Oscar-Go

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!

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!

http://www.youtube.com/watch?v=HAPVoFgKCKw&feature=youtu.be

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!

Embrace. Educate. Empower.

We first discovered 3E Love and the wheelchair heart at the FSMA conference last summer. I was so moved by the symbol, I hung around the table like a groupie every chance I got. Relatively new to this journey of parenting a child with a disability, I was tickled pink to know that a wheelchair and a heart could be together as one symbol.

I believe everything happens for a reason. I also believe everything happens just the way it is supposed to happen. In the moment we can’t always see that reason. But eventually, if we keep our hearts open, the reasons tend to present themselves. Just days after Oscar’s diagnosis with SMA, I was able to write in a letter to family and friends, “Somewhere in the deep recesses of us, we understand that this little boy has more to teach us about being human than we ever could have imagined.” And we believed it. The diagnosis was unimaginable. What good could come out of it was unreachable. But we knew that someday we’d start to learn. And start to learn, we have.

Sure, being in a wheelchair presents challenges. But it also presents opportunities. Being in a wheelchair does not equal a life that is less-than. Being in a wheelchair does not equal misfortune. A person who uses a wheelchair can celebrate life as fully as a person not using a wheelchair, can live as fully as a person not using a wheelchair. There are many folks I have met with SMA who are living their lives much more fully than many people I know who do not have mobility challenges.

Meeting Stevie Hopkins, who co-created 3E Love with his sister Annie, and being introduced to the wheelchair heart, which Annie originally designed, opened my heart wider. As stated on their website, “3E Love is a social entrepreneurial experiment to change the perception of disability.” The symbol allows me to access what is already in my heart. It allows me to continue to be the relentless optimist that I am, despite the unique challenges our family faces. The wheelchair heart allows me to celebrate Oscar completely and wholly, wheelchair and all, and to share that celebration, that joy, with the world around me.

Please take some time to visit www.3elove.com, read the stories about Stevie and Annie and the meaning of the symbol. Buy a pin, or a t-shirt, or a bag. Spread the message of social acceptance. Embrace. Educate. Empower. Wear your heart on your sleeve. We do.

Orange is the color of endurance.  I learned this three days before the year changed over. I googled color symbolism so I’d know what color candles to buy for the private ceremony David and I planned to have in the last quiet hours of 2011, after Oscar had gone to bed and before we collapsed completely. To honor for ourselves two years of endurance. Two years to the day of Oscar’s diagnosis. I bought two other colors of candles also. I don’t remember what they were. We never burned any of them. There was no ceremony. Just the red of the digital clock high on the wall over the hospital room door. Oscar’s first respiratory infection, his first hospitalization. We spent the last hours of 2011 wondering when his O2 stats would stabilize, wondering when our son’s breathing would slow, eyes trained on the monitor’s numbers. We endured the passing of the new year in the PICU. The orange candles are still in the dining room cabinet, behind the wooden doors, waiting.

And this is how 2012 started for us. Or how it didn’t start. Oscar was admitted to Golisano Children’s hospital on the afternoon of December 31, 2011 with RSV, a difficult respiratory infection. He spent six days in the PICU and then another three on the general pediatric floor. The readjustment to life at home after this traumatic experience for all three of us was intense, and gave a particular focus to the first two and a half months of the year. We did learn that the level of care here in Rochester is exceptional. We also learned that we can handle this. We can, all three of us, endure. We can endure hospital stays. We can endure anxiety. We can endure SMA. We can endure a life path unlike that which one would imagine for him or herself.

Endure. Endurance. Not like an outside force that has been placed on you just for the sake of being troublesome. More like an endurance run. Something that chooses you but you don’t fully understand what “it” is until you’ve lived it a bit. Something that has very difficult moments, but is not inherently bad. In fact, it can be really beautiful. Invigorating. Enlightening.

We’d do anything for our little boy. For love. For the love of this life. And because the scenery will always change. There will always be something new to learn.

The poet Mary Oliver asks
What good does it do
To lie all day in the sun

loving what is easy?

We’re all learning to embrace challenge and to see struggles as opportunities to learn and grow.

If you’ve been following this blog, then many of these highlights from 2012 won’t be a surprise. We started the blog in March with the aim of writing once a week. We realized that is just not realistic most of the time. So, we’ll update as time and inspiration allow!

• March 22: a miracle happened. Oscar’s power chair arrived. This was truly one of the most exhilarating days. There was a sparkle in Oscar’s eye brighter than usual. His centered sense of confidence solidified. At last, true independence in mobility.

Yes, it really was warm enough for shorts and a t-shirt in Rochester in March. Hard to believe!

• In April we entered the NMEDA van contest with the aim of winning a wheelchair accessible van. As the contest played itself out, it became obvious that the real reason for the contest was for us to raise awareness about disability issues and SMA.

• Also in April, we visited Johns Hopkins for the first time, where we had an appointment with Dr. Tom Crawford, one of the country’s top clinicians in SMA, a neurologist in the MDA clinic. We are grateful for his experience and his proactive and preventative approach. We will continue appointments there once or twice a year. Being able to visit family and the National Aquarium make these trips really something wonderful to look forward to!

• In June, Minnie, Oscar’s PT since he was 14 months old, moved out of Rochester to be closer to her family. She had been our rock and this was a difficult good-bye. In her absence we are building a new foundation of care providers and learning to trust ourselves more.

• Also in June, we presented at the national FSMA conference in Minneapolis. We offered a workshop called “Tapping Into Creativity: Tools for Personal Healing” where we shared with other parents our experience in using creativity to cope with emotional challenges. This workshop was only one of many highlights of the conference. We are so grateful for FSMA!

Oscar and Heather become fast pals at the conference. Seen here making the diver "OK" sign together!

• Later in the summer Oscar started aqua therapy. He loves the pool! This seems good for him in every way: the buoyancy allows him a greater freedom of movement; the warmth of the water facilitates stretching; due to the pressure, breathing in the water is two and a half times harder than it is on land and we’re thrilled that Oscar is breathing normally and using a loud voice in the pool; the work of the pool is allowing him to build muscle; and he looks forward to it every week!

• In October, the van benefit blew our minds. Enough money was raised for us to purchase a van. We are in the process right now and hope that soon we will have the good news to share that we own a wheelchair accessible van! We are still stunned by the outpouring of love and support. We’re working on personal thank-yous to everyone who helped make the event successful. However, many of you who donated with cash or credit card at the event, or folks who helped spread the word, we don’t have contact information for you! So, please accept this as our thanks.

• In November Oscar had his first sleep study. He was terrified but with much preparation ahead of time, he handled it fabulously. The results were unremarkable. There is no identified need for medical intervention (bi-PAP machine, similar to what folks wear for sleep apnea) at this time. That was definitely a relief, though it also leaves us with a problem to solve: how to get this kid to not wake up so much during the night!

Throughout the year we each carved out time for our own creative endeavors. We scheduled Sally one weekend morning each week to write, and David has one evening each week to play music. We each try to sneak in other creative times during the week with David working on some new fiction pieces and Sally continuing to take a memoir writing class at Writers & Books.

David plays a show at Skylark

A line from one of Sally's poems embedded in the sidewalk on ArtWalk

“My job is to play,” says Oscar. And he is an expert. As much as he loves preschool, he delights in weekend mornings when he can stay in bed and play with his “guys.” He invents elaborate stories about underwater adventures, superheroes and imaginary characters. He delights in drawing, reading, playing with legos and his Beatles action figures (John and Ringo are his favorite), along with sea creatures, pirates, and astronauts, and even “girl guys.”

And a few choice Oscar-isms from the year:

Once, while giving a tour to someone who had not been to our house before, Oscar pointed to the bathroom that was currently unusable, while it was awaiting construction to fix a leak, and said, “This is our retired bathroom.”

One summer morning in the car, after David gave a goofy answer, Oscar said, “Are you being sarcastic?” Since then he has accurately called us on our sarcasm regularly.

After asking if food goes straight down or makes a turn when you eat, Oscar asks, “Can you get the anatomy book so I can learn more about how bodies work now?”

O: Mom, can you draw an unexpecting fish?
S: What’s an unexpecting fish?
O: A fish that is made up.

One morning at breakfast, completely out of the blue, “You don’t know what happens in life.”

O: How much do you love me?
D: I love you as much as the universe, the whole planet, all the oceans, all the trees.
O: I love you 30 miles an hour.

And so, although we do hope for 2013 to begin on a more peaceful note than 2012, we do feel more equipped and ready to handle anything that might come our way.

Wishing you delight and wonder in the new year.

With love,
David, Sally, & Oscar