washington University Med School … the one that works with CID, our oral-deaf school.

Add to that our pediatrician (Randy Agolia, if you’re in St. Charles county, out on Highway K), who has just been fabulous to me and my boys, and called immediately after finding out Danny was deaf to stress that he was there for us and to recommend ENTs – Clary specifically, and a few others if we couldn’t get in with him – to get us on the right track.

We’ve got an awesome team supporting us. I don’t know how those without such a support network in place manage it.