Five weeks and life is strange

Things have gotten better to be sure.

I think it's progress that I don't instantly get a tear in my eye or a lump in my throat every time I see one of the pictures of Ollie in the living room. What I do feel is a little sensation of falling - sort of what you get when you catch a bit of air driving over a small rise or first begin the long dive after cresting the hill of a roller coaster.

Usually, it's just that little bit of sensation. Usually.

Sometimes it's the beginning of a no-holds-barred emotional thrill ride and you pray to God that the brakes on the coaster/train/car are working. If they aren't, sometimes you collide with a brick wall, sometimes it's a "soft" landing into a sand trap. Sand traps mean you might have to close the door to your office and sit quietly a few minutes, brick walls mean you probably need a lot of Kleenexes and a dark room.

But there are positives moments now.

More and more frequently, when I think of Ollie, I can think of good times and not be filled with a terrible regret that we aren't still creating new stories and new moments. I can enjoy the many beautiful memories for what they are - a precious little gift from a special little boy that reminds his daddy that there were indeed some very good times.

The beginning of football season has been hard. Last fall, our little man would sit quietly for HOURS in the crook of my arm watching those funny men run across that green field. He only made noise when the commercials came on - or someone changed the channel - smart boy, that one. That is one of the fondest memories I'll carry forward of Ollie and it really makes the fall a bittersweet time. Right now, he should be throwing that little mini-football (probably backwards over his head, of course).

Recently, someone who had also lost their son far too early described the feeling as having a stomachache that doesn't go away. I've thought about it and can come up with no more apt description of what we are going through. A mass is sitting in the core of your gut and it just sits there gnawing. You feel it lessening, but sometimes the best you can do is be distracted. (Thank you friends and family) At anytime, Bekka and I might be having a moment of quiet (or not so quiet) desperation.

A couple of weeks ago, the good memories were the hard memories. The bad memories, save for that final horrible night, have been in many ways easier to block out. Who wants to remember having to stick a plastic tube down their little boy's windpipe? Or hooking a tube up to his stomach to feed him every few hours, or using a machine to try and make him cough 8 times a day?

That's not what Ollie's life was about. Ollie's life was about loving every moment BETWEEN the painful events. He did this without fail, and now his mama and I are trying to do the same.

As we try to figure out job situations, medical bills, COBRA payments and all the other debris left over from a short but complicated life, we try to take a little time to love each other and each moment just a little bit more.

The challenge is that we now have many more free moments.

Of Robinul and Job Loss...

So two disappointing things to report today (Please pardon the somewhat bitter tone)

1. The issues with secretion thickening due to the Robinul have resulted in several de-sat incidents that have forced us to wean Ollie from the medication. In a couple of days, we are probably going to try again at 1/2 dose to see if that will help secretion amounts, but without the excessive thickening.

2. As of last Sunday, Bekka no longer has a job. Well, at least not one with benefits. Her FMLA leave was finally exhausted and being bound hand and literal foot by corporate policy, she was reduced to part time with the requisite pay cut. They have been wonderfully flexible with Bekka and her schedule, but time was not on our side. In many ways we never expected Oliver to make it this long, but he's been such a champ and an unexpectedly strong little boy!

There is a terrible irony in this story: We are pretty sure the only reason this happened when it did is because we called to ask about Bekka's status. We were trying to be proactive and make plans for ourselves and Ollie over the coming months and I asked Bekka to call HR to see where we stood. They hadn't the foggiest idea. It took them over a week to figure out her leave balance. She confirmed it one night by sitting down with all her pay stubs and adding up time worked.

Unfortunately, they let Bekka know Friday morning (6/5) that retroactive to 5/31 she was part time. One really wonders that had we simply played the military's game of "don't ask, don't tell",
if we might have gone indefinitely before someone figured it out. Who knows!

Would that have been "moral"? I don't know, but we are the ones with a terminally ill child, so our judgment might be clouded on the question.

It should be noted that all of Bekka's local coworkers and her entire management chain have been nothing short of fantastic. Wonderfully warm and supportive people all and all equally disappointed in how things resolved! This is strictly a corporate issue and it's not unique to Stride Rite. We aren't angry with Stride Rite. We think they have been more supportive than many companies would have been in the same position. We ARE angry about the difficulties involved in this entire process when we really just want to take care of our little boy.

So where does this leave us? Honestly, things wouldn't be so bad if I didn't work for the state. Working for a government that some sources now rank 50th in the nation in support for worker's families, it's actually better for us to COBRA Bekka and Ollie at the cost of $671 a month out of pocket than it is for us to put them on my insurance.

Yep. You read that right.

It would be a little cheaper (but not a lot!) to put them on my insurance each month, but the loss of benefits is too large. The things not covered by the state or at higher costs are legion. If you had any misconceptions about the "great benefits" offered by the state, you can put those to bed now.

It will be interesting to see what happens to the state employee base when economic conditions begin improving...they made multiple "adjustments" to our health plan this year that resulted in the doubling of deductibles and many copays while also increasing the costs for family coverage. It's quite obvious state employees aren't resources - they are the proverbial cogs in the machine, and it's doubly obvious they really only want healthy single people working there now.

So who wants to step up and tell me just how awesome the American medical and insurance system is right now? Bueller? Bueller?

For happier news, see the post I'm about to make...