by Lisa Lenhoff, Our Autism Pilgrimage
Sometimes, on the good days, I watch my daughters playing in the yard. Three beautiful girls. Three of my dearest earthly treasures.
I see my oldest daughter. I see her eight-year-old legs, running, barefoot and carefree through the summer grass.
I see her soft golden hair glowing in the afternoon light. Her blue eyes twinkling. I watch her fly high on the swing under the Weeping Willow tree; her favorite place. I hear her giggle.
I watch her laugh and flap and squeal. She asks me for a million kisses on her sweet angel cheeks. And I give them.
How I love her and her sisters so. They are so beautiful. They are such gifts.
But sometimes during the long dark nights, I wake.
And I remember Autism, that dark cloud that settled over our lives years ago.
And I think about how this is forever, at least on this Earth. How this is the rest of my life. And I wonder, how can I do this for the rest of my life?
How can I do the meltdowns, and the aggression and the stimming forever? How will I survive the stares of strangers and the isolation and the sleepless nights that Autism brings?
How will I spend the rest of my life teaching and reteaching skills that have been mastered only to be forgotten over and over again? How can I live through a grief that never seems to end?
How can I do this thing called Autism for the rest of my life? How will I do this when I’m 60? How will I do this when I’m 90?
We work. Everyday.
Sometimes relearning the same things that were already mastered. We practice focusing. We practice being calm. We work on understanding and speaking language. Privileges are lost for aggressive or destructive behavior.
And we make progress. Huge progress. She has come so far! I’m so proud of her. People tell us how far she has come. And we see it ourselves.
But always, the progress is lost. It may be a month. It may be a year. But there is always a regression. So much so that sometimes it’s hard not to live in fear of the next regression. When will it come? What will be lost?
——-
There was a widow once who lived alone with her only son in the days of terrible drought and famine. One day she went outside to gather sticks and the Prophet of God was there.
He said to her, “Make me a cake.”
But she had nothing left. She had only a bit of flour and oil. Her jars had run dry.
Still, he said to her, “Do not fear. Make me a cake.”
And she did. She made the cake.
And her oil did not run out. Her flour bin did not run dry. The Lord filled them.
And she and her son ate from that jar and that bin until the day the famine ended.
——-
I love my daughter. I love her with all the fibers of my being! And I couldn’t imagine my life without her. I would give my last breath for her.
But loving someone doesn’t make the pain go away. It doesn’t make the difficulty go away. It doesn’t take away the sorrow.
Even Jesus, as He wept in the garden asked for another way. He loved us. And yet even in His perfection He asked for another way.
But there was no other way. So He bore the pain and the sorrow because of His love for us. He walked the road.
He gave all.
Loving someone does not make the trials go away. Love means that you may ask for another way. But if there is no other way, you will walk the road.
You give all.
Love means that you will push through fire, and water, and mud for them. It means that you will fight for them and never give up.
It means that you will give your last breath for them. It means that after you have fought a thousand battles for them, you will get up, wipe the dirt off and fight the next battle. It means that you will sit with them in the dark, even when no one else will.
It means that you will make them a cake, even when you have nothing left.
“Do not fear, but make Me a cake.”
“But Lord, I have nothing left. I’m so tired. Autism has taken everything. My jar has run dry. My bin is empty.”
So often I fail. I want to be the perfect mother. I want to be patient. I want to be long-suffering.
I want to sit with her in the dark and not be annoyed or overwhelmed by the constant noise, behaviors and stimming.
I want to be able to converse with her for the 113th time that day about the same thing without becoming impatient.
I want to hold her hand in a room full of strangers and not be angry or embarrassed that people stare at her.
I want to have the strength to sit through yet another meltdown in the night without being annoyed at the lack of sleep Autism brings.
And often I do. But sometimes I don’t.
I love her. But loving someone does not make us perfect people.
There have been times I have raised my voice. And I have been impatient. And I have left the room because I didn’t feel I could handle Autism another minute.
Autism is just too hard. It’s too hard for her. It’s too hard for me.
My jar is empty. My oil has run out. I have nothing left to give.
But what is Love?
Love is getting back up. It’s trying again. It’s saying “I’m sorry.” And “Please forgive me,” even when she doesn’t understand my words.
Love is sitting with her in the dark when no one else will.
Love is listening to the same story 113 times even when no one else will. Love is walking beside her as she flaps and squeals amidst the stares of strangers. Love is helping her in the bathroom for the ten-thousandth time, knowing I may do it for the rest of my life.
Love is a million kisses on sweet angel cheeks.
Love is knowing that Jesus can work in spite of my imperfections as a mother. Love is knowing that Jesus can use me even when I fail and when I have nothing left to give.
Love is knowing that I can’t do this forever without Jesus by my side. But He will be there. Love is remembering that “Whatever we have done for the least of these, we have done for Him.”
So I will get up again. I will dust myself off. I will sit with her in the dark another night. I will walk beside her. I will kiss her sweet angel cheeks and help her in the bathroom and listen to her stories 113 times a day. We will practice being calm and listening, another day.
I will make the cake.
For her.
For You.
And I will give my life for her, every single day. Because I love her. And because when I give to her, I am giving to You.
And Jesus, You are Everything.
And when I’m tired, and when I fail, I will cry out to You. When the days are long, and the nights longer, I will cry out to You. When Autism has beaten us, and left us breathless and bleeding in the dirt, I will cry out to You.
Oh Jesus, we cannot do this without You.
Walk beside us. Hold our hands. Help us. Fill my empty jar. Pour in the oil and the flour.
Because only in You, Jesus, will my jars be filled.
“So she went away and did according to the word of Elijah’ and she and he and her household ate for many days. The bin of flour was not used up, nor did the jar of oil run dry, according to the word of the Lord which He spoke by Elijah.” 1 Kings 17:15,16
*Repetitive body movements or repetitive movement of objects is referred to as self-stimulatory behavior, abbreviated to stimming. Stimming can occur in people with autism and other developmental disabilities.
Lisa is the homeschool mother of 3 beautiful little girls, the oldest of whom has moderate/severe Autism. She resides in the Pacific Northwest with her husband and daughters. You can follow her blog at Our Autism Pilgrimage or connect with her on Facebook.