Tonight I sat on your bed with you, My little Sunshine Girl.
I twirled your golden hair in the soft glow of the nightlight. I held your soft, still dimpled, 7 year old little hand in mine. I looked into your clear, blue, laughing eyes.
Do you know you have the sweetest blue eyes?
You ”talked” about so many things. Words. Partial phrases. Repetitive half sentences that often didn’t make sense. You’ve made so much progress in your language. But even after all these years, and all the therapy we’ve done, most language still doesn’t make sense to you. It never has.
You see, you have Autism.
And not the high functioning kind.
Not the kind where you can grow up to be a surgeon called Dr. Murphy.
Your kind of Autism is the kind that makes you flap, and spin, and sometimes rock. It’s the kind of Autism that makes you run into the street because you don’t understand what danger is.
It’s the kind of Autism that makes you obsess about brownies and color nothing but purple balloons on 27 pieces of paper. Yours is the kind that makes you want to smell tea bags all day and swing for hours under the weeping willow tree with your head cocked to one side.
Your kind of Autism is not the kind they like to make TV shows about.
It’s the kind of Autism that no one wants to talk about.
It’s the kind of Autism that is hidden away in therapy centers, special needs classrooms, and in some cases, institutionalized state care homes.
Your kind of Autism has made the world a difficult and confusing place for you.
Even at night, Autism doesn’t let you rest. Sleepless nights. Hard days. This is your kind of Autism.
As we sat there on your soft lavender bed, you said, “When I grow up…” And you stopped.
You never stop. You never wait for an answer.
But this time you stopped. You looked right in my eyes and waited as though you were expecting an answer.
You have said this exact phrase to me so many times. But I have never given you an answer. In fact, I have never even allowed myself to think about the answer. Because the answer scares me.
It’s like a dagger in my heart.
It’s something I would have never chosen in my wildest dreams.
It’s funny you would ask me about growing up. I don’t even think you know what growing up is. I don’t think you even know that you will grow up. Or that your sisters will grow up.
I sat for a moment, and I thought. I thought about what your life will be like when you grow up.
I thought about how you will never marry. I thought about how you will never go to college. How you will never hold a job, or have children, or drive a car. You won’t even have an 8th grade graduation. Who doesn’t at least get an 8th grade graduation?
I thought about how you may never learn to read, or even have a friend. Not a single friend.
Why has Autism taken so much from you?
Why has this terrible thief invaded your little life and filled your everyday with such difficulty and our hearts with such grief?
You have two younger sisters. The three of you are such beautiful gifts to your Daddy and I. The three of you are the apple of our eyes. We couldn’t imagine life without you girls.
As we sat on your bed in the dark, I could hear your little sisters giggling in the next room. They were talking to each other. Communicating. Laughing. Playing.
Such simple things. Things that we don’t take for granted anymore now that Autism has made its way, unwanted, into our lives.
You want so much to be like them. You try to interact with them, but you don’t know how. And at times I feel like I am watching them grow up without you.
They will grow up. You will grow up, at least on the outside.
But your lives will be so different. They are growing into young women, but in so many ways, you will always be a little girl.
My little girl.
They will get their driver’s licenses. They may go to college. They will get married and one day have children of their own.
And I’m afraid that only then will you understand what growing up means. Only when it becomes another loss for you, will you understand.
And you will want to be just like them. And how will I explain it to you? The words won’t make sense to you. They will just be empty jargon floating around in your head.
Oh my daughter.
My Elliana Joy.
My Little Pearl. My Rose.
I want to give everything to you! I want the world for you!
I want the most basic of life’s sweetest gifts for you.
Marriage. Children. A life of your own.
Is that too much to ask?
But giving you those things is not in my power. Autism has stolen so much. So much.
So as we sat there on your bed, I whispered in the dark.
We will bake brownies.
We will sit on the patio in the mornings and drink hot cocoa. We will smell tea bags and sing hymns together every night with Daddy.
Do you know how beautiful it is when you sing?
We will read Bible stories about Jesus. We will read about how He loves the children. Do you know how much Jesus loves you?
We will eat cheese popcorn, watch Winnie the Pooh, and dance in the living room to the closing song.
At night Daddy will read to us about how Jesus calmed the storm. Do you know Jesus can calm your storms too?
We will paint our toenails and color pages and pages of nothing but purple balloons. I will sit under the weeping willow tree and watch you swing for hours with your head cocked to one side.
And that will be enough. It will be enough for us just to be together.
We will grow old together.
Just the three of us.
You, me and Daddy.
I will give you my love. All my love.
Everyday. Every moment. Now and forever.
And as I pray for you, and read to you from the Word, and sing His praises over you, I know that Jesus is in this.
Even in this.
He’s right here, in this big bad mess called Autism. He’s here for me. For you.
So I will remember that there are so many things that Autism can’t steal from you.
Autism cannot steal your joy.
It can’t steal the twinkle in your eye, or the spring in your step, or the way you sing and dance and giggle. It cannot steal the love Daddy and I and your sisters have for you.
It can’t steal your smile or your child-like delight in the simplest things; like tea bags, purple balloons and weeping willow trees.
And do you know what else Autism can’t steal?
Autism can’t steal Jesus from you.
His love for you is so big, so deep, and so wide it could fill the ocean. It could touch every distant star. It’s so strong that is can bypass your broken mind and go straight to your Spirit and touch your soul.
And isn’t Jesus Everything?
What more could I want for you than Jesus?
So, My Little Daughter.
When you grow up, and your sweet sisters have married and gone and have houses and children of their own, we will bake brownies.
And most of all, we will remember that Autism is not forever.
There is no Autism in Heaven.
One day every little thing that Autism has taken from you won’t matter anymore, because we will see His face.
And on that day, He will wipe away every tear from our eyes.
There will be no more sorrow.
No more pain.
No more crying.
No more Autism.
The former things will pass away, and we will be whole.
“God Himself will be with them and be their God. And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.” Revelation 21:4