Archive for March, 2013

On Time

Sunday, March 10th, 2013

Sunday mornings are my writing mornings. I set the alarm on the iPod as early as I think it might be possible for me to rise and then I make a cup of tea and head into our partially finished basement where I have a desk set up and I write, often for 3-4 hours. Last night before I went to bed I set the alarm for 5:00. I thought carefully about it, knowing that if I set it for even 5:15 I’d stay in bed for at least 15 minutes beyond the set time, then I’d have to make my tea and get dressed and brush my teeth and I wouldn’t be downstairs before 6:00 and I wanted more time than that. So I chose 5:00.

When that alarm went off I was nowhere near ready to get out of bed. I hit the snooze button several times but I didn’t go back to sleep. I lay in bed resting and thinking, feeling guilty for not getting out of bed. Eventually I turned the alarm off altogether. I think that was around 5:45, but still I didn’t get out of bed. I let the guilt about not getting up to work on my craft lead me to other guilt. Guilt about not connecting with people. How I am realizing the Christmas thank you cards we made, with Oscar’s drawings on them, are sitting in a pile, never sent, because there were a couple we never finished and I wouldn’t want to be unfair and only mail some thank-yous and not the rest, so they sit, nearly forgotten. They sit beside the unfinished thank-yous from the benefit, in October! We did get out over 200—maybe more, I’ve lost count—but nonetheless, most of the people who donated items to the silent auction have not yet heard from us, personally. There are even a few donors who gave quite a substantial amount of money whose addresses we didn’t have at the height of our thank you card writing and their cards sit waiting, as well. I feel deep guilt about this. These people bought a van for us. Outright. It didn’t cost us a penny out of our own pockets and we can’t even get it together to send them a thank you card?! I should be getting out of bed to write thank you cards, not to write for myself!

And then I go back to feeling guilty about not getting up. How much time has passed? I don’t want to know. I really ought to get up NOW and go stretch for a few minutes. When was the last time I did anything resembling exercise? 5 minutes of stretching and then a few hours of writing. Do it! Just pull the covers back and swing your leg off the side of the bed and you’re golden. You can do it! I notice a sound coming from the kitchen. The dishwasher is still running. That’s weird. David was up late writing last night. He must have been up really late. We have a four hour delay on our dishwasher and then the washing cycle goes for over an hour, so if it’s getting ready to finish now, at some point after 6 a.m., it must have started sometime after 5 a.m., meaning David went to bed after 1 a.m. Wow! Good for him! So he spent over four hours writing last night. He’s a night owl, not me. So if I get up now perhaps I can get 4 hours of writing in—nope I’m probably down to 3 and some change. I like to emerge from the dungeon no later than about 10:30 so I get some morning time with my fellas.

And speaking of time with my fellas—whew! March is a tough month in terms of time. Evenings and weekends, like in most families, are our family times. The chance the three of us get to touch in with each other, to be present, to play, to draw, to go on adventures. So, March. Monday nights I take a memoir class at Writers & Books, so I scarf down my dinner and scram. Tuesdays David is taking Advanced Fiction at Writers & Books, so he scarfs his dinner down and scrams. That much has been true since the end of January and provides for a busy beginning of the week, but is doable. Now I’m also teaching Where Writing and Motherhood Meet at Writers & Books on… Wednesday nights! On Thursday Oscar has aqua PT at 5, we get home after 6, and then David has music night, which means he heads into the basement and rocks out until Oscar is in bed. Fridays we’re all ready to collapse—or at least David and I are—Oscar is always up for an adventure. So, that leaves weekends only, really for family time.

We wouldn’t have it any other way, David and I. We are creatives to the core. Without our outlets we’re useless to one another, to Oscar. As much as the schedule is insane, it is also our sanity. We both have to work, and while I have the luxury of having a job that does employ my creativity, it doesn’t fulfill my own need to create on my own terms. It’s more about using creativity to create space for others (youth) to create.

This schedule leaves little room for connecting with extended family, or friends. Oscar is old enough now that he is developing friendships of his own, and he has enjoyed some wonderful playdates with friends from preschool, or other venues. I want to help him foster those relationships. But how? Where is the time? Sure, he’s only in school half-days. In theory that helps. But he still naps. By the time he eats his slow lunch (God help me, he inherited my slow genes), and takes his nap, a good chunk of the afternoon is gone. Plus, on Mondays he has PT after nap. On Tuesdays, I work until around 5. Wednesdays leave some room for possibility. Thursdays I work until 4 and then he has swimming. Fridays… also maybe some room to play. But this doesn’t include the monthly appointment we have with his service coordinator—that has to be fit into the mix. Or the appointments with any one of his six doctors that come up periodically. Seven actually, now that we’re meeting with the psychologist at the sleep center. With no medical reason to be waking so often in the night we’re hoping she can help us help him get some more sleep, so that we can get some more sleep, too. Oh-did I mention that? On top of this busy schedule David and I each get out of bed, on average, a minimum of three times a night to answer Oscar’s calls and to help him roll over. Some nights more. When Oscar was a newborn he sometimes slept 5 or 6-hour stretches. Then we slept pretty well, all things considered. I can’t remember the last time I had more than three hours sleep uninterrupted.

Speaking of which, as I am really contemplating getting out of bed this time, at which point it must be close to seven What a terrible writer I am—laying in bed feeling guilty instead of getting up writing (I keep sending these nasty messages to myself), Oscar calls outs to roll over again (he will often sleep in until about 8 on the weekends—there’s a silver lining)! So I get up and take this as a sign to stay up. If he hadn’t called out, maybe I’d be in bed still… So, I walk into the kitchen, thinking it’s really dark for seven. And the clock on the stove reads 6:00. I’m confused. I know I lay in bed for close to two hours after the alarm went off, not one. And then it dawns on me. It must be Daylight Savings! Oh my. So when the alarm went off my body believed it was 4 a.m. No wonder I didn’t get up! Damn iPod that changes time automatically! And also probably a good thing because I honestly had no idea the time was changing this weekend. I probably would have brought Oscar to preschool an hour early tomorrow!

Well, this has been quite enough rambling on. But that’s potentially what a web log is for, yes? I don’t mean to moan and complain or make excuses for my behavior. As a writer I tend to mull these blog posts over for a week or more and try to perfect them. And then I spend hours uploading photos and rearranging them. But if I took another week to edit this, I might never post it. So, today I’ll take a risk and write off-the-cuff. So off-the-cuff that I stood at the counter while my tea was steeping and my English muffin toasting. And an hour later I’m still standing at the counter typing… Happy Daylight Savings day!

The Van!

Sunday, March 3rd, 2013

At long last, we now have a van to transport Oscar’s 200+ pound power wheelchair! We are filled with gratitude. We can’t believe how the world has opened up already, in such a short time. We’ve had the van almost three weeks and we’ve been having too much fun to hold still long enough to write a blog post!

Oscar arriving at preschool for the first time in his power chair!

We were so incredibly lucky to find a 2011 Toyota Sienna, already fully converted, with only 4,700 miles on it! So, it was essentially a new van, but with a used price! The full price of the van, including taxes, was close to $55,000, but Medicaid covered the portion of the price that was for the wheelchair conversion, which was a greater cost than just the van itself. Medicaid paid over $28,000, while we paid just under $27,000. This left us with money to cover insurance, and a nice cushion in the bank to cover any maintenance that will be needed (for example, the hydraulics and ramp will need to be serviced at least once a year). We are humbled and beyond grateful that this all panned out the way it did. We feel so blessed by the community that rallied around Oscar to make the purchase of this van possible. We feel so blessed by the village that is helping us raise this boy.

There is a lot we’re all learning about navigating in the world with a four-year-old, now that we have the means for Oscar to navigate! For example, when in public, it’s important to stay where one one of your parents can see you. And, when going through a doorway, it’s important to keep moving, rather than stop right in the middle! Now, when we’re out and about, we move at Oscar’s pace, versus our pace of pushing him in the stroller. Sometimes that pace is hard to keep up with. But often, it is the slow pace of an inquisitive little guy seeing the world from a new vantage point—his very own vantage point—with the independence to go where he wants to go, and when he wants to go!

We are also now thoroughly enjoying the luxury of having two vehicles. It’s so wonderful to be able to start making dinner without having to stop mid-stream to go pick David up from work. Or to be able to take Oscar somewhere in the late afternoon without having to worry about being back in time to pick David up. And David is thoroughly enjoying not having to wait for the two slow-pokes in his family to leave the house in the morning. He’s actually been on time to work every day since we got the van!

On the very first night we got the van, we offered to take Oscar out for ice cream to celebrate. But, no, he wasn’t really interested. He wanted to go to the library instead!

Other places we have visited so far:

• Wegmans

• the Lego store

• the Pittsford Dairy

• the Planetarium

• Daystar (Oscar’s old daycare)

• Writers & Books (my work)

• Cardiology Clinic (David’s work)

• friends’ house from preschool

• Barnes & Noble

• Chipotle

• Panera

• Target

• CP Rochester for swimming

• The Strong Museum of Play

The ramp folded inside the van.

Oscar parked in the van ready for an adventure.

These easy quick-release tie-downs secure Oscar's chair in 4 places.

All tied down and ready to go (you can see Oscar's feet in his car seat where he will still ride for now)!

Oscar browsing the books!

Just outside the library!

And here’s a video showing how the van ramp works – with just a click of a button!

Thanks so very much to all of you who helped make this become a reality. On the first day we got the van Oscar kept saying, “We OWN this van. It’s ours! We’re not renting it or borrowing it. We don’t have to give it back. We OWN it!” The adventures have only begun. We look forward to sharing more with you!