RAISING A DAUGHTER WITH AUTISM: GRACE MIXED WITH GRIEF

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I see a blue and white comforter spread across my lap when I remember the beginning of this journey. How appropriate. Who knew that Blue would be the color of Autism Awareness Month so many years later….

I was waiting for the phone call. My husband had met with the surgeon the day before, and now he paced the sterile halls of Johns Hopkins Hospital waiting for word of how it had gone.

“We need to finish the heart surgery in 20 minutes. At 25 minutes, she will lose the function of her legs. At 30 minutes ….” He had informed us.

How we prayed! How we watched the clock tick by!

My sweet baby was only four days old. Five pounds was all she was, but every ounce was precious to us. We called her Grace.

We knew while I was pregnant that something wasn’t right. The day after she was born we met with a specialist who laid it out for us. Correctable heart defects now, possible kidney issues, hearing would probably be a concern. Oh, and growth and thyroid to watch for.

No one knew that autism would be added to the list, or that autism would end up being the biggest concern of all.

“19 minutes, Priscilla! She made it!”

I breathe a huge sigh of relief! I close my eyes and thank the Lord. I feel a weight taken off my shoulders. If only for a moment.

But then I start going through the list mentally.

I start talking to God. All formality long gone.

“God,” I explain slowly, “I feel like we just got over one huge mountain through prayer, and faith, and the skill of surgeons…only to look up and see mountain after mountain ahead us! It’s overwhelming!”

I pick up my Bible and turn to the next reading. I was following a plan to read the whole Bible in a one year. Occasionally, I got behind, but everyday seemed perfect. Like God sitting at the end of my blue and white comforter.

Isaiah 49. Next reading.

“And I will make all my mountains roads, and my highways shall be raised up….For the LORD has comforted his people and will have compassion on his afflicted….”

I catch my breath. Was He listening? Was He answering?

“…I will make all my mountains roads….”

I think I might get it. Yes, there were mountains ahead. Lots of them. But they weren’t a Detour. They were the Road. They were the most direct route. I wasn’t sure where I was going, only that God said this was the way to get there.

And make no mistake about it, there have been mountains upon mountains…too many to recount.

At the beginning there was just a lot of crying and screaming and colic with that child! Oh, she was difficult from the get-go.

I remember dropping her off for the first time at a childcare center for one hour so that I could get the groceries bought. I was so nervous. I had a detailed list of how to care for her – I knew it wasn’t easy. But the workers there just looked at me in disgust. These young mothers. So ridiculous!

I remember picking her up ten minutes early only to find the staff in a state of panic! Their faces were not so confident now! Ha! I guess these young mothers do know a thing or two about their babies!

Walking a mountain road may feel like a singular trail. But you’re really never alone.

I can still picture the sweet teachers at that special school in England where we lived. They were the first people I can remember who thought that Grace was funny and smart and not a bother at all. They were the ones who figured out how to communicate with her through simple stick pictures. They were the ones who taught her how to read. They were the ones who weren’t scared off by her sudden tantrums that came out of nowhere. Oh, Grace! they laugh, and swoop her up in their arms.

You do meet some special people along these roads. You won’t find them anywhere else. God plants them there.

Oh, I could amaze you with stories about Grace’s intelligence and passion…. I’ll never forget chaperoning her eighth grade school trip to Chicago, The Museum of Natural History. In one of the exhibits there was a huge map of Africa with the countries unlabeled. How Many Countries Can You Name? it read. The girls in my small group gave it a try and came up with maybe three. Then Grace started. She effortlessly read the blank countries left to right and didn’t stop until she reached South Africa. The other girls wandered away before Grace got to Kenya, but the principal of the school stood behind us with his mouth hanging open.

God tells me there’s a diamond in the rough there….

I could tell you of the countless answers to prayer we received. Autism support programs that opened the semester we started at a particular school. “You’re coming to the high school in town? This is the first year of the LINKS program….” Or medication that became covered by insurance the month we moved back to the States. Or scholarships that just showed up on college bills that made it possible.

God made a road through the mountains, one mountain at a time.

But the picture would not be complete or honest without telling you the things you don’t want to know. The stories that don’t seem to have a happy ending. At least yet.

I could tell you about the outbursts, the unintentional rudeness, the embarrassments, the constant mumbling, the obsessions that never end. Or I could tell you about the weariness or the wounds that get more defined by time.

I could tell you how in some ways Grace is getting worse, or at least she’s not getting better and it looks worse. Even she is frustrated with her lot. “I feel like my life has no meaning,” she tells me. And I know how she feels. We kept hoping for a huge improvement, and it never came. Sweet Grace has so much passion and desire – she fasts and prays every Friday for unreached people…. But who can reach Grace?

Here’s a girl who is just credits away from completing her bachelor’s degree in history and theology! Her dream is to do mission work in North Africa…. But she’s having a hard time getting on a plane to go to Orlando for spring break.

So here we are 25 years later still facing mountains and still walking this road. It’s a road of grace mixed with grief. But somehow it’s comforting to know that wherever this is leading, God is with us, and He is getting us there.

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4 thoughts on “RAISING A DAUGHTER WITH AUTISM: GRACE MIXED WITH GRIEF

  1. Thank you for such a poignant piece of writing, Priscilla. I remember having Grace in Sunday school many years ago and how bright and special she was. I like your idea of looking at the mountains in our lives as the roads along which God is leading us. I will put Grace and her quest to find meaning in her life on my prayer list. Thanks for sharing so openly.

    Liked by 1 person

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