Moms share their stories and their advice.
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Moments after her youngest child Maxwell was born, Nicole Deutekom knew something was wrong. “The doctors wouldn’t let me see him,” says Nicole. “I felt sick to my stomach, and kept asking if Max was okay.”
Born with a reddish-purple birthmark known as a ‘port-wine stain’ down the left side of his little body and across his face, Max spent the first seven days of his life in the ICU under the watchful eye of doctors, nurses and family members.
Suspected of having Sturge Weber Syndrome, a rare congenital neurological and skin disorder, Max was just nine days old when he made his first trip to SickKids hospital in Toronto. That visit was to be the first of many.
Every year in Canada, thousands of parents face the challenging task of caring for a severely ill or injured child. Many families are forced to adjust to a new lifestyle, a whirlwind of doctors’ appointments, medications, expenses and travel. How do parents manage it all while maintaining households, holding a job, devoting time to relationships and caring for other children? We asked parents and health professionals to share some tips and tools for managing these challenges.
Tip 1: Get organized
“It was very traumatic and stressful trying to get Max to all of his appointments while taking care of three other kids,” says Nicole, “but you learn to manage it all. It’s about getting organized.”
Lori Ives-Baine, Grief Support Coordinator for the Paediatric Advanced Care Team at SickKids, echoes Nicole’s sentiment. She says building support networks is the key to getting and staying organized. “Assign someone in your family or friend unit to be your communicator. If people are asking what they can do to help – whether it’s organizing a food list, picking up your kids from school or extracurriculars, let that designated communicator manage it all,” says Ives-Baine.
After his diagnosis of Sturge Weber Syndrome, Max had to endure several life-threatening surgeries, including one to disconnect the left hemisphere of his brain from the right to help prevent convulsive seizures. Being able to accept help from friends, family and even strangers has been “a life saver,” says Nicole.
Before Max’s brain surgery, neighbours rallied together to host a yard sale, raising money to help offset the expenses of Max’s care. People in the community brought meals over, and friends made t-shirts affirming their support for Max.
“It’s incredible to see the community rally behind you. Everyone wants to help. And it’s important to let them,” says Nicole.
Tip 2: Communicate clearly
For parents of a sick or severely injured child, strong communication is crucial. From healthcare professionals including doctors, nurses and social workers, to community members, friends and family, clear and considerate communication ensures the best possible support for your child.
Being honest and open with loved ones, including children, is often beneficial to the overall care of a sick child. Max was only four months old when he began experiencing frequent seizures. His siblings, Lucas, 10, Jaiden, 6, and Isabella, 4, helped to hold his head, remaining by his side while Nicole called 911 and hurriedly assembled Max’s medications.
“We didn’t want to shelter the kids,” explains Nicole. “It was important to us that they knew how to respond appropriately if they ever saw Max having a seizure.”
It’s important to figure out what your children understand about their sibling’s sickness or injury, says Anne Leavens, Bereavement Facilitator at Hospice Peterborough and Clinical Counsellor at Peterborough Youth Services. “If you can, correct or elaborate on what your child already knows using proper terms. A lot of times when talking about illness [or injury] we use euphemisms, which creates confusion. Learning how to communicate will be one of your most valuable tools.”
Karry Murphy, whose son Caleb was born with Down syndrome and a partial block of the duodenum, says communication and knowledge have been essential for her throughout the care process. “Most times doctors see your child for 10 minutes. They don’t know their whole history, the severity of their symptoms, and the frequency. You need to be able to advocate for your child and paint the whole picture,” says Karry.
One way to help keep the whole picture intact is by documenting the process. According to Ives-Baine, recording what’s happening in your life and your child’s life will help you communicate with doctors.
Stationed beside Max at SickKids hospital day after day, Nicole began documenting both her and Max’s experiences through social media. She created a Facebook group dedicated to Max’s health updates and positive feedback began pouring in. Today more than 1,000 members belong to the group, and the Deutekoms receive love and encouragement from friends, family and acquaintances.
Through social media, Nicole was also able to connect with other families affected by Sturge Weber Syndrome. With only 1 in 55,000 people diagnosed with the condition, it was a relief for Nicole to find other parents to whom she could relate. “It was a weight off my chest to know we weren’t alone; that other families have been through the same thing and their children are doing well,” says Nicole.
Karry found comfort and support through social media and smart-phone technology as well. “I could FaceTime with my daughter Morgan and say good night while I was away at appointments with Caleb,” says Karry. “We could text photos back and forth. It was a great way to feel connected.”
Tip 3: Make time for you
The buildup of appointments and mounting visits to SickKids made it almost impossible to balance the demands of work, and Nicole eventually took a medical leave from her workplace so she could be at Max’s side.
“Taking care of a sick child consumes you. You can’t do your day job when you’re worried about your child all the time,” says Nicole. “Being able to be there with him through this process has been so powerful.”
Through the Canadian government, parents who have to be away from work to provide care and support for their critically ill or injured child are eligible for Employment Insurance (EI) special benefits for Parents of Critically Ill Children (PCIC) for a maximum of 35 weeks.
“Though it may take courage, accessing financial supports means parents can direct more energy to focusing on their child as well as themselves,” says Ives-Baine.
Receiving a medical leave freed up some of Nicole’s time, but she was exhausted. Acutely aware and attuned to Max’s health concerns 24/7, the stress was overwhelming at times, and Nicole decided to make a change. In order to be her strongest self for Max, she needed to take better care of herself.
While the rest of her family sleeps, Nicole wakes up at 5 a.m, straps on her running shoes, and heads into the darkness for a morning run. She listens to music and sings her heart out, pacing along the road one step at a time until she arrives home to start her day. This self-care routine has given Nicole the strength to be the best mother she can be.
“This whole experience with Max has made me a stronger, healthier person. On top of looking after my family, I learned to look after myself,” says Nicole. “You have to reorganize when and how you do things and maybe it’s not the most ideal, but you can enjoy the small things, and live life to the fullest with your family.”
