We understand how difficult it is when your grandchild is diagnosed with juvenile myositis. We have compiled some new unique ways grandparents can support their grandchildren and their families coping with juvenile myositis (JM):
- Educate Extended Family and Friends: As grandparents you can educate other family members and friends about juvenile myositis. By raising awareness, you can help create a supportive environment and foster understanding among your social circle. JM is often described as an, “invisible,” disease. By taking the time to educate extended family about JM, it could be very beneficial to everyone.
- Get Involved and Model Great JM Choices: It is so important for kids with JM to get plenty of rest, stretch and exercise, eat nutritious foods, and wear sunscreen. It can be isolating for children to have to do these things alone. The next time your grandchild is visiting, try doing these kinds of things together. Do a yoga video together, make a healthy snack with each other, go on a walk where everyone wears sunscreen, and rest together reading books. Not only will this establish great routines for your grandchild, but it will create wonderful memories too!
- Participate in Educational and Fundraising Events: Get involved in fundraising events organized by organizations like Cure JM. This could include participating in the Walk Strong events or the Family Days and Educational Conferences. You might also consider hosting your own DIY fundraisers or spread the word about fundraising campaigns to support JM research and awareness efforts.
- Create Memory Keepsakes of Milestones and Victories from Past and Present: Help create memory keepsakes or scrapbooks documenting special moments with your grandchild. These tangible reminders of happy times can provide comfort and serve as a source of strength during challenging times. Also, take the opportunity to document your family history, traditions, and stories to pass down to future generations. Creating a legacy of resilience and love can provide a sense of continuity and connection for the entire family.
- Provide Respite Care: Offer to provide respite care for your grandchild with JM to give the parents a much-needed break. Whether it’s for a few hours or a few days, giving the parents time to recharge can be immensely beneficial for their well-being.
- Stay Informed and Share Updates: Keep up-to-date with the latest advancements in JM research and treatment options. Share relevant information and updates with the family to empower them with knowledge and hope for the future. You might consider attending the Grandparent Council or the monthly Town Halls offer by Cure JM.
- Coordinate Support Services: Help coordinate support services such as meal deliveries, transportation assistance, or household chores through online platforms or community organizations. Taking on administrative tasks can alleviate some of the logistical burdens on the family.
- Offer Emotional Support to Parents: Provide emotional support to the parents by being a compassionate listener, offering words of encouragement, and reassuring them that they’re not alone in this journey. Grandparents can be a source of strength and comfort during difficult times.
- Stay Connected Virtually: If distance is a barrier, leverage technology to stay connected with the grandchild and their family through video calls, emails, or social media. Regular communication helps maintain a strong bond and shows ongoing support and love. Sending old-fashioned snail mail is also a great joy to children of all ages.
