As a parent, you may feel a number of emotions when you learn that your child has a pediatric low-grade glioma (pLGG), a type of slow-growing, cancerous brain or spinal tumor that can develop in children. “Your emotions may range from fear to sorrow to anger or frustration,” says Erica Sirrine, PhD, LCSW, director of social work at St. Jude Children’s Research Hospital in Memphis, Tennessee. And while you may feel a sense of relief that pLGG is not an aggressive cancer, it’s still common to experience grief, because your child’s health has changed significantly.
Your priority will be taking care of your child, but it’s important to look out for yourself, too, during your child’s pLGG treatment. “We can’t pour from an empty cup,” says Dr. Sirrine. “It’s important that your cup is full — or at least that it has some water in it — so you have something left to pour.”
Practicing self-care is a great way to refill your cup. Take a look at the suggestions below and see what resonates most with you. And remember: The self-care strategies that work well for one person might not be that helpful for another, because people process emotions and receive support differently.
1. Explain Your Reality to Family and Friends
Since pLGG grows slowly, your child may not look “sick” — maybe they’re not looking frail or still have all their hair, for example. But you and your child are still dealing with a long-term health battle. “It’s fine to explain, ‘Everything is not okay, even if it looks like my child is okay,’” says Clay Culp, DSW, LCSW, a social worker at St. Jude Children’s Research Hospital. “You can say, ‘This has really turned our lives upside down, and we could use check-ins and words of encouragement.’”
2. Give Yourself Grace
On the flip side, if you just want loved ones to keep you company without talking about your child’s treatment, or if you want some time alone, don’t be afraid to express that. “You don’t always have to be on your A game. It’s okay to be on your C game or your D game,” says Sirrine. “Give yourself grace. Your life is different now, and it takes a little bit of time to adjust to those differences.”
3. Grab Pockets of Time for Yourself
“Putting self-care first is not being selfish. It is key to effectively caring for your child,” says Tammi Young-Saleme, PhD, director of psychosocial services and program development in the division of hematology/oncology at Nationwide Children’s Hospital in Columbus, Ohio.
“Me time” may not seem like it exists, but try to find it. The hospital may have volunteers who can stay with your child for 15 minutes while you go down to the cafeteria to have a cup of coffee or take a short walk outside to call someone you love and get some fresh air. “Friendships can provide comfort, familiarity, and a connection with life outside of cancer,” says Dr. Young-Saleme.
4. Prioritize Connecting With Your Partner
Having a child with a pLGG may strain your relationship. That’s normal, but try to stay in communication. Even if you feel drained at the end of the day and would rather zone out in front of the TV, “Just a little bit of dedicated attention to really hear and listen to each other is really important,” Sirrine notes, especially if you’re separated by distance due to treatment. You can ask how your partner’s day or week was to catch up on everyday things, in addition to discussing what’s happening with your child.
5. Consider Joining a Support Group for Parents of Kids With a Glioma
A pLGG support group may help you process your emotions. Culp notes that parents of kids with pLGG may feel caught between two worlds, emotionally and practically. “You may have a hard time relating to people who have never experienced any kind of tumor with their child,” he says. While you may feel like other parents of kids with pLGG aren’t struggling the way you are, “Whatever you’re going through, there’s somebody else that’s going through that, too. And it is normal and it is okay,” Culp adds.
Check with your child’s hospital to see if they have an in-person or online support group you can join. You can also reach out to the Pediatric Brain Tumor Foundation to find more support groups.
6. Ask for Specific Kinds of Help
It can be challenging to ask for help while your child is being treated for pLGG. But if there’s something specific a friend or family member can do, such as clean your house or start a meal train, tell them.
They really do want to help.
7. Prioritize Sleep
8. Reach Out to Your Child’s Social Worker
Pediatric social workers support not just your child, but also you and other caregivers. Sirrine encourages you to share with social workers the difficult emotions you are experiencing. “The single most important thing that I do oftentimes is helping parents to be a little kinder and gentler with themselves,” Culp notes.
A pediatric social worker can also connect you with a therapist if you’re struggling emotionally, says Young-Saleme.
9. Talk to the Hospital Chaplain
Chaplains are trained to support people of a variety of spiritual and religious beliefs. Some families might want to meditate together, pray together, or attend a chapel service. If your child is being treated far from home, the hospital chaplain can connect you with a local community of faith that’s similar to what you belong to back at home.
“If a family has a spiritual belief system that’s important to them, I would also recommend that they share that with the care team. [The team] can ensure that the family has the resources they need while their child’s in treatment,” says Sirrine.
The Takeaway
- Although it can be easy to ignore your own needs, it’s important to prioritize self-care so you can fill your cup and take good care of your child with pLGG.
- Stay in touch with family and friends — not just about your child’s treatment, but about everyday things, too, to help you maintain a sense of normalcy.
- Lean on your child’s care team, including a social worker and chaplain, and consider joining a support group to connect with other families who understand exactly what you’re going through.
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