In summary, here are a few wishes …
- I wish friends and family would just ‘do’ rather than wait to be asked. We have so much to think about, we don’t really know what we want. Plus (for us as a family) we don’t find asking for help easy as it makes us feel like we’re failing in some way. Simple things like cooking a meal, offering to babysit, hospital visits, listening to us rant, cards through the post, actually getting in contact rather than a ‘we are always thinking of you’.
- Please be more proactive and specific, not vague. Some friends said, “hope to see you soon” whereas others said, “when can I visit? Tues, Wed or Fri are good for me.” Guess which one I text back first and arranged to see?
- If you are offering to help, please don’t be too polite. I haven’t got the time or energy to encourage people to come or worry if they’ve been pushed out of line in the pecking order of visitors.
- Please understand that when we say we are OK we aren’t. Little things make all the difference. Normal life goes out the window. At the beginning, I was so busy concentrating on what was happening I forgot to eat.
- When you visit me in the hospital, turn up with food! One visitor brought me a big box of mince pies. If I’d popped into the shop myself I’d probably not have chosen them because making decisions about what to eat when your poorly child can’t eat anything without vomiting is difficult. Those mince pies were lovely.
Some friends/coworkers are afraid to bug me because I must be so busy. In actuality, during treatment, there is lots of waiting and downtime that are better filled with connecting with people than more worrying. Stay connected with me!
- When our child was diagnosed, my head was spinning with thousands of things that needed to be done. Ask me for a list!
- Don’t forget the siblings.
- I really wish some people would have texted more often just to see how we were or to chat for a little about anything. It was pretty lonely being in there with little interaction with the outside world.
- I’m not gonna ask for help, so offer to do something specific, on a specific day. Then I can just say yes please or no thanks.
- Keep asking how my child and family are doing. Being over a year into treatment my child *looks* “normal” but if anything I am finally coming out of the fog of just getting by during that first year of treatment and still need support. I am eternally grateful for the people who always check in on me regularly because sometimes, they check on that one day when I really needed to know I’m not alone.
- Invite me to normal social events.
- So what do we need…company. Either in the ward or drop by the house when we are low in energy. We crave actual conversation & laughter but also for you to listen and develop an actual understanding of this world.
- The thing I would’ve loved most is a few homemade dishes sent up in Tupperware to the hospital as I got completely fed up with the limited choices and fast food.
- DO anything, something, whenever… send a note (send one a month), let us know we are on your mind even if we don’t know you (friend of a friend sent the nicest card), keep sending notes months/years past diagnosis, acknowledge that THIS SUCKS every part of it sucks, every part. I have been so blessed and let’s not kid ourselves money has helped the most with copays, food, and gas etc. but I have been most touched by the personal notes and stories of encouragement that seem to appear at just the right time.
Thank you to everyone who has contributed to this blog so openly and honestly.
Many of us are on a long, bumpy road and we would like to thank everyone who has and continues to support and love us.
We couldn’t do it without you!
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