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Postscript: Celebrating Savannah, even after she's gone


Joe and Renee Hurst have decided to stop asking, "Why?"

Why does a 3-year-old girl die from a strange illness?

Why, after a seemingly perfect first year of life, did she slowly regress into a wheelchair and fade away over the next two? Why did she suffer? Why can't parents protect their children?

They have tried on thousands of answers, and not a single one fits.

So now, instead of "Why," they ask, "What?"

What can they do to make today better? The answers still feel small, but at least they make some sense.

Today the answer is to continue to have a monthly birthday party for Savannah. It's a tradition they started when she was alive, to get in as many birthdays as they could.

The seventh of every month will continue to be a celebration of the life they got to share with her in their Clearwater home. A small answer, for one day of the month.

• • •

The quiet that followed the funeral last month feels eternal.

They have found it much harder to be without her than it was to live with her illness, metachromatic leukodystrophy, an inherited genetic disease that damages the nervous system. MLD patients eventually die from pneumonia, an infection or other effects of a broken body.

In the silence since she died, emotional triggers are everywhere.

On the morning of Savannah's party, Renee gets a blender out of the cabinet to make Jackson, their 6-year-old son, a smoothie. As she lowers it to the counter it feels like she is making a food for Savannah's feeding tube. Tears stream down her cheek.

Joe, a real estate investor, is working on the computer downstairs. When he hears the blender, he momentarily thinks Savannah is getting lunch. Tears fill another room.

Numbers on the clock mark times for medications they no longer have to give.

"It's 12:00, oh I gotta … oh, no I don't," Renee says. "6, 8, 9, 12, 2, 4, 6, 9, 10. Sun-up to sundown. The numbers on the clock hit me hard."

At night, Joe still wakes at every sound that could be Savannah in need, then feels the pit in his stomach when he remembers she's gone.

The parents continually ask themselves what they learned from having Savannah.

For Joe it has changed what it means to be a man.

"Little girls grow up to marry a man like their daddy. So you have to be the man you want her to love. You look at yourself the day she was born and you realize you have to be that person. It's a lot of pressure. She changed my life completely. I still believe for the better. I'm a better man for having my daughter."

For Renee it has changed her priorities.

"If she had never been born I would have still been saying, 'I want my big house. I want my stuff.' But it's really just the time you have that matters. Things that seem small are absolutely everything. You don't know how many birthdays, Sundays and 'first times' you are going to have."

• • •

Jackson's soccer ball bounces over the patio table and he leaps after it. Every piece of boy makes it over the table except his ankle, which cracks sharply on the corner.

He falls to the floor, crying and rubbing a small purple bump.

Renee scoops him up on her lap and gives hugs. Joe tries to make him laugh. He picks up a carnation a friend brought over for Savannah's party and tickles Jackson's face.

After a couple of tries Jackson plays back, pushing Joe's face and giggling.

For a minute their little boy cuddles with Mom and roughhouses with Dad at the same time.

And he's done. He's up and running, forgetting for the first few steps that he is supposed to limp.

"That," Joe says. "Having that. You gotta cherish having that. Everybody says 'cherish every day', but you don't really understand that quote until something devastating happens."