Archive for June, 2018

More than a Paintbrush

Chloe proudly showing the paintbrush that she was given. The leaders let her keep it. And she is in love with it.

“How was your day?” a mom asks when her child climbs in the car after school.

“What did y’all do today?” Dad asks when he picks up his son from Sunday School.

“How was it?” a parent asks after practice or rehearsal.

These are the questions, answers, and conversations that many parents take for granted. They may grumble if their young son doesn’t give them the details they want to hear. But these are daily conversations between parent and child.

Unless your child is nonverbal. Many children have communication disorders that prevent this familiar conversation from happening. These families rely on teachers, siblings, aides, and friends to fill in the details and help with the conversation.

Chloe, my 16-year-old daughter, is mostly nonverbal. She uses some sign language, some verbalizations and gestures, and a communication device to communicate. But communication in general is very tricky and difficult for her. And questions like those above are met with a shrug. She’s never volunteered information from her day or from cheer practice or from church. The conversation and concept make for a complicated communication exchange. She’s learned to just shrug and shake her head. Hearing and understanding the question, thinking back over her school day and choosing something to talk about, forming those words, and then communicating it effectively… it’s a conversation tool she hasn’t mastered.

It might seem strange for a parent of a teenager to never know any details — even a general description— of ANY experience that teen has away from you. Thankfully there are willing people to at least answer general questions on her behalf.

But Chloe has never in her life told me about something she did while we were apart. Literally never. You just get used to it. Yes, you miss it. Sometimes you long for it. But it’s just part of it. It’s just your life.

Thats why it was a big deal this past week when Chloe used her communication device to say 2 words to me when I picked her up.

We were at family camp. After breakfast, the parents enjoyed a time of worship and teaching from 9 to noon while the youth had Bible story, music time, and art.

One day when we were reunited with Chloe after morning sessions, I heard her repeating something over and over on her communication device.

“Soft paintbrush… soft paintbrush… soft paintbrush…”

I acknowledged her words like I always do. I instinctively asked the helper who was with her for the week about the paintbrush, and she told me that, yes, the paintbrush was really soft… it was blue… it was really cool. And she said Chloe had enjoyed gently brushing her cheeks and lips with it.

It wasn’t until an hour or so later that I realized what had happened. This was a monumental moment! A moment to be remembered and celebrated! For the first time in her entire life, Chloe had told me about something she had experienced while she was away from me. She reported back to me. Something happened that had impacted her enough that she wanted to share it and talk about it. And she found the words and means to say it.

Mic drop. Unbelievable. Chills and tears.

What an amazing experience with my girl!

 

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The Song

As our departure date for family camp in Alabama drew near, we received weekly update emails from Hope Heals Camp detailing more information about what to expect.

Two or three weeks before camp, the email mentioned a talent show. I immediately knew Chloe would be interested in playing a song for the talent show.

Chloe and I have nearly daily “instrument parties” in her bedroom. Usually she plays cello, her main instrument, while I play ukulele. However, we sometimes switch it up and one of us plays keyboard, or she plays accordion or recorder or harmonica. She would literally play instruments 24/7 if she had her way.

It was highly impractical to take her cello to family camp: The camp was a 12 hour drive away from our home in Ft. Worth, Texas; the cello is quite expensive and fragile and our car would be quite packed with the necessities of camp; and we couldn’t leave the cello in the heat of the car when we stopped at restaurants or other stops.  For those reasons, Chloe decided she would instead play keyboard at the talent show (even though she would’ve much rather played cello).

She and I have a book of 365 songs for ukulele. The book has a great selection of a wide variety of songs. Chloe can read music but prefers to play by ear … and does so very well. I, on the other hand, cannot at all play by ear so I’m very dependent on the book for the songs that we play each day. I told her she could choose any song from the book for us to play at the talent show. Out of 365 songs, she decided we would play Edelweiss.  While I love Edelweiss and think it sounds beautiful when she plays it on her cello, I tried to talk her out of it.

“No one knows that song anymore.” I tried.

“Maybe we should play something upbeat instead…” I suggested.

But she wouldn’t be swayed. Edelweiss it would be.

Fast forward to the first night of Hope Heals Camp. All the campers, volunteers, and staff mingled around the camp fire singing camp songs. At the end of the night, Jay stood up and announced it was time for our Goodnight Song. He explained that it was tradition for everyone at camp to sing the Goodnight Song everynight before bed. It was a special song to Katherine and had become special to Hope Heals Camp. And then he led us in the Goodnight Song… to the tune of no other than… Edelweiss.

It was my first chill bumps and tears of the week. As Jay described it, it was a special God Wink that Chloe had chosen to play Edelweiss later that week.

I’m so glad Chloe didn’t listen to me as I tried to convince her to play a different song. She knows what’s up.

(Additional behind-the-scenes story: On the night of the talent show, I left the book of songs in our cabin and didn’t realize it until we were situated on stage ready to play. Total Mom fail! I leaned over to Chloe and explained that she was going to have to play without me because I didn’t have the book. I tried my darndest to play it by ear/ memory, but that’s completely out of my skill set. Our performance did NOT go as planned. Chloe did fine, but she was so shy and hesitant to play her song while I was destroying it on my end. Truly no one at Camp was the wiser because Chloe just reveled in the applause of all of her fans at the end. I apologized profusely for messing up her performance; she’s forgiven me completely.)

#HopeHealsCamp

#HopeHeals

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