May 2015 was the worst Mother’s Day and birthday of my life. Watching over my desperately ill younger son lying in a hospital bed with a maze of tubes coming out of his nose and arm. There is nothing more painful for a Mom than watching your child suffer and worrying about how to make him well. Crohn’s Disease was the ultimate nasty video game monster, spreading inflammation throughout my son’s digestive track with no hope in sight. We lived in two children’s hospitals for eight months straight, taking away our sense of day and night in a time zone of its own. I slept on a “bench” they euphemistically called a sofa every night, afraid to leave him for long.
He is doing much better now, finally stable after two years searching for the right way to control his disease. I am so grateful for every small and large gesture our family and friends made to help us. I will always remember those special moments. During the 5 1/2 months we were in a children’s hospital out of state, my mother and stepfather came to visit us almost every week to give me some time to rest or take a walk, take me out for dinner, and keep us stocked with groceries and other necessities. Friends and other family made visits that cheered us, and sent special gifts, cards, and sweet, encouraging texts and Facebook messages.
This season of Mother’s Day and Father’s Day is such a great opportunity to support and cheer a Mom or Dad whose child has a serious illness or complex medical conditions. Parents of very sick kids dealing with long hospitalizations have to call on super human inner strength and stamina. Pushing back their fear and worry through endless sleepless nights to do their best to care for and nurture their child. This poignant video from SickKids Foundation brings home the internal struggle Moms face every day.
Sometimes it is hard to know what to say or do when someone you care about is struggling with family illness. It is so difficult to see a child or teen suffering and to try to think of what you can do to comfort and help parent and child. But not doing anything because you’re not sure what to say is a lost opportunity to make a difference.
What you can do
Share short, simple supportive comments appropriate to your relationship with the Mom or Dad like, “I’m here for you.” Listen more than talk, and try to avoid convenient sayings like, “Everything happens for a reason.” (I don’t believe my son’s devastating pain and illness happened for a reason.) Or “It will be all right” because honestly, often in these situations we don’t know if it will be all right.
Here are ideas from my experiences. Everyone’s situation is different so tailor to what you know of theirs, what you think is important to them and your level of relationship.
Make a specific offer of how you’d like to help
Rather than more general gestures like “How can I help?”, offer specific examples of what you would like to do. This takes the pressure off the Mom to think of what they might be comfortable requesting. I often felt funny asking for help, especially in the beginning. I didn’t want to inconvenience anyone and I was in the mode of powering through doing everything myself. Offer help with a specific example or two that will make it easier for the parent to accept like, “I would love to do something to help you. Which night this week would be good for me to bring dinner to you in the hospital?” Or “It would mean so much to me to help. Which afternoon this week would be good for me to come to the hospital for 3 hours and hang out with your son while you take a nap or do whatever you want?”
Special ways you can give support
Even with a great hospital staff, parents are often nervous about leaving their child for a long break. They’re worried about their child’s health situation or spirits, or that their child will need something that busy staff won’t be able to give. So offering to stay with their son/daughter while they take a few hours off is priceless. Or if you have multiple people visiting with you, one person could stay with the child while the other takes her out. Taking care of everything, such as driving and taking her out to dinner, to get her hair done, or for a massage. You could also entertain a healthy sibling to give them time away from the hospital doing something fun.
Hospital food gets old fast and isn’t usually very healthy. You could find out if they have a mini refrigerator in the hospital room. If they don’t, ask the hospital about arranging for one. Then you could bring cut up or easy to eat fruits and vegetables, snacks, and other favorite foods. See if there are stores like Trader Joe’s near the hospital where you can pick up healthy snacks and treats. Ask about allergies and preferences for both the parents and children. Their sick child may have special diet limitations but it’s nice to ask if you can bring anything for them. You could also organize a food delivery rotation among their friends and family using google docs or a site like LotsaHelpingHands.com.
Being a caregiver is an emotional roller coaster. A heartfelt compliment can feel so special like, “You’re an amazing Mom. I admire you so much. You’re doing everything a person can.”
Here are other useful gift ideas
Great quality travel coffee mug
Gift card to a coffee shop, cafe or bookstore in walking distance of the hospital
Bring some new pretty but comfortable, flexible clothes like a new shirt or hoody with full zipper.
A gift set with sample sizes of high quality body lotion, shampoo, conditioner and other toiletries.
Dark chocolate covered espresso beans or dark chocolate bars
A funny book or mindless fiction
iTunes or Amazon gift card
Day in and day out Moms do for everyone else. Thank you for thinking about how you can brighten their day. Believe me, it will mean so much to them.