Wednesday, November 25, 2009

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.

8 comments:

  1. This is such a sweet post. I think you three are amazing for all that you have accomplished and the great strides that you have made.

    p.s. I especially love the faces of everyone in the picture where you're playing music :)

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  2. Great post! There are so many things to be thankful for- have a Happy Thanksgiving!

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  3. I am grateful that roro has the most amazing mama in the world! And that Micah and roro are friends. She is already such a fun, happy, passionate, funny kiddo--credit to you and matt, God and all those people in the blog who are helping her to express herself in the world of words and sounds. I am grateful for all I have learned from you about hearing= It makes me so happy every time that Micah touches his ear when he hears something and I get to say respond what the sound is OR when he says "up, up" to the airplanes OR how I now ask "what do you see?" instead of "what is that?" OR saying "Micah" then stopping before continuing. All of that I have learned from you guys. You and RoRo have made me a better mom.

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  4. I love that first picture of little m - so beautiful! And, I love reading an update on her speech/language development. That always makes me so happy - phrases and 3 syllable words now...yippee! (: Awesome to hear about the amazing team that you have surrounding you. Thankful that you share your journey with us.

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  5. the words don't readily come to express all want to say but just know i hear you and am grateful that the journey of our deaf daughters have allowed our paths to cross and for that I am thankful to God.

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  6. Hi Susannah. I've been a bit behind reviewing my fave blogs. This was such an incredible moving post. So glad to hear about how well baby M is doing! Merry Christmas and Happy Holidays!
    Love,
    Amy
    (Ava's mom)

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  7. Hi Im a mom with a 2 and half year old son. He has been implanted in Feb. (almost a year)..and Im very interested in hearing your story. This journey is new for me as we just adopted him few months ago. And he is possibly going for second CI..my blog is http://thejacksonsplus1.blogspot.com/ anyway, Im looking for other parents and learn more through their experiences.

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