My mood over the past week has swung wildly. One minute I am misty-eyed over the outpouring of support we have received and the wealth of resources available if Simone does have a hearing loss, and the next minute I am hit with a wall of fatigue at the mere thought of everything before us.
Come, experience my neurosis in real time!
12:00 p.m.: ASL is a beautiful language! Each sign is like a tiny visual poem! This is going to be SO MUCH FUN!
12:03 p.m.: IT IS ALL TOO MUCH TO BEAR.
12:05 p.m.: I still remember how to sign the alphabet! And the word “shrimp!” The sign for “shrimp” is adorable!
12:06 p.m.: PANIC ATTACK.
12:12 p.m.: We’ll be able to mock people’s outfits right out in the open!
12:15 p.m.: Simone will think I can’t possibly understand her because I am hearing. Sayonara mother-daughter relationship.
12:16 p.m.: A teenaged YOU’LL-NEVER-UNDERSTAND-ME phase is a given, even if Simone can hear dog whistles and the flap of butterfly wings. I will woo her back with cash and my recipe for piecrust!
Keep in mind that for all I know, as I raced around researching Deaf culture and reading about the ototoxic drugs she was given in the NICU, Simone could hear every word I was muttering under my breath. But anyone who has been reading this site for any length of time is aware that I could teach my very own Community Ed class called Getting Ahead of Oneself: Advanced Proactive Anxiety Techniques ($40—bring your own paper bag to breathe into), so this is perfectly in character.
I have received so many wonderful comments and email messages from people involved in the deaf and hard-of-hearing community, and I have every confidence that Simone can grow up to be a wise, funny, amazing woman regardless of whether or not she can hear. I am frankly baffled as to why I reacted so strongly to something that, rationally, I know is FAR from disastrous, when in the past year I have frequently handled actual disaster with much less brouhaha. The only explanation I have come up with is something about a straw and a camel, and that after the long siege of the NICU and oxygen and everything else, I am just bone tired. That phrase has never seemed so perfectly apt.
Anyway, babies are mysterious. After the initial appointment, there was a lot of surreptitious clapping and squealing and dropping things to see how Simone would—or wouldn’t—respond, and the results of this VERY SCIENTIFIC testing were inconclusive. Once, Simone startled to a clap, but the elephant noises made by her bouncer, the sound of a mooing cow keychain, rattles—all left her cold. The bouncer incident came during my lowest point. We have had this contraption for ages, but no batteries for it, so on Friday we got some and Scott set it off. A great deal of infant-pleasing noise, meant to sound like a rainforest haunted by a mad xylophone, ensued. Any baby would have turned to see what was making all the ruckus—any baby but Simone, who didn’t notice it at all. I reacted poorly.
BUT. Simone has a favorite song, one I made up because I couldn’t remember the words to Oh I Wish I Were a Little Bar of Soap (Why WOULD someone wish to be a little bar of soap? Hence the unmemorableness of the lyrics, I suppose). Our song—Oh I Wish I Were a Little ‘Lectric Eel—has many, many verses, but Simone likes the first one best. I tried pretending to sing it, complete with animated facial expressions, and got no reaction, while an actual performance elicited a wide smile at the first instance of the word “eel,” just as it always does. So who knows. Until the 5th, my daughter remains a puzzle wrapped in an enigma wrapped in succulent baby flesh.
In the meantime, I’ve taught myself the sign for “eel.” Added to the sign for “shrimp,” I am assembling a nice complement of language relating to marine life.
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See how she reacts to the Ogden Nash poem:
I like eels
Except as meals
And the way they feels.
Oof. Alexa.
Perhaps this has been a wild ride because it’s NOT life threatening. You can freak out without anyone, you know, dying.
Eels. Octopus. Shrimp. She’s probably going to LOVE sushi.
Alexa, it sounds like you are in a totally normal place. If Simone can hear, you’ll just be that much more grateful. If she can’t, you’ll cope. It’s what good parents do, and I can tell you are a good parent. When I first found out Seth was deaf, I recited a mantra to myself…”Better deaf than dead, better deaf than dead…” Well, DUH! I was just trying to hold it together and remind myself while deafness is life changing, it is hands down better than holding another dead baby in my arms. But I still have days where I freak out, still have days where I say “What if he never moves out!? Will he drive, and have a job?” You know, pretty much the same things I wonder about my ‘typical’ kids. =) Positive thoughts for the 5th comimg your way.
The sign for shrimp is adorable. As is Simone.
Simone is so lucky to have you for a Mom. =)
based on your post, i went out and checked out signing times (nevermind how many experiments I did on my 5 month old to see if she could hear, because I had no idea if she responded to my voice or not!), I never used sign language with my son, believing it would delay him talking but he was 2 before he really did have many coherant words and the time between 18 months and 28 months were pretty hellish, with HUGE fits (I actually was scared he was autistic for a time) once he acquired enough words that we could figure out what he wanted, the horrible fits magically ended, so in retrospect, I think our biggest issue was lack of communication….so anyway this post brought me back to thinking perhaps I should try some signing with my 5 month old, even if I just get in some of the basics (milk, drink, eat, etc) over the next year perhaps we might be able to eliminate some of these battles down the road.
Sounds to me like you are handling things very well, considering how much you have had to handle in 2008 alone, that in and of itself is amazing…..when my little girl was 6 weeks old, she had a blocked tear duct eye infection, bad thrush along with her normal reflux and her just diagnosed hemangioma….. I was a WRECK, here i was giving my little girl different meds 9 times a day (but for relatively MINOR THINGS)….and worrying about if the hemangioma would grow to scar her beautiful little face. Looking back, I am like dang, look at how truly LITTLE I had to worry about, and how poorly I handled it. So I really commend you for strength…. I am sending lots of good thoughts and prayers your way.
Alexa, those mood swings are quite normal I think. I’ve known about my kid’s LD/ADD for years and we know how to deal with it, but still, years later, there are lots of times when I tear my hair out and wish we didn’t have to.
And that’s okay.
And if you ever feel like screaming and throwing some stuff at walls, or just posting about it, that’s okay with me, and I will listen for as long as you need me too.
I’m still going to cross my fingers it’s fluid, or a blockage of some kind or something easy to deal with.
Okay, Miss Tease, the ASL browser doesn’t have a sign for “eel”. So, are you going to share, or what??
You humble and embarrass me into good behavior–I am routinely mood swinging like that, and I *don’t* have any potential crisis to deal with. That I know of.
And I think it’s really okay to be nervous/worried/frightened about Simone’s diagnosis, no matter how workable it may turn out to be. Even without anything else, it’s just another round of uncertainty. Camels, straw, yadda yadda yadda.
You are graceful as always, despite not feeling like it at the time. We know a number of signs in our house, but not shrimp. Time to see if she has a seafood allergy so I have a damn good reason to use it.
I’ve been thinking about you and Scott and Simone quite a lot since your last post. I think you are completely entitled to your mood swings. I hope you get unexpectedly positive news on the 5th, but even if you don’t, having read your blog from the beginning, I think you’ll be able it to handle it with poise and clarity. And for those moments when you can’t, I’ll be here (as will many others, I’m sure) to read and listen and support.
“We’ll be able to mock people’s outfits right out in the open.”
Not so fast, kemosabe. I tried this with a deaf friend on the subway, in my rudimentary ASL, and the person we were mocking (wannabe hipster with regrettable hair) turned out to be FLUENT in ASL and basically humiliated us off the train. I still blush.
Simone is a lucky baby to have you as her mother.
I would be reacting in EXACTLY the same way as you. That gives me comfort that I at least am not ALONE in the overanxietyanalyzeattack department.
Multiple mood swings: I think a song should be made for that! Perhaps eels with multiple, massive, meteoric, magnanimous mood swings. For Halloween: eerie eels :) That kind of makes me giggle now!
Alexa, I wish that you and your family didn’t have to deal with this latest hurtle. But I love that you can find humor and strength in all of this. Know that there are many of us out here hoping and praying for you all.
I wonder how many people learned to sign shrimp because of your site. Another cool sign is the one for world.
I hope your appt goes well and your daughter gets a break. She is adorable. I really loved the picture when she looked like a suspicious baby.
Another book you might want to get to teach yourself and Scott sign language, Alexa is: “The Joy Of Signing” by Lottie L. Riekehof. I bought it about 5 years ago and it was $15 at Barnes & Noble. There are drawings of what the signs mean. You should see dog, cat and lion, they are so cute! Dog is slapping your thigh and snapping your fingers (the art of calling a dog). Cat is forming whiskers on your face. Lion is taking your hand and pulling it across the top of your head to form a mane. So neat!
I was thinking, Simone’s hearing problem MIGHT also be tonsils and adenoid problems, as babies don’t have developed sinuses yet. A cochlear implant would immensely help her to hear. My friend who has one says she can hear nearly 90%, and she is the one who lost her hearing in a car accident as an adult. They learn to read lips too, so Simone may just be watching your mouth and learning how to read your lips.
I’m just curious and wondering if it would be OK to get some Debrox and clean her ears out anyway, anyone else want to comment on that? I’m just not sure. Sometimes you can’t see ear wax that is way in. The ENT will be very thorough, I’m positive.
I’m pretty sure there is a very bright light at the end of this tunnel and you are approaching it rapidly. Still thinking of the Flotsam family!
Alexa,plain and simple, your daughter is beautiful and brilliant and regardless of the outcome next week, nothing is going to change that. Hang in there, you’ve been through much worse and look how that turned out? :D
Why would anyone want to be a little bar of soap?
so you could go slidey slidey slidey over everybody’s hidey, of course.
Eel is such a short word……I think it would be finger spelled out. The “E” finger sign looks like a lowercase “e” and the “L” certainly does look like an uppercase “L”, so I think that is how eel would be explained. The lady who teaches ASL at my church said sometimes there are no signs for things, and you have to finger spell them out.
You are handling things just the way you should. Good luck next week. Simone will be in my thoughts and prayers.
Alexa,
As an avid reader of your blog who also happens to be an audiologist, I just want you to know that I work with hundreds of children with varying degrees of hearing loss. Some sign, some talk, and some use the combination of the two.
Simone is so lucky to have you in her life because you would do anything for her. And THAT is what makes all the difference.
hee! Ah, I would be doing the same thing in your place. You are entitled to a freakout here and there, since you can obviously put things in perspective when necessary.
I do love Laura’s comment above, incidentally.
I sign all the time with my hearing son and he loves it. He’s 10 months old now and he signs duck at me frequently (he’s crazy about ducks). He has his own sign for food (opening and closing his mouth several times in succession) so I reproduce that sign instead of the conventional one for ‘eat’. Also, if I open and close my mouth to him he will look around for something he can offer me to eat (or else offers whatever he has been chewing on).
It is fun communicating in signs because he communicates right back (inlcuding wagging his finger at me when I make him cross). Ultimately, you will understand each other and you will love each other and nothing will be lost.
I, too, think the other verses of the soap song are more fun anyway. Here’s a couple for your amusement:
Oh I wish I were a little slice of orange (slice of orange!) (x2)
I’d go squirty squirty squirty over everybody’s shirty, oh I wish I were a little slice of orange.
Oh I wish I were a little can of pop (can of pop!) (x2)
I’d go down with a slurp and up with a burp, oh I wish I were a little can of pop!
I suppose that one’s most fun if you’re actually from a region that uses the short version of “soda pop.”
I DID like where you were at: 12.12pm. And I graduated from your community class, I feel. With honours, and a gold-trimmed paper bag.
Thinking about you every day here. We care lots.
We’re fairly tuneless in this house, but hubby does a good line in bedtime story ad lib chants on a (worryingly) realistic rural theme.
‘Mrs Farmer went out to feed all the animals… she fed the cows that go MOOOO, the sheep that go BAAAA, the goats that she wouldn’t have under any circumstances coz they’re bloody silly animals, the pigs that go OINNK except she’s not having a bloody sow either, and then Mrs Farmer takes some hay to the hayburner-horsey except the stable’s EMPTY because the wise old farmer sent horsey on holiday to the GLUE FACTORY!’
Ahem. Your zappy eels sound much more child-friendly.
Here’s to 2009 being an easier year for you one way or another!
Though I must say that I’d love to co-teach the proactive anxiety course with you.
Also, if you need a little distraction, I’m blogging again due to unforeseen events.
Oh that Simone, always keeping you on your toes! I’m still hoping the best for your succulent baby. You guys are an awesome family!
Oh, mood swings. Nothing quite like the Merry-Sad-OMG-REALLY SAD-Angry-OK Round!
On a more wistful note, oh, I wish you’d woo *me* with your pie crust recipe :)
I am thinking of you and your terrific family and they are good (and occasionally worried) thoughts.
I’m just so incredibly charmed by this blog.
Unrelated and I’m fairly sure unsolicited: Music and Silence is this really beautiful really fantastic movie about deaf parents whose kids can hear. And the oldest girl is a musician. And it’s a really great movie. Like. Really great. Okay I’m done.
I don’t think it’s at all strange that this non-fatal issue has hit you as hard as it has.
Speaking as a micropreemie parent myself, I know half of what kept me going through all the oxygen and feeding problems and illnesses and scary scary stuff is the hope that someday this will all be behind us. Someday life will be normal again. It’s the issues that look to be permanent that have hit me the hardest, even if they’re not as terrifying in the short term.
I have a friend who has been doing sign translation volunteer work for almost 20 years – he signs at conferences, schools, church ceremonies, etc. He is friends with a lot of hearing challenged people/kids and their parents and I talked to him over the weekend, I mentioned your situation. It’s his opinion that this is a very small obstacle and that a lot of people who have to sign as their means of communication are more intense learners and observers than people who do not. He’s also noticed they are better students. And yes, best of all, you can mock people’s outfits right out in public. LOL It’s just a lot to swallow up front, and who knows, after your appt Nov 5th, it may not even be a concern after all.
Hang in there, Alexa. Simone is such a darling baby, and loved by so many of us via the the baby of the week offerings. I hope November 5th brings good news. Hugs. Nibbles to Simone.
So much to handle all at once.
From my humble point of view you will stil have a beautiful wonderful daughter no matter what happens next week.
And of course you will go through mood swings. It’s your daughter, and you will be concerned about what she is going through no matter how old she gets.
On the plus side, my mom took me to Signing Lessons at our church when I was in the 3rd grade. We even used to sit on the deaf side at church. It was lovely, and I can still remember quite a bit.
In all that happens, our thoughts and prayers will be with you
Do you know what the best sign is? The sign for “willy-nilly.” YES, THERE IS A SIGN FOR THAT. It’s the only one I know, although now I also know the sign for shrimp and eel, so thanks for that.
Wishing you the best for Simone!
My favourite is the one about being a little “Mos-qui-to” because you would get to “Bitey-bitey-bitey under everybody’s nighty!” My kids love that one – soooo naughty!!
I’m sure you are doing the mental roller coaster right now. It sounds so draining. I did the same when my daughter was diagnosed with ADHD. I went between sobbing “She’s broken…she’s bro-o-o-ken” and thinking “Ooooo! Here’s a neat technique we haven’t tried! This chart describes it really well….” And back and forth and back again. I wonder if it comes from being a geek?
Best of luck on the 5th!
I can imagine this is a lot to sort through and a lot to have on your mind.
Good luck with everything and I hope the 5th comes for you fast!
I think about you and Simone often. And I want to cry – and laugh along with you.
All I know is that no matter what happens – you will know exactly what you need to do to make it right. You just know…now THAT would be an awesome class for you to teach. I’d take that one :)
Here is a transcript of my thoughts last year when the audiologist said, of my five year old, “Katie has non-conductive hearing loss, in other words it is a sensorineural, permanent loss in both ears”
“Oh, crap”
Then, with much weepiness, “She’ll have to wear hearing aides on her wedding day.”
Then, with a huh!, “Maybe it will be just enough to get her into any college she wants.”
And then the whole, but I already have a special needs kid – I can’t have another one! thing I mentioned w/your last post.
In other words – the swings are normal, to be expected, suck, and will continue for a while (as, unfortunately, will the uncertainty). I so wish you weren’t going through this, but I thank you for sharing as I have no ‘in person’ people that are going through the same thing.
Last thing – sign has been a lot of fun for Katie, although not really necessary for her. Where it has been a life saver is with my (sigh, not the most politically correct way to say it, but the most accurate) mentally retarded two year old whose genetic defect usually precludes speaking for some unknown reason (shout out to the trisomy 9 folks!). He has really developed verbal language around the words we have been signing with him and gives him a great way to communicate when speaking just isn’t happening. Have you bought a big sign language dictionary yet? It seems to me about half the words are extremely naughty, so there is that too.
I would like to sign up for your class, as well the complimentary course in “Straw, Camel’s Back/Other Shoe, Dropping.” Obviously not “bad” news comparatively speaking — when the comparison is, you know, THAT, but not a terrific thing to have to learn and fret about, either. Having only been near your shoes in the information receiving stage (and only given 12 hours to sit with it before the situation changed again), I think there’s a lot to be said for just getting over the initial shock, regardless of how up/down and lovely life will now continue to be. I’d allow yourself a little wallow time when you need it, and know that the shrimp lies on the other side. (Perhaps “I’m the Biggest thing in the Ocean!” would be a nice book to acquire?)
I’m sure you’ll teach her all the bad words and how to discretely hide your hands when on the subway next to someone with bad hair (Laura, that cracked. me. up). Thinking of you all, per usual.
so I logged onto amazon when I read the post before this one and bought a stack of baby signing books so that I could teach Margot signing in moral support for you guys and for her general aperture of mind! We may be over in London (Great Britain) but we are rooting for you, Scott and Simone! Loved Shrimp. Am sure I will be on the ASL browser on a frequent basis! xx Lots of love!
I will delurk to say that my thoughts are with you, Alexa. And also that I recommend the Baby Signing Time / Signing Time series even if your child can hear. My son watched a signing time dvd every morning from 10-18 months (he was always an early early early riser and I needed some time for coffee and to pry my eyes open). He was an avid signer up until he started talking well – when I nursed him he would keep up a stream of signs along the lines of “light on. raining out? yes? no! mama? dad? grammie? doggie? ball! raining! light off!” It was incredibly useful for communication, and I wish I’d kept up with reinforcing the signs even after he started talking….
Reading every post. I don’t know what to say except that it seems highly possible that Simone can or will be able to hear. I say hope for the best and then if you don’t get it you can always deal with the worst later. But I’m a douchebag.
Oh, sweetest Alexa.
I’m a camel too. Deal with husbands cancer? Pfffft. Newborn at the same time? Whatever.
Stepson moving back in with us? MY BACK IS BROKEN AND I CAN’T GET UP. Much wailing and gnashing of teeth. It IS hard ….. but I’m sure I’ll deal with it, somehow.
I’ve read every one of your posts since your egg retrieval last year …. I am in love with your spirit.
You can do anything. You already have.
XOXOXOXOXOX
I am so sorry about your current situation with Simone. In either case– it has got to be hard– I hope for the best— and appreciate your honesty and spunk and even humor in the face of something scary and sad– even if she is deaf– which isn’t the end of the world at all– it will still be hard– but she will still be your simone– and beautiful and wonderful— and all
My little sweet pea would always smile at a whistle which made me believe she could hear better than the professionals though. It turns out she has better hearing at higher frequencies. Maybe that is why there is variance with Simone.
Her program does not recommend sign. They want to “force” her to use her voice because not everyone she needs to communicate with understands sign.
Still hoping it is fluid.
I’m puzzled about why you feel you overreacted, and now are perhaps embarrassed– possibly because some members of deaf culture relayed the rich and complex and beautiful lives they live, and that they’re tired of feeling defective? Well, I totally get that.
But regardless of ultimate outcome it is still an initial shock to discover that your child might not ever hear– hearing is one of the 10 or so senses(the idea that we have 5 is a myth, but that’s another story). It’s a LOT to sort through, a lot of change.
Give yourself a little break. I thought you were graceful and raw and sardonic in wonderful proportion.
Oh— and I forgot to mention– the picture of her standing is amazing! That’s REALLY good for her age. And her pajamas? I covet them.
I don’t think Simone could be any luckier, than to have a mama to sing her “Oh, I wish I Were a Little ‘Lectric Eel” to her in whatever language suits her. So wonderful.
I’ve found that the hurdles we hit now that we are away from the NICU (and have been for some time I might add) are in a lot of ways harder. In the NICU, the expectation was that there were to be setbacks. Everyone spent so much time telling me that at every opportunity.
But now? Now I don’t expect them. I see progress and growth and all the amazing things my boys are doing–that is my focus. The hard times are supposed to be behind us!
But, all that can be done is to do what has to be done. For me it is to keep going like we’re already going and trust that we are doing the best we can for our babies. For you, your husband, and Simone, it is to take things one day at a time as you deal with this uncertainty, just as you already are!
I think you’re amazing.
oh I wish I were a little bar of soap
oh I wish I were a little bar of soap
I’d go wishy-washy-wushy
over everybody’s tushy
oh I wish I were a little bar of soap
oh I wish I were a little speedy car
oh I wish I were a little speedy car
I’d go speedy-speedy-speedy
over everybody’s feety
oh I wish I were a little speedy car
oh I wish I were a little sip of coke
oh I wish I were a little sip of coke
I’d go down with the slurpy
and up with the burpy
oh I wish I were a little sip of coke
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