How to accept your child’s diagnosis

One day.

Leslie Johnson’s tips for survival

The piece of advice that helped you the most early on: Take time to enjoy your kids. They grow up in the blink of an eye.

What advice would you give other parents? As a special needs parent, you have to trust your gut. If you sense something is wrong, you are most likely right.

Your best mom survival strategy? I make time for myself by meeting my girlfriends for dinner once a month. It gives me something to look forward to on the tough days.

That’s how long Leslie Johnson gave herself over to depression after her 20-week ultrasound showed Spina Bifida, Hydrocephalus and Chiari Malformation. Then she got busy learning what it meant for her baby, Carter, and her Plainfield family, which includes husband, Jeff, and daughters, Hailey, now 5, and Aubrey, now 3.

“We knew that Carter was going to have struggles and we were going to have struggles,” she says.

After taking that one day, she did exactly what her doctor told her not to do. She went to the internet. “I kind of needed someone to tell me it was going to be OK.”

And she found hope among strangers who knew exactly what she was going through.

The family never expected Carter’s case to be as severe as it turned out to be. Just 2, he has already had 28 surgeries, with five shunts, a trach and a feeding tube. She especially worries about the number of times Carter has undergone general anaesthesia—now at 50 and counting.

Johnson tries not to dwell on those numbers. Or think much about the future.

“I like to live in the moment,” she says. “I don’t know what Carter’s future is going to be like and I’m hoping I’m making the right choices now to benefit him in the future. He’s had to have some risky surgeries and we’ve done it with the thought that it will give him a better quality of life.”

She and her husband work together to be upbeat to keep the kids upbeat.

This journey has changed her as a mom for the better, she says. “I kind of let life slow down as a whole and appreciate being with my kids and being excited about the little things they do.”

Carter is a pretty typical 2-year-old, she says. He likes books, blocks, cars and his iPad and he loves to dance, sing and give kisses.

“He is the happiest kid ever, always smiling, never in a bad mood. He’s made it easier on us, definitely easier to get through the day,” Johnson says.

He doesn’t let anything stop him.

“He is truly amazing. I am so proud to be his mom,” she says.

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