Devarda’s son, Malcolm, was in Georgetown University Hospital being treated for a brain tumor when a social worker told them about Special Love and what a great organization it was:
“She said it offered fun camp experiences to kids with life threatening illnesses, as well as family weekend camp experiences with parent sessions that allowed parents to meet each other, share their personal experiences with having a sick child, and be a support to one another.”
Devarda and Malcolm attended one of Special Love’s family weekends and she thought they were done (she says she checked it on her "To Do List"), but Malcolm had other ideas. He said he heard the other kids talking about Camp Fantastic and wanted to join them. When Devarda, who wanted to get away from all cancer reminders, asked him why in the world he wanted to go, Malcolm said, "Because Mom, I want to be with kids like me and I had fun!" It was a sobering lesson for Devarda:
“I realize that Special Love was about kinship, acceptance, belonging and having a ‘special home base’ uniquely his own.”
While Devarda and her husband, Jeff, served as camp volunteers at some of the earlier family camps they attended, it was Malcolm who continued to volunteer at Special Love activities once he was too old to be a camper. He has helped for nearly two decades, even serving a brief stint as a board member. He visits campers in the hospital and attends the occasional memorial service, including for one of his best friends who passed a year ago after relapsing. Malcolm still stays in contact with his friend's mother, grandmother, and sister.
Devarda’s attitude toward cancer – especially other families who are battling it – has changed over the years and she now gladly offers advice to those newly diagnosed or midstream in their child’s treatment:
- Tell your family and friends when you need help and support – it’s ok to ask for help with errands, meals, etc.
- Identify and utilize your team of supporters and be open to attending Special Love’s family camp events. They can be your "home base" of safety, familiarity, kindness, understanding, and comfort.
- Learn from your child. Be inspired by their resilience, positivity, courage, and hope.
- Allow yourself to take moments alone, to take breaks for a rest period, a nap, a good cry, or just to stare in space.
- Pray for strength, call on the God of your own understanding and just pray "Help" when you are too exhausted and overwhelmed to find the words to pray. Reach out to your faith community.
- Ask others to pray with you and for you, your loved one, your entire family, and all your medical team. GET WEEKLY MASSAGES even if it’s a 15-minute chair massage.
- Designate someone to be your "updater," or email brief updates 1-2 times a week. Spare yourself from having to repeat and update a long list of friends and relatives.
- It's ok to say, admit, or write down that about which you are angry or with whom you are angry. It's Ok to acknowledge your fears, have doubts, and express your feelings of helplessness, sadness, betrayal or whatever.
- Say at least one thing you are grateful for every morning and at least one thing you are grateful for at night even if all you are grateful for is having a soft pillow under your head.
- Identify 1 and 1 every day. Force yourself to do this even when you don't feel like doing so.
- Stay hopeful and learn how to look at the glass as half full instead of half empty.
- Keep up with your own medical appointments, follow ups, and annual exams.
- Prioritize everything and everyone. If it's not a "911," put it on the back burner.
- Make time for your other children - give a lot of "really great hugs". Taking their needs and feelings into account is necessary.
- Have time with your spouse or significant other.