Friday, November 24, 2017
News Roundup

Holiday Hopes: Mom wants a laptop for the children; kids want a camera for Mom



The photos cover the kitchen walls.

Not just adorn them — hanging in neat frames or pinned under refrigerator magnets — but cover them, butting up against each other as if forming a personalized wallpaper.

"I didn't want there to be a gap in their lives," Joanie Blackwell, 51, said of her children. "I didn't want them to miss out. So I kept taking photos, even when it was hard."

It can be difficult to get a family of seven together for a picture, but it becomes a Herculean task when one of those seven is an autistic child and when the father and former breadwinner struggles to stand for any length of time and spends most days confined to a bed.

Jim Blackwell was diagnosed with brain cancer in 2001, when their fourth child, Jesse, was a year old. In April 2009, the trauma to his brain took a devastating toll and forced him to leave his job as an executive chef just months before their youngest son, Levi, turned 5.

Through it all, Joanie, an effervescent Northerner who dreamed of life as a stay-at-home mom, learned to be a medical expert, a legal advocate and the leader of a family.

In a time when technology dominates all, including routine homework assignments, Joanie hopes her children can have a new laptop to help with school.

Her kids have something else in mind. When their mother's back was turned, they pulled out a note with one request:

When she has free time, she likes to take pictures and capture the moment of us growing up. She needs a new camera. I hope you can get this for my mom. She deserves a lot and doesn't get praised for a lot she does for our family.

She took care of us.

• • •

Music fills their home. Sometimes it's a recording of their oldest daughter, Jillian, singing. Other times it's Levi, 9, learning the guitar or Juliet, 15, practicing her violin.

In a world of unknowns, music keeps them calm. All five kids turn to it when they're overwhelmed or sad or can't find the words to talk about what it's like living with a father who in so many ways isn't there.

"I only remember seeing him in a seizure on the ground or laying in bed," Juliet said. "I was never out with him. We didn't play."

Juliet said she's thankful for a lifelong friend she can talk to about the pain of watching her dad deteriorate.

"They're a very close-knit family," said neighbor and friend Ann Isler-Korbaj. "What I'm impressed with the most is, despite all of this, how close they all are."

The boys are more reserved in their comments. They admit they miss having a conventional father figure. Jesse, 13, writes raps to help him sort through his thoughts. He's learning how to mix music on the computer, but it's difficult to do with only one desktop for the seven of them.

"I want to learn, too," Levi said. "I want to help him."

They have an old laptop, but it runs slowly and mostly stays in Jim's room, where he spends upward of 20 hours a day.

"I want them to be inspired and grow and learn and make a difference," Joanie said. "There's so much to learn. I don't want them to be left behind technology-wise."

Joanie fears that the lack of regular access to computer programs not only compromises their ability to do schoolwork but holds them back from creating and learning. Whether it's music, art, photography or crafts, they all thrive on building something new.

"It's been their outlet and their path," Joanie said. "It's how they express who they are."

• • •

In the beginning, Joanie wondered how she would keep food in the house or give the kids the things they needed for school. She remembered one day when there was only milk in the refrigerator and napkins on the counter. The pantry was bare. She's thankful for their community at Providence Baptist Church and her mom and mother-in-law, who help with the children.

"The responsibility is enormous," Joanie said. "It's been really hard to be a caregiver to a special-needs son and raising the boys to be men. I've been a mom and dad for a long time."

When it all gets to be too much — the decline of her husband and best friend, the financial burdens, the concerns for the children and their future — Joanie picks up her camera and photographs the family. She wants to capture the good moments, to give them something to look back on.

"We just try to maintain what we have and make the best of it," she said. "I don't know how we make it, really. We just take it one day at a time."

Caitlin Johnston can be reached at [email protected] or (813) 661-2443.

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