An incredible thing happened at the symphony last night. As Scott and I sat in fabulous Music Hall in downtown Cincinnati, surrounded by most of our twenty children, nine-year-old Kathryn did her best to get her cerebral palsy-encumbered body comfortable in the soft folding theater-style seat and take in all of the stimuli bombarding her there. During the pieces by Maurice Ravel, she mostly seemed to settle into a kind of peaceful boredom. But during the first George Gershwin number, something changed.
Kathryn was born in Guatemala in May 2004 with severe brain damage. Much of the right frontal lobe of her brain never formed, and she has a rare brain deformity called Schizencephaly, characterized by clefts throughout her brain. These clefts interrupt the critical pathways that make our brains function normally. Her intellectual abilities are severely impaired; she experiences seizures; she has never achieved complete toliet training; and she requires much help with bathing, dressing, eating, transfers to and from her wheelchair, and all other daily tasks.
Initially, we were urged not to pursue Kathryn’s adoption and told that she would probably never interact with us or even know who we were—that she would spend her life as what is often described as a “vegetable.” We only knew that God had brought her into our lives and called us to go and bring her home; and that she was our daughter.
When we met Kathryn in 2005, she was so withdrawn from the world that she had been mistakenly diagnosed as also being blind and deaf. She rarely showed any reaction to the world around her, simply staring into space, locked away where no one could reach her. And then her daddy brought music into her life.
The first day we met her, Scott began singing to her, and within days, she was making eye contact and smiling at us. Music drew her out of the dark places where she was trapped, and she has loved music ever since. She starts each day asking us to play her favorites, and she ends each day falling asleep to music in her bedside CD player. And she proved everyone wrong. She does interact with us and love us and state her opinions and make choices and understand simple jokes and exhibit imagination.
But in spite of all her unexpected accomplishments and her great love of music, she has never shown any ability to recognize notes or tempos in the songs she tries to warble along with or “dance” to in her wheelchair. And then, last night….
As the orchestra moved into Gershwin’s “Rhapsody in Blue,” she grasped my hand tightly and began to very rhythmically beat out the tempo against her own leg. At first, I thought it was just a coincidence that she was moving our arms together to the beat of the music, but she just kept going—keeping near-perfect rhythm, even changing her speed and intensity with the ebb and flow of the music. I held my breath, afraid of breaking the magic. I wanted to just sit there all night, watching one more lock click open in my sweet baby’s broken little brain. It happened over and over again throughout the concert—the stillness of her body during the Ravel pieces, and then the immediate connection and hand-tapping during the Gershwin numbers.
Could we have lived a full enough life without such moments as these? Probably. We already had a beautiful and happy family. Would our days be easier if we weren’t caring for this almost ninety-pound, practically helpless child? Absolutely. And we could reason that neither we nor Kathryn would ever have known what we were missing if we had left her where she was. Most people could argue that as sweet as such moments are, it’s not like Kathryn is really making any real contribution to the world.
But I think they would be wrong. I think that none of us really knows how much we may be affected by Kathryn’s determination as she struggles every day to figure out her own personal tempo in life; or by her moments of brilliancy; or by her ability to live out her name, Kathryn Felicity, which means “pure joy,” as happiness oozes from her very pores and euphoric joy sometimes bursts from her, lighting up her eyes or filling the air with hysterical giggles or sounds barely recognizable as singing.
I know for a fact that I am not who I would’ve been had Kathryn never come into our lives. She has made me a better person, helped me find my own slower, more deliberate tempo than the one I would be experiencing without the indelible imprint she has left on my heart.
And who knows? Maybe her little rays of influence break through barriers, penetrating the hearts and lives of others who just happen to momentarily cross her path during times like last night.
Just maybe, angels dwell among us for brief periods in the form of people like Kathryn, strumming the cords of our minds and souls, bringing more sense than we can imagine to the rhythm of our own lives. Just maybe.
Oh dear one, I assure you, Kathryn’s life has had an amazing impact on others. 🙂 I tell her story every chance I get and am crying tears of joy at what God has done in her life – and yours – as evidenced by this story.
Love and prayers
Yes, yes. Tears, because I have seen so much of this in my relationship with Katya . . . watching her come out of the darkness and the shut-down world she lived in and finding joy and expression in music even though she can not speak.
WOW!! Kathy am so Blessed for you Love Beyond Belief and immense pleasure coming i Believe from God
That was beautiful . I can’t stop crying .
We have a Christmas program at our Church called Awaited . The atrium is beatifully decorated and there is free coffee hot chocolate and cookies . I think you and your family would enjoy it . Tickets are free . December 13-23 . Crossroads.net/awaited
Thank you, Vicky. We will take a look at our family Christmas-events schedule and see how that might work. We have to pace these things, as you can imagine, and I know that we already have an out-of-town event that we will be attending that week, plus we will be heading out as a group to cut our Christmas tree during that week as well. But thank you for the information. Maybe we’ll see you there.
This is surely a very encouraging post, Kathy. Thank you for having inner eyes and inner ears to see and hear what God is doing all around you and your darling girl. I wish those doctors could see what care, prayer, and love … and siblings! … can do for someone trapped in the mind. Wonderful !!
I love you, Patty Morwood!
Hello Kathy, I am one of the violinists with the Cincinnati Symphony. That is a wonderful story and I’m thrilled that we and Mr. Gershwin were able to do that for Kathryn. Please bring back Kathryn again anytime and I will take care of tickets for you…
Scott, you are very kind, and we are deeply touched by your offer. Thank you so much for taking time to jot this note. It really was such a precious evening for all of us, and we are so grateful to have been there. Have a very blessed Christmas season, and thank you, and the whole Cincinnati Symphony Orchestra and the Segoe Fund for kicking ours off so beautifully.
This is a wonderful recounting of the potential in all of us. So much is happening in the background and then suddenly a new capacity emerges. I work with child and adults with challenges. Depending in where you live, I would enjoy offering some free sessions for Kathryn. It doesn’t sound like getting out for another appointment would be doable. My work as a Feldenkrais practitioner is gentle, enjoyable and taps into the potential to improve daily living. My email is CynthiaAllen@futurelifenow.com. Feel free to contact me if this offer is of interest.This will definitely cause us to pause and reconsider whether the city can be a trusted partner, putting many of our planned future investments in jeopardy (including the Carousel, the shared-use kitchen at Findlay Market, the renovation of the Globe Building and Music Hall).”
You can light the world by starting with one candle, you and your beautiful daughter have given us a good start. Thank you and God Bless you.
Thank you for sharing your beautiful story.
Scott and Kathy,
What a wonderful story. Another Christmas miracle.
Blessings to you and your family.
Mick and Betty
Hello Mick and Betty. It seems like forever since we’ve seen you. You wouldn’t even recognize the kids now. Merry Christmas to the two of you and your whole family.
So beautiful! Thanks for sharing this. My sister in Cincinnati shared it with me because it reminded her of what I’ve shared with her about getting the care our “temporary” foster child needs for all the time we’ve had him. I’d love to share more of our experiences with you in private e-mail if you can get in touch with me somehow. You are an inspiration to me. Twenty years ago last February we signed up to be “respite foster parents” for special-needs kids. Little did we know that the first child to be “temporarily” placed with us the following August would stay with us forever, and that he would still even be alive now. God has filled our hearts every day with love for this now young man who was not expected to live to see his second birthday. He too had given up on life by the time he came to us at age 5 1/2 months (it turns out he was born just 4 days before we received our fostering license). He was deemed blind and deaf with severe permanent brain damage (CP being only one of the diagnoses), but during the first week we had him I took him with me to practice organ for a wedding I had previously promised to play for, and the only way I could get him to stop crying (other than holding him) was to begin playing “Jesu, Joy of Man’s Desiring” on a solo flute stop, at which time he’d look directly at the pipes and listen quietly. He has loved being in church ever since, as well as listening to classical music. He had such a look of wonder on his face the first time we took him to a Canadian Brass concert (he was not quite 1 year old).
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