A plea for positive thoughts

Tomorrow at 11:30am (EST) we have an appeal hearing scheduled with North Carolina's Division of Social Services to request that they overturn their decision to deny Sam Medicaid benefits through their Community Alternatives Program. A Community Alternatives Program (CAP) is one which waves the parents' income and bases eligibility instead on the needs of the child; the goal is to offer support to the family so that the child's needs can be safely met in the home and the community, as opposed to in a hospital or institution. It's a win/win situation in that the parents do not have to shoulder the entire costly and physically and emotionally taxing load of caring for a child with a severe disability, and the state does not have to pay for the total care of a child who has been put into an institution because his parents couldn't handle the job, had become hopeless drug addicts just to cope, or were out whoring their bodies on the street just to cover the medical costs. See. Win/win.

But Sam was denied these services. Services that he received from a very similar program in California. Now anyone who has met Sam knows that his daily care is total and exhausting, that his inability to take care of even his most basic needs is due to a medical condition which affects several parts of his brain. According to the NC CAP program, Sam is exactly the type of child for which this program was intended. But, you see, the people who made the decision to deny him services have never actually met Sam. So, tomorrow, armed with 5 years worth of medical records, a nurse, a legal aide, letters from doctors, and our own statement we will go into the appeal hearing and formally introduce them to Samuel.

Wish us luck.

Yosemite Sam

You may remember reading about a road trip to Santa Cruz that I took with Jackson and Clara well over a year ago. During this time David took Sam to Yosemite. Separate vacations because, really, 3 kids and "fun family trip" is wishful thinking. Anyway, David began a blog about the trip shortly after returning.... and he just finished. Yes, that is how quickly projects get done around here if I leave it up to him. And I wouldn't be complaining were it not for the fact that he's been nagging me about linking to the blog ever since he finished it. Just to clarify: David and Sam went to Yosemite in September of 2006; David completed the blog entry about the trip on January 10, 2008 - 15 months later. Now can anyone explain why I'm being given grief for letting 2 weeks go by without mentioning the forgotten trip?

So here's the link to David's blog about the trip to Yosemite where he shows us some pretty pictures, talks about the new jog stroller he bought for the trip, and shows video of the jog stroller in action because that's what guys do... they obsess over new toys. What he doesn't talk about is how intense and lonely it was with just Sam because that's what women do... we obsess over feelings and emotions.

New photos posted

Cute kids in the leaves, in the snow and at Christmas.

And if you know of anyone who wants to buy a house in California I can hook you up with one. I'll refrain from commenting on our current situation with our tenant until we get a rational explanation... or really, any explanation at all.

The Stanley Milgram monitor

It's been a rough day. It's been a rough week. Things barely kept together starting to crumble. Maybe someday soon I'll have the energy to get into the details of all that is sinister in our lives right now. But not tonight. Because tonight I was reminded of how we've moved so far from appreciating the true beauty of having a special child like Sam.

Tonight, after nearly 8 months of negotiations and appeals Sam's new SleepSafe bed was finally delivered. It was delivered much later than we had scheduled it and the delivery driver was not allowed to help us carry it into the house. So out in the cold, dark night David and I went and carried each over-sized, unwieldy piece into the house while Clara screamed from inside. We had already moved Sam's old bed (aka the futon) out of his room to make room for the new bed. But with bedtime fast approaching there was no time to assemble the contraption so we placed Sam's play pad (aka memory foam) on the floor of his room to serve as a makeshift bed. During all the furniture moving I had had to unplug Sam's apnea monitor (yes, the kid still stops breathing at night) and this must have done something wonky to the insides because when David went to turn it on the alarm beeped and the lights flashed with wild abandon. In other words, it couldn't be trusted to monitor Sam's vital signs. I was up putting Clara to bed at this time so David fiddled with the monitor for awhile until I was able to find the manual for him. The manual told us which secret series of buttons to push and to which gods to offer our sacrifices. Once we got it working again David apologized to Sam for delaying his bedtime for so long but then told me that Sam actually seemed to be kind of amused by the whole beeping blunder. I joked to David that maybe the electrodes from the monitor that were attached to Sam's chest gave out a series of electric shocks during the whole fiasco and that's why Sam was "amused." And this is when David reminded me of how much more we used to be able to appreciate life with a special needs child. Because when we would go out in public with itty, bitty newborn Sam hooked up to the apnea monitor and well-intentioned people would ask what it was and how it worked we'd tell them that when Sam stopped breathing it delivered a series of electric shocks through those electrodes until he started breathing again. Most people had no other choice but to believe us. And we would get our amusement for the day at the expense of poor little Sam. Good times those were.

Four adults to 3 children was about the right ratio

My parents moved out on Monday. I think leaving after a 2 month stay qualifies as moving out, right? It really was a nice visit we had with them. The kids loved having their grandparents here. The first thing Jackson said when he got off the bus after school was "I wish Grammie and Gramps were still here." And Clara has walked into the room in which they stayed several times since they've left with her palms face-up by her ears uttering a questioning "hmmm?" sound. It's as if she's saying, "What has happened to those two magnificent people who used to live in this room for, oh, as far back as I can remember? They slept right here in this bed and they used to kiss me goodnight every night, greet me after my naps, take me outside for walks, share their blueberries with me in the mornings, eat lunch with me on the back porch, read me lots of books, sing ring around the rosie and fall down, hold my hand in the car, grant my endless requests for crushed ice from the freezer, humor me my 'need' for lotion and chapstick, and basically just adore me. But now this room is empty. Where did they go?"

Knowing my dad I'm kind of surprised he didn't construct a life-sized cardboard cut-out of himself to leave in the bedroom.