On Progress, Acceptance and Holland

Over the past few weeks, Sonya has made leaps in terms of her development. It seems like just yesterday she was a tiny bundle. Today, she officially started to crawl! I know our life is about to change drastically, but it is so exciting to see her make such great progress.

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Sonya at one week
Sonya last week as a flower girl at her Aunt Mariana's wedding
Sonya last week as a flower girl at her Aunt Mariana’s wedding – such a big girl!!

On the language front, Sonya is hearing and responding to sound much differently than just a few weeks ago. While in the beginning we were struggling to get her to simply notice/hear a loud sound, she has lately been emulating the sounds we make. This morning, for example, as I offered her some eggs, Sonya responded with “aye” the first sound in the word! Like many babies her age, she has started to do simple hand gestures like lifting her arms when she wants me to pick her up, but on occasion I have heard her say “uh!” for “up!” Interestingly, Sonya refuses to go to sleep unless she is wearing her implants. I carefully remove them as soon as she is in a deep sleep. She must be feeling very connected to the hearing world.

The Center for Hearing and Communication recently posted a terrific video where you can watch a brief moment from one of Sonya’s speech therapy sessions. Note – this took place several weeks ago – and I can already see the progress that has been made since that time – but it does give you a sense of the type of work we are doing with her amazing team of speech pathologists:

These days, I am feeling much better in general about Sonya’s well being. The implants themselves – which initially were difficult for me to see her with – have become such a part of Sonya that I don’t notice them at all. And when I do, I think they look rather cute. It brings to mind a poem that was sent to me by Shayna De Lowe, our cantor at Congregation Rodeph Sholom – and the mother of a son who also has bilateral cochlear implants. Cantor De Lowe has been an amazing support to me and my family. She also has an excellent blog focusing on her family’s experience here.

Prior to Sonya’s surgery, Cantor De Lowe sent me the below poem, which I love and re-read when needed.

Welcome to Holland … by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

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