THE COMPASS

Stories from Friends and Families

If you are a friend, family, or health care provider, it is not always easy to know what to do or say to parents when they are going through a medical crisis or loss of a child. This section will offer a few ideas on how to be a supportive individual during this challenging time.

“What can I do to help?”

This can be a difficult question to answer when all of your energy is going into caring for your sick child, or worse yet, grieving their loss. It can be difficult to think of how to meet your basic needs or the needs of other members of your family when you are struggling just to breathe. We hope that this list makes it a little easier for those friends and family to decide in which way to offer their help during your time of need.

This is a compilation of suggestions from families with a child who was given a major life-altering diagnosis, a child who has spent a significant amount of time in the hospital or who has had a child die.

If you truly want to help, don’t just offer – pick one of these to do from the list below. The family will be so truly appreciative of whatever you choose.

• Add a meal or two to their freezer.
• Offer to drop off food at the hospital at meal times – including disposable plates, cutlery and dishes that you do not expect back. Respect the fact that the family may not be up to visitors, but it does not mean that they are not appreciative.
• Bring fruit! Fruit baskets, fruit arrangements, fruit salads. It is nice to have something healthy that does not need to be heated up.
• Help to organize meals for the first 30 days – mealtrain.comis a great resource. Put out a cooler at the home so that people dropping off meals have somewhere to put them in case the family is busy or not at home right then.
• If there are other children involved, try to help out in a way that is natural for you. Often parents are consumed with the sick child or the loss of their child and knowing that their other children are being cared for and are having fun helps them feel less guilty. Some ideas: play, read books, do lego, offer to pick them up and take them on an outing somewhere – swimming, the park, etc.
• Drop off baked goods.
• If you would like to send flowers, choose ones that are easy to care for and require little maintenance. Better yet, have fresh flowers and a kind note waiting for them at home. Balloons are a good alternative for in hospital because of allergies.
• Bring a piece of home to the hospital – offer to pick up anything that
  they may need and bring it to the hospital. This might include a favourite pillow/blanket/stuffie, clothes, personal items or medications.
• Arrange for someone to come to the hospital to give the parent a neck and scalp massage.
• Help out around their house – send them a few dates where you are available, and show up to clean, do laundry, vacuum, dust or just tidy up. If they are living in the hospital, just go over and clean everything.
• Put a tea basket together. Maybe add some chocolate.
• Run errands for them.
• Help with yard work like mowing the lawn, pulling weeds or raking leaves.
• Bring them a beautiful journal to capture their overwhelming emotions and thoughts.
• Offer to bring breakfast.
• Don’t be afraid to be curious and to ask and learn about the illness. It shows you care.
• Offer to help set up a blog for them if they enjoy writing and would find it therapeutic.
• Get a group of friends together and work on a project. Build a fence, for example, or fix a deck.
• Make something for their child using your talents that is specific to their condition – if their child has hydrocephalus, for example, crochet the child a special toque to fit their head. If they have sensory issues make a weighted blanket.
• Offer a listening ear.
• Offer to take the parent out to a nearby restaurant or to take them for a pedicure to a nearby spa. Ensure that they explain to the spa that the parent’s child is in the hospital and they may need to cancel without giving adequate notice.
• Bring something special just for the siblings. The sick child tends to get a lot of gifts so it is nice to surprise the other children with something special also.

For the family whose child has died:

• Do any of the above.
• Do not be afraid to talk about their child. Acknowledge their child by name and reminisce about them with the family. Parents love talking about their children whether they are here or not.
• Do something to acknowledge each anniversary date – one month, two months, three months, six months, one year, two years, etc. Even just a handwritten note using the child’s name is perfect.
• Do something to honour their child, like tree/flower planting, a star donation, a donation to their charity of choice in their child’s name, a painting, or memorial jewelry.
• If you are talented, write a poem or make a beautiful scrapbook of their child or cards that were given to the family at the memorial/funeral.
• Be there for six months, one year, five years or 10 years down the road. Grieving the loss of your child is a lifelong journey.

“What do you say?”

Here are a few comments that families have shared with us that they found supportive and ones that were not. The truth is there are no rules of what to say. There are, however, definitely some things that are more comforting.

Supportive things to say:

• I am so sorry for the illness of your child.
• I wish I had the right words. Just know I care.
• I don’t know how you feel, but I am here to help.
• You and your loved one will be in my thoughts and prayers.
• I am always just a phone call away.
• We all need help at times like this. I am here for you.
• I am usually up early or late, if you need anything.
• How is your spouse, other children, or grandparents doing?
• It is so nice to see you. (Instead of “how are you?” Only ask that if you want to hear an honest answer.)

Supportive comments focused on the loss of a child:

• Tell me about (Name)’s last day.
• I remember this about (Name).
• I am so sorry for your loss.
• My favourite memory of (Name)is….
• Ask what happened and listen to the whole story with attentiveness.
• I am sorry that your child couldn’t stay here on earth with you longer.

Remember:

• Ask something about the child every time you see their parent.
• Realize that parents love talking about the child and even if they cry, that is OK. No one can ever make them more sad about her; that has already happened.
• Ask to see photos of the child.

Unsupportive things you want to avoid saying:

• God only gives you things you can handle.
• It will make you a better person.
• I know what you are going through. (Don’t say this unless you do.)
• Special kids are for special parents.
• I don’t know how you do it.
• Tomorrow is another day.
• Everything happens for a reason.

Unsupportive comments after losing a child

• Comparing their loss to the loss of a pet.
• That it’s God’s will, or that it’s for the best.
• He/She’s in a better place
• Do you think you are depressed?
• Are you better now/yet?
• Are you over it?