I wrote my PhD dissertation about children and families living with HIV! This was done in the 90s at the University of Calgary and the Hospital for Sick Kids in Toronto. I also have done many studies around other illnesses, like congenital heart disease and epilepsy.
My number one piece of advice, based on my own research in this area, is that it is important that the illness does not become the main "thing" in the family's life. This is really hard to do, especially with a chronic illness or illness that has a long duration. However, if families are able to be a family first, and deal with the illness second, then things stay more balanced in the home. It is important for families to try as much as possible to stick to set rules routines. Find a rythm. And, really important, to do really fun things as a family whenever they can. This is important for the siblings of the child with an illness. These are the times when it is really important to have family games night, movie night, and "let's make pizza" nights.
I would encourage families to celebrate medical milestones. Yeah, that round of chemotherapy is finished! Yeah, that is one less surgery we now need to go through! It can be difficult to keep your spirits up and it is really important to count all the blessings and milestones along the way.
This is really the time to call on support from your family and friends. Ask your network to help with meals and driving to appointments. This is incredibly important and cannot be underestimated.
Finally, cherish each other. Nurture each other. Spell each other off from long nights at the hospital to allow each other to get a good rest. Leave little notes of encouragement in pockets/shoes. Send supportive texts. Get a sitter and allow each other the space to reconnect. Allow each other the space to cry and process emotions. And most of all, give each other big hugs!
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