the drama that is hearing aids

so, now that little m's cochlear implant surgery has been denied, it was time for us to head back to the audiologist the other day to check m's hearing aids and have them adjusted a bit to give her more sound. the testing itself was no fun at all: little m had gone to an appointment already that morning and as a result had missed her nap, so she was already a bit on the cranky side. first, the audiologist put her in a soundproof booth and tested her responses to sound without the hearing aids on, which meant we had to remove the aids. (which entails pulling the aids off of the delicate behind the ear skin, because we have to lightly tape them on with wig tape to get them to stay. as you can imagine, an already fussy, tired baby loves this.) 

it is always discouraging to watch her evaluations, and the fact that she responds in absolutely no way at all to sound. we know she is profoundly deaf, but it is a very visual and clinical reminder. after the no hearing aid portion of the evaluation, it was time to see how she responded to sound with the aids on. so our audiologist reset them to give little m about 40 more decibels than she had been getting before. we popped in new batteries and went for round two. at this point she really was going into meltdown mode, and it just made me sad. i thought about how different these first 7 months of her life would be if she didn't have hearing loss: she most likely would only have gone to the doctor for immunization appointments and regular checkups. it always kills me that i have to drag her to these appointments so that she is poked, prodded, and evaluated. no wonder she gets irritated! i know we are doing the best we can, and she is a really happy baby, even going to so many appointments. (for those of you that know me well, you know i am not a fan of making phone calls and going to the doctor, so the irony is not lost on me that my life now consists of umpteen appointments!)

i think i am just having a tough week with everything feeling compounded and freshly raw, like new waves of sadness. what it comes down to, as i've mentioned before, is that this all feels like a perfect storm: little m being deaf and all the work, energy, advocacy feels minimal compared to the emotional devastation that is happening in my family.

this all brings me to yesterday and my fight with the new hearing aids. 

this is how it goes....first, i am armed with my roll of wig tape, which helps the aids stay put.

my teeny scissors clip the tape, and the otoferm (thanks mary claire for that tip) is a silicone cream which we wipe on the ear mold to get a seal so that they stick in there and don't feedback all day.

here is a hearing aid ready to go. at this point we've checked batteries, checked the sound in the stethoscope, and affixed the tape and the cream. little m is on the changing table, squirming, and so we (hopefully) deftly hold up her hair around her ear, get the ear mold in and push it around until there is no feedback, make sure the back of the hearing aid is in the right position behind her ear and then (because by now she's screaming and all over the place) quickly do the same thing on side two before swooping her up and planting lots of kisses on her.

here is her hearing aid in the way it is supposed to be.

here is little m halfway through the process yesterday. when her surgery was slated for halloween, the surgeon had us remove her hearing aids for a week prior, so she kind of got used to them being off. now that they are back on, she tears them off constantly! we've started putting on a little pilot's hat so she can't swipe them off. BUT brilliant and precocious girl that she is, she has now learned how to pull her hat off. um, yeah. smart little bugger.

add to that the fact that the aids, newly adjusted to emit much more sound, are good for little m, but it complicates life for matt and i because that means the feedback is also significantly louder. (every time the ear mold presses against something - like if she leans her head against the side of the carseat, or snuggles, or turns her head - or anytime the mold is out of her ear canal, the hearing aid feedbacks (which is a super high pitched, and now very loud and dare i say annoying, tone). 

so yesterday involved the above routine, over and over and over. i'd get the aids in, and the feedback would begin. she'd tear at her ears, pull on her hair by her ears, pull on her cap, grab at the aids, shake her head back and forth and scream. at one point she tore one out while i was putting the second side in. at another point she got her cap off so it was just tied around her neck but not on her head, and then she took an aid off and pulled the ear mold completely off of the behind the ear portion of the hearing aid. when they were actually in her ears they were screeching feedback, so i kept poking and pushing at her ears to get the aids in the right spot. it was a pretty tough day. 

sigh. this is a very long and rambling post to say that at the end of the day, i'd fought the hearing aids....and the hearing aids won.

we'll see how today goes.

the fruits of matt's labor

matt has been growing dry heirloom beans since the spring, and it was finally time to harvest them. as evening fell, he sat with a few people in the middle of the garden and they helped peel the beans out of their pods until they filled bowls full of the little beans. i have to say, i was a bit incredulous about the beans when matt first planted them: they took up so much garden real estate, and we'd never grown beans before. 

but shining in the bowls, looking like little matte gems, i was glad matt planted them. later, as we ate warm bowls of my mom's homemade baked beans, i was glad they harvested them. 

now that winter is coming, matt is planting new things in the garden. matt and i are slowly realizing that is season of very hard things in our life is not changing anytime soon, but that we will be processing and grieving for a while. matt asked me yesterday what we are going to plant which can act as a visual representation of that long, slow process. hmm. we have 4 big raised beds and a couple of wine barrel planter boxes...any ideas?

life round these parts in photo form...

...with lots of little m, of course.

good words

today, while driving and listening to "the world" on npr, i heard a remembrance of the south african singer miriam makeba, who died this week at the age of 76. i heard her speak the following words and thought they were very powerful:

"Honestly, I'm just a little old lady, a little old singer, I'm not a politician, I'm not an economist, or anything of the sort. I just wish that people can be soldiers. We can all be soldiers, soldiers not to fight against each other but to fight against poverty, illnesses, disease, and greed, and all the ills of the world, you know just be an army for all goodness."

monday

little m doesn't like mondays either. 

here she is working in her "office" as we call it, doing some very important baby work and, in an instant, she wasn't so happy.  don't you sometimes wish you could just cry like a baby when things aren't going your way?  

don't worry, i am not a completely absent parent, because mere moments later she looked like this, and was back to the task at hand:

may your monday be a little more of the mellow variety. as for us, we are off to two appointments this morning. 

this is not a food blog, although it may seem like it!

last night matt + i made dinner for my mom. matt opened a bottle of bandol + we sat by the candlelight in the livingroom. (cozy) we started with a barley, tomato & celery salad served with lemon vinaigrette and a piece of ricotta salata. total freestyle ripoff of something we've had at our favorite oakland restaurant pizzaiolo, but copycat status notwithstanding, pure yum.

pommes anna, which essentially is potato heaven.

matt cooked a pork shoulder to perfection. the leftovers he's transforming into mexican fare tonight. he's making fresh tortillas and slow cooking pinto beans today.

we'd gotten some honey crisp apples earlier in the day and had some vanilla ice cream, so my mom made a warm apple compote to top the ice cream.

at the start of the meal we lit candles, each one representing a different prayer or word of gratitude.

the compote was just sugar, an apple, a splash of lemon juice and water, and some cinnamon.

the warm apples bubbling away. when we poured them over the ice cream, the ice cream melted just enough. our meal felt so much like fall. it was pretty much perfect.

even more perfect? my mom rocked all of the dishes! 

matt and i were going to go to my friends' (ned and aaron) opening...(great painter and great photographer) at hatch gallery in oakland, but little m slept soundly from pre-dinner prep until 11 or so, so we didn't have a chance to leave the house and go to the opening. that was the only downside to the evening, but i'll be headed there sometime this week to check out the show. anyone want to join me?

sweet treats

this morning matt, little m, my sister, mom, and i went in to the ferry building in san francisco for the farmer's market and all things delicious. after our requisite caffeine and assorted breakfasts (matt-chilaquiles, mom and bec-breakfast sandwich with applewood bacon, fontina, egg + roasted potatoes, me-soft scrambled eggs with arugula, house made sausage and roasted potatoes, little m-mama's milk), we ran into our friend vanessa, who works at the yummy bakery miette, and she ever so kindly stocked us up on sweet treats! 

{amazingness} 

somehow i am currently resisting their power and saving them to enjoy later. (although i hear their little voices chirping out my name form the refrigerator. especially that divine lime tarlet...oh my. somehow it knows my middle name too!) what self-restraint i have! 

thoughts on painting

"One has to believe in what one is doing, one has to commit oneself inwardly, in order to do painting. Once obsessed, one ultimately carries it to the point of believing that one might change human beings through painting. But if one lacks this passionate commitment, there is nothing left to do. Then it is best to leave it alone. For basically painting is idiocy." (From Richter, 'Notes 1973', in The Daily Practice of Painting, p.78.)

images above: german painter gerhard richter circa 1970; betty, oil on canvas, 1988

today i am

in some ways i feel like a broken record lately. we've had a long and hard year, and as i scroll through my blog, you can tell it's been a tough time round these parts. as the week comes to a close, thought i'd reflect...

today i am...

feeling-like i need to get to the gym more. it's hard to find the time, but i always feel better after i work out and get a little alone time.

listening-to some random piped in classical music as i sit and type at peet's coffee; it's competing with the espresso machine in the background. and at home, i'm listening to little m's babbling and hoping it doesn't disappear soon before she can get implants.

watching-the dusk as it has just fallen and we are slowly moving into fall. i love when the days are long and the sun shines late, but as i look outside right now it feels very much like autumn, sans falling leaves and changing colors.

loving-the escape of reading a fluffy magazine before i fall asleep (even though i still have to finish my book for book club); the look on little m's face when she flips herself over and rocks back and forth on her hands and knees- sooo close to crawling! 

drinking-currently finishing off a nonfat latte, and earlier today xiao's blend tea. 

wondering- what will happen once obama is president; if we should fight our insurance or just wait it out; how it can possibly be november already; if i should chop my hair (but not get a mom cut); if it's time for me to be heading home

hoping- that i can figure out how to have a healthy balance between recognizing the reality of hard in our lives right now and grieving, but also having enough perspective to remember that there is a lot of joy and goodness in our life too. 

it's pretty much dark now, and i need to return to my little girl, and her gleeful rolling around the floor, and to my husband, who somehow always gets more done at home than i do.

redemption song

                                 

i am not so much a bob marley fan. for some reason his name conjurs up images of patchouli, old conversion vans and those ugly, floppy rastafarian hats squashed on top of a mountain of dreadlocks. but, that said, this is an amazing rendition of marley's redemption song, covered by matisyahu, excerpted from the rockumentary call + response which is about the contemporary slave trade. (and i promise- this version is completely patchouli free!)

ah, italy

today was sucky. so rather than dwell on the multiple things that are dragging me down into the depths and making me wallow with sad over the rhine songs on repeat, i thought i'd think back to the stillness and joy of sitting out on the deck over looking the grand canal in venice last fall. sigh. think i'll just sit and remember for a few minutes. wish i could transmogrify myself there, a la old school calvin and hobbes. all i need is a cute outfit, a cardboard box and a whole lotta wishin' and hopin', right?

where would you transport yourself to?

election day

matt + i are definitely in the minority in our neighborhood. we are white, and many of the people who live on our street and in our zip code, are not. so when little m and i went down to vote at our polling place a few blocks away today, it felt like a powerful day in my life, and in the life of my daughter. i say this because whether you are for or against barack obama, this is an amazing moment in history: a non-white male is going to be president. (at first as i wrote that sentence i wrote "may become president" but while writing this obama has gotten enough electoral votes.) and as m and i entered the polling place, every single person - voters and volunteers- was another ethnicity besides white.

i have always been a relatively privileged person. 

i live in the u.s.

i am white. 

i've had a good education. 

i've lived in safe neighborhoods.

i was brought up in a loving, two parent family.

i've graduated from a 4 year university and from graduate school. 

i've traveled to almost every state, all over europe and to west africa multiple times. 

i am privileged, and i have grown up with leaders in power who look, if not like me, like my male relatives.

if you are white, it is much easier to say that race doesn't matter, or that racism is no longer an issue in our country.  i remember a few months ago when i was telling a friend of mine that it was really hard for me when other new moms + dads made off handed remarks about how sensitive their baby was to noise, or how shhh we needed to be quiet or how they loved being sung to, etc. my friend said, "i'm sorry if i ever do that, it's just that it doesn't even register that i'm being insensitive. i never even think of little m as being deaf. i just think of her as little m." it was funny to me what different perspectives we had: yes, little m is just little m, but since she is deaf i am also very aware of every sound or noise related comment that people make. suddenly i have a heightened awareness of that issue and it is very personal to me, when if m wasn't deaf it probably would never cross my mind. that conversation made me think about how when you are white, or in some other way privileged (class, etc), that it is easy to not even think about issues of ethnicity, racism, classism and so forth, because it is not on your radar. you don't think it's a big deal because you don't have to contend with it.

anyway, this might not even be making much sense, but what i am getting at is this: no matter where you are on the political spectrum, i think it is amazing that we will have a black president in office. i'm not saying that a black president will solve deeply ingrained issues of race in this country. obama is not some magic pill. and honestly, i don't believe that any political party or politician can provide lasting change and hope for our country.

but, i have to believe that in this there is great power: for the first time, countless african-american children will get to see a president that looks a lot like them, millions of older americans who fought and struggled for civil rights will see a sliver of their dream realized, and this country, our history littered with racial injustices, broke with the past and voted for a black man. 

i am excited that my daughter got to go to the polls with me today on this incredibly historic moment.

fall food

last october on our anniversary, matt & i went to chez panisse cafe in berkeley for lunch. alice waters, who started chez panisse in berkeley in 1971, had just come out with a cookbook, the art of simple food. i bought it for matt to celebrate 5 years of wedded bliss (and 5 years of good meals- mostly. the lentils and pita escapade of '03 will hopefully never be repeated). in the year since, it has become our go to cookbook in its simplicity, clarity, and recipe yumminess. 

one of our favorites is the carrot soup, which is so simple, but so good. (hence the title of the cookbook i suppose...) soup is especially perfect on a fall day, and a great thing to have bubbling on the stove while you wait for election results. (add in a grilled cheese sandwich on the side and it is pretty much autumnal perfection.)

happy eating!

carrot soup - 8 servings

from alice waters, the art of simple food

melt in a heavy-bottomed pot:

4 tbl (1/2 stick) butter

when it starts to foam, add:
2 onions, sliced
1 thyme sprig

cook over medium-low heat until tender, about 10 minutes. 

add: 2.5 lbs carrots, peeled and sliced (about 6 cups)

season with salt

cook for 5 minutes. cooking the carrots with the onions for a while builds flavor. 

add: 6 cups chicken broth

bring to a boil, lower the heat and simmer until the carrots are tender, about 30 minutes. when done, season with salt to taste, and puree if desired

for a smooth soup, use a blender and puree until smooth. (we like to part-way blend to leave a few carrot chunks)

(by the way, no, those yummy looking carrots are not from our garden... sadly, our evil scavenging squirrels would have stolen them long before they got this big)

funny little m

little m is close to crawling, but can only scoot backwards right now. sometimes i just watch to see where she'll end up. last week it was under the bed! all of a sudden she looked very confused as if she didn't quite know what to do next, or how to get out of the spot she'd found herself in.

our friends monte, kristy and their two kiddos (who little m loves) were so kind and sent m a note for her surgery last week (we got it before the news came that there was no surgery...) well, m loved her note. or at least the envelope! she is all about grabbing paper and chewing on it, so i let her experience the card in a way that she would like - by stuffing it into her mouth. by the time she was done with it? it was a wet, shredded up mess.

someone sleeps exactly like her momma, lying on her side with one arm up over her eyes. it is too funny how it is identical. it is like a little mini me!

"hooray?!"

i'll just get this post out of the way for once and for all...

someone anonymously commented on my earlier post about our insurance company denying little m surgery at this point, saying "hooray insurance company!" he or she added that little m was too young for surgery, that we should wait and let little m decide if and when she wanted to get cochlear implants. i'm not going to really debate on this blog, but i thought i should explain where we were coming from in the decisions we are making right now about her hearing loss. then i'll get back to yes, figuring out how i can convince the insurance company to approve her surgery.

deaf, hard of hearing, and typical hearing people can (and will) have their own opinions on what direction to go in with hearing loss. not all deaf children and adults are implant candidates; aside from deciding to get or not get cochlear implants, there are also multiple camps in terms of what type of education or therapy, and which form(s) of communication to pursue. since m is only 6 1/2 months old, and both matt and i are hearing, we are relatively new to the diversity of perspectives within the deaf community. some within the community would be very critical of the decisions matt and i are making for little m. (but isn't that always true for parents? someone was probably critical about the way that we swaddled her or when we decided to let her cry it out to go to sleep, so these criticisms are not exclusive to her hearing loss)

all i will say is this: matt and i are not entering into the decision for her to get implants lightly. we are not trying to "fix" our daughter, and we hope to raise her to have a strong sense of self as a deaf child. would i have chosen for her to be deaf? no. it wasn't even on my radar. there is so much we have to learn as hearing parents about what it means to be deaf. but the idea that we should let her wait and decide for herself whether she gets implants just doesn't make sense for me. 

first of all, parents are always making decisions that affect their children down the road. the hope is, that we are making the best decisions we can. matt and i want to believe that we are entering into this thoughtfully, and i think we have. we have often discussed what if little m later decides that she doesn't want them. what if she later resents that we made this decision for her? she will, of course, have the freedom to not wear her ci's... to sign only... to communicate in whatever way she wants. but with cochlear implants and auditory verbal language acquisition, the window is small. if we want to make verbal language as easy as possible for her, then the earlier the better. if we let her wait to decide, her ability and ease in learning language will be really limited and difficult.  the ci's just won't work as well.

and since i am a hearing person, i know the joys of sound, and i want our daughter to experience and access as much sound as she can. it will never be the same way that i experience sound because she is deaf and i am hearing.

i guess i hope there would be a spirit of diversity, support and inclusion within the deaf and hard of hearing community, especially as we make difficult decisions about little m's future and how to communicate as a family.

dear insurance company,

seriously? you are going to deny me?

give me 10 minutes in a room with you and i'd bet i could change your mind.

xoxo,

little m

my new favorite place

we've had some great talks recently sitting around matt's firepit in our backyard with all different sorts of friends + family. 

it's pretty much great.

come on by...