New mum grateful for support network’s help after brain tumour removal

|     Theresa Vargas, The Washington Post     |

AS A Washington, DC public school teacher Kassandra Johnson has taught many of her preschool aged students how to pronounce words by telling them to look at her mouth. She has shown them how the slightest movement of her lips holds the power to shape sounds.

Now, a month after doctors removed a tumour from her brain, Johnson is the one learning how to speak.

Her words come out haltingly in a way that leaves each standing alone for a moment before the next one joins it.

“I. Am. Not. A. Crier. At. All,” she told me on a recent morning as we sat in her Maryland home.

But even as she said those words, her eyes filled with tears at the thought of what her family has endured in the last six weeks and how friends, relatives and strangers – so many strangers – have rallied behind them.

Kassandra Johnson talks to doula Alyssa Seidorf as she holds Kassandra’s daughter, Aminah Johnson
Ten days after giving birth to her second child, Kassandra Johnson had a brain tumour removed. – PHOTOS: WP-BLOOM
Photos of Aminah Johnson hang on the wall above her crib at the family’s Maryland home
People have donated more than 80 boxes of diapers to the family

Johnson’s story could have been one of loss. She could have been another maternal mortality statistic in a nation where the number of women, and especially black women, who join that unwanted sorority is already too high. Instead, her story is about how the community came together to make sure a new mum was taken care of at time when her family needed support most.

After Johnson gave birth to her second child, a little girl she and her husband named Aminah, the 30-year-old experienced a headache that refused to go away. Ten days later, as she held her daughter in her lap, the pain grew more intense. She asked her mother to get her some Motrin and then she noticed the right side of her face started to droop and her words came out slurred.

Her husband, Brandon Johnson, who is also a Washington, DC public school teacher, was at a neighbour’s house with their two-year-old son, Eli, watching the Super Bowl when he received a call saying his wife was having a stroke.

He left his toddler with the neighbour and rushed home. He and his wife share a house with another couple, a paediatrician and a pharmacist, and the paediatrician drove them to George Washington University Hospital. By the time they arrived, Kassandra Johnson could no longer walk and could barely speak.

“I’m scared,” she tried saying repeatedly.

Once inside the hospital, doctors conducted scans of her brain, monitored her for the night and performed surgery on her in the morning. Brandon Johnson said the doctors warned him that she might not survive the surgery and that if she did, she might not regain use of her right side.

He was left wondering if he was going to be a single father, or if she survived, whether she would ever walk again or hold their children again.

When the surgeon told him that they found a tumour pressing on the left frontal part of her brain and removed it, Johnson wrapped his arms around the man and squeezed him into a hug. So much remained unknown – whether it was malignant and whether she would fully recover – but she was alive and the tumour was gone. For that, he was grateful.

He was also grateful for what was happening without him having to ask. Friends and relatives had started mobilising a support system.

Friends donated breast milk for Aminah, volunteered their time to babysit and organised food drop-offs.

One friend also let members of ‘District Motherhued’, an organisation for millennial mums of colour, know what had happened. Suddenly mothers who had never met the Johnsons started reaching out to help. Some donated to a GoFundMe created for the couple. Others contributed to a collection of diapers, wipes and ointments. More than 80 boxes of diapers alone were given to the family in a range of sizes (because mums know how quickly babies grow out of those teeny newborn diapers).

“Support was coming before I even knew it was needed,” Brandon Johnson said.

“To see so many people care for me, and my daughter and my son and my husband, it’s overwhelming,” Kassandra Johnson said. “I didn’t know so many people cared.”

Simona Noce, who founded District Motherhued with Nikki Osei in 2016, said they didn’t intend to create the network that now exists. They started by arranging one night for millennial mums of colour to hang out and feel connected. But the success of that gathering led to more events and now, the organisation counts about 7,000 mothers as participating in the group.

The group is active on an Instagram page and has rallied behind mothers in need before. After Hurricane Harvey, they collected a truck load of clothes and diapers to send to mothers in Texas. And during the government shutdown, working with generous donors, the group was able to provide five single mothers who worked for the federal government with a full month’s salary.

“It’s so beautiful to see these mums help each other,” Noce said.

Kassandra Johnson said she and friends participated in several events with the group and that she was excited to find a place where moms of colour could come together, have fun and support one another. But in the last month she has also seen another benefit of forming these networks. She and her family could have felt alone in their struggle but didn’t. She has received messages and prayers from women she has never met.

She has also received cards from her students. They are covered with hearts and stick figures.

“I miss them,” she said.

Johnson is supposed to return to teaching in May but said she doesn’t know yet if she’ll be able. After the surgery, she spent 24 days in the hospital and victories came in small improvements: a wiggle of her toes, a clap of her hands, the ability to pronounce a word clearly.

The tumour was benign and doctors told the family that she is expected to make a “significant” recovery. Kassandra Johnson said she feels herself getting stronger every day. But still has physical therapy to do. Her right hand doesn’t yet open and her head still aches at times, bringing with it knew worries.

She is also just now getting to spend time with the daughter she had only 10 days to get to know before heading to the hospital. On Sunday, came an important moment for the two of them. Johnson said it was the first time she was able to breastfeed Aminah since coming home.

“That made me happy,” she said. “I wanted to do something for her for so long. I just felt helpless.”

As she talked, the tears came again. – WP-BLOOM