exhibit a, y'all

tomorrow is m's last day at her oral deaf school! (insert many emotions, including disbelief, here)

last night i took this little video of her singing to share with her morning music teacher at school (she gives her a little shout out in the last few seconds), and it pretty much sums up why we made the trek for almost four years to a school an hour away. my girl may never have a record deal, but listen to my deaf munchkin's sweet little song:

in which a parent's heart breaks a little

we have lots of talks with m about being deaf.

obviously she is in a category which is sort of in the middle of norms- 

she is deaf but with her implants she hears.

but sometimes 

she thinks that when she grows up she will have typical hearing and not have to wear implants.

sometimes she forgets that other people can still hear in the bathtub or in bed, unlike her.

sometimes she asks when ruby will have her surgery for implants.

so we bring it up in conversation often:

"remember how when you were born..."

plus we want her to have a solid identity knowing that her deafness is part of who she is,

so that as she is older and mainstreamed that if it comes up in conversation then she'll be ok.

sometimes there are just things that 

make my heart go crunch.

and sometimes that i can tell make her heart go crunch too.

like over christmas

we went to this great park 

that happened to have a super high slide.

we are pretty cautious with m's implants on plastic slides, because (rarely) static can build up and knock out the implant's program. once in a while (although it doesn't happen much now) the static essentially knocks out the internal component, and you have to have a new surgery. so, on really big slides, m takes off her implants and goes without. she is usually fine and could care less, since it is her normal. but what happens a lot is that strangers are talking to her while she is up there and she looks at them, trying to understand, or they call to her from behind and she doesn't hear them. 

there was another family playing on this slide at the same time (you can see them in the picture hanging out.) their kids were younger than m, and were taking a very long time, so they kept shouting to m to pass them, to go ahead of their kids. m of course couldn't hear a word they were saying; she was standing behind them, waiting her turn. they kept calling and calling from the ground and one of the dads who was standing behind her was calling to her too. i was trying to get her attention and sign to her, but she wasn't looking down to see me. 

finally i just said in a friendly voice, "it's ok. she can't hear you. she's deaf." they stared at me and said, "i'm so sorry" and as soon as their kids slid down headed to another part of the park. i suppose they could be saying "i'm sorry we were yelling up to your kid when we didn't know she was deaf" but it felt a lot more like "i'm so sorry she's deaf." to which i don't know how to respond.

m slid down, happy as can be and ran back up to go down again, and i smiled and waved at her even though the interaction had made me emotional and sad. sad that someone would say "i'm sorry your child is deaf", even though i don't know what i would say either if it was me. 

and then today,
a rainy day,
m heads to her mainstream preschool,
which she loves.
matt took her, all suited up in her rain jacket and rainboots.
she can't go in the rain with her implants on.
but her little girlfriends that she always plays with wanted to go play outside in the rain.
matt and the director of the school were trying to figure out options for her- ways she could stay dry.

meanwhile m was getting really quiet and looking down at the ground. matt said it was one of those moments when she realizes that she is different - that she isn't just like her other friends who don't worry about expensive devices to help them hear. he could tell she was sad. he was sad too, fighting back tears in front of her.

three years old and so many expectations to advocate for herself, to be responsible for her equipment, to keep up with everyone else.

so one of those moments
trying to figure it all out:
we tell m that she is different, that she is deaf, that she will always be deaf! and that she is wonderful.

and then she experiences these moments in which she is different and it doesn't feel so wonderful.

sure - all kids, all grown-ups have these times of feeling left out or different from everyone else.
but that doesn't make it any easier on this mama's heart on this rainy morning.

why yes, it *is* a rap about cochlear implants

way back when m was just a baby, and she didn't have her cochlear implants yet, my little brother aaron would often take her on walks or babysit her. when he hung out with her, he would sing to her, even though she couldn't hear him with her hearing aids; he made up this awesome rap about her bionic ears. it was back in the days when we were fighting our insurance for her surgery, and hoping that someday she would hear something. i always begged him to record it for posterity sake, but it never quite worked out.

two months ago, when we had m's hearing birthday party, uncle aaron pulled out his bionic ears rap and performed it for us! (my favorite thing is that for weeks after m would talk about how she had bionic ears, and she would sing snippets of the song.)

the video may not be the best quality, but here, in all his glory, is uncle aaron debuting his ode to m's cochlear implants:

happy birthday to my ears!

in a couple of weeks m celebrates her hearing birthday!

2 years ago on march 18th & 19th, m's implants were activated, 

so it was the first days she heard sound!

we'll be having a listening party,

with friends bringing their favorite songs to listen to at the party and then all year long.

what songs would be must-listens in your world? 

what song can you always get lost in?

or dance the night away to?

or brings you back to middle school or college days?

what song would you 

add to m's hearing birthday playlist?

comment below & i'll add them to our party soundtrack!

two years ago...

two years ago today, after a long and hard fight (that i feared we would never win against the big, huge insurance company, although i fought my little heart out) and so much anticipation, 

m had her bilateral cochlear implant surgery. 

(post surgery)

in some ways, that day seems so long ago. but then i scan back to what i wrote that day and week, and it is fresh and so recent and even raw on some level. (doesn't she look so tiny in those posts?) i strangely felt incredibly calm during the surgery, but there were so many unknowns looming ahead of us.

there are days that change everything in the trajectory of one's life; it seems like most of the time you don't realize that a day will affect so much in the future- say, when you first meet your future spouse or the day you decide to take a class that ends up determining your vocation.

on february 23rd 2008, we hoped that that single surgery on a single day would fundamentally shift the possibilities in our daughter's life. we waited and trusted that surgery would open our daughter up to the world of sound. we hoped she would have a lifetime of hearing moments and that someday she be able to hear us say her name, or sing her to sleep, tell us what happened at school, or many years from now hear her beloved say "i love you" to her or the laughter of her children. but two years ago, we didn't know what would happen after m's surgery. it was uncharted and scary territory.

our baby had lived, well-loved, in a world of silence since the day she was born. and now, two years later, it is hard for me to imagine this child who sings and talks to herself and anyone who will listen not experiencing sound. every day i marvel at her insistent little voice, and how it seems as if she was made to talk and listen, even though she was born deaf.

m's hearing birthday, the day her implants got activated and she first heard sound isn't until next month, but today i celebrate this very special day that marks the journey our daughter began from silence to sound.  my deaf daughter loves to sing and be sung to; her favorite latest mash-up is a self created and ever evolving version of 'it's a small world after all' mixed with 'he's got the whole world in his hands.' the words, especially since they come from her, seem more appropriate than anything else i could write.

It's a world of laughter

A world of tears

It's a world of hopes

And a world of fears

There's so much that we share

That it's time we're aware

He's got the whole world in his hands

He's got the whole world in his hands

He's got the whole small world after all

i hear that

i basically spent all day in bed yesterday, sick. last night matt said he had never seen me so committed to sleeping when i was sick, since usually i get out of my sickbed far  sooner than i should (which i think is partly a result of being self-employed with no sick days for so many years.) 

so, since friday means no school for m, we are having a lazy morning here at home. ruby is napping, i'm drinking coffee, listening to music, and m is using my leg as a horsey and talking to her imaginary friends. (by the way, don't think it is all roses and unicorns- m has also been doing her fair share of not listening and taking some time-outs)

a few minutes ago, in between songs playing, m turned to me and said,

"i hear birds outside. i don't see them, but i can hear them singing." she was right - they weren't very loud, but the birds were a chorus outside. then she ran over to our front window, peering to find the birds she had heard, "i am going to look and see if i find them. oh, i see one out there but i hear a lot of singing, mommy."

crazy that she hears sounds sometimes more quickly than i do. maybe she is so tuned in and trained  to listening that she hears the sounds i take for granted.

regardless, it is a daily miracle. somehow through her deafness i hear more than i ever did in a lifetime.

have a wonderful friday- and don't forget to slow down and listen to the birds singing.

yes.

this brief trailer is for a book called "if a tree falls," by jennifer rossner, who has two deaf daughters. i've included an article she's written on the topic before on this blog. when we first read this article it was so spot on that we just sobbed. suffice it to say that her words are powerful and beautifully written and resonate with me.

the very shortest version of our story

last weekend was the annual benefit to raise funds for m's school, jean weingarten peninsula oral school for the deaf. we were asked to be in the video and tell m's story. they used a couple of minutes of it in the video, so i thought i'd share. the video is 5 minutes long, and was the preface for the auction portion of the evening, so at the very end you'll see it is announcing the auction bidding. it was pretty emotional to share our story (as you see from my tears!) luckily he only included a short excerpt. thought you might want to see for yourselves:

choose your own adventure, after all

(i should preface this post by saying that a friend asked me to write a guest post on her blog; we ended up going in another direction, but i'd written the following post about how life doesn't always turn out the way you anticipate. i write about m's deafness, and especially those early days of finding out her diagnosis, but we all have these moments-don't we?-when life doesn't go the way we expect.)

When I was a kid I wasn’t the most discerning literary critic. I’d read the back of the shampoo bottle when I was taking a bath or the cereal box when I was eating breakfast; I would read anything; I loved escaping into stories (or even just words, since a shampoo bottle doesn’t exactly transport you very far.)

(reading with my great aunt orpha)

Do you remember the Choose Your Own Adventure books? You’d read a chapter and then get to decide if you wanted to go to page 26 or page 83. Depending on which page you picked, the plot would go in completely different directions. Then twenty pages later you’d get to pick the direction of your story again. Of course, I kind of cheated choosing my own adventure and just chose all of them. I’d read all of the possible storylines and then decide which one was my favorite instead of just picking one.

Here’s the thing – in real life you don’t always get to pick your storyline. Stuff happens that you can’t change. The trajectory of your life doesn’t always line up with your expectations, and you can’t go back to the last chapter and choose a different plot direction. You have to learn how to live into the narrative you are given and make it your own.

When M was born into a world of complete silence, deafness wasn’t on our radar. At all. Maybe other stuff, but deafness, not so much. I still can’t quite explain the feelings that I had in those earliest days. I was in a very dark and lonely place. I felt emotionally paralyzed. This completely dependent, beautiful baby needed to eat every two hours and all I wanted to do was hide in my bed. My husband would come into our room and say, “You need to go pick her up. You need to feed her and snuggle her.” I would resist. I didn’t want to hold her or look into her big eyes. I didn't want to snap out of the sadness I was in- and when I actually made contact with her, it was impossible to feel completely broken because she was this amazing little being looking up at me. Finally I would give in because she needed to eat every two hours, and then moments into cradling her in my arms she would somehow, inexplicably, cut through my grief. The deep sadness still sat in me, but there were moments of reprieve as I held her.

In those very early days I felt so empty and lost. I didn’t really know how to proceed. It was as if I was treading water and no matter how hard I pushed my arms through the water I was sinking deeper and deeper into grief. I didn't want to be around anyone- even my dearest and closest friends and family. I (briefly, like for a nano-nanosecond) considered giving my daughter up for adoption. It was maybe one of my more dramatic plans. I thought of running away. I honestly felt like I didn’t even know how to be a parent, much less a parent of a child with special needs. I already loved this three-week-old baby, so it wasn’t that I wanted to get rid of her or that I wanted another baby who could hear instead. It was just that I was incredibly scared of messing up, and when it came down to it, this wasn’t the way I’d anticipated my story going. I felt like I was broken in a way that couldn't be fixed.

When I spent time in West Africa right out of college, part of the time was in Monrovia, the capitol city of Liberia, which had been completely devastated because of the tragic Liberian civil war. Driving through Monrovia at the time, buildings were decimated, roads pocked and unusable, neighborhoods gutted. My Liberian friends would always describe how beautiful the city of Monrovia had once been, and would speak with hope of what the city could become, even though it literally was falling apart. That image, of having great hope despite the surrounding and immediate circumstances, resonated with Matt and me. We wanted our child to be a person of hope and beauty even when that wasn't what life or the world looked like at the moment. In retrospect I think I romanticized the actual grief those Liberians must have felt as they longed for their beautiful old city which was now in shambles, with no tangible proof that their city would one day be a place of beauty. I fast forwarded through the deep woundedness they must have been living. (That is what we usually do - right? Minimize grief and fast forward to something more comfortable.) Even though we were naming her for such a specific reason, I didn't really think our daughter's name would be appropriate in her very first days of life. But here we were, with a circumstance that was out of our control, heavy laden with grief and loss, feeling like we were in the midst of a destroyed city.

M’s deafness wasn’t going away. I couldn’t change the basic narrative structure for our family. She was deaf at birth, she is deaf now, and she will be deaf when she has children of her own. But I could affect who I was and how I lived out this storyline. The grief was still there, the deafness was still there, but at some point I chose to crawl out of my bed.

I've blogged about points of joy before. My mom, who herself has had some pretty significantly painful chapter in her life, is the person who raised me with points of joy and then who forced me to recount daily points of joy during an extremely hard season of my life. She believes that we can always find little moments in each day that are glimmers of joy. This isn't coming from someone who has been immune to grief and loss. Points of joy come from someone who has had to chose joy when life was often quite bleak and broken. 

We all have these circumstances-they may be huge things, they may be little things- that we wish looked a little different. Sometimes I think the first step is realizing that the actual circumstance may not change. Ever. We don't always get a do-over. I had to authentically grieve M’s deafness (and every so often, I have to grieve it again) before I could move on towards healing. Life may never look exactly the way we want it to. And so this is the part of the adventure that we get to choose: bitterness and stagnation, or hope, which grows and deepens us despite our circumstances.

"i hear that!"

m has been going to her school, jean weingarten peninsula oral school for the deaf, since she was 7 months old! at first she went to one on one speech therapy for an hour a week. last school year she increased to two days of class a week and 2 hours of speech therapy. this year she goes three days a week to class and 3 hours of therapy! every day starts with the whole school and staff at morning music. one of the things that i really like about jwposd is that they see parents as the ones who are teachers 24 hours a day. our time there is not just for little m, but it is also to teach us as parents how to foster speech and language at home and in the future.

(i promise not to keep posting lots of videos, but thought these would be relevant to this post, especially in tandem with m's speech sample video that i posted last week.)

here is a snippet from morning music a couple of weeks ago:




thanks to her hard work, to the guidance of her teachers and speech therapist, and to our own work at home, monrovia is thriving. she is learning to think through situations, listen and speak. her school consists of typical hearing kids, kids with a range of hearing loss, and profoundly deaf kids. it has been a commitment to drive an hour each way to school, but the sacrifice has resulted in great gifts for our daughter and for us. she is surrounded by immensely talented professionals who tailor their interactions with her to her individualized needs and level.

here is a bit of morning music from last november. you can see here how much little m's langauge has skyrocketed since a year ago:


here is a minute from little m's class during play/exploratory time last november.

next month is jwposd's annual benefit to raise money for the school. as you can imagine, her school is in a hard financial place right now- as most organizations are. i would love for this school to continue and thrive long after we leave, as it has transformed our daughter into a speaking, listening deaf child. donations to the benefit are being matched, so this is a great way to help her school out with funds. if you are in any way inclined, you can donate cash in any amount-even a few dollars, donate an item to the auction (anything! even something small can be grouped together with other items. you can donate services or goods!), or even sponsor a table-top. for more information on anything related to donating to or attending the benefit, go here.

i am so grateful to the work of this school, and i see it as such an amazing cause, so wanted to give anyone who has followed our daughter's story the opportunity to be a part of enabling it to help other kids who have hearing loss.

ears

this afternoon we have m's first audiology appointment since january. she's been really temperamental lately and it's hard to know if the cause of her whining and fussiness is her ear infections (which she has been getting almost constantly), her implants somehow bothering her (which happened before when 2 of the electrodes had to be turned off), or her just being 2 years old.

i am kind of hoping it has to do with ear infections, because i like that problem more than i like her whining just for the sake of whining...and i like it way more than her implants having more issues. the more electrodes that get turned off the greater the chance that we may have to have another surgery and put in a new internal component.

i feel like these appointments always stress me out - my sweet feisty daughter is not always the most cooperative in booth tests, and i always wonder how accurate her results are. hopefully we'll find out that her implant settings are absolutely wonderful, and that she is hearing as well as possible at this point. in the least we know she is getting a lot of sound input since she is talking so much and hearing even very quiet sounds.

deaf moments

part a:i knew this moment would come, but i thought it would be when m was a little older for some reason.

a few weeks ago m and i were sitting on the couch hanging out, and she was staring at my ears intently. finally she said, "mommy, why no put on ears? roro put on ears." matt and i knew that at some point she would ask why she wears implants and not everyone else does. after all, she has a set of toy cochlear implants that came with a stuffed animal when she got her implants, and she often plays with them by trying to put them on me. they look identical in scale and color to hers, so they look like the real thing. she notices when people have hearing aids. she'll point behind our ears sometimes, but when she actually asked me why she had them and i didn't, it took me off guard.

i've used the word deaf with her, and explained that she is deaf, and that's why when her ears are off she doesn't hear, but i don't think she totally understands it yet. i think she assumes we all stop heraing once we take baths or showers, or when we take naps or go to bed. i think she thinks it is normal to attach a device to one's head with wig tape, and to lose sound every so often when the implants coil falls off.

so i began a conversation that will last a very long time-throughout our lives i imagine, about what it means to be deaf, and to have implants, why she has them and we don't. it was short, and i tried to use words she would understand. for now i said her implants were special ears that helped her listen and speak, and that when she was born her ears couldn't hear, but when mommy and daddy were born our ears could hear, so we didn't have special ears. moments later she moved on to playing, and that was it.

then the other day i was changing ruby's diaper. m was laying on the bed next to her, snuggling up to her sister as she likes to do. m pointed at her head and said, "mommy, ruby no have special ears. roro, special ears."

so i guess she remembered at least a snippet of what i said.

part b:
this is how you know you have a deaf child with implants-

multiple times when i have been holding ruby i check her head to make sure her implant coils haven't fallen off. then i remember-oh wait. she doesn't have implants.

it's funny what becomes normal. every time ruby startles to a sound it startles me. i often forget that she can hear at this age. it became so normal to us that m couldn't hear (even with her hearing aids) until she had her implants that whenever ruby responds to sound it kind of surprises me.

proud mama

i usually don't post videos on here, but i couldn't resist posting little m's debut singing at her end of the year school talent show.

two years ago, when m was three months old, we visited the graduation/talent show festivities at her school for the deaf for the first time. i remember holding her teeny little body in my arms as we toured the school that morning. we didn't know what to expect. we peeked into classrooms and interacted with children wearing cochlear implants and hearing aids. i remember a little girl named mia walked up to us and said, "is your baby deaf?" as if it was the most normal thing in the world. no one had ever assumed our baby was deaf before. mia was deaf, had two cochlear implants, and was talking and listening to us. then we went to the talent show; deaf kids singing, playing the drums, talking. it was amazing.

and now, our daughter is one of those kids who is learning to listen and talk. she got up in front of all of the teachers, kids and parents and performed. i'm so proud of her. at first, i sang a song she likes from school, "stepping in and stepping out." suddenly doing the motions isn't quite enough for her, so she motions to me that she wants to sing itsy bitsy spider, grabs the microphone, and proceeds to sing her very own rendition of twinkle twinkle little star. (she is kind of quiet so you may want to turn your volume up)

matt and i both got teary as she sang the first two lines of twinkle twinkle over and over. the past two years have been so much work, so much energy, so many emotions and as she stood on that stage it all seemed like a miracle.

pass/fail

in my master's program for painting, one of my favorite courses (even though it involved a lot of mental gymnastics) was introduction to critical theory. in a very brief and inadequate definition, critical theory is the examination of culture/society.

bear with me for a moment as i get to what i am thinking about:

binary systems was one of the concepts we spent a great deal of time discussing and studying in critical theory, and refers (essentially) to pairs of polar opposites within a culture: male/female, presence/absence, civilized/savage, crazy/sane, rational/emotional. it is much easier for us as humans to categorize according to binary pairs rather than deal with the grey area that lies between these two places. in other words, we like to put people, emotions, situations into boxes or categories so we can simplify and deal with them more easily.

i've been thinking about this a lot as i think about monrovia. she is deaf, but she can hear and speak. still deaf though. it sort of puts her into this weird in-between place in which she isn't totally hearing or totally deaf. i wonder what her experience of processing who she is as someone in between the identity of "deaf" and "hearing" will be as she grows older.

i thought of it again as baby ruby took her newborn hearing screening in the hospital last week.

we didn't know if she would pass or fail.

we had so many mixed emotions.

when the screener came in, she said, "i'm just here to do a little hearing screening." of course, this had been the part that we had been anticipating, knowing that for us it wasn't "a little" hearing screening at all.

ever since m took her hearing screening 2 years ago and didn't pass, it has been something we've thought and talked about: when we would visit friends' new babies in the hospital and see the hearing test checked off the list of things to do before they checked out, when we saw a pamphlet about the screening lying around at a friend's house whose brand new baby had just come home, when we discussed whether we would have a second child (i actually envisioned the moment of the 2nd baby's hearing screening & played it through in my mind more than i did about labor.)

matt told the volunteer screener, "i just want you to know that our daughter is deaf, so we just want you to be aware that this will be very emotional for us no matter what the results are." she didn't really seem to hear him, because she said, "well, if she doesn't pass it's most likely she just has fluid in her ears and we'll just retest her a few times." (i wanted to say, um, if she doesn't pass it is probably because she is deaf just like her sister is, but i didn't say anything.) then she told us how valuable and important the newborn screening was for identifying hearing loss early. (which, for the record, i totally agree with, but i don't know that she needed to be telling us that considering the information matt had just given her.)

we sat on the bed looking out the window and squeezing each others hands, not knowing what either result would feel like once we heard it out loud.

the screener checked her right ear. she passed. and then the left, and she passed again. she showed us the results across the decibels on her little machine, and then she gave us a copy of the results and left, closing the door behind her.

and matt and i both started sobbing.

there was and is so much wrapped up in that hearing screening and in the results.

we didn't tell anyone the results all day.

it seemed to be something we just needed to keep for ourselves as we processed that ruby was not deaf.

you know, when little m was diagnosed with profound hearing loss it felt as if the world was caving in on us. we were so swamped, lost, suffocated in grief. we didn't know a way forward. i remember feeling emotionally numb, and i just wanted to escape into myself. i'm not sure how to express this exactly, but we were so, so incredibly sad and at the same time, we never wanted a different daughter. it wasn't sadness because she wasn't perfect, or because we had certain expectations for who she should be; we were grieving knowing that life would inevitably be harder for our daughter. and, as you know, life can already be pretty hard as it is. we were grieving the unknown. we were grieving what we saw as losses for her- not to be able to hear us sing to her lullabies or the birds outside her window or the million other sounds we take for granted. i think i was also scared- i felt like didn't know how to be a good mom, much less a good mom to a baby who couldn't hear me. yet even in the darkest moments, when we had just learned that m was deaf, we didn't want anyone other child in our family. and having her in our family meant having a deaf child.

so, because it was so hard for us, because we grieved her deafness so deeply, because we had talked and re-talked the potential outcomes of the impending hearing test, you would think that we would have been hoping and praying that ruby would pass the hearing screening.

but that isn't what we were hoping and praying. i think we wanted to have the grace and strength to know how to parent either way: two deaf children or one hearing, one deaf. both present complexities because parenting is inherently complex, whether your child(ren) have special needs or not.

it may sound odd, but part of me hoped our second child would be deaf. really. (of course if someone else said this to me, i wouldn't like it very much-unless they, too, had a deaf kid, but it's ok for me to say it myself.) in some ways, to have another deaf child would have given little m another sibling who doesn't quite fit into a box, or a binary opposite...just like her. the two of them could have each other to work through identity issues. matt and i are both hearing, so as much as we love m, we will never completely know what it is to be deaf but also be able to speak and listen with implants.

part of me hoped he or she would be hearing - just because it is easier, in so many ways (both for us and for our child). no barrage of appointments with doctors, therapists, the school district. no hearing aids, insurance companies, surgeries, countless medical bills & paperwork. and of course because then, aside from all of those logistical reasons, our child can hear.

to be perfectly honest, on one level to celebrate ruby passing her screening without recognizing these complexities feels a little bit like a betrayal to little m and the fact that she can't hear without cochlear implants. a betrayal i guess because to celebrate ruby's ability to hear implies that little m is deficient or that we are celebrating who she is not and can never be.

she so when people asked us whether ruby passed the test, we hesitated to answer right away. because we were and are grateful that ruby can hear, but regardless of whether the results were pass or fail, each road had the potential for the loss of some things and the gifts of others.

as we have grieved m's deafness, learned to see the many gifts that have come from raising her, and don't want another child besides little m, we have moved into a place where it isn't as neat as pass/fail. hearing/deaf. celebrate/grieve.

i don't know how much this makes sense or doesn't make sense, but it is just an acknowledgement that both of our daughters are a gift, one hearing, one deaf. that having a deaf daughter has been in some ways a treasure, even in its difficulty and hardness and grief. and the emotions that came rushing at us as we learned that ruby could hear don't really fit into a box. i am so, so grateful that ruby can hear - that she doesn't need implants to listen and speak.

nonetheless it was a whole lot of different feelings sloshing together, mixed up and messy.

just goes to show...

...how little i know.

i swore this baby was coming early, and here we are, on wednesday.

no baby.

due date is friday.

i'll keep you posted, but for now, no action.

meanwhile,

i have to post about how well

this babycakes

is doing.

i have been so bad about keeping track of her language development the last few months,

but her language is exploding!

for example,

last night she said, "i want to read that book."

a SIX word sentence.

and it's funny, because she says things like that all of the time and i don't even stop to marvel at how much of a miracle it is.

she took a standardized test with her therapist to check her receptive & expressive language and she did so, so well

(well, i think so- we haven't gotten results back yet...but apparently unbeknownst to me she knows words like mermaid & squirrel and scissors expressively.)

she was running around the house dancing and singing a song she made up,

and i got all teary remembering how she didn't have access to the world of sound.

cochlear implants are truly amazing.

monrovia is deaf, and she always will be deaf,

but she is learning to talk and listen.

joy in the journey

going, going...gone.

sometimes a full morning of waking up early, then a one hour commute to school, 3 hours of class and therapy, and finally the one hour drive home is too much for this little one and she falls soundly asleep en route home to oakland. admittedly her car-nap is not my favorite thing: if she falls asleep for even five minutes of the drive she won't take her regular afternoon nap. that means no break (or lately, naptime) for me, plus it means a fussypants kiddo until bedtime. that said, it is a full morning of trekking and work for her, so i understand why she wants to sleep.

she was pretty tired after school yesterday, so she fell asleep a few minutes in, and it gave me about 45 minutes of quiet to think.

when we first heard the words that monrovia was deaf, an impenetrable darkness and hopelessness descended into our lives. that sounds dramatic, but that is how it felt. i was sad, angry, and lost. i didn't know at that point that our daughter would be full of life and joy even without the ability to hear. (of course, i could have told you in an abstract sense that things would be ok, and i usually smiled and nodded at the well-meaning people who told me that, but i didn't feel that way in the moment.)

there are many moments that will be hard on this journey, but as i was driving yesterday, i was so thankful for the gifts that have come out of having a daughter who is deaf. i am incredibly grateful for the people who are now a part of my life who likely i never would have met unless my daughter was deaf.

as i sat in the family room of m's school while monrovia was in class, talking with other moms whose kids also have hearing loss. moms who are now friends; moms who teach me how to be a good mom by the way that they parent their daughters; moms that i can talk to about all sorts of things- buying houses, good recipes, life's ups and downs, cute shoes, etc.; moms who get it because we are on similar journeys.

in monrovia's therapy session, i was grateful for her therapist, sharon, who has been working with our daughter since she was 7 months old, and who rejoices with us in every single developmental milestone.

as i walked up to morning music with m's teacher, sally, i was thankful for her energy and creativity in a classroom of two year olds. she brings out the best of the kids in her class.

when monrovia accidentally wiped hand sanitizer in her eyes, beginning a full fledged screamfest, and her classroom aide, matt, came to her rescue wiping her eyes and supplying two animal crackers as diversion, i was thankful for his patience. (and the fact that he is her first grown up boy crush. i hear about matt all day long, every day...)

just watching both sally and sharon exhausts me, but i never doubt that they are on our team and are celebrating our whole daughter, and not just her speech and language development.

and then there are those who i have met through the world of blogging, some who i have met in person, some whom i have not, who have become friends, and who are an encouragement and support.

i'm thankful that 2 years into this journey, my life is richer and wholer. i never would have imagined that when we heard the words "profound hearing loss", but it is worth celebrating.

ears or no ears

(happy monday!)

little m usually wakes up and then i leave her in her crib to adjust to being alive in the world for a while. lately she has been babbling and singing more and more during this morning wake up time. i find it kind of hilarious that she is in there talking, singing, making sound and since she doesn't have her implants on, she is completely deaf and can't hear a single thing she's saying.

this morning i could hear her carrying on quite the imaginary playtime: "jump baby, jump baby! (lots of random babbling) walk walk walk baby!" and then lots more babbling, which sounds like her baby "talking" to her other stuffed animals in her crib. and then a round of "row row row your boat" in perfect pitch. i finally peek in, and there she is, prancing her doll baby around and chatting her up. it is a miracle to me that even without her implants on, she is talking away, saying appropriate things, making believe with her toys.

friday morning matt, m and i went to grab pastries and coffee. m was chatting away and quickly became friends with the women at the table next to us. one woman asked, "how old are you?" "TWO!" m announced. "you are such a good talker!" the woman responded; m's implants were covered by her crazy morning hair so she had no idea she had implants. i wanted to interject, "And she's deaf! She's working so hard to listen and talk!" i was so proud of her.

i am so proud of her.

the deaf question

last time, when m was born and diagnosed as deaf when she was a couple weeks old, we weren't prepared. deafness wasn't even on our radar, and i remember thinking, "i can't do this. i don't even know how to be a mom, much less a mom to a baby who can't hear me."

m's diagnosis plunged us into a place of deep grief and numbness. over time, and through the joys of parenting a child, the grief has ebbed. of course, there are still many moments when the sting of that loss- for our daughter and for us- feels as fresh as it was that first day we heard the words "profound hearing loss."

throughout this 2nd pregnancy, matt and i have thought about this new baby growing inside of me. inevitably, we think about who this baby will be. is it a boy or girl? feisty or mellow?

i have had friends ask me whether we think about this baby will be deaf or not. and the short answer is that yes, we do. can he or she hear? will we begin again with the onslaught of appointments, specialists, meetings with the school district, audiologists? will i nurse my baby in countless medical offices? will i be waging war anew with the insurance company for surgery? would we still grieve our second child's deafness? then again, what is it like to have a baby who can hear?

i don't know the answers. i do know that regardless of the results, that matt and i will both cry at our baby's hearing screening in the hospital.

on ci circle, a yahoo group for parents of deaf children with cochlear implants, the following interaction happened the other day. i felt like it spoke to the complexity of issues and emotions that matt and i feel as we think of our second child, and whether he or she will be deaf or not.

"It has been a really hard day...Our second son who is now 7 days old was just diagnosed with hearing loss...We've said all along that we'd be okay if our 2nd was deaf since we know what what to do, but it still really, really hard. I need to live by my words and be okay with this, but combined with the emotion of having a 7 day old, I'm having a hard time coping..."

a couple of responses from parents:

"I have been there, and it was so tough. Our second child is now 9 and was diagnosed at birth, when our oldest was almost 4. My husband and I grieved so much, for our tiny newborn son, for our daughter and remembering when she was diagnosed and what she (and we) had already been through, and for our little family, which would never have kids who could hear without help. Yes, you know what to do and where to go, but every child is different. I wasn't that
thrilled about doubling my time in hearing-related appointments, keeping track of twice the equipment, bugging providers twice as much, etc."

"I have three children, the oldest and youngest born deaf. Getting the diagnosis a second time is very hard, just in a different way than the first time around. The first time for us was a total shock. It came out of nowhere, and we had no clue what to do or where to turn. The second time, we knew the ropes, but that meant that we also knew what having a child who is deaf entails. We knew about the emotional toll, the hours spent working on language, the CI surgery, the extra expenses, etc. So, knowing what we had to do and what was involved wasn’t necessarily a comfort. It was more of thinking that I had to find the strength to start all over again.

The one plus to having two is that there is a definite bond between them. Rachel was almost 8 when Jessica was born. The day we brought Jessica home from the hospital, I went to Rachel’s room and sat down and told her that Jessica was deaf. She quietly looked at me and said, 'I was
hoping my little sister would be deaf like me.'"

we don't have control over so many things in life, including what this baby's gender, personality, temperament, or hearing capacity will be. i know we'll love him or her. i know we'll figure it out along the way. and i also know it feels like a very emotionally complex thing to consider as we prepare to be parents again.

splish splash

aunt robyn & uncle chris sent little m fun treats for the bathtub: washable bath crayons & paints, fizzy colored tablets that make the water different colors (hence the red water), and bright red bath foam.
m already loves bathtime, but now her average stay in the tub has been extended by a good 30 minutes. (thanks robyn & chris!)

sometimes bathtime makes me sad, because m can't wear her implants in the water and is splashing around so getting her attention to sign anything is hard or i won't know the sign for what i want to say to her. it is one of those many moments when i wish she could hear me always.

but then she has such joy tromping around in the water, and she delights in every moment of playing in the tub, and i remember that it is my grief-not yet (and maybe never) hers.

so that sadness is flooded with gratitude for her laughter, even as i struggle with the realness of the loss of a child who can just always hear like i can. even as i try to push away twinges of jealousy at the moms who can comfort their child with spoken words when shampoo gets in their eyes, or explain that it is time to clean up the toys and get out of the tub, or sing silly bath songs.

look at that smile.

she can't hear me, but she is delighted as can be.

grateful

i am so grateful.

this week is thanksgiving. 

this week also marks 8 months since my daughter's cochlear implants were turned on. 8 months since my daughter has had access to sound and she is learning to listen and talk. her language is exploding. suddenly she understands words i didn't even know she knew: sweater, trash can, balloon... just like any 19 month old, she says "no" quite adamantly if i ask her to do something that she doesn't feel like doing. this week for the first time she began putting multiple words together to form phrases. now all day long she is pointing at things and saying, "what is that?" ("was-sat?") today she said the word elephant while reading with her grandma. three syllables! (well, it sounded more like el-e-tant, but let's not split hairs)

it is literally a miracle.

my deaf daughter dances to music, says her own name, startles to loud sounds, signs bird and says 'tweet tweet' when she hears the birds in our front yard singing.

but this gift of sound hasn't happened in a vacuum.

every single day i am grateful for all of the people who have joined us on this journey so that little m can hear.

i am often in awe of the men and women who work in pediatric hearing loss; they are kind hearted, loyal and patient despite heavy case loads and long days.

we have had the gift of support from the earliest days.

i am grateful for my friend mary claire, who happens to be a teacher of the deaf, and who has been a support, invaluable source of information & guidance, a sounding board and an advocate from the very first hearing test that little m failed.

i am thankful for the individuals who we worked with at children's hospital oakland, who treated our tiny baby so well as she took countless tests, saw specialists & screamed her way through it all. we were so fragile. they were so very kind.

i am grateful for the audiologists who have embraced little m from her very first appointments & made it a joy to come see them, even when the appointment is 3 hours long. i can't tell you how many times over the past year and a half in audiology appointments i have had to nurse little m, change her diaper on the floor of the office, or swap out 50 different toys to keep her entertained. thank you for teaching us everything from how to wrangle hearing aids on a 3 month old to how to use wig tape to keep her implants on. i remember thinking that sarah, our audiologist, who dropped the bomb on us that little m was deaf, had the most awful job. i told her that later, and she said, "but i get to see what happens next. and these kids are incredible."

thank you sarah, annie, and jen.

i am grateful for little m's school for the deaf, jwposd.

i am grateful for the people we have worked with at oakland school district who have been flexible, understanding, and who fund my daughter's participation in this school.

i am grateful for her teacher, sally, and aide, matt, who are incredibly creative and who can keep up with 6 busy toddlers. matt and i are constantly in awe of what a good teacher sally is. 

i am grateful for karen, who teaches morning music with such fun and spunk; it is the highlight of my daughter's morning.

i am grateful for all of the staff at jwposd, who know each child by name, who work every day to teach deaf children to listen and talk, and who treat us like family. i never thought my baby would be in school so young, but it is truly a special place.

i am grateful for sharon, who has been little m's therapist at jwposd for the last year, and who loves her even on her difficult days. i can't tell you what a gift it is to know that the people who are working with your child want to be working with your child. i don't know what we would do without sharon. she is such a gentle, loving, genuine person, and somehow she can keep my daughter engaged for 40 minutes straight. she goes out of her way to be supportive and to guide us in being little m's primary 24-7 therapists. i learn so much from just watching her every week.

both sally and sharon act as if there is nowhere they would rather be than with you and your child, even though you know they each have a crazy long list of things to do.

(on the phone with amy at let them hear, finding out m's surgery had been approved in february)

i am grateful for the let them hear foundation, and for amy henderson brown, the amazing lawyer at let them hear. when our insurance rejected my daughter's cochlear implant surgery, she advocated tirelessly for my daughter. she has far more energy & can talk way faster than i do! my daughter got her surgery when she did because of amy's persistence and efforts. she is amazing.

i am grateful for the surgeons who not only performed little m's surgery quickly and safely, but somehow they left almost no scar at all! i had so much confidence in dr. roberson that i was completely at peace throughout her whole surgery. i am also so thankful for their staff; every time we go to an appointment at california ear institute, the front desk makes us feel like our daughter is a rock star.

i am grateful for my husband matt. 

for so many reasons. 

i love that he goes to therapy and school with our daughter. i love that he does as much to teach her how to listen as i do. i love that he loves our daughter so well, and because we are two totally different people, he loves her in ways i could never begin to. i love that he sings to her, says, "i hear that" constantly, and follows through on all of the ways we are supposed to work with m on listening and talking. i am grateful for his steadfast support through the peaks and valleys of deafness.

i am grateful for family and friends that have supported us on this journey, even when they didn't know what to do or say. i am grateful for the way each of them has been walking alongside us, and caring for us as we learn how to be parents to a deaf daughter. thank you.

finally, i am thankful for the dear ones i have met through this forum, through my blog. some of you have become friends in "real life," and you are a gift to me. some of you write comments or shoot me emails, and i know i am not alone. some of you have deaf children or children with hearing loss, some of you don't. either way, i am thankful for this space and the support i have found here. thank you for making this a place for me to be real about the good and the hard.

this journey is not over; it has just begun, but it has been so much easier because of these individuals who have been with us along the way.

i am grateful.

thank you.