"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.

a day in the life...

little m has full fridays: it's the day she has therapy at her school, and often the day she also has audiology appointments. the good thing is that it's matt's day off, so we can all go together; the bad thing is that it's matt's day off, so it's not really much of a day off.

here's a sneak peek at one of our fridays:

in the car, ready to drive to school at 7 am, tea + grapefruit to go.

the beginning of our drive when we'd all rather be snuggled in bed...

aunt robyn, in town for a visit, feeds little m some breakfast in the backseat.

ah, the joys of 880 south

i make phone calls: to our insurance to try and get her surgery approved, to the let them hear lawyer to check in, and to her doctor to make appointments.

we get down to her audiology appointment early and none of the hole in the wall places nearby are open for breakfast, so we resort to the only restaurant open: mcdonald's (little m's first time visiting the golden arches. sadly, she was mesmerized...) 

back on the road and headed to see the audiologist.

waiting at california ear institute. (they have really good magazines for a doctor's office...)

little m has a test in the sound proof booth to check what she is hearing with her hearing aids. aunt robyn holds her while annie and jennifer do the test. 

turns out, she's getting a teensy bit, but it isn't that much. 

there's always a little pain in my heart when the sound is getting louder and louder and little m isn't hearing any of it.

one appointment down! back in the car, and back on the phone with insurance.

we drive around for an hour so little m can take a nap in her car seat.

we have enough time to stop for some coffee before it's time to got to school.

we stop in the bookstore next door to peets when matt gets a phone call from his secretary. she says it looks like a fax came in approving her surgery with the correct surgery date, doctor and hospital! things are looking good!

back in the car to head for therapy with sharon! we love sharon and sharon loves little m.

little m is brilliant during therapy. as usual. no bias of course!

we work on all sorts of developmental things incorporating sound. 

here we hid a bird in this box and tried to see if m could figure out where the bird disappeared to + retrieve it from the box. 

then we make sounds associated with the bird, and do lots of, "i hear that...do you want that? i want that.." we say those three sentences A LOT.

smartypants gets the bird. why she loves this ugly vulture toy is beyond me, but she does.

halfway through therapy 

we get a phone call from our advocate that little m's surgery is for sure! 

YIPPEE!

we are so excited!

(you may wonder what m is sitting in...we have to cover up all of the toys on this exersaucer with a  blanket during therapy so she doesn't get distracted and play with them instead of focusing on what we want her to play with.)

an hour later therapy is done, we make the hour drive home! 

it's finally nice and sunny outside.

finally home, it's time for some lunch 

and 

then a nap for this busy little girl (not to mention the rest of us).

drumroll please...

{an old school sign for children's hospital oakland...don't worry, their facilities are more up to date}

so, after much deliberation, matt and i have decided to have little m get her cochlear implants at children's hospital oakland. this is a huge decision in our world of hearing loss, and it took a while to decide as there were many pros and cons to both of the programs we looked into. we really super liked everyone at stanford and their program and we actually even preferred one of the implants they use that children's hospital does not (it's the european model and has way better style, but is less used in the u.s. and our surgeon at children's doesn't work with it. leave it to the europeans to be both fashionable and functional! what's new.)

at first, as soon as we said it out loud to each other, i had buyer's remorse and wondered if stanford would have been better. but then we went in for an appointment thursday (yes, we had not one but two appointments there this week), and it just confirmed to me that this was the right decision. i love little m's audiologist. i love her speech therapist. i love that they gave us free loaner hearing aids until her surgery so we didn't have to pay thousands of dollars for a few months of use. i love that it is ten minutes from our house. i love that it is blocks from our pediatrician. i love that there are huge stuffed monkeys hanging from trees in the foyer. i even love that bakesale betty is so close (the most amazing sandwiches. ever.) (ok, that wasn't actually on my list of pros and cons, but now that i think about it, it is totally a pro. while i'm at it, sweet adeline's bakery is also so close and that now bolsters the pros list even more.)

while we were at m's pre-implant speech and language assesment, i met my new hero. adeline mcclatchie, who directed the pediatric audiology department at children's hospital from 1968-1994, and who started their cochlear implant program in 1990! she played with m while i answered umpteen questions for the therapist and she was just amazing with m. in just a few minutes she taught me all of these new ways to interact with little m to communicate with her effectively. honestly, i want her to move next door and be my personal tutor for all things developmental. m loved her too, and as usual, charmed her way through the session as she cooed, played, and rolled around on the floor.

we also found out that if our insurance approves it, m's cochlear implant surgery will be SO soon! either october 31st (yes, as in 20 days from now) or november 7th. wow. surreal, exciting, scary, all rolled into one. that means she will still be 6 months when she gets it- isn't that crazy? i will say that it is all becoming more real, and after her mri this week it remains frightening to think of doctor's opening up my baby's head. wow. so many emotions....

but for now, at least we have a decision as to where her surgery and followup will be, and as much as it is a cliche, we are taking one day at a time around this house!

and so it is.

for multiple reasons, thursday and friday of this week were long days - physically, emotionally, spiritually. once my friend adriane, when she was in an incredibly hard place, told me that although you may be experiencing great sadness, pain, or turmoil, that at least you know that you are alive; it may be counter-intuitive, but the days that take the most out of us also serve as a remember that at least we are feeling something.

at the same time, it can be exhausting to feel things so deeply, to wear life, to work through and process all that a day can hold. where are the spaces that renew us when the world is so heavy?

last night, amidst rumors of an evening of rain, matt and i made our way with some friends to the outdoor greek theatre in berkeley to see the icelandic band sigur ros. there is something in music that i think can heal the places in you that are weary; as the band came out and began, the music washing over me began undoing the damage of the day. a sigur ros concert is striking  in a couple of ways: one, it is incredibly quiet. that is in the nature of the music they make, but we were all standing still, absorbing the music. two, sigur ros sings in a combination of icelandic and hopelandic, a gibberish language they've constructed which has no meaning in and of itself. it is kind of amazing to see thousands of people quietly listening to songs that they will never understand a single word of, but which are some of the most moving songs i have ever experienced. as one song began, this guy behind me said, "this is the saddest song you will ever hear."  

i had mixed emotions- moments where i felt incredible sadness, thinking of how our daughter can't hear music. moments later i would feel the music- the bass, the drums- in my body, and i would turn to matt and smile, saying, "m would be able to feel this music." we kind of wished we had brought her with us. and then there were moments when i would think, "maybe she will hear music someday. maybe the implants will give her this gift- this feeling of being flooded with sound." these massive trees that ring the rear perimeter of the theatre were moving and rustling in the wind; it was haunting to watch them- i didn't need to hear the sound of the leaves shifting for it to be beautiful, but i thought of how it can be even more overwhelming to hear something at the same time as you are seeing it.

there were a few moments when rain threatened or a few drops fell, but we neared the end of the concert and we were still dry. the band came out for a final encore. they began a song that at first seemed like an awful closing song to play; in comparison to the preceding songs, it seemed maudlin and spare. i felt a little disappointed that this is was what they had chosen to close the show. a few drops fell, and as the song built in intensity, the rain began falling harder and harder. as the sky opened, the music rose to meet it, and we were covered in rain. the band, soaking wet, played louder and louder. it was incredible to be swallowed by the sound as the drops fell harder and faster.

and the evening ended with standing in the darkness, in the rain, in the music.

here is one of my favorite sigur ros songs. enjoy.

to blog or not to blog

so, i've been debating for a while whether i'd write a blog. i sort of started on a super trial basis (see below posts from june), and then stopped, and now after a few months, i'm starting again. i guess in a lot of ways it seems like a good way to keep people abreast of life, especially as we progress with choices about little m's hearing loss. at the same time, i suppose i'll post about the rest of life too: figuring out what it means to be an artist and a mom, ranting about my latest irk, discussing my favorite new art show or podcast or habit of little m's, waxing philosophical about food. who knows. i think it will evolve, and maybe become a habit or disappear. that remains to be seen. 

for now, i'll post a couple of updates about where we are with m's hearing. and where we have been. and where we are going. 

a lot of times i talk about how life feels good but hard, or maybe if things happen to be on the tougher side, hard but good; it seemed appropriate for so many things in my life right now: living in the flatlands of oakland; being a mom; having a deaf daughter; having/seeking/working through my spirituality; being married to someone i adore, but who challenges me on pretty much every topic; making art; trying to have new and old friendships, and so on...some days i feel weary. and other days i am so thankful for exactly where i stand. here's a little of where i am at.

after cochlear implant appointment #1

our appointment went well and i think we both really liked the surgeon a lot. she does all of the cochlear implant surgeries for children's hospital okland as well as for california ear institute in san ramon, so she has done many ci's on infants and children. little m charmed the surgeon, as she always does with these doctors :). i guess our audiologist had told her about little m months ago, so she knew all about us already. she was very positive, and she encouraged us with the news that everything looks good structurally in little m's head/ears and that she thinks surgery would be successful. when we asked some specific questions about losing residual hearing and so on due to the surgery, she was pretty upfront in the fact that little m does not have much residual hearing at all. i forget the exact words, but she said that she is definitely profoundly deaf on both sides, with very very little in terms of any hearing at all. (which makes sense especially as we notice little or no change with her hearing aids in)

the shocking and good news: if we want to go ahead with the implants, she would do them (pending insurance approval) at SIX months! wow. that is in the next month or so. with insurance it may take longer, especially as we'd like to do both sides at once (that may get rejected at first, but the surgeon says they always get what they want from the insurance companies, ie both sides implanted, in the end). we were really surprised, so we have a lot of thinking to do. but we essentially have to say the word and they will get the ball rolling.

also, she was very encouraging about little m's likely ability to speak/"hear" with the implants with such an early prognosis. she highly recommended the oral school where our friend mary claire works/ed in redwood city for monrovia, over other programs which incorporate more sign and which often have kids with lots more issues or later diagnosis than monrovia. you can pray for us as we begin to try to get that funded through the school district. our audiologist told us that our priority right now should be to get the IFSP (Individualized Family Service Plan, which is the school districts support for us from birth through age 3) to state which gets us services at that school. so we essentially have to prove that the districts services are inadequate for our needs compared to this program.

i guess the hardest part of the appointment was hearing some of the very scary complications that can happen. she is so small to have such a crazy operation. it's also hard having to answer so many questions about my pregnancy/labor (did you have any fevers or viruses, did you take any medicine, etc etc.) that basically make me mentally scroll through my pregnancy and labor to try and remember if there was something that could have caused this...if i should have noticed something or done something differently. that part is always difficult for me, because it has been hard not to blame myself already.

SO. lots of decisions to make, and another team to see next week. although in some ways we are content with who we've met here and feel happy to stay with this team. in the meantime, she is growing, discovering and changing daily, and we are ever so thankful she is our daughter and no one else's!

where we're at

So....We take Little M for her first cochlear implant consultation. We will be meeting with a potential doctor, who we might if we decide to get implants for Little M. We are definitely headed in that direction, and talking with this doctor today will give us the opportunity to get her opinion on whether Little M is a candidate, at what age she could get implants. The surgeon will be looking at M's CT scan from a few months back, among other things.

This doctor works with the cochlear implant team at Children's Hospital Oakland. Next week we meet with part of the team from Stanford. Basically in addition to getting feedback from these surgeons on whether Little M can get implants and when, this is an opportunity for us to see which team we feel most comfortable with and who we click with (just like picking any doctor).

As we move closer in this direction, the primary conversations we have had have been the following: one, our concern that we are not trying to make Little M "normal". A number of people we have talked to about implants (and you can also hear this sentiment in the movie Sound and Fury (below)) have mentioned that now their child is normal. (Whatever "normal" is. Someone just told me a story yesterday about how someone they knew had a deaf child and then their second child was (her words) normal. I am so sensitive to that these days...) We love her completely and believe that part of who she is is her deafness. Of course we would want her ears to be healed and for her to know the joy of sound and of not only our voices but of the sounds of the world around us (As I write this sentence I hear the sound of the neighbor's granddaughter talking, birds in the trees out front, a car passing our house, a neighbor's door closing...It is amazing how much more i hear on a conscious level now, and how I wish she could hear these same noises) The reality is that even with implants M will be deaf, that anytime they are not on (in the bath, pool, at nightsleeping, etc.) she will still be unable to hear anything. We love her as she is and don't want to fix her, and we know that we will learn from and through her as she will experience this world differently than Matt and I do as hearing people.

Our second main conversation has been the fact that we want you, our family and friends to be able to speak in meaningful ways into our daughter's life. We believe that with implants she would be able to communicate with so many more people than if she was only able to sign. We desire for her to benefit from the richness of the community that we have around us (near and far), and we are depending on you to be a part of the community hat loves her, supports her, and communicates with her as she grows up. I think it would be pretty sad for her if she had to miss out on deeper interactions with our family members and friends. At the same time, we hope that she is able to learn ASL and communicate and know other deaf people that are like her.

It is hard to make so many decisions, and weigh so many options when she is only 5 months old- from this surgery to what kind of school she should go to (yes, that is already something we have to decide. crazy, no?) to the normal stuff like how to best get her to sleep through the night. It is overwhelming. Often. And yet, she breaks through the hard parts of this because she is just pretty amazing. She continues to delight us every day. She looks so intently at everything with such a curiousity and concentration, from shadows to paintings to trees. We love to watch the 24 hour Little M Channel, as the author Anne Lammott would say.

For more information on what a cochlear implant is:
http://www.nidcd.nih.gov/health/hearing/coch.asp
http://www.jtc.org/audcorner/faq/normal_child.php
http://www.bilateral.cochlear.com/32.asp

For more information on the actual surgery:
http://www.californiaearinstitute.com/hearing-device-center-california-ear-institute-bay-area.php#cochlearimplant

A good documentary that you can get from Netflix about some of the issues surrounding cochlear implants and Deaf culture: Sound and Fury

update on little m

{this post was originally an email sent out as we learned about m's hearing loss}

Thank you so much for your thoughts and prayers for us and M this past few days. We feel very loved and supported from those of you who are both near and far. It has been a hard weekend. We went for M's hearing test on Friday, and after about two hours of testing, we got very discouraging news.

M was diagnosed with severe to profound hearing loss; the type of loss she has is permanent and is most likely (or at least as far as we know) just random. Hearing loss goes from mild to moderate to moderately severe to severe to profound. Profound hearing loss is what would commonly be known as deafness. Her tests show that she can't hear anything until the very top range of severe loss, and the lower range of profound loss.

She may have the ability to hear with very powerful hearing aids; if those do not work to help her hear, then cochlear implants may be a possibility. That's about all we know at this point as we wait for the complete test results and follow up. But to be honest, we are not even at the point where we care much about the specifics of how technology can help her hear. At the moment we are wrestling with many different emotions- from changed expectations of what life will look like to thankfulness that the screening caught her loss so quickly to complete sadness. Both Matt and I are pretty overwhelmed with sadness. It sort of feels like we got robbed of this joyful beginning part of her life. Instead of just enjoying our new daughter, we are scheduling doctor's appointments, handling insurance and specialists, researching hearing loss and learning an entire new glossary of terms. Most of all, we are incredibly broken feeling. So at the moment we are processing this, and coming to grips with a new reality for our lives.

We chose the name M for a very specific reason, and now it seems more fitting than we could have predicted. When I spent time in West Africa, part of the time was in M, the capitol city of Liberia, which had been devastated because of the awful Liberian civil war. My Liberian friends and those I met would always describe how beautiful the city 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 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. And here we are. In a place that seems so dark at the moment. 

We hold this grief with the knowledge that even with M's hearing loss we are so blessed, gifted, and privileged with a delightful and perfect child. At the same time it does feel that our immediate little world is crumbling, and we bear the weight of so much sadness right now. With hope that we will move out of this place of sadness, we ask you to hold us and M in your thoughts and prayers. We are thankful to have so many special people in our lives who we know love us and will sit with us in this hard place.

hearing tests for little m

{this post was originally sent out as an email and is pretty honest and raw.}

as some of you already know, our sweet one month old m did not pass her newborn hearing screening at the hospital or a subsequent one at a hearing clinic. tomorrow at 2 pm m is scheduled for an extensive hearing test to diagnose her hearing loss, if any. (we have already seen an ear nose throat doctor who said that the issue is not wax or fluid, and that her ears look great structurally.)

this leaves us with either option a. (our preference) that the screenings were overly cautious and that her hearing is fine or option b. that she has hearing loss anywhere from mild to complete loss. it looks much more likely that she does, in fact, have hearing loss, which we have been grieving, processing, denying, etc. for the last couple of weeks. 

i feel torn in asking for people to pray- i would love to ask you to pray for complete healing, and at the same time, i fear that we will be disappointed and crushed if those prayers are not answered. we know that if she is hearing impaired or deaf that there are many options and lots of technology to help her, and that her life will still be full and wonderful, but right now, we are just sad, anxious, and grieving that our daughter may have a life that looks more difficult than we expected. at the same time, we realize that she is a gift, and perfect, that her life has already brought us so much joy, and that so many people bear much harder circumstances than what we are facing. so our emotions and thoughts run the gamut.

that said, i guess we'll ask you to just pray in the same way that we are feeling. it may seem all over the place, but- we are throwing it all out there, even if some of it is contradictory. please pray: that if she does have hearing loss that God would heal her little ears, that monrovia's test tomorrow would show that she can hear, that we would know how to be good parents right now as we operate on minimal sleep and high levels of emotion and (for Sooz,) higher levels of hormones than usual, that we would take joy in all of the special moments we are having with her and not just be anxious or sad, that we would ask good questions and have good doctors, that our hope would cast out fear, that m would sleep through her test so that she doesn't have to be sedated, that if she does have hearing loss or is deaf, that we would be able to grieve that and then process our emotions in a healthy way, and that we wouldn't be scared.

our little family

i wanted to share with you what has been going on in our lives since wednesday. 

m did not pass the initial newborn hearing screening at the hospital, which we thought was no big deal because she was really fussy and awake when they tried to administer it, and because they told us at the hospital that it was very common that babies fail initially. WELL, i took her to get retested at an actual test site with an audiologist on wednesday, and she failed both tests they gave her in both ears. there is a very small chance that she still has fluid in her ears, which would cause her to fail and not hear, but the more we talk to people about it, the less possible that seems. it is at this point a very very high probability that monrovia has hearing loss- although we don't know the extent of the loss at this point. it could be anywhere from mild hearing loss to profound loss or deafness. 

she is really visually alert and aware, but does not respond at all to loud or sudden sounds around the house; they don't startle her at all and she doesn't ever look in the direction of a noise or a voice. today our pediatrician also told us that we need to be hyper aware of any signs of sickness in her, as i guess the kidneys form at the same time as the ears in utero, so often babies with ear problems also have kidney problems. we see an ear nose throat doctor at children's hospital on tuesday, and then from there they will do hearing tests to determine how severe the loss is.

i am really emotional, thinking through what this would mean for her life, especially if she has profound or total hearing loss. i am struggling with moments of feeling like if i had done something different during pregnancy that maybe her ears would have developed normally. and then i switch to feeling like she is perfect as she is, and maybe this is who God made her to be. i just feel like life is going to be harder for her, and that breaks my heart. anyway, i am trying not be worse case scenario, but as we continue talking to specialists and doctors, it looks like we need to be prepared for more rather than less hearing loss.

i'll keep you updated.