What I Now Know: Kylee Hoelscher

Posted by Reeve Staff in Daily Dose on September 24, 2019 # Caregiving, What I Now Know, SCI Awareness

Dear Kylee,

Tonight you’ll find yourself on a helicopter, flying above Los Angeles, headed toward the PICU. It’s going to be a long night and an even longer next few years. In a few minutes, you and Nic will have to sign paperwork that you should not be authorized to sign because you’re giving the doctors permission to perform a procedure that you didn’t even know existed. After tonight, words like intrajugular line, autonomic dysreflexia, and paraplegia will enter your vocabulary and hunker down, causing a lump in your throat that will make it hard to eat, hard to swallow, hard to breathe. Hold on, momma, you got this.

Tonight will be the first time doctors tell you to “prepare.” That Eden, your 5-year old daughter, is paralyzed, and her life is going to be very difficult from here on. You’ll pace in that tiny consultation room, saying over and over, “I don’t understand.” You will feel like that forever.

You’ll meet doctor after doctor who tell you that Eden will not get better. You’ll meet one physical therapist who will tell you she’s worried about Eden because “What will happen when she doesn’t get better when you’ve been telling her all along she would?” Ignore these people. Things are being put in place, and people are being put in your path.

Soon you’ll meet Julie. She’ll introduce you to Andrea Behrman, who runs The Kosair Charities Center for Pediatric NeuroRecovery, part of the Christopher & Dana Reeve Foundation. It will be the first time in months that someone has listened to you. They’ll believe you, and they’ll offer you hope.

You and Nic will believe them so much that you’ll pack up your Southern Californian beach house and move to Louisville, Kentucky. You’ll leave your family and friends to give Eden the chance she deserves to recover.

Six months after Eden’s injury, she’ll take a step. That same week, she‘ll take steps for six minutes. You and Nic will cry as you watch the video and you’ll tell him, “It’s finally happening.”

For the next three years, you’ll watch Eden prove those doctors wrong. She’ll go off all medications. She’ll crawl. She’ll continue to take more steps. Her kidneys will heal. You’ll watch electrical stimulation move her muscles, although all the textbooks say it’s impossible. The first time you put her in a baby swing at the park, she’ll slump over and you’ll have to prop her up with blankets, but don’t worry. She can now swing on a regular swing. She can also play tennis, swim in a pool, and ride a horse, and each of these moments will feel like all those firsts you put in her baby book.

It will not be easy. You will lay your head down on a psychologist’s table and sob that you can’t go on, but you always do. Eden is a fighter, and she gets that from you.

And just to reassure you, she is going to be really, really happy. Her personality will not change, and her smile will be as bright as always. She’ll become a beacon of hope for strangers around the world. She’ll be the source of strength thousands of strangers draw from.

Most importantly, she’ll ignite and inspire change. You’ll be able to see policies and opinions change in front of your eyes. All because of Eden.

So tonight will be rough. But hold, on. There’s still a lot of beauty left in the world, and you’re about to find it.

Love,

Kylee Hoelscher