Danny is starting to gain all sorts of awareness of himself and his body. He seems to be spending a lot of time lately discovering what he has, and what he can do with it. His hands are prime examples; there are times he will just stop and watch as he opens and closes his hand, or points and crinks one finger. He also loves to play games and sing songs that have actions!

Of course, I’m pumping up the language to go with all this new discovery! We play lots of song games – he loves to open and his close hands for Twinkle Twinkle Little Star, and to clap and pat his lap for Open Shut Them, and will do both if we just sing the song without any gestures on our part! If I tell him “PEEK-a-boo, Danny!” he will first bring his hands together like a clap, then hesitate and end up covering his ears. He still needs a little help getting them over his eyes the first time.

Songs and games like this are great language learning tools! The inflection teaches babies about different patterns of speech; the repetitiveness and stress on key words helps them learn the words; the actions help them learn to model actions (which, in turn, leads to modeling sounds and words as well). Once they can recognize the song, there is always the opportunity to pause and prompt them to vocalize or sing along. Most importantly, though, they’re fun fun fun, and kids learn what they enjoy!

Cashing in on his interest in all things body, we’re working on identifying body parts too. I talk to him about how he’s clapping his hands, how we take his shoes off his feet, how I’m going to “get” his nose and tickle his tummy. He came up to me the other day and tugged my shirt up to rub my tummy, so I talk to him about Mommy’s tummy and then pull his shirt up and tell him about Danny’s tummy. Down the shirt goes. “Where’s Danny’s tummy?” Up the shirt goes. “There’s Danny’s tummy! Ha ha! Tickle Danny’s tummy!”

Yesterday, I asked at a random moment, “Where’s Danny’s tummy?” His hands moved, he paused thoughtfully, then he tried to pull up the bottom of his shirt. He missed and ended up tugging on the waist band of his CI harness instead, but hey, he was still right!

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.

Every now and then, I get a craving for “oven subs,” something my mom used to make me. They’re beyond simple, but just oh so good, and as a bonus quite flexible as well if you want to change them up. With as much as Eric loves to help me bake, and always wants to help me cook, I’ve been wanting to get him more involved in the kitchen; this was a perfect opportunity! Of course, we had to start by getting Eric’s “cape” on – his apron – because he insists that he MUST have a cape to cook.

All you need is some bologna (2 slices per sandwich), tomato paste, swiss cheese (2 slices per sandwich), and buns. I find Kaiser buns work better than hamburger buns since the bologna and cheese fits better on them!

Eric laid out the buns, open side up, on a foil-lined baking sheet and Mommy had to take a turn, spreading tomato paste on each open face. Go a little heavy, or it will be lost under the flavors of the meat and cheese. I think the tomato paste makes the subs, but John’s had me leave if off before so he can add mayo later instead.

Once that was done, I put Eric to work! First, he set a piece of bologna on each half bun, then topped it with a piece of swiss cheese. He had a great time being the one to build the sandwich, and was disappointed there were only 2 “subby subs” to make.

Voila! Eric pulled his chair away after he found out it was time to “make them hot;” we slid them under the broiler for 3-5 minutes, long enough to get the cheese bubbling and the edges of the buns toasted.

At this point, I like to just put the two sides together and call it a day, but you can add any kind of garnish here – tomatoes, lettuce, whatever floats your boat! Let them cool a couple minutes and DIG IN! These are a total kid favorite, and really a comfort food for me.

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.

Danny’s receptive language seems to come and go in waves, and I’m learning a lot of baby steps away that I never would have realized – never did realize with Eric – were steps in language development. It’s amazing the things you just take for granted until you have a deaf child, truly it is.

Things like telling your child to “sit down” in a restaurant when they’re trying to stand up in their high chair for the fifth time. (Which he listens to, by the way – or at least, he sits down, then pops right back up when he thinks I’m not looking.)

Or like baby patting the picture of himself in a book when Mommy says “there’s Danny!”

A lot lately, Danny has been paying a lot of attention to facial expressions and mouth movements. He’s mimicking a lot of them, and even if sound isn’t coming out, it’s easy to tell that he’s really starting to think about the way speech works. I was hanging out with the boys the other night and yawned, and Danny came up to me – right in my face – and opened his mouth as wide as it would go. Then, he just stared. After a moment of confusion, I opened my mouth like his, and he snapped his shut and giggled at me. It’s become one of our new games, and we’re adding an “ahhhhhh” with it too.

We do a lot of playing on the floor and the futon, and one of the best games, in Danny’s opinion, is “Crash!” When I played this game with Eric, it was basically me grabbing him around the waist and throwing us down into a pillow, yelling, “crash!!!” With Danny, I’ve expanded it a bit: “One…two…three…CRASH!” I pause between each, and really take care to exaggerate each number as I speak it. (Thank you, years in choir, for helping me pay close attention to pronunciation and vowel shaping!) The crash is usually fast and full of laughs, but the counting is full of anticipation as Danny stares at me, a little grin creeping onto his face.

A couple times, he’s popped back up and gotten this look of deep thought on his face. “Ah? Ih? Ee!!” The vowels aren’t exactly right, and the consonants are entirely missing, but you can tell…oh, you can tell exactly what he is trying to do.

The language Danny picks up is never the ones we try to get him to pick up. He’ll be completely mum when we try to prompt him to ask for food or drink or toys a lot of the time, and no matter how many times I tell him it’s a nose and poke it – mine or his – if I ask him where his nose is he just stares. It’s the things in play, the totally unexpected, not thought about, and easily taken for granted moments that stop me in my tracks now.

Danny and his deafness may not be teaching me patience – because I am plenty impatient still! – but he is definitely teaching me to appreciate all the little things.

Being a working mom presents all sorts of challenges, not the least of which is finding time to be mommy with your kids. There are days, if I have to work late, that I feel like I get home, cook supper, eat, and then put Danny to bed. Frankly, it stinks. Eric, by this age, was staying up later, but I know Danny’s putting all the extra effort into listening so it tuckers the poor kid out.

Danny’s latest obsession

When we made the decision for me to continue working once Eric was born, I’d prepared myself for a lot of the challenges. I was ready for the early mornings, the hectic rushes, the captured moments with my kids that would sometimes seem too few and far between. I prepared as best I could for challenges like pumping at work and all the extra time off I’d need to juggle, and spent a lot of time researching and finding the right daycare.

I don’t talk a lot about the fact that I work outside of the home because, honestly, it’s just a segment of who I am and it’s not that fascinating. I get up in the morning, get the kids ready, drop them off, go to the gym (if I’m on top of things that day), and go to the office. Talking about work on the Internet isn’t something I like to do that much; it’s too public, and any wrong word could get back to my coworkers or boss and cause trouble.

“Playing ballet”

I also shy away from talking about it because it always ends up being such a hot topic. The last time it came up in conversation, people started taking offense, and some feelings were hurt because, as stay at home moms and wives, they felt that working women saying they wanted or were “more than just a mom” downplayed and belittled motherhood.

At the end of the day, I am “just” a wife and a mom too. When I’m at work, I’m thinking about my family. I’m planning meals and evenings and weekends, I’m scheduling appointments and therapy sessions – and yes, I’m working too, doing the best I can and producing work I’m proud of. But really, whether we work outside the home or not, we’re all “just” mommies trying to raise our kids the best we know how. Sometimes that means staying at home, and sometimes it means having a career; sometimes it means working part time, and sometimes it means splitting shifts with your husband so you never see him, but you both see your kids.

What it’s all about.

Working makes the time spent with my boys that much more special and cherished. Are there days I’d rather be at home with them? Sure, absolutely. Do I take for granted how special being a mom is because I’m willing to spend time away from my kids? Not at all.

I’m proud to be “just” a mother, raising two fabulous boys. Nothing special or out of the ordinary about me!

I love the Olympics. Scratch that; I love the Winter Olympics. The Summer Olympics are fun and all, but there’s probably only about half of the events that I really care to watch. In the Winter games, it’s more like there’s only one or two that don’t leave me sitting captivated by the TV. I just love it. Add to that the fact that they’re on Canadian soil this year and I am geeking right out.

It doesn’t help that my best friend is actually up in Vancouver right now with pictures, stories, and blow by blows for me to live vicariously with!

So while I’m totally overloading on Winter Olympic action, I find myself being asked over and over again who I’m rooting for. Most everyone who knows me knows I’m Canadian. I have a flag at my desk at work and in my office at home (the one at home decidedly larger than the one at work), and I speak of living up north often. I am, however, a dual citizen, and have chosen to live in the US.

My answer these days comes in pictures, rather than words.

I love this country I live in, but I am still Canadian at the core. The US can take silver and bronze all they want, in my opinion, but save the gold for the host nation and the true north, strong and free!

(Thanks for the jersey, Nat!!! LOVE IT!)

As it happens every so often, Eric was grumpy Thursday morning. “No!” you say, “Not Eric!”

Yes, yes Eric, and he does grumpy with a vengeance.

It took much coercing to even get him to have some cereal, brush his teeth (properly), and get his clothes on. The pants were a particular struggle as I sent him upstairs to fetch them and he came down with Danny’s pants the first time, a pair of too small jammy-pants the second time, and a pillow sack – a pillow sack – the third time. (“This pants is for jumping!”)

Finally dressed, we got upstairs and it was time to put coats on. He rushed to the kitchen and hid in the corner, grunting his disapproval. I told him it was time for his coat, and he gave a long and mumbling, “weeeeeeh!” Not quite a cry, but certainly not words, and completely full of disdain.

Danny wandered over and stared at him for a moment. “Eeeeeeh!” he announced at his brother’s back.

“Mmf! Weh!” Eric grunted into his corner, tucking himself further into it. Danny giggled.

“Eh! Eh!”

They went back and forth like this a couple times, Eric getting more and more frustrated and upset, Danny laughing the whole time. Finally, Eric spun and ran from the room with a final, “Weeeeeeeeeh!!!”

Sure enough, Danny gives a cackling laugh and follows at a wobbling run.

“Eeeeeeeeeeeh!”

I’m sure Danny was just trying to make his brother feel better. Yeah, that’s it…

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

365 days ago, at this moment, I was a bundle of nerves as we got ready to head to the hospital and get our first hands on experience with a cochlear implant. I had no idea what to expect for the day, for the week, or even for the first year. I had high hopes, and I’d be lying if I said all of them have been met in this first year. Like in all things, Danny’s story is not a miraculous change as you see in some others. To be perfectly honest, I’ve had some emotional struggles as this date approached, because of all the other hearing birthdays I’ve heard about and how much further along they are at this point.

But, Danny is Danny, he takes his time and has been focused on other things instead – walking, eating, two handed play, so much in just the past 6 months.

His hearing today is such a miracle.

In this year, my deaf son has rediscovered sound. He’s been reunited with the sound of our voices, mine and dad’s and brother’s. He truly loves to hear, even if sometimes he isn’t all that interested in listening.

He babbles a lot today, m’s and g’s and b’s and y’s and so many different vowel sounds. He’s beginning to experiment with shorter phrases – mama, mama instead of mamamamama. He will occasionally screech or yell just to delight in his own voice, and will whisper “puh puh” at me sometimes if I pop my lips together.

He has no true words yet, but he’s starting to use his voice to request and communicate. He uses “mm mm!” pretty much universally to get what he wants, though has repeated “uh” and “owm” for up and down after prompting. (Well OK – he did “mowm” once and never repeated it, but I’ll count it anyway.) He knows that a monkey goes “ee ee aa aa” and will gladly say it back and forth with you over his monkey whenever you want. As for lings, he’ll repeat four: mm, oo, ee, and ah. Plus silence, of course; he’s great as modeling silence! He also echos “hi” and “uh oh” sometimes, though again, we don’t think with meaning yet.

Receptively, he knows his name, he knows to go to the gate when “it’s time to go” and to go to the garage when we “go to the car.” He understands no, even if he sucks at paying attention to it, and will “come here” or “give it to me” when we ask him to. (Usually. He is a toddler, after all.) He knows what to do for patty cake and peek a boo and waves for “hi” and “bye” without anyone else waving, if he’s in the mood, and will even “clap” for us too.

He loves the sound of his brother’s voice, and if they’re upstairs and I encourage them to “chase” he will take off running the path that they chase each other all the time. If Eric is making noises for toys (moo for cow, rrrrrrr for trucks, roar for dinosaurs), he will mirror it back in play much more reliably than he ever does with me.

If anyone is laughing and he hears it, back turned, around the corner, totally out of sight…he cracks up laughing.

He will look at me if I say his name in the running car with the radio on.

Ours is not a story of speed, but it is very much a story of success. His hearing is one year old. According to most resources, at 12 months on average, children:

-Use one or more words or fragments with meaning (fragments, yes)
-Practice inflection (yup)
-Try to copy new sounds (yup)
-Makes sounds to get attention, make needs known, and protest (yup)
-Follow simple one step directions, eg “sit down” (yup)

He may not be gaining ground just yet, but he’s keeping pace, and once he decides to focus on language he will flourish. I am so excited to see what the next year brings!

(And yes, lame amount of pictures, I didn’t realize the date and haven’t uploaded any of the photos I have of Danny lately!)