Remember 234 years ago when I announced my desire to start a non-profit? Well, I'm filling out paperwork for the IRS to complete that process.
But part of that process involves a vision for Five Skies.
My vision was to help families who have chronically ill children in and out of the hospital.
How?
I'd like ideas.
Maid service?
Sitting with your child while you get some needed rest or away time? It's draining being a caregiver.
Gifts for siblings?
A masseuse to come to the hospital to give you a neck and shoulder rub to try to heal from those awful, low down dirty parent "beds"?
Visa gift cards for food and gas and other essentials?
Food baskets?
What does a family need when their child is in and out of hospitals repeatedly? (Besides answers and solutions to the obvious).
I permit anonymous comments here. Please post some ideas.
12 comments:
Everthing you said. I wonder, also, if there is any way that people could donate their paid time off (pto) to other people who need it because their children are hospitalized with long-term illness? That might be too complicated to organize unless you could focus on just one company or something. But it's an idea...
That very thing happened when I was off for a longer-than-expected period of time when Brody was born. But it only works in the same company, within the same class of employee. Maybe some kind of corporate matching program though. . .
Perhaps facilitate some sort of local support group(s) or 1-on-1s or even an online support system (which it sounds like you already have going, since I've read your posts about Dante/Dante's parents), so that parents can get the outlet and support and love that they need from others that understand what they are going through.
I love all of the ideas thus far. I think that taking care of things at home (siblings/meals/money) would be a great relief. Even gas and parking expenses add up to considerable amounts. I like the concept of being able to directly help -- like here's a problem and FIVESKIES! here's a solution.
Didn't we also talk about offering some sort of way to organize the family's existing community? Like everyone wants to help and nobody knows what to do and the family is just too overwhelmed to tackle it?
This website is a group here in Illinois that has been a godsend to families of my patients.
www.normalmoments.org
The founder is a fabulous women who has helped my girlfriend thru some tough times. I am sure she would be willing to help you get your feet wet! She is on facebook too!
Good luck!
A book that tells them what to expect, how to avoid hassles, where to get help on various issues, how to find an advocate, support groups, what your experience was like, what you learned. I bet that would be the best thing you could do--maybe do it with another parent who's had a somewhat different trajectory.
I could give you a hundred ideas, but even more helpful would be an organization that asked each individual family what they needed. We are often visited by organizations at various hospitals who offer specific needs that just never seem to fit at the time(sitting with our child- nope he screams when we leave, gas cards- thanks but we flew here, spiritual books and tapes- you're freakin kidding right?, waiver of fees on new home medical equipment- no thanks we'll keep our cruddy old infusion pump that we can repair ourselves over your high tech new one). Just an idea- Lori
www.caringbridge.org/visit/benjidennison
Thank you everyone! And Lori, I was hoping hoping hoping you would comment! And I love your idea. We could do a bit of everything, driven by what the FAMILY needs at the moment. But do you think someone would feel awkward abt saying "This is what we need right now" ? Of course, we're asking first. . .I like that take. One of the things I'm most grateful for when B was in the NICU is my neighbor who poured cement and repaired a fence post. Without us even knowing it needed to be done. But I think a lot of the time it is those idiosyncratic things that a family needs, and I would have never predicted.
Thanks again!
I love all of the ideas. They have an organization here at Kentucky Childrens Hospital, where families are sort of adopted by sororities and they do special things for that certain family. Its an idea you could adapt from. That way you know the needs that that certain family needs at that time. Maybe families that are involved with your organization can take on a family and do simple things like send cards or carepackages to the kids. Little simple things mean the world. But the other ideas you had are wonderful, like maid service and gas fees. This is a wonderful thing you are doing. Thanks :)
Hi Chris, Good for you!!! Just you wanting to help says LOTS! You may remember when Dante relapsed, I said on my CP, I don't know what we need just guess! That seemed to get to people. There are several things that helped us while we were living in the hospital, you and the IV girls sent Visa gift cards, they were great because they weren't type specific, I could use them anywhere. I needed underwear, or hair ties, I could go to the store or the gift shop. Cafeteria gift cards, there was always a way to get food that way. Hosted dinners on the floor donated by someone, especially on holidays when everyone forgot about us (Christmas everything was closed, there was no food anywhere) When Dante came out of transplant, someone came to my house and scrubbed it top to bottom, it was amazing. I wish I could get a cleaning service (or an organization professional) now, I've have yet to recover. Around Christmas we got "Mom and Dad bags" full of stuff. Socks, little fleece blankets, lotion, a book, crossword puzzles etc. A list of local places too, we were at CHop for months, and had no idea there were restaurants, stores, news stands etc around. That would have been nice to know. Another list of religious services, ALL religions, in the hospital, we had Christian, and Jewish, that didn't help us much. Things to avoid, stuffed animals, blankets, and little toys. The kids have plenty, most likely they have their favorites anyway. Oh someone to sit with your child? Not gonna happen for most kids, they want their parents, how about a volunteer to just come sit with mom or dad and the child. The hospital is a lonely place, sometimes having someone to talk to is the best medicine. I'll let you know if I remember anymore.
Great job!
Love ya,
Joey
What I've always thought was needed was a resource for the resources. Sounds silly, I know, but there are already tons and tons and tons of resources out there for help...it's just a matter of finding the ones you need when you need them.
Here's what I imagine - a database or clearing house of all the various resources categorized by services offered and location. So, when someone needs something they can find it...whatever it is.
But, even more importantly people need to know it's available. I can't tell you how many wonderful services and such I have found out about AFTER they were needed. There are so many wonderful organizations out there, so many caring and generous people, so much help available but it's all pointless if you don't know about it when you need it.
I think it would be wonderful if there was an organization out there with the entire purpose of connecting people with the resources they need...whether they be financial, spiritual, tangible, or support-based. It could connect hospital social workers, bedside nurses, support groups, charity organizations, service groups, religious organizations, etc to the people who need the help.
Whatever it is you decide to do, include marketing/advertising/communication in a big chunk of your budget. I think there are WAY too many organizations out there with wonderful services that don't get nearly the use they should just because people don't know about them.
PS - I think you're GREAT! WAY TO GO!!!! I'm so excited to see how this all turns out and would love to help you in any way.
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