Pointing and Signing

I do best focusing on one thing at a time. It doesn't take much for me to feel I am spread too thin. I don't like that feeling and let's just say I am not at my best when I've got too many different things on my plate.

In the first year of Vivian's life, her CHARGE diagnosis came together rather piecemeal, which allowed me to focus on one thing at a time. As the diagnoses started piling up, I still chose to focus on one thing at at time. That was a choice for my sanity's sake.

The first five months of Vivian's life were all about her heart - waiting for surgery, having the surgery postponed, waiting again and then living through it. Post-surgery, the focus turned to gross motor skills - physical therapy and exercises galore. Then as we waited for her hearing test and she got tested for Early Start services, my focus turned to communication. Sprinkle in a constant focus on Viv's eating and weight gain, monitoring eyes and nose and general health, and that's the bulk of my worries this past year.

After the hurdle of her heart, concerns about communication have been the hardest for me. Will I ever be able to sit and just talk with my daughter? Will she hear me read her The Secret Garden and Anne of Green Gables? Will she be able to tell me jokes and laugh at my dorky sense of humor? It made my heart ache to ponder the possibilities and the unknown - what if... what if. My hairdresser (who always leaves me with a sincere pearl of wisdom when I see her for 45 minutes every 6-8 weeks) said "Well, Hannah, you'll always be able to communicate with her, no matter what." And with tears in both of our eyes, I knew she was right.

The girl LOVES to point, not always to anything in particular!

Sitting on the beach in Hawaii, Viv pointed all around her: to the ocean, to the sand, to the sun umbrella, to her toys. And I said to Vince "Pointing is my favorite thing Vivian does. I just love it, maybe even more than sitting." To which Vince replied, "Well, it's her strongest form of communication, isn't it?" Of course that's why I love it so much (sometimes I miss the obvious).

Signing milk - hard to capture in a photograph!

On our plane ride home on Friday night, Vivian signed "milk" in context and over and over. Our whole family was laughing and smiling as we signed milk, said milk and were generally overly enthusiastic about milk (I don't even like milk!). I've been doing ASL signs with Vivian for the past several months, but this was the first time she expressed language.

Being silly: putting the ring on her head. Ta da!

I know there will be some very challenging days ahead. But little reminders that communication is more than just talking make me feel okay about being where we are now* and dealing with future challenges when they're in our lap. Communication is enjoying a beautiful view together; it's a case of the giggles; it's shaking our heads, clapping and laughing while listening to Rhianna's Disturbia (no, I'm not kidding); it's hearing new sounds from our little girl's mouth and moving hands in a way that holds meaning. Our future may not hold the most typical ways of communicating, but I have a feeling we will still understand each other, and that calms my heart enough to enjoy now.

*CHARGE friends, thanks for your advice a couple of weeks ago - our Early Start service coordinator has Vivian's hearing test results now, so hopefully we will qualify and start receiving Deaf and Hard of Hearing services soon - I am eager to learn more about ASL and supporting Viv's hearing and listening development, as I don't feel at all equipped to do it on my own much longer.