Day 63 – no, I did NOT go to Crossfit…and $ mission

Yeah, okay, fine.

I didn’t go to Crossfit AGAIN today. This is really stupid.

It’s the “I’m curled up in bed, H is curled up in bed, I don’t wanna get up” thing. Also likely one should sprinkle in a healthy dose of “I just want to be fit again and do whatever I want like I could when I was 20, maybe if I go back to sleep this will all be a bad dream…” (laugh – kinda!)

SO, I said a while back what I would “do with the money” should R and I wind up winning The Amazing Race, against all odds. I said that it would come out to like $250k each – and that I would take H to a great trip to Greece/Turkey (which we’ve both always wanted to do) on that money. It could also put us far closer to H being able to retire.

But let’s just pretend (hey, this is my Daydream, right?) that a Travelocity “benefit” of having won was – ta da! – a first class trip anywhere that you want to go, for each participant, for 2. (That’s always been one of my questions – as in, if it’s two friends doing TAR and they win a travel trip, do they only get to go together? Or do they get a “trip for 2” each? Inquiring minds…)

Anyway –

So my grandboy Caleb has had some terrible TERRIBLE luck recently. For at least ten weeks now (maybe more), he’s been subject to something going VERY wrong with him. We’re talking incredible, awful pain that the doctors can’t get to the bottom of. It could be (as his grandmother had a gall bladder issue that didn’t present with any specific body chemicals showing that it was going in) a gall bladder thing. But whatever it is, he hasn’t been able to go to school, and has basically been eating nothing for 10 weeks – and hasn’t lost any weight, and is still screaming with pain for hours and hours. This is NOT a guy who would have this “all in his head” – he’s your usual “nearly 13 year old” boy, who could talk your ears off, and who is sensitive, but who wouldn’t just “make up” this sort of pain. He’s pretty Stoic, as evidenced by when he had a thing stuck in his foot that we were trying to get out back before he went to Boy Scouts Jamboree. He’s helpful, kind, a great all-around guy.

He’s also in a new school – which REALLY sucks – he leaves to go to this new school, is there for like maybe a day or two, and then this set in. So he’s getting more and more behind – and the “home school” stuff is IDIOTIC and I’m afraid he’s going to get held back once we get to the bottom of all this.

How do I have a grandson? It’s sort of a convoluted story, but the crux of it is that a friend’s Mom passed away and she was afraid that her kids would never really “have a grandma” – just as I found out that I couldn’t have kids. I hadn’t planned to be “that woman that never had kids” – but so it goes. That’s the short version, but I’m basically the only grandma these boys “know” – and it’s been this way for…wow, about 5 years? From about when Caleb was somewhere around….8? And when Cody was somewhere around…5?

They live in Utah which SUCKS because not only I, but my Mom, would be there constantly to try to soothe all this and give the parents a break. The other thing that worries me is something I’ve seen time and again when a sibling has a disease of some kind – the “other” child winds up acting out, because they’re not getting the “attention” that they were used to. Something has to give when time is being spent on one child – and try as you might, it usually comes from the time otherwise spent with the “well” child.

ANYWAY – so I realized today in the car when hearing that yet another test came up negative, that H and I have been talking for forever that “when we’re not here any more,” that we want to have a Trust with the bulk of our assets going into it. We’ve written up our wills and trusts this way. The Sandy and Herbert Trust ;-)

We’ve talked about various things that  the trust could benefit – but I know now. I want it to benefit kids with pain. And their siblings. And their parents. I was talking once with a couple of gals in Denver – one had had a daughter with cancer. She said that if someone had just shown up during those long, long hours she was in the hospital with a glass of wine and some chocolate, she would have probably paid $100 for it. Imagine a website where you can do that for a Mom or Dad with a sick kid? Where you could get a meditation or hypnosis CD made specifically for the child who is sick, to help them in a “biofeedback” sort of way? Or a space where siblings could go to discuss their feelings, or even just receive one-on-one attention – whether being taken to the zoo, given some credits to an online game, etc.? There might be something like this already – I do know that the Leukemia & Lymphoma Society does things for families (and that is why I support them through marathons, triathlons, etc.) – not just “finding the cure.” The non-profit would pay to have the website designed, and for beta tests with families going through things like Caleb is. There was a New York Times article on a young girl in a similar situation who was ultimately treated at the Mayo Clinic – I’d fly out and take that doctor out for a weekend “brain retreat” and find out what he thinks would be the first order of business in this area. Then I’d get to it. In fact, Caleb’s Mom could run the whole thing. Hey, I can dream, right?

Today at our local corner market, I saw a little boy that was like a Sherman tank, fearless, happy, giggling, and SO CUTE! How old is a kid right when they are learning to walk? 9 months? He came up to me as I was getting a cup of coffee. His Mom actually works at the store (so she knows me) – though I’d never met her son before. He walked right up to me brazenly with a huge smile, and pointed “up” (that’s the benefit of being over 6′ tall – I get that pretty often from little kids!) So I scooped him up, laughing, and held him up over my head, then sucked on his fingers (they tasted like apples), buzzy-kissed his stomach, and then held him upside down as he squealed in glee. It was like a little fizzy ball of happiness incarnate. That’s what made me think of Caleb – how he’s just in pain ALL the TIME. How awful this is – how he feels like “people don’t believe him,” and how this is changing who HE is. The pain is changing “Him.

So that’s what I want the Trust to do. I want it to benefit children who are in pain – particularly, if no one can figure out what that pain “is.” I’m not sure how one would describe the “mission” of that Trust, but that’s what I want it to be. The “difference” between this little boy in the market and my sweet grandboy and what he’s going through made me realize that This Was It.

So – that’s what my $ will go to – it will go towards some fun stuff for H and me, sure, but it’s going to go towards starting this Trust. I feel REALLY strongly about that – and I think that the memory of this super duper happy little ball of boy juxtaposed against my poor sweet grandboy will keep me going, and that’s a fact.