The past sixty days have been hard; I’m not going to lie. Perhaps the fact that I’ve not written much is evidence of that. Shutting down a business isn’t easy or fun, so I’m especially thankful for the extra-good blessings as Catherine continues to recover. In a nutshell, she’s given us three spectacular gifts over the past month. And each one has been sweeter than the prior. She took her first steps after surgery, we went camping for the first time since Sarah joined our little family, and – oh yeah – Catherine started to sing. Yes, I’m serious.
Think about this for just a minute. Catherine’s second surgery was 8/21/13. And remember that was the second time she was cut from tip to tail as they exposed her spine in a surgery described akin to quadruple bypass open-heart surgery in an adult. So, imagine my sheer joy in watching Catherine take her first steps only 7 weeks after she survived that risky day in the OR. (In case you missed it, you can click on the green link in the prior sentence to watch). And then take a look here – this is a close-up video of the quality of her steps. You’ll see precision in the heel-toe placement of her steps. Even our therapist was impressed. And in case you don’t want to watch the video, I’ll share the below images so you can see how nicely she stands in her gait trainer and how great she looks overall. No doubt, I am incredibly grateful. But keep reading…
Next, we went camping. If you know even one thing about me, it’s that I love the outdoors. When Catherine was born, I sold my soul to the Devil and we camped in a camper rather than a tent just so we could accommodate Catherine AND I could get outside. Since Sarah was born, though, we’ve only slept one night outdoors as a family and that was in our backyard – even though we got a family tent years ago. I had no idea how much I missed it until I went. Thanks to an amazing friend who somehow knew I was going to need this more than anything I could imagine, we went to western Maryland and spent two nights in the pouring rain and had a blast! My entire being came back to life, and I came back with a restored soul. Seriously – it was that good for me. Just take a look at some of these photos. I actually asked for the one of me cooking to be taken because I wanted to remember that feeling forever.
And then, as if the month couldn’t get any better, we got to visit with Dr. Jan Van Dijk, the world’s authority on reaching deafblind children. He was even knighted by the Queen of the Netherlands for his work and he received the Anne Sullivan award (you do know who she is don’t you?) I called him the Special Needs Whisperer, and he came all the way from the Netherlands to see Catherine. Catherine can hear just fine, fortunately. She’s registered with Maryland’s Deaf Blind Connection because of the difficulty reaching her given her extreme challenges with communication. And Dr. Van Dijk – I’ll just call it miraculously – got her to sing!
I have to confess that watching him, I was uncertain. I sat with the eyes of our home-school administration wondering what they would think about him and anything he’d say. I put on my most scientific hat and watched only for evidence. I stuffed hope down deep inside me and just waited for any evidence to appear – or not.
Repeatedly, he asked her yes/no questions and got her to raise her right arm for yes in appropriate ways. I wanted to believe this was purposeful. I really did. It was hard to deny the frequency and consistency of her response. My scientist remained skeptical, though. I even asked him, “How do we know this is purposeful?” His reply was simple. “It looks to be based on observation consistent enough that I believe it is.” He paused as if letting his accent sink in a bit. “Do you?” he asked. “Yes,” I had to confess, wondering what Brian thought of it all.
He asked us about her MRI and what it looked like. He mapped what he observed her doing with what we told him about her brain. “It’s all there, but it’s squished you tell me,” he kept repeating. ‘Squished’ is exactly what it looks like on the MRI according to her neurosurgeon and we had explained that as I drew a picture of her brain as I’ve seen it from her MRI. “Well then, we must try music. We don’t know how, but music is the way to reach her.” I looked at Brian acknowledging that Dr. Jallo had said the same thing when Catherine was just a baby.
He went to get his Ipad, found some classical music, and he started to play the music on her hand. As the music built, he tapped her hand more forcefully. When the music lighted, he tapped her hand more lightly – like a feather stroke against her skin. After a few minutes of this as I was watching wondering what, if anything, would happen, she lifted a finger and uttered “aaahhh.” Dr. Van Dijk’s response? “Wow!” And I captured the moment on video.
“Oh, you want to sing, Catherine?” He proceeded to tell her the story of a deaf girl everyone said couldn’t sing who started to sing. Interspersed in the story, he listened for her to sing more. As time went by, he began repeating her sound, letting her lead. This went on for some time – so long that my skeptical scientist eventually retreated. My “mom” came back out, and I wept. Not the tears that sometimes come when it’s obvious I’m expected to cry. But tears that had been stifled because I’d started to believe we’d never reach her and be able to communicate – tears that had hidden underneath lost hope. I have to confess thinking about it weeks later. My little girl can sing. Take a look – or rather listen – and see if you agree.