Month: February 2009

My husband is obsessed (really obsessed) with reducing our carbon footprint. Our conversations may start in many places (what’s for dinner? how was your day?) and will end up at – “You know, there are now fluorescent light bulbs that look just like a regular light bulb – they squeezed the whole coil into the bulb!” One night this week, he could not sleep because he wanted to be awake at the time the furnace turned on to see if the auxiliary heater would turn on. (Apparently this auxiliary heater is EVIL).

He spent serious time this week talking to heating contractors about our heating system, which they all agree is brand new and totally the most efficient on the market – everything is well insulated and well installed. He wanted to take the next step and install a geothermal heating system meaning that they rip out your backyard and put in 1000 feet of pipes filled with some sort of fluid that makes the whole system more efficient. Right now, we could get back $20,000 in tax rebates for this “green” installation. So Jeremy really, really wanted it to be close to $20,000. I said no way was it going to be even close – I said it was going to be at least $40,000.

Get this, the quote was $55,000. Crazy. We are totally NOT going to get the geothermal system installed.

Things I should be doing:
Going to bed early.
Watching the Obama address.
Filing medical bills.

Things that I am doing:
Watching the movie Penelope.
Staying up late to wait for Jeremy.
Eating banana bread.

It always seems to be New Jersey that we are traveling to. This past weekend, we went to the NJ Rett Clinic over at Rutgers University. This is the fourth time we’ve gone and we are pros now. I remember the first time we went, I was just so amazed at seeing so many girls with Rett Syndrome all in one place.

Here we are at a hotel the night before – relishing in hotel TV. Everyone wanted to watch HGTV. They all are fascinated by room makeovers.

TV continues to enthrall the next morning.

Finally at the clinic, we were in and out in less than 2 hours. They do the most complete and consistent body measurements that we have on Edda and then they ask how Edda’s doing and then we ask questions.

Jeremy is completely stymied by the fact that we may be buying a minivan in the near future. For 5 years now, it has not be unusual for us to drive 8 to 12 hours (usually to Upstate NY) in our trusty Honda Accord with the four of us and the dog. Ruby is a patient dog and usually spends the trip in the footwell being kicked by a child. OK, this makes it sound like we’re going to buy a minivan so the dog will be more comfortable, but I swear that’s not the case.

Edda is getting heavier all the time, Jeremy and I are pretty strong and can still lift her, but there is no way either of our mothers can lift Edda and I can feel the little twinge in my back when I lift Edda in and out of the car. We spent part of the weekend looking a turnout seating for Edda (which I have to say is fantastically cool) and thinking about what vehicle to put it into.

The turnout seat salesman said that 90% of the seats go into minivans, and I’m like, OK, let’s get the Toyota Sienna or the Honda Odyssey and be done with it. Jeremy looks at the 19 mpg on the highway that the minivans gets and gets all concerned. Remember, he is a professional environmentalist. All day he thinks about how to convince Americans to use less fuel, he talks to the EPA, he does his cute little gas calculations and comes home and talks to me about it all the time. So, I think we are going to go to a bunch of different car dealers and looking at some other, smaller, more fuel efficient cars. This is going to take some time. I hope Edda isn’t 75 pounds by the time we decide, but whatever, maybe by then the minivans will all be hybrid and get 47 mpg on the highway and it will all be moot.

We are on the road again this weekend. Jeremy loves to pack – he is usually in charge of packing for the kids and for himself and I swoop in at the last minute and shove my clothes into the space that he’s saved for me. We’ve been together so long that Jeremy knows that I always pack too light and he needs to add an extras of his own boxers/undershirt/sweatshirt that I’ll need to use as PJs.

I don’t know what happened this time, but I was trying to be “helpful” and co-packed the suitcase with him. As a result, neither of us knew exactly what the other person had packed. As a result, one of the four of us is going commando today.

It is easier said than done. Recently, my high school class President passed away. He was very smart, intelligent and precise. I guess his passing away had not much to do with his illness (ear infection) but rather, in seeking his perfection, he tolerated less on his less-than-normal (not even perfect) conditions and refused to take good care of himself properly. His wife, a nice lady, probably couldn’t persuade him to change his self-destructive mind either.

In his memorial service, I overheard someone said that his doctors always were not that good. I think that any illness needs good relationship between patient and physician. He, probably, wasn’t patient enough to be a good patient. May be far from it.

Coming back to Edda, I think, she is improving a lot based on what I have observed. And this is a result of hard working of you and Jeremy on a 24/7/365 basis. But, even put a lot of work on her, being realistic and most likely, she will be far from self-sufficient. Of course, this itself will be very discouraging that is quite nature and understandable. If I were you or Jeremy, I would feel very despair too – but, it is okay and normal. Don’t keep that feeling all by yourself, all the time.

But, doing your very best under difficult or impossible conditions is a big accomplishment itself and one should pat on his/her own back just for that. Not only that, one should be very proud. Everyone around would agree and appreciate. The desire to make thing bit better in one’s mind then would become a huge reservoir of fuel that will carry a lot of heavy stuff (tangible or not so tangible) much further and farther.

Due to my childhood experience, I always see thing more positive than it should be since it can’t go lower. I hope you and Jeremy will see that too – she needs a lot of work constantly but she is lovely.

Let me say that you are an excellent Mom to conclude this posting.

Love Always, Dad.

For the past few weeks, I’ve been going through (again) the Kubler-Ross model, aka the 5 stages of grief about Edda’s disability. I felt like since I did it once already – cycling from denial, through anger, bargaining, depression and then acceptance over the span of 2 or 3 years, I thought I would never need to go through it all again at least not with the same intensity. But, (woo hoo!), I’m cycling through it all again. Going through depression in late January and early February and now I’m firmly entrenched in the anger phase. Grrr. Let me say it again. Grrrr. I just walk around wanting to kick people in the shins. Grrrr. (PS, I’m never in denial. I’m a pessimist, so I don’t go through that stage.) One of my co-workers says I’m the most cheerful grumpy person they’ve ever met, so I guess I’m holding it together…

Enough about me.

After the sing-a-long, we celebrated Emy’s 29th birthday! She’s almost 30! My youngest sibling-in-law is almost 30, which means I’m almost too old. Woo hoo! Have you met her dog, Bozito? He’s missing more teeth than Edda which means that his tongue pokes out of his mouth all cutely.

Here are her birthday cupcakes. The oven at Kiki and Kappa’s died, so Emy had to take the uncooked cupcakes back to her own apartment, bake them, and then bring them back.

And you can witness the death of the 50 mm lens.