Care For Children
Support Groups Connect Moms With Medically-Fragile Kids
“You learn to live in the moment,” said Alma Carrillo, a west suburban mom whose 7-year old son is a hospice patient.
Several northern Illinois mothers had their lives turned upside down when either their child was born with a life-limiting condition or have developed serious illnesses. Their daily routines consist of doctor appointments, therapy sessions, home tutoring, nurse visits, social worker meetings in addition to the regular “mom” duties of cooking, cleaning, laundry, tending to other children, running errands and, if at all possible, sleeping.
“These moms are superwomen in our book,” noted Carrie Alani, director of the pediatric care program at Hospice & Palliative Care of Northeastern Illinois (HPNI). “Their lives are on a roller coaster a lot of the time and they consistently amaze us with what they are able to do for their children and their families.”
Realizing that these women are carrying so much stress around with them, although usually receiving support from extended family and friends, HPNI established two support groups for moms of seriously ill children. “These moms can relate to what each other are going through like no one else can,” explained HPNI social worker Anne Weisblatt. “We created the group because the moms can support each other and learn from each other—share ideas of what works for them and what doesn’t,” she said. “In addition, this is a safe place to express hopes, fears, and emotions, to be there for each other, to ask for support. They understand each other and can realize that they are not completely alone in the world facing this unthinkable situation.”
One of the groups is for English speaking moms, the other for Spanish-speaking moms. “The moms in my Spanish group are so excited about this group being formed because there really aren’t a lot of resources—books, groups, etc.—in Spanish that focus on the subject of dealing with a seriously ill child,” said Weisblatt, who is one of HPNI’s bilingual staff members.
Meeting just once a month, the groups meet in a member’s home, whoever is least able to leave home. “It’s really hard for these moms to get away and once a month is usually manageable.”
Having cared for her son Matt, who has quadriplegic cerebral palsy and epilepsy, for 13 years, Donna Chimis noted that she enjoys the relationships that form from support groups. “It is so nice to be able to sit back and relax and be yourself for a little while,” she said. “You can let loose if you have to and know you’ll never be judged by the other moms. Having these people to talk to, to get their opinions and insights on things, is so valuable.”
Trying to make the most of the situation, parents of ill children occasionally get the opportunity to enjoy a very special day, thanks to the generosity of others. Last summer, Alma Carrillo went with her son, husband and daughter to enjoy a Cubs game and meet several members of the team.
“It was really wonderful,” Carrillo said. “We were taken down on the field before the game and right away Carlos Zambrano came over to talk with my son and pose for pictures. Then all of a sudden several other players came over. They were all so nice.”
The Cubs game day was provided by a group of men from Harvest Bible Chapel in Crystal Lake. They donated sky box tickets to a fully-stocked mezzanine suite and helped arrange for the young boy’s chance to go down on the field. “I’ve learned a lot through all of this,” she added. “You wake up each day and thank God for blessing you with another day with your child.”
