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Lessons from Katherine

Glenda Prins

After the heartache of infertility, Glenda Prins was awed to welcome her adopted baby daughter into the family. But it was the subsequent diagnosis of cerebral palsy which really stretched her faith - and taught her more than she could have imagined.

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It was an idyllic scene: a carefully decorated nursery with bright walls, a rocker and crib, and in the centre, our beautiful eight-month-old baby daughter.

As I watched her playing contentedly with her toys that morning in 1978, I reflected that life would probably not always be so perfect. 'Oh, Katherine,' I pondered. 'What is going to be difficult in your life?'

I didn't have to wait long for an answer. Just a month later, a friend observed that Katherine should be crawling, instead of contentedly sitting in one place. We went back to our own doctor and then to specialists in orthopaedics and neurology and finally to a diagnosis we never saw coming: Katherine had cerebral palsy.

My life changed in that moment in ways I could never have predicted. Here are a few of the lessons I learned from my life with Katherine.

BEYOND CONTROL

I should have understood that life is not within my control. After all, Katherine had come into our life not in the usual, biological way, but through adoption. In the years before she joined us, we struggled with infertility, watching longingly as our friends became parents to first, then second, and even third children - seemingly without much effort.

In order to adopt Katherine we convinced a social worker that we were normal people, coughed up the adoption fees, outfitted a nursery - and were rewarded with the gift of our child. No longer outsiders, we felt we had managed to make our lives work after all.

But when we learned that Katherine had cerebral palsy, all our competencies went out the window. Nobody plans for their child to be handicapped. For all our careful protection and devotion, we couldn't undo this: she was disabled. I blamed myself anyway. Actually, I would have preferred that I had done something to cause her difficulties; then by some magic, I might be able to undo it!

But we live in a mortal, broken world, and there are things that are way beyond our control.

PROTECT YOUR HOPE

Never let anyone take your hope away. Once the diagnosis of cerebral palsy was made, some professionals wanted to be sure that we were 'realistic' about our expectations. One doctor told us not to complete the adoption. A social worker, noticing I was happily humming, was concerned that I might not understand how serious the situation was. Their mission was to make sure that I did not live with false hope. I always wanted to ask them (sarcastically): 'Are you saying my baby will never walk, or are you saying I will never be happy again?'

One thing they hadn't counted on was Katherine herself.  She had a zest for life and crazy giggle that were downright contagious.  Her heart was open and warm and her conniving sense of humour could not be dimmed.  Even though she could not clearly speak, she had ways of getting what she wanted and making her wishes known.  Simply to be in Katherine's presence brought joy into my heart, even as I mourned the losses that came with her diagnosis.

I refused to accept the professional premise of an absolute reality that was devoid of promise. Sometimes my 'hope' was delusional thinking, imagining Katherine dancing down the church aisle or getting dressed for the prom. Still, on some days those fantasies helped get me through.

But my hope was deeper than that: refusing to let go of my hope came from a place where I knew that it all mattered. We mattered. Katherine's life mattered. Yes, it was hard, very hard. But caring for her well made a difference. Some days were so difficult, all I had left was hope. I resolved that nobody would get to steal it from me:

'Knowing that suffering produces endurance and endurance produces character and character produces hope, and hope does not disappoint us, because God's love has been poured into our hearts through the Holy Spirit that has been given to us. (Romans 5:3-5)

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ASK FOR HELP

I never like asking for help. I prefer to rely on my own self-sufficiency. And raising children, disabled or otherwise, does require a lot of independent thought and action. But I've learned that asking for help can open up an unexpected avenue for joy.

For example, one lovely late spring Saturday afternoon, my husband Tom was out of town on business. I had completed my weekly housekeeping and mustered up the gumption to take Katherine, then 14 years old, and her little four-year-old brother Mark to a local canal festival.

There were food vendors, dried corn for feeding the ducks, and short rides on a canal boat or horse-drawn carriage. The carriage rides seemed inaccessible for Katherine's wheelchair, but the boat had an access ramp, so we started there and found seats near the front of the vessel.

It was a glorious day. I relaxed into the moment: sun shining and happy children. Mark noticed the little on-board snack bar, and I sent him to the back of the ship with a few dollars. When he returned successfully with a cola and a packet of chips, he was proud of his achievement and I was proud to be raising a competent child. As we disembarked, I thought: can life get any better?

Then Mark noticed the horse-drawn carriage. Could we have a ride? I told him no, but he kept asking, so I explained that there was no way I could get Katherine up into the wagon.

And that was when the wisest four-year-old on the planet said: 'We could ask for help.'

He had me there. In spite of my own misgivings, we walked over to where the carriage was loading and I asked for help. Before I could apologize for demonstrating my need, six strong hands appeared, lifting Katherine, wheelchair and all, into the horse-drawn wagon.

I wish I had a picture of my children's faces at that moment. Katherine was gleeful to be doing something fun and exciting. Mark's face glowed with the knowledge that he had set this wonderful adventure in motion.

I also wish I could show the faces of the other passengers. As the horses clip-clopped along the road, a feeling of joy pervaded that wagon full of strangers, drawn together by the great pleasure of offering kindness to two children and their weary mother.

It turned out that asking for help wasn't an imposition after all. It was an opportunity.

PRAY ALWAYS

When we first brought Katherine home from the adoption agency, we were awed that anyone would entrust this wondrous being to us. Whether I was watching her quiet breath as she slept or receiving her joyfully when she woke, her crib soon because the holiest of sanctuaries for me. I found God in the great goodness that showered my life through this tiny infant.

When we learned she had cerebral palsy and that she would probably be seriously disabled, I began to beg and rail at God in a way that was new to me. I had grown up around faithful Christians, but prayer was treated in a somewhat formal, even distant manner. I had not believed in a magical, wish-fulfilling kind of God, but suddenly I wanted healing for my daughter and I wanted it yesterday. My prayer became the anguished cry of my heart.

Over the years, as life calmed down, we prayed with Katherine. Bedtime prayers became an important part of our daily routine. We taught her that even if Mommy and Daddy couldn't understand her, God knew what was in her heart; God understood her requests.

And she understood prayer. When a fire broke out at the inn where we were staying, she insisted that prayers be offered. When a family member struggled with alcoholism, her prayers went up for his well-being. When she moved into a group home with other young adults, she prayed for her caregivers.

And then in her early thirties, Katherine became so ill, she would never recover. With doctors and social workers and family members, we made the difficult decision to withdraw treatment, knowing that she would die within minutes of removing her from a ventilator.

A few family members gathered as I held her in my arms. I brought along a small book of prayers and handed it to my brother. 'Read these prayers,' I demanded. Quietly he complied.

The words were familiar to me, but in Katherine's dying presence they were healing balm. Words that I had read over and over throughout my life took me deep into that place where God is near and everything is love.

Almighty God, by your gentle power you raised Jesus Christ from death.
Watch over this child of yours, our daughter, Katherine.
Fill her eyes with light that she may see, beyond human sight, 
a home within your love,
where pain is gone and physical frailty becomes glory.
Banish fear. Brush away tears.
Let death be gentle as nightfall, promising a new day
when sighs of grief turn to songs of joy,
and we are joined again
In the presence of Jesus Christ in our heavenly reunion. Amen. 1

Lessons from Katherine is published by Circle Books.

1  Book of Worship, United Church of Christ.  New York, New York.  United Church of Christ Office for Church Life and Leadership.  1986.