Finding the Tempo

Symphony Concert 11-13 #13

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.

Kathryn - Empty Little Girl

A very lost little Kathryn in her Guatemalan orphanage

When we met Kathryn in 2005, she was so withdrawn from the world that she had been mistakenly diagnosed as also being blind and deaf.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.

Symphony Concert 11-13 #12

Kathryn’s peaceful pose during the Ravel pieces

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.

Symphony Concert 11-13 #10

Kathryn’s exuberant applause at the end of the concert

Sometimes . . .

Wheelchairs Alone

I have always loved the piece, “Welcome to Holland” by Emily Perl Kingsley, who was the mother of a child with Down syndrome. She wrote this in 1987, and it compares the unexpected birth of a child with special needs to the experience of planning a trip to Italy, only to find yourself in Holland instead. But her analogy actually applies to many situations in life in which we discover that our planned path has been altered, taking us to a place we didn’t expect. It’s beautiful and usually makes me smile, and if you’ve never read it, you should. A copy of it can be found at http://www.our-kids.org/Archives/Holland.html. One day, though, during a particularly difficult period with some of our special-needs children, I began jotting down the following thoughts. At first, I was only able to write the first two paragraphs. It wasn’t until later that God brought me the peace I needed to finish it. In fact, my original title for these thoughts was, “Sometimes Holland Just Stinks!” Yeah…. decidedly negative. Thankfully, God rarely allows me to wallow in such a dark place for long. 

Sometimes…

As a parent who has experienced traveling to Holland unexpectedly through the birth of a biological child with special needs and who also voluntarily boarded the plane bound for Holland by choosing to adopt children with special needs, I can say that even when you are in Holland by choice, there are some days when you still just wish you had been able go to Italy like everyone else.

Sometimes being in Holland just makes you too tired and too sad to lift your head and see the windmills and the tulips. Sometimes you just want to relax and eat pasta and lose yourself in the laughter and noise of a raucous gathering of happy Italian people — stop feeling or thinking and just get lost for awhile. Sometimes you just want to escape.

Then you remember Who brought you to Holland. You know that even in the times when you thought you were making the choice to fly to Holland, you were being led there by the One who holds the perfect travel plan for each of His children — the One who makes beautiful things out of ashes. And you realize that you aren’t alone. He is with you. He has always been with you and always will be. You lay your head on His shoulder and cry for awhile, knowing that, after a little rest, you will be able to see those tulips again and fully embrace the beauty of Holland. You know deep in your being that you could never be happy in Italy or anywhere else but Holland. And you are even able to smile a bit through your tears.

…to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the Lord
for the display of His splendor.” ~ Isaiah 61:3

Just a Pair of Shoes

Blew the dust off of this one, written five or six years ago. Still surprisingly relevant (or maybe not so surprisingly.)

This is what Kathryn looked like around the time this was written. Just too cute for words, if I do say so myself.

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JUST A PAIR OF SHOES

“But He said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” 2 
Corinthians 12:9

It was just one of those days, and the shoes were the final straw for me. It was Sunday. We were moving through the typical Sunday rush of trying to get eighteen people out the door to church with clothes that matched and also fit the bodies wearing them, no signs of breakfast on faces, and diaper and catheter bags all properly packed. I was, as usual for Sunday mornings, closed up in my room doing hair on each girl, one at a time. While moving through the routine of plugging in curling irons, digging through the hairbow box, and blow-drying my own hair, I had been pondering some topics from a recent discussion with Scott involving some language issues with Madlin that we felt might be related to her learning disabilities. Mainly these topics centered around whether or not more testing would help us know how to better help her. Sigh…. More testing? We’ve been down this road enough times to know that often this is just a waste of time and money. But not always, and therein lay the dilemma.

While I was thinking through these things again, our twenty-five-year-old developmentally disabled daughter, Erin, came in so that I could help her fix her hair. While I was working on that, she started to talk through tears about her time at the theater the night before. Our older sons occasionally take her out to a movie and sometimes dinner since she doesn’t get to do these kinds of things very often. They had all gone to see the Indiana Jones movie the night before, and while she had been waiting for the boys to buy tickets, she had noticed an older girl with two younger ones, also waiting to buy tickets. She overheard this girl tell someone that she was twenty-five and that she was taking her younger sisters to see a movie that night. Erin said to me, “I kept thinking that if I didn’t have this disability, would I maybe be taking my sisters to movies, too? I wish I could do that.” Oh, man. There it was. That old familiar knife-in-the-stomach pain that I have mostly learned to live with. I was running late and felt completely unable to come up with the words of comfort and wisdom that I knew I needed to come up with. I muttered something about knowing that God didn’t make mistakes and that, as bad as it hurts sometimes, we have to trust Him to decide the paths of our lives. Although I believe the truth of these words with all my heart, on this particular morning they mostly sounded to me like, “Blah blah blah. Blah blah blah blah.” I wondered if they also sounded like that to Erin. I shoved away the feelings of sadness and guilt and moved onto the next girl in the rapidly growing line outside my bedroom door.

One by one I managed to complete a fairly decent “do” for each girl. Four-year-old Kathryn, who was born with a severe form of a rare brain disorder called schizencephaly, was very “on” that day and so excited because she was planning to walk into church again with the aid of her new Crocodile walker that her PT had been training her to use. The previous Sunday had been the first time she had ever done this all the way from the front door to the two “Rosenow rows” in the sanctuary, and then all the way back to the van after church. She was especially excited because I had just gotten her a new pair of Sunday shoes to wear instead of her tennis shoes. Finding shoes that will fit over AFO braces is no easy challenge. We’ve gotten pretty good at locating tennis shoes that will work, and a company called Hatchbacks makes a black dress shoe for girls. But Kathryn loves her sisters’ white church shoes. Well, I found a darling little shoe made by Robeez in their new line called Tredz that fit over her braces. They weren’t cheap, but we ordered her a pair, and they had arrived just that week. Beautiful white slippers with little pink flowers on them – very “Kathryn.” She was so thrilled that she went into her little CP grin and got stuck there for quite a while when she saw them for the first time. I thought her face would freeze like that. She isn’t very verbal yet, but she had made it clear that she couldn’t wait for Sunday.

After all of the girls were adequately coiffed, I made my way downstairs where I started helping get braces on and complete the final round of tooth-brushing, potty runs, and catheterizations while Scott got both vehicles ready to be loaded. As I was working on Kathryn’s braces, Caelyn, who has spina bifida, headed to the bathroom to catheterize herself, but her crutch hit the lid to a plastic toy bin that someone had left out. She went sprawling onto the floor, face hitting first. I was sure that she must’ve bloodied her nose or mouth, but she got up and stoically brushed aside a tear or two and assured me that she was fine as she continued to make her way to the bathroom. Aw, the knife again.

Colin, who is blind, walked into the basement door that someone had left open and hit his head as he was trying to find an empty bathroom. Ouch, I felt it again.

Once Caelyn got into the bathroom, she couldn’t get her Mitrofanoff to drain with a catheter. Okay – uncork your SP drain and empty your bladder that way until your surgery (AGAIN!) next week to see what’s going on. More knife in the stomach, and this time it felt like someone was twisting it.

I told myself, “Shake it off. We’re late and we have to get the vans loaded.” Braces were in place on Kathryn’s legs, and it was time for the big moment. It was time to put those new shoes on my little princess. She trembled and giggled with excitement as she studied my face and waited.

…But, no… They wouldn’t go on. They fit on the braces without her sweet, fat little feet in them, but they didn’t work with brace, shoe, and foot. My mind began to race, and the adrenaline began pumping – this is NOT happening. This stupid shoe IS going on that precious foot. I don’t care what I have to do to make it happen. I WILL get these on her. I was determined as I saw the understanding begin to dawn in those big brown eyes of Kathryn’s. I didn’t want to see the disappointment that I knew would peep through eventually. Then suddenly, there it was. She wasn’t able to express it, but she knew that Mommy couldn’t make her new shoes go on.

I’m ashamed to admit it, but this was just too much for me. I slumped to the family room floor and just let the knife go in as far as it would go. I just stared at the floor and wallowed in the pain and let the tears start to fall while Kathryn stared at me. Why did this seem so impossibly hard to accept? Why did I feel like I would never get up from that floor again – like all I wanted to do was draw all of my “broken” little ones to my heart and rock them and sing to them and put Band-Aids on all of their hurts and tell them that in a few days the hurts would all be gone. I don’t know why, but that is what I wanted. Suddenly, it was all just too big and too hard.

I did manage, with Scott’s help, to get Kathryn’s old tennis shoes on her, and with her hair in a little bun and ringlets at her neck and temples, and with her lacy pink dress, she still looked beautiful -
like the miracle child she is. We went to church, and she walked in wearing her tennis shoes. But it hurt. It hurt a lot, and the pain stayed close to me all day.

I believe that other parents of special needs children must also have days like this. This is quite a journey we have embarked on, and not one to take lightly. And some days we just have to cry and remind ourselves that we aren’t strong enough to see this through. That we aren’t wise enough to guide our children through the tumultuous and painful paths that their lives will follow. On those days, we have to let God lift our chins so that we can look into His eyes and confess that we don’t understand. And we have to rest on His chest, knowing that He cries with us and has promised never to leave us to do this without Him.

It was just one of those days, and at the end of it, I had to go to sleep and pray for a brighter day tomorrow. I had to choose to focus on that incredibly deep dimple in Kathryn’s left cheek, and Colin’s amazing memory and beautiful singing voice, Caelyn’s twinkle that survives surgery after surgery, Madlin’s desire to overcome her challenges, Erin’s gentle servant’s heart – and Scott, the soul mate that God has chosen for me to travel alongside on this road of life. When I awake each morning, my children’s (and my own) brokenness will still be there, staring me in the face. But God will also be there, faithfully guiding me – and when I can’t stand on my feet, carrying me. This is a blessed life, and we will all arrive Home someday with the scars to prove it.

I Have Given In

After a little pressure from friends and a few family members, I have decided to give this blogging thing a shot. I don’t have a lot of time for writing, though, so I will start by dragging up some already-written things from my past — things that I have been assured would be considered blog posts if I just posted them on a blog site. It’s just that simple — “they” say. We’ll see. Some of these have been posted in other places or printed in little newsletters here and there, so the few of you out there who may actually check out this blog have probably already read most or all of these. But, who knows, maybe I’ll manage to write some new things here and there now that I’ve finally started this. Feel free to share and comment – and welcome to our crazy world.