Being a parent is a privilege. But it’s also challenging, especially when your child is ill. To honor and celebrate parent caregivers, we’re sharing 3 parents’ stories. You may find ideas for your own family. But remember, what works for you depends on a number of things, including your child’s age, your parenting style, and your family.
Meet the families
Kathy’s daughter, Lizzie, was born with Diamond-Blackfan anemia, a rare disease where the body doesn’t make red blood cells. As Lizzie got older, her body started having problems. With the support and guidance of her family and health care team, Lizzie made the difficult decision at age 18 to get a transplant.
Lizette’s daughter, Amanda, had sickle cell disease – an inherited blood disorder where red blood cells become hard, sticky and sickle-shaped. These cells can’t carry oxygen well and block blood flow. People with sickle cell disease have repeated episodes of excruciating pain and worsening permanent damage to vital organs. Just as Amanda turned 15 years old, she had a transplant.
Ann’s son, Caleb, was 19 months old when he was diagnosed with a very serious autoimmune disorder called familial hemophagocytic lymphohistiocytosis. Caleb’s immune system didn’t fight infections like it was supposed to. Instead, it damaged Caleb’s own body. He had a transplant just before he turned 2.
Challenges with medicines
“For the most part, Amanda understood why she needed to take her medicines and was good about doing so, but there was 1 medicine that she didn’t want to take that helped control seizures she developed as a result of chemotherapy. Her doctor asked her to take it for at least a year, which she did. But when her doctor told her she needed to keep taking it after that year, Amanda resisted. We tried everything. What finally worked is when we explained the consequences of her not taking the medicine. She was old enough to get her driver’s permit, but we explained that it would be dangerous to her and to others if she drove and wasn’t taking her medicine. Once she could show us that she was committed to taking the medicine, we arranged for her to start driving classes.” – Lizette
“Caleb was so little he didn’t know why he had to take his medicines. He’d fight us and we would have to hold him down so we could squirt them in the back of his mouth. It was hard to do, but we got them in him. As he got older, we tried flavored meds, but he still hated them. Eventually, we found chocolate syrup cut the bitterness of the cyclosporine.” – Ann
Coping with limitations
“We really limited the people who came to visit Amanda because we wanted to lower her chance of getting an infection as much as we could. She understood, but not having interaction with her friends was really hard on her. Amanda also missed being able to go shopping with her friends at the mall. So, I came up with a solution. The mall was too crowded, but Amanda also loved stationery — paper, pens and highlighters were all her thing. We took her to an office supply store since we knew there would be fewer people there. She walked in, wearing her mask of course, breathed in and said, ‘I love that smell of new stationery!’ It was a good way for us to get her out of the house in a safe way, and help her feel normal.” – Lizette
“When Caleb wasn’t healthy enough to go outside, he would sometimes cry at the window because he wanted to play in the yard with his sister, Hannah, who was 5 at the time. So, we made an indoor backyard in the basement. We included an outdoor scene with birds, rabbits and fish painted on the walls, and a fuzzy green blanket for grass.” – Ann
Taking time for yourself
“We live in Arizona and Lizzie’s transplant team was in Minnesota, so that was a challenge. We were fortunate to plan for her older brother and sister, family and friends to make the trip and spend time with Lizzie. This gave my husband and me time to step away and recharge. Throughout those early months after transplant, being able to spend time with her friends was a BIG deal. And her friends were amazing. We scheduled times for them to come and be with her so she was never alone. After a while, her friends knew what to do and how to help her. So by noon most days my job was done. Her friends took over and I managed the big stuff.” – Kathy
“Looking back, I wish I would have accepted more help. At the time, I was so focused on what I had to do, I wasn’t good at letting other people get involved. And frankly, I was terrified at the thought of leaving Caleb with anyone overnight. But it’s so important to take time to yourself, to take care of yourself or go out on a date night. It helped so much to get away for a few hours.” – Ann
Accepting help from others
No one can manage all the responsibilities of being a parent and a caregiver alone. Think about your needs and ask yourself:
- Who has offered to support me and my child?
- What tasks do I have and who can I ask for help?
- When can I schedule 15 minutes for myself?
- What activities help me relax and recharge?
Support and resources for parent caregivers: