I Am in Here (20 page)

We don't know why God has not yet healed Elizabeth completely. We know that our prayers and God's healing power are an interplay between us and God. We are in a relationship that goes both ways. The more persistent we are and the more we work together with God, the more likely healing is to happen. Pastor Bill has encouraged me to remember the parable of the persistent widow:

Then Jesus told them a parable about their need to pray always and not to lose heart. He said, “In a certain city there was a judge who neither feared God nor had respect for people. In that city there was a widow who kept coming to him and saying, ‘Grant me justice against my opponent.' For a while he refused; but later he said to himself, ‘Though I have no fear of God and no respect for anyone, yet because this widow keeps bothering me, I will grant her justice, so that she may not wear me out by
continually coming.'” And the Lord said, “Listen to what the unjust judge says. And will not God grant justice to his chosen ones who cry to him day and night? Will he delay long in helping them? I tell you, he will quickly grant justice to them. And yet, when the Son of Man comes, will he find faith on earth?” (Luke 18:1–8 NRSV)

With persistence and faith, we believe Elizabeth is being healed over time and will ultimately be fully healed. For some reason, her time has not yet come. If she is not completely healed before I die, you can be sure that “Why?” will be the first question I ask God.

What I haven't told you about Pastor Bill is that, with nineteen stents in his big heart, he has seen his share of suffering too. We joke that he's probably in the
Guinness World Records
book under “Most Stents.” Pastor Bill doesn't fill his life with questions like “Why did God start all this stent business with that heart attack in my forties?” Instead he says, “I guess God wanted me to stop running that large Lutheran church and get about his business of quietly healing people.” Pastor Bill is a How Person.

This journey in healing is also about healing my expectations of what Elizabeth should be. It is about acceptance. Elizabeth has taught me that at least right now and maybe forever, autism is part of who she is. Just as Temple Grandin's mother says in the movie
Temple Grandin
, autism makes a mind that is
different but not less
. The following dialogue also helps to put autism in perspective:

What is Elizabeth's prayer for healing?

  
Dear God
  

I need peace

And may my pain decrease.

I am not at ease

Can you help me please?

Make my pain cease

Dear God, I need peace.

I was worried that Elizabeth would think that God didn't love her because our prayers hadn't been answered. But Elizabeth's spirituality goes beyond her years. When we asked her about our visit with Pastor Bill she typed: “
I felt hope and peace
.” She saw the healing we received: the hope and peace to carry on.

The Secret of How

Whale watching in Nova Scotia

  
Can't Give Up
  

Today is a new start

Not a man can stop me

I plan to make a change

To be the person that I should be

To prove that I am smart

It is real tough to be me

I hope that everyone realizes that

I am in here

(age 12)

I know I need to act like I am growing up, to make changes in my actions. I need to be good.

W
hen I hurt myself, it helps.”

There have been many dark moments in our journey, moments I've chosen not to make the focus of this book. Moments when the desperation is so great, it threatens to swallow me whole. Dark nights when fear and helplessness are my only companions. Days when hope feels dead and joy some distant memory.

It's then that I cry out, “Where are you, God? I'm here in the dark and I can't take much more of this.”

“They make me think that I am of no use to myself or anyone. When I hurt myself, it helps.”

Elizabeth's words haunt me in these dark times. To think that she would willingly substitute physical pain for emotional pain brings me to tears. She used to hit herself only once or twice a day, but now, with adolescence, the hitting has become more frequent and more aggressive. A multitude of doctors have not been able to find an answer. One of the many cruelties of autism is that it turns legions of otherwise capable people into helpless observers. We have been given a ringside seat to a torturous display of human suffering.

One recent afternoon, I got the bright idea to put Elizabeth's horseback riding helmet on her during a particularly violent outburst. Elizabeth hit the helmet a couple of times, but she would not be defeated by it. She quickly turned to hitting herself in the mouth, where she could do maximal damage. Because she wears braces on
her teeth, her lips became a swollen, bloody mess before I realized the disaster I had created and grabbed the helmet off her head.

After
she
was back in control and settled down watching her videos again, I sobbed while dabbing her bloody lips. These are the darkest times, the times that stretch me to my breaking point. I have no greater sorrow in life than feeling helpless to relieve my children's suffering. How can we cling to joy in moments like this?

This isn't an idle question, for me or for any of us. In Dante's
Inferno
, above the gates of hell a sign reads, “Abandon all hope.” I cannot think of a more apt description of hell—a place without hope. Yet the burden of autism can push us to live in that very place, even though it's more self-destructive than hitting ourselves in the head. Somehow, autism moms have to find a way to cling to hope with a tenacity that is stronger than autism's grip on our children. But how?

My answer: finding the joy in the smallest of moments. It is a conscious choice—a discipline, really—to seek and find these small flowers of joy in the crannied wall. When we lose our ability to experience joy, we lose our ability to hope. For me, hope is the handmaiden of joy.

To recognize joy is to know that there is a beauty greater than our pain, a goodness more powerful than our suffering. And just as with prayer, small joys lead to greater ones. When we learn to find the small joys sprouting through a barren landscape, we increase our ability to see even greater ones surrounding us on all sides.

But before we can find those joys, as Elizabeth has taught me, we must forgive. With mercy toward ourselves and others, we can release the anger that poisons the soul. Elizabeth recently told us:

Today I am in a strange position in my life. I am forgiving everyone, one by one. I am also forgiving my anger. Anger possesses the self and blinds the mind. . . . I am forgiving my image in the mirror. . . . For the past two months I am making a list to forgive and it includes Mom and Dad too. I wish I never knew I was smart. That way I wouldn't have to realize my autism. I wish I did not have any education at all. I wish I had time to really forgive myself for being so hurtful. It is my speech
.

Is Elizabeth's hurtfulness her speech, or is her lack of speech so hurtful to her? Both, I suspect, are true.

One of my guiding lights on this lifelong path of seeking forgiveness, truth, and joy in life is the late Henri Nouwen. When I am tempted to allow sorrow to rob me and my daughter of our joy, I hear Henri whispering that we always have the choice to live a moment as a cause of resentment or as a cause for joy.

Henri Nouwen, a Dutch-born priest who penned a treasure of books on the spiritual life, knew about these choices. At the height of his career, he left the comforts of the ivory tower to spend the last ten years of his life caring for the basic needs of the most vulnerable members of our society. It was in these years of humble service that Henri found the peace and joy that long eluded him in a life of spectacular professional achievements.

Henri's academic career included professorships at Notre Dame and Yale before he came to teach at Harvard (while I was a student there, ironically, but before I'd had any exposure to his remarkable writing). In the midst of a deep depression, he left Harvard to live at L'Arche Daybreak, a small community
in Toronto, Canada, for individuals with severe physical and mental challenges.

At L'Arche, Henri invested two hours each morning taking care of Adam Arnett, a man who could not speak or care for the most basic of his own needs. Henri lifted Adam out of bed and into his wheelchair, bathed him, brushed his teeth, combed his hair, and helped him raise a spoon to his mouth for his morning meal.

An author friend of Henri's visited him in his simple room one day and asked whether it would not be better for this accomplished man to use his precious time writing rather than in this manual labor. Henri responded that his friend did not understand: “I am not giving up anything. It is I, not Adam, who gets the main benefit from our friendship.”

Henri understood that our most profound spiritual experiences are rarely found on the mountaintop. They are usually inextricably woven into the humblest acts of service for those in need. I must admit that at the end of a long day, I wish that Elizabeth could take her own shower. But while we strive to reach full independence, I will do my best to remember Henri serving Adam with joy and thanksgiving.

This is the nature of mercy, the nature of compassion: we enter into the life of another person in a deep and transformative way. Compassion means literally “to suffer with.” Henri was no longer reading the beatitude “Blessed are the merciful, for they will be shown mercy” (Matt. 5:7). Instead, he was living it. In our simple acts of mercy and kindness, we live connected to each other and to our loving God.

  
Take Time to Pray
  

The power of prayer is soulfully strong

The Bible has told of it all along

Look to God, he will see you through

He wants to take care of you

Trust in him and believe

I need a lot of prayer. My life is hard. God, help me.

When Adam passed away unexpectedly at thirty-four, Henri had been preparing to write a theological discourse on the Apostles' Creed. Instead, he decided to simplify. He would write
Adam: God's Beloved
. In the introduction to
Adam
, Henri tells us that he has been searching his whole contemplative life for the way to live in the name of a loving God. With Adam's passing, Henri internalized the truth that each of us, no matter what our circumstances or station in life, is God's beloved.

For Henri, Adam became “my friend, my teacher, and my guide.”
[1]
Likewise, through her perseverance and her poetry, Elizabeth has also become my teacher. She is teaching me to slow down, to appreciate the beauty in nature, and to be more patient. She is teaching me about love and the power of faith. She is teaching me to have compassion, because each of us is fighting a great battle.