Wishing on a Basket full of Stars

by Kristin Bender

In 1996, a pregnant Heidi Cartan underwent an emergency Caesarian section after experiencing a sudden stop in her baby's movement. The baby was born blue due to lack of oxygen. Doctors inserted a breathing tube into his mouth and down his throat, fracturing his second vertebra in the process, Heidi says. Two and a half months later, she and her husband returned to the doctors with their baby boy, Noah, who was unable to keep food down and cried nonstop. He was readmitted to the hospital. Tests showed brain damage. Although it is not known if the brain damage was present at birth, geneticists theorize that Noah, now 13, has an underlying genetic condition that explains certain aspects of his current disability, such as his need for a feeding tube, hip problems and high comprehension but a lack of speech. The vertebra fracture landed him in a wheelchair. Noah was diagnosed with cerebral palsy, which refers to a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Stroke. During the first few years, Heidi says she was almost constantly on the verge of tears, feeling

like she was “outside looking in at a life she thought she and her husband would have with their son.”

A FRIENDSHIP MEANT TO BE

“In the beginning, I was exhausted, constantly worried about whether Noah would even survive and desperate to just be a mom. I was pretty isolated because Noah was not well or strong enough for me to belong to a moms' group. And at that time, I could no longer get together with friends unless they came over to see me,” says Heidi, a no-nonsense woman with a bright smile and easy-going nature. Noah vomited 15 to 20 times a day, making even a short trip to the grocery store impossible. age 2, Noah was finally stable enough to take short trips outside. Heidi and her son began visiting the neighborhood park. But Noah wasn't integrated with the other children and Heidi wasn't a part of the usual circle of moms who sat on the “He couldn't go on the swings, or sit in the sand area or do any of the things the other kids were doing. But I was trying to be a mom-this was Sarah Lundgren, a tall woman who looks you straight in the eyes when she speaks, was very pregnant the day she brought her 2-year-old Emma to the park-the same day she approached Heidi. She now believes she must have seen the “Sarah extended herself to me,” says Heidi. The two moms bonded instantly. At the time, they were both in their mid-30s with first children around the same age and lived just blocks from one another. A month or so after their first meeting, Sarah gave birth to a healthy baby boy. She and her husband named him Dean and brought him home. Life was good. A month later, for reasons unknown, Dean contracted meningitis, which caused cerebral palsy prepared for this sudden change they had no guideline on how to raise a child with special needs. Sarah, who had bravely and graciously extended a hand to Heidi, now desperately needed help herself. “Sarah showed up at my door one day looking for help and advice,” says Heidi. Their friendship was quickly strengthened as coping and playing with their young boys with cerebral palsy.

POOL YOUR RESOURCES

Then one day Heidi took Noah to a pediatrician appointment. The doctor asked if she would be willing to speak to a new mother, Stephanie Spaid, whose son Aaron was born with cerebral palsy. Heidi happily agreed. Aaron was the first child for Stephanie, a former art and foreign language teacher, and she was in need of advice, help and friendship. Their boys had similarities: Aaron and Noah require feeding tubes, are in wheelchairs and are legally blind. “Heidi was totally helpful,” says Stephanie, now 41 and also raising Sebastian, 7, Eva, 5, and Audrey, 3, with her husband. “I thought 'this is a really nice person, I need to pick her brain.'” Within about a year, Heidi and Sarah convinced Stephanie and her husband to move to the same flat Mountain View neighborhood just blocks from downtown and close to parks and schools. “That way, you pool your resources,” explains Stephanie. And pool their resources they did. They started a summer camp out of their homes when the boys were around preschool age. “Summertime motivated me because it got really long and I had a child who needed to stay active and engaged, but had a lot of physical limitations,” says Heidi. They rotated the location of the camp, organizing different activities for the boys and their other children. Stephanie, who played in an Irish band with her husband, held music fests for

the children, complete with pizza and an audience seating area. Children with cerebral palsy, especially those who are blind or have limited sight, need to stimulate their other senses, so Heidi hung beads and a “sling swing” from the ceiling, and put bells, pipe cleaners, felt and cardboard cutouts along the hallways for the boys to discover with their hands. “Tactile stuff,” says Heidi, who now also has son Matthew, 6. The three moms shared teaching ideas, too. When Sarah was teaching Dean, who is blind and has minimal speech, simple words (such as star) she put different sized stars in a basket for him to touch. “I had a metal star, a pine cone star, a stuffed star, and pretty soon Dean was saying 'star,'” she says. “The star basket” was something Heidi's and Stephanie's children with cerebral palsy used too. In addition to sharing their teaching ventures, the moms also swapped ideas and successes on how to make the situations they encountered a little easier. Heidi was the first to take her child on an airplane and recommended to the other women that they too get the front row seats, which are more spacious, giving them enough room to change a diaper if necessary. “Being with them brought a lot of joy in a time when I could have been feeling really overwhelmed. I was not looking for a gripe session. I was looking for women who loved their kids equally and could move forward with their lives,” says Sarah, who has two other children, Nate, 5, and Emma, 13.

LIFE'S SIMPLE PLEASURES