For four years, our daughter, Miss Optimism, battled a lung disease. For four years, she was in and out of the hospital. For four years, we worried that we would lose our precious little girl.
It was one of the hardest seasons we’ve walked through in our lives. Miraculously, we were able to find a medication that turned things around for her. We take her every two weeks to get two injections and other than that, her life has been pretty normal for a number of years now, but we are always aware how blessed we are to have her here with us and to have her healthy.
The days of monitoring her every breath, of middle of the night rushes in to Emergency, of surgeries and test results, of night nurses in our home, of our minutes being led by lung function numbers and of wondering if today could be her last are behind us and I am so thankful.
Those years spent in worry and with the stress of trying to juggle her health crisis with raising our other kids and managing day to day life are still easy to bring to memory so I thought I would use our experience to help other families who are living through a similar time now.
I have compiled this list of ways of supporting a family whose child is in the hospital or suffering a chronic or terminal illness to help family and friends best support them. I wish there had been a list like this when we were in our crisis so that I could have pointed others to it when they asked what they could do to help.
I created this list with the help of my friends Shannon and Lindsay. Shannon’s beautiful daughter spent her first 6 months in hospital after being born at 25 weeks gestation and has undergone many surgeries and long hospital stays since then. Lindsay’s little guy bravely battled cancer as a young preschooler and won. I’m honoured to know these amazing women and I’m glad that they were willing to share their insight to help others.
Ideas for supporting a family whose child is in the hospital:
Reassure them that they are good parents.
When they have to hold their child down for a painful medical procedure or make difficult decisions in which no one answer seems like the right one, they will be questioning their worth as a parent. They need reassurance.
Offer to watch the other kids.
I cannot emphasize this one enough. It is impossible to be in two places at one time and as the parent of a sick child, your heart is at the hospital. Not being able to be there with your child because you have to watch your other kids is torturous. Mind you, when you’re at the hospital, you’re also battling guilt for not being with your other kids. Offering to help with child care lightens the load for the family.
Take the other kids to do something fun.
The siblings of a sick child are also affected by things that at a young age, they should not be thinking about such as worrying about their parents and worrying about their brother or sister. They are also wrestling with mixed feelings because they may feel selfish for wanting more of their parents’ attention when they know why the sibling is getting it.
The parents are also feeling a tremendous amount of guilt for what their other kids are going through and what they are missing out on. Taking the other children to do something fun, even just going to a playground for a few hours will not only take their minds off things for awhile, it will take some of the burden of guilt off the parents.
Going grocery shopping and cooking are low on the priority list for the family at this point. Bring a dinner or drop off some freezer meals. You can even get together with others who know the family and organize making a lot of freezer meals for them. (You can make ten beef dump or chicken dump recipes in one hour.)
If cooking isn’t your thing, bring a pizza gift card or a grocery gift card. Drop off a jug of milk and loaf of bread.
Until you’ve been there, you don’t realize how expensive it is to have a child in the hospital. The cost of parking alone is enough to cripple a budget. Then there are expenses like gas to drive to and from the hospital, meals, lost wages, and child care for the other kids. Since we are Canadian, the only addition medical expenses we incurred were prescriptions (and that was hundreds of dollars a month), but in most countries, there is also the cost of medical bills from the hospital stay.
A family whose child is battling illness has enough to worry about without the added stress of finances. Give what you can or pay for a hospital parking pass or gift card for food nearby or gas station gift card. If the family doesn’t have insurance, a larger fundraiser may be needed.
Offer to be the contact person.
It is so helpful for the family if there is one person who can field phone calls, pass on information, update facebook pages, pass along prayer needs, manage Carepages, organize meal needs, pick up donations, etc.
It can become exhausting for the family to have to repeat the same updates over and over, particularly if the news is not positive.
Be a shoulder.
Be there to listen. Simple as that. You don’t need to have the answers or to have been there yourself to just listen.
Don’t shut them out.
Be a friend by still talking to them about what’s going on in your life. You may feel like your trials are trivial compared to theirs and therefore not want to share, but they need distractions and they need to feel as normal as possible. Shutting them out of your life will not protect them. It will only add more hurt.
Bring the fun to them.
While they may not be able to attend dinners out or events, go to their home or the hospital just to hang out with them. It gets lonely there. I used to long for adult company. Bring a laptop with a funny movie or come armed with jokes! Distraction can be a good thing.
Offer to bring food.
If you are going to the hospital to visit (much appreciated by the way), ask if you can stop and bring them some food. When our daughter was at her sickest, I didn’t want to leave her side so I could only eat when visitors would bring me food. Sometimes even just a tea from a familiar coffee shop brought a sense of normalcy and comfort.
Bring something for the child who is sick.
This does not need to be extravagant. This can be as simple as a homemade card or sign with their name on it. It will show their parents and the child that you are thinking of them. It doesn’t hurt to bring something for the other kids too. They are feeling pretty left out as it is.
One year when Miss Optimism had been in and out of the hospital a lot and was not allowed to go outside for many months, a blog reader of mine sent a huge box of books, crafts and activities to keep her busy and cheer her up. She included a board game that all the kids could play, a few treats for the other kids and even some hot chocolate mix for me. It was such a blessing and an encouragement!
Tell the family you are praying for them.
And then actually pray. It’s been my experience that even families who are not faith-based appreciate all the prayers they can get when they are in this type of crisis. You can’t really go wrong with this one.
Don’t be afraid to ask questions. The family want people close to them to be informed and able to help in any way they can. Do be sensitive though.
One day when we had gotten some hard news about our daughter, a friend texted and asked me what her life expectancy was and whether or not she would be able to have children. Those were not questions I felt were appropriate to ask via text message and was paralyzed by the thought of typing an answer.
Sit with their child.
If you come to visit, offer to stay for a bit with the child so that the parent can go to the bathroom, have a shower, go for a walk, go get something to eat, make a phone call in private, or get some fresh air. Those are things most people take for granted but they are hard to come by during a hospital stay.
Ask what you can do.
Maybe they need you to tackle their laundry pile. The family still needs to wear clothes and chances are, that pile is rising by the day and just another source of stress for them. Maybe there are errands that need to be run or things that need to be fixed around the house.
Team up with others.
Of there is a group of you, sit down and figure out who would like to do what and come up with a schedule. That way, the family’s needs can be met and in a more organized way (though disorganized help is still appreciated!).
Be there on big days.
On big days like test results or surgeries, offer to go and sit with the family during the wait. And then, just be there. Hold their hand.
Treat the child who is sick normally.
The child battling illness is still a child. They need to have as much normalcy as possible and that starts with the way others treat them. Talk to them. If hospital policy allows it and the parents agree that it would be a good idea, bring your children to visit them too. Hospitals can be lonely places.
Help their marriage.
Offer to watch the other kids or stay at the hospital with the child who is sick so that the parents can have a date night. Divorce rates are higher among families who have children with a chronic or terminal illness and helping them to protect their marriage is important. Acknowledge the need for them to still be a married couple in the midst of everything they are going through.
Be places they can’t be.
Chauffeuring their other children to lessons or appointments or events, videoing performances and recitals for the parents to watch later. These things are invaluable.
Help with paperwork or note taking.
Often especially early on after a diagnosis, it can be hard for family members to process and remember what doctors are saying. Having someone there to take notes during meetings with the medical team can be very helpful. Also, having someone write a list of questions they want to ask the doctors during the next meeting is a help as well.
Along with a hospital stay comes paperwork. Helping the family fill that out can also lighten the load.
Sitting with one of the parents and helping them come up with a to-do list and then helping them decide how to delegate those tasks is a blessing.
Other ways to help:
- clean their vehicle. It can become a dumping ground with all the trips to and from the hospital.
- buy groceries/stock their pantry (healthy food options help reduce parent’s guilt)
- summer: water grass, maintain their garden, mow the lawn
- winter: shovel snow
- vehicle maintenance including oil changes and gassing up
- lend an iPad or eReader if they don’t have one
- go to the Nurse’s station with the parent’s questions if they don’t want to leave their child’s side
- make and deliver healthy lunches to the school where the other kids go or organize some make ahead school lunches. This daily chore can be overwhelming for parents who are hardly ever home.
- when visiting the hospital, recognize if the parents are needing rest and keep visits short
- on hospital visits, keep the noise level down, be respectful of other patients in shared rooms, be kind to hospital staff as your treatment of them reflects on the family
- make them a playlist of uplifting music
- double check to see if they have a phone charger and bring one if they don’t. In emergency situations, there isn’t time to grab a charger on your way out and it is so needed in the hospital.
- give treats to parents – iTunes gift card, lotions, chocolate, snacks, family movie passes
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