Snacks Make Life Better

Little Lady and me sticking our tounges out and Little Boy looking bored

 

Being mature with my daughter at the doctors office, as always. My son just putting up with us, as always.

I’m stealing away some time to write this. Today is Little Boy’s PH test, which means a feeding tube like thing down his nose and into his esophagus for 24-hours. As you can imagine my toddler is thrilled as can be at this development.

Continue reading

Comforting Things Christians Say To Other Christians That Aren’t Actually Comforting

Small yellow church

I’ve spent the last almost two years holding my son’s hand while he fights cancer. We were solid church-goers before, and our faith has only strengthened. The problem is that a lot of people don’t know what to say, even Christians, so they end up saying some pretty awful things. They don’t mean to. Everyone means well, but a child with cancer… sometimes the right words aren’t always at the tip of our tongue. Some are especially bad but most are just misguided. Here are some of the more misguided ones I receive regularly from well-meaning fellow Christians, that honestly make me cringe every time I share tough news because I know it’s coming.

What’s said: “God has a plan.” This is usually accompanying any of the really, really bad news. The thing is, the whole “God has a plan” thing isn’t helpful… at all. It’s supposed to be a comfort. Typically though, when it’s said, it isn’t. It’s helpful when asking “why is this happening?” It is not helpful when someone is expressing sadness over the pain their child is going through.

Continue reading

It’s 2:36 AM.

sleepy chibi jen
I have binged on chocolate.

I have emptied my junk folder carefully (I have a set the highest spam filter on my blog email that catches everything, even normal emails, thanks to some spammers list I got on).

I have read a couple of Buzzfeed posts.

But most of all, I archived all my cancer support group pages (archiving is when you are still apart of the group but don’t see it in your feed), and even turned off following one of my favorite cancer organizations. And I’m actually proud of myself for doing it.

Continue reading

productivity

My projects make me happy

Sing soft kitty to me

 

My last post was a bit…dramatic. I wanted to let you all know that I really am okay. I had my weekend to wallow, feel hopeless, and cry over my son. Now life keeps moving forward so I decided my next post should be what I am happy about…

I recently got to see my amazing Aussie friend TWICE in two weeks. It’s pretty amazing. We’v been friend’s for years and seen each other once. So getting to see her again, and so much was just fun.

In other good news, a extremely rough draft of the book “When Your Child Has Cancer” is finally finished! I started it in June but have put it down more often than working on it, so it has taken a bit of time. The draft has been given out to a child life specialist of a hospital and program coordinator of a child cancer organization for their feedback. Currently this book is part what to expect, advice for survival, our experience, how to make the best of it all, and encouragement. I think that will be more narrowed down when I figure out what is most needed for patients out there. The big picture is I’d like to do this very small book,  do a Kickstarter or GoFundMe campaign so I can get a real editor and professionally designed cover, as well, raise money to give print copies to hospitals and organizations for free, and throw it online for free too…

My biggest pet peeve when working non-profits is people who want to take over a field, resource, or whatever for the sake of their own power. They can’t provide anything unique, but don’t want to play nice with those who are doing something for whatever cause. They reinvent the wheel for the sake of ego, and take valuable resources away from organizations that already have momentum. I would be horrified if I did this. Hence why my first action is to get feedback from those who disseminate resources to make sure I am filling a need.productivity

Currently I am thinking it could be two type books (and kind of already is): The first is an “intro to resources” type book. The book is very small and brief, and at the end of every chapter can direct parents to other books and resources that they may be interested in.

The second would be a “what to expect” type book… a very brief overview of what to expect outside of the medical part of your child having cancer.

Another thought I had was taking out particular chapters, expanding on them, and making them their own small books… I’ve been particularly am talking about the fundraising for medical bills and how to survive the hospital chapters.

I feel good that it’s at least moving forward more… Also with the same two people I am discussing creating binders with forms for parents of kids to be able to track appointments, medications, surgeries, etc… Something already organized and ready to go. I’m really excited about this one, but right now it’s just an idea.

I love my projects. It keeps me moving forward.

High five