It’s been an odd kind of weekend, everything seems slightly askew – a little bit out of control – but not in a scary way. Just in a slightly worrisome way.

The kids were home on Thurs and Fri, which was good since there was a teasing and retaliation episode at Hannah’s school (Hannah was the retaliate-or, and unfortunately it involved swinging her heavy backpack – a registered weapon MN – at a kid who was probably just trying to be funny, but who has a history of teasing Hannah and Max so H tends to be ultra-sensitive) So, for the first time in Hannah’s school career (let’s hope the last) she was ‘written up.’ Dang.

She has my sympathy – she’s still learning to control how her emotions and actions collide. But it’s vital that she learn the lesson that when one person behaves like a 5-year old, it doesn’t give the other person permission to behave like a 4-year old. So she spent a morning in the ‘choices room’ – sounds like study hall – and thought a lot.

BREAK – through?
She was feeling very keenly a huge disappointment, though, and this was probably playing in her mind and soul as she was being teased on Wed.

Earlier this Winter Hannah had been part of a group in her class who were told about the Breakthrough Collaborative here in St. Paul. It’s a national organization, run individually, that offers extra support and tutoring to kids in middle school as they move toward college choice.

I’d heard about the program on the radio, but when Hannah came home from the presentation she was GLOWING. She was so excited to apply for it. We looked it up online, but the website was short on details (like application deadlines, or an application itself…)

To me it seemed an answer to a dilemma. The next few years will be rough, we’re gearing up for it, preparing for the ‘trip’, but we don’t really know HOW Gerry’s illness will affect the kids when the s*it hits the fan.

Based on this year’s experience we assume that the disease will follow the path that’s been projected by the Mayo & Gerry’s oncologist – and although we’re hopeful, we’re also realistic.

I lost my own dad when I was 16, and it affected my life much more subtly than I realized at the time. I eventually dropped out of high school (but went to college the next year, I’d been accepted and had decent SAT scores) But I felt adrift because my mom just didn’t have the time and energy to see me through my college application process, or help me with my school work. She was just trying to keep body and soul together.

So when I read about this program I thought, “This could be the bridge that helps Hannah get through what could be an incredibly rough few years, and keep her on track with her education!” Not that I’m looking for a surrogate, but I’ll be happy for any extra help to focus Hannah on the prize.

It’s specifically designed for kids in high needs situations; single parent, low income, minority – so at first glance Hannah might not seem eligible. We spoke to a woman from the BC at the school choice fair in Feb and explained our situation (which was awkward and involved sending the kids off to look at some balloon folding exhibit or something) but there were things that had to be said, and NOT in front of M& H.

We learned that Hannah IS eligible based on a few different criteria, so we were really excited.

Hannah had assumed that when the applications were ready they’d be given to the kids who attended the information session. At least one other kid in her class thought the same thing.

Her teacher did have the applications, but was only handing them out to kids who approached her and asked for them. Hannah hadn’t realized she was supposed to ask – and was shy about it. So we missed the deadline for application.

When Hannah came home last Tuesday and told us she was in tears. It was a very difficult situation, and I called the BC right away and – luckily – spoke to the same woman we’d met at the school choice fair. She remembered us, and said she was pretty shocked not to get an application from Hannah.

At school, when weeks had gone by with no application from her teacher, Hannah figured that the BC must have a late application date. This period coincided with me being away for 2 weeks in NJ and in VA for a week, and I have tremendous guilt for not being here to follow up on the whole thing.

At Hannah’s parent conference, which ironically was to take place that same Tuesday, we brought up the application problem. Her teacher had assumed that 1) Hannah wasn’t interested and 2) Hannah wasn’t eligible.

We both had the feeling that the teacher had been holding the application back – perhaps thinking Hannah’s lack of eligibility made it silly to offer her an application. The conversation that followed was surreal – me explaining, Gerry concurring, that our situation was changing constantly, deteriorating steadily.

Every time we have to talk about Gerry’s disease out loud it just seems unreal. Feeling the need to justify Hannah’s desire to apply for the BC to Hannah’s teacher was awkward, too. It felt as if extra hurdles had been put up, with no warning or explanation of how to jump over them. We’ve already crashed one, but we’re hoping it doesn’t knock us out of the race.

Later in the office we asked if they had an extra application (the woman from the BC said she’d send one to us, but we figured if we had one to start on right away it couldn’t hurt) And once again we were in the awkward situation of explaining to the principal that yes, Hannah IS eligible for the program because – see this guy standing next to me – notice how he’s 6″ shorter than he was this time last year, well, blah blah blah…

God, I get sick of explaining this.

We are a society that is in denial. When folks ask about Gerry and I explain the disease and the prognosis, the response is, “Don’t believe the worst! Have Hope! Things can change!” Lovely sentiments, but I believe they’re being said more for the benefit of the cheerleader than for our benefit.

I don’t think we ARE believing the WORST. We’re being realistic. Yes, things CAN change, and we both hope they do. Desperately.

But hope is expensive. The energy and concentration it takes for us to make each day as rich and full as possible – to get everything out of life that we can – just about saps our resources. There isn’t a lot left over for hope (false, or otherwise) so we just live realistically and – yes – hopefully. But we don’t base our lives on hope.

And this really bothers some folks. I’m not sure why, but folks want to hear, “Yes, we’ll BEAT this thing, it won’t get us!” as if we can just deny, deny, deny and then one day when we’re 88 we’ll go “poof!”

The fact is, disease happens. Sometimes it shortens life. It sucks, and it’s unfair, but it doesn’t have to ruin – or even diminish – a life. We don’t spend every day shopping for caskets, but we also have a realistic outlook on w
here our family will be in 3, 5, 7 years. No one can tell the future, but we can prepare. I know what it’s like to NOT prepare – I experienced that when I saw my mother work like a dog for 10 years to crawl out of the financial hole my dad’s death had put us in.

So if I want to have my daughter apply for a program that’s intended for kids in difficult situations (single parent, low income) I think – given our circumstances – Hannah has a right to.

We’re going to try to apply anyway (with a note from the teacher explaining that she had not passed out the applications) and hope for the best. Right now Hannah seems adrift, I can only imagine how much more detached she could feel as circumstances evolve.

More Detached
When we went to see Jane Eyre on Saturday I sensed a sister-feeling to the young Jane who was chastised for pummeling her teasing, bigger cousin. Even without the enticement of twelve 11-year old actors on stage, Hannah would have been hooked.

It was an excellent production! I notice the costumes – it’s where my heart is at – and these were quite wonderful. The subtle differences between styles presented so much information subconsciously. The set and costumes were the work of the same designer – Patrick Clark – and it all worked beautifully together. Excellent staging, a wonderful adaptation, and top rate acting – it was one of the most enjoyable afternoons I’ve spent at the theater. Just being at the Guthrie felt like a religious experience.

It’s been years since I’ve seen a play – I hesitate to go because it dredges up so many deferred (denied?) dreams. I love costuming, and perhaps someday I’ll return to it (when the kids are older) but for now I channel the need to dress folks up in period bodices into my hand knitting design.

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