A publication of the Kentucky Center for Public Service Journalism

Constance Alexander: Making the jump into the unknown and believing in love with precious baby

Twin boys. Exciting news. A double blessing. Megan Scholl Lindberg and her husband were thrilled, as was their little girl, Malena. Preparations for the births began. “They were totally healthy and growing on track,” Megan recalls.

At 34 weeks, the doctor said it was unlikely that the babies would stay put all the way to the target of 38 weeks. Two weeks later, the babies had gotten smaller and an emergency Cesarean Section was necessary. Major was small but doing fine as a preemie, but Max had a Grade 4 bleed on both sides of the brain called IVH, an intraventricular hemorrhage.

The diagnosis was sobering, the statistics frightening: Max might not make it. Megan remembers being in a state of shock and blaze of hormones as she and husband Mike watched and waited. Both babies were in the NICU, another acronym added to their vocabularies.

In a Neonatal Intensive Care Unit, each day dawns with life-and-death challenges. Only two days old, Max was surrounded by doctors and nurses, nearly lost in a wilderness of tubes and electronic equipment.

“We were told the severity of his brain injury and the doctor’s prediction of what Max wouldn’t be able to do: eat, sit, talk, walk,” Megan said.

Everything was left up to chance. As Megan put it, “We weren’t sure if he’d leave the NICU, but he shocked them every day. Holy Cow! I thought. This is a miracle.”

In sixteen days, Major was ready to be discharged from the hospital. Amazingly, on the seventeenth, Max was able to join his twin at home.

Life went sideways in so many ways. There were problems – seizures, surgeries, missed milestones in physical therapy, and more hospital stays for a condition called “failure to thrive.” Even with the diagnosis of cerebral palsy, however, Megan could only see love.

“I whispered in Max’s ear not to let those words in, that he is magic, he is free to dream, free to be Max.”

The baby has his own personal cheering section, with the most ardent supporters his big sister, Malena, and his twin. These days, Major spends a lot of his time crawling and cruising, just moving around. With two days a week of intensive therapy, Max is alert and observant. He is using his right hand, and his eyes follow the activities of the loving circle of family, friends, and those working with him and rooting for him.

Even when Major is enthralled with exploring their world, if Max cries, Major pauses. “He helps. He’ll bring a pacifier or a Barbie,” Megan remarked.

At home, Malena is at his side, a patient and generous caregiver. At school, she answers other kids’ questions and explains the facts of life regarding her brothers.

“She makes other kids aware,” Megan said, adding, “I think that’s another thing that keeps me going.”

With both parents working and also making space for family time and daily chores, outside help and encouragement are essential. Megan’s employer has been supportive, even upgrading health insurance coverage to provide for Max’s therapy, a wheelchair, and other aspects crucial for the baby’s progress.

Today, Max and Major are fifteen months old. Malena is six. Megan reports that they are doing well, but things get scary when she contemplates the future, getting older, and the meeting the daily and long-term demands of caregiving. Right now, early intervention has made all the difference, even though some days, as Megan admits, “We get stuck.”

Recently, when Megan spotted an online post about the Precious Baby Project, she made the trip from her home in the Chicago area to New Haven, Indiana, outside Fort Wayne. Photographer Angela Forker had launched a photo series for medically fragile babies by creating floor scenes with elaborate fabric backdrops and other props. When an infant with a disability is placed in the safe setting, it appears that the baby is jumping, running, afloat on a bed of plush clouds, etc.

In his portrait, Max Lindberg is in all his glory, attired in a baby flight suit, complete with cap and goggles. He is jumping into the unknown, parachuting into the clouds. In decades to come, Megan will explain the fearless pose to him by describing a combat jump his father made on March 26, 2003. The jump, in Megan’s words, was “in the darkness of night, into foreign land. He jumped because courage is not lack of fear; strength is not equivalent to physical abilities. Making the jump into the unknown is finding peace in the present and believing in love.”

Additional online information about this unique project is on Facebook and at www.preciousbabyphotography.com.

Constance Alexander is a columnist, award-winning poet and playwright, and President of INTEXCommunications in Murray. She can be reached at calexander9@murraystate.edu. Or visit www.constancealexander.com.

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One Comment

  1. Genus is pacini says:

    This family is amazing with their courage and love. Malena has come and spoken to a group of kids with me as part of my human education presentations . she is a smart, caring little girl.

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