Laughing Until I Cry

I wrote this piece 12 years ago for a Good Friday service. Still true today and always.

Good Friday 2003

“It is Finished”

Last month, our second daughter turned 20. Nani, as we call her, has severe autism, a profound hearing loss, and brain damage. Her birthdays are always bittersweet times for me. I’m so glad to still have her here with us. She has brought incredible experiences and depth to our lives. But there is no escaping the memory of dreams that died, fears that were realized, and hopes snatched away.

Nani was 2 months old when the doctors suspected something was wrong. We went through 6 months of testing and waiting, always being told it might prove to be nothing- just a bit of slow development. How we hoped and prayer for nothing!

But very late one afternoon, I sat holding Nani in a tiny room, waiting for more tests results. The clinic was empty, most of the lights turned off. It felt deserted, somewhat surreal. The pediatric neurologist slipped in the door, sat an arm’s length from me, and said gently, “The test showed many, many seizures. I am so sorry to tell you the prognosis is very poor.”

At that moment I heard the sound of a door closing and being locked. I wasn’t sure if it was real or imagined, because it so mirrored what my heart was feeling.

From that point on we began a long journey of endings, of having to say “It’s finished” about so many things, of having to acknowledge so many battles lost. We went from battleground to battleground.

“If we can just stop the seizures before age 3”, they said…so we tried dozens of drug therapies, but the 3rd birthday came and went and the seizures did not. God himself stopped the seizures in an undeniable miracle when she was 3 ½. It is still a cherished blessing, but her developmental level stayed within the severe range.

“If her brain will switch functions to the side without damage, then there is some hope”…, so we put her in hours of physical therapy each week. Her brain switched some functions to the other side, and yet her cognitive development did not improve.

“If she could just hear”, so a cochlear implant was done, but she was unable to use the sounds it provided.

“If we can find a way for her to communicate”, but after 20 years we and a team of experts are still looking for ways to make her communication more effective.

I am not going to tell you that every day of Amanda’s life has been filled with emotional pain for us. It has not. We have known great joy and lots of laughter. We have seen the hand of God in our lives. Many times He has answered before we called. Other times, just when it seems impossible He provides a new resource. But He has not chosen to heal her.

There was no 1st day of 1st grade for Nani, no slumber parties, no whispered secrets with sisters, no driver’s license, no prom dresses. She will not dance with her dad at her wedding, or bring us grandchildren. These are losses that we have experienced because we live in a fallen world full of disease, life altering disabilities, and death.

I learned a long time ago that God does not need me to pretend these things don’t hurt, they do. They are real losses. But there is something else I have learned. Something else has become REAL for me.

Jesus said on the cross, “It is finished”, and paid the price for our sins so that we could have eternal life and be fully restored. That priceless gift means that someday Nani will be finished with autism, seizures, brain damage and hearing loss. Someday I will hear her voice and she mine. She may even dance with her Daddy. And there are three sisters that have some catching up to do.

Nani’s full name means “Worthy of love” and “Victorious, warrior maiden”. It is a name God gave us long before the doctors gave us any diagnoses. It’s a counterpoint to what the world would say about Nani’s value and worth, and a reminder of a victory He gave her long before she was formed.

It may be Friday, but Sunday’s coming.