Oscar-Go

I have essentially designated myself spokesperson for our family. I’m the one with the part-time work schedule who can take Oscar to preschool every day and therefore communicate with his teachers, the one who can attend every doctor’s appointment with Oscar, every home PT and OT session, every meeting with his service coordinator and other care providers. I’m the one who, more often than not, can steal a few hours to write blog posts or send an email out to the community supporting Oscar. I feel incredibly lucky and extremely honored to be in this position.

However, I think this sets a bit of a false pretense about our family. Try as us feminists have, our society still expects that women are the primary caregivers in American families. And so the convenience of my part-time schedule, which allows me to be physically present more hours in most days, makes it seem as if I am the primary caregiver in our household. Not true.

David is an incredible dad. David would do all of the above-mentioned if he could. He wishes he could. As it is, he takes time off from work to go to many of Oscar’s appointments.  Oscar started aqua PT over the summer and we were able to schedule it outside of the usual workday so that David could attend every session. David is the one, most mornings as we’re rushing to get out of the house on time, who mixes Oscar’s juice with Miralax and probiotics and prepares his breakfast; who often gets him up, dressed, stretched, does cough assist and nebulizer—all before breakfast while I’m busy being seduced by the warmth of the shower, forgetting that I’m supposed to be in a hurry.

David makes everything fun—and not in a Dad-is-only-home-for-the-evening/weekend-let’s-be-novel kind of a way, but in a day-to-day-let’s-celebrate-life-and-enjoy-the-mundane kind of a way. For example, recently when David was doing cough assist with Oscar, David held the mask and hose up like a microphone and on the spot made up an exuberant and silly song about coughing machine that simply sent Oscar into wild giggles and giddy glee.

David also shatters the wife/mother as primary housekeeper myth. Between ironing and making coffee in the morning, David empties the dishwasher and takes the trash out either while I’m still enjoying the warmth of the shower or sending some email, no doubt. David cleans the kitchen and bathroom far more often than I do. He’s much more efficient at laundry than I am, and he can make the weeks of mail I’ve scattered along the kitchen counter disappear into rightful homes in a matter of minutes (a skill I just do not possess). All this and he’s the one who works outside the home 40 hours a week. Not to mention the fact that, as a writer and musician, he meets the challenge of being an actively creative person.

David knows how to talk about feelings with Oscar. He knows how to comfort him with his whole being. He knows when to let him cry and when to divert his attention and move on for a while. David is an expert at playing. Or drawing or building or cooking, or whatever Oscar is into at the moment. David is an expert at being present with his son.

One day, when Oscar was about sixteen months old, he really wanted to go sledding, but it was too cold to go out. My answer would have been, “We’ll go sledding another day. We’ll have to do something else today.” But not David. He fashioned a sled out of a cardboard box and some rope and he set up a small hill in our living room with pillows and took Oscar sledding indoors. David will stop at nothing to bring experiences to Oscar, especially if it concerns Oscar’s mobility or access to the world. Just when I think all my creativity or patience has run out, David is ready with a new idea. Just when I think something is impossible because of Oscar’s physical limitations, David will find a way to make it happen.

We’ve been together for eighteen years, married for ten. We’ve been through a lot together. We’ve done a lot together. Weathered the first three years of our relationship long-distance. Moved across the country, twice. The first time with no jobs, nowhere to live, $2,000 to our name and everything we owned in a moving truck. We’ve traveled tens of thousands of miles together. Made art side-by-side, and together. We’ve laughed until we cried and cried until there was nothing left to do but laugh.

David is the guy who, when I was in labor in the hospital for two and a half days, and our doula finally told him, a day and a half in, that he needed to lay down and rest and that she was taking me out walking in the hallway, he lasted only about ten minutes. His sense of responsibility toward me and our baby so strong he could not rest.

I have grown so accustomed to and so comfortable in this partnership that I am afraid there are moments I take for granted how good I’ve got it. And yet, nearly every day, I am awakened to what an exceptional man, husband, father, David is, simply by the way he lives his life. We have a true partnership in marriage, in parenting. David is my dearest friend. I am so blessed.

Happy birthday, love. I love you.

The Oscar-Goes! Benefit was just over a week ago. We are deeply humbled by the community that supports Oscar both locally and from afar.  We feel emotionally and physiologically changed from absorbing the tremendous love surrounding this event and the journey toward getting Oscar a van.   Not only was the event successful in terms of reinvigorating our sense of community, but it was also successful in terms of enabling us to meet our goal of raising enough money to get a van. We are graciously astonished to report that the benefit raised over $31,000!

We’d like to especially thank the group of people known as the Oscar Ensemble who planned and organized this event: Tate DeCaro, Heidi Katz, Donna Kowal, Tom Kowal, Sara Oliveiri, and Garrett Rubin. We’d also like to thank the following people from NTID who made the use of the Dyer Arts Center possible at no cost to us: Bob Baker, David Edborg, Gerard Buckley, and Pat & Jim DeCaro. Huge gratitude for Small World Bakery & Java’s for providing food, and for the Margaret Explosion who provided music, and to Heather Kerstetter who provided a poem! This event also couldn’t have happened without the amazing individuals who volunteered at the event and all of the individuals and businesses who made donations of goods or services. Please see the Sponsors page for a complete list.

Oscar had an incredible time at his “van party” playing in the Kids’ Zone and zooming the long hallway at NTID with his friends (we were able to bring his power chair thanks to a surprise loan/rental of an accessible van). What a thrill it was for us to watch Oscar playing independently. There were several times during the evening that we asked one another, “Where’s Oscar?” and the response was, “I don’t know.” This made our hearts sing because this was the first time Oscar has been able to really just be a kid with other kids, “running,” hiding, disappearing, without some adult assistance. Just the way a typical 4-year old plays. Oscar’s unbridled joy was the ultimate success and we look forward to similar experiences once we get a van of our own!

So now the research begins in earnest. We need to figure out which van will best suit our needs. Most likely this will be a standard mini-van, which will then need to be converted, which is a time-consuming process in and of itself. We will certainly keep you updated on the progress we make toward getting a van. Thanks to you, and your incredible generosity, we are now in a position to make this a reality. Thank you from the bottom of our hearts.

A few photos from the event…

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Looking for info on the OSCAR GOES! WHEELCHAIR-ACCESSIBLE VAN BENEFIT, taking place on October 6? Click HERE.

CATCHING UP

It’s been awhile since we’ve posted an update. We’ve had a few other things on our minds. We were away the last week in August. We started the school year going into battle over Oscar’s Physical Therapy schedule (you’re likely to hear about in the not-too-distant-future) It appears as if this has finally been worked out. We’ve also been pretty busy helping the Oscar Ensemble with details of the upcoming Oscar Goes! Wheelchair-Accessible Van Benefit. There is great electric energy forming around the planning of this event. Also, I’ve been trying to spend less time on the computer, and more time reading. Books! For pleasure!

THIS WARRIOR MAMA, $10,000, AND A DEAR FRIEND HELPING TO SPREAD THE WORD

Something else pretty exciting has happened in the world of possibilities around getting a van. A dear friend from my moms’ group, Sarah White, also known (for her cool blog) as Mindfully Frugal Mom has nominated me as a Yahoo Woman Who Shines. There are currently about 350 women in the running, in eight different categories, who have been nominated by others as women who shine. The woman with the highest number of votes at the end of the contest will win $10,000. Naturally, if I beat the odds and win, we’ll be using the money toward Oscar’s van! I’m truly honored and quite moved by the lovely blog post Sarah wrote about me. You can vote for me here.

REDEFINING ACCESSIBILITY: GRIMES GLEN

So, I mentioned that we went away in August. We spent the week outside the town of Naples, NY at the Writers & Books Gell Center by ourselves, soaking in the peace and quiet of the woods, visiting the beach at Canandaigua Lake, and taking some quiet time to read and play LEGOs!

I had first heard of Grimes Glen years ago when a group of Writers & Books’ students were going hiking there. They had been warned to wear old sneakers and plan on getting wet and muddy: they’d be climbing waterfalls! It sounded right up my alley; my family had spent three years in my early adolescence living in a house in the woods near a small stream with a small waterfall I’d happily scale any chance I got! Intrigued as I was, Grimes Glen did not sound like the kind of place we’d be likely to be able to take Oscar.

However, in the weeks leading up to our trip a couple people mentioned Grimes Glen to me, and the possibility that a stroller might make it through at least part of the path. My interest was piqued and David and I decided we’d give it a go. When we arrived in the parking lot we could see the beginning of a dirt path. It made a turn quickly and disappeared out of view, so we couldn’t really see ahead of time what we might be getting ourselves into.

We had borrowed Donna and Tom’s van again, so we had Oscar’s power chair with us, which can handle dirt paths pretty well. Thanks to a loan from the Oliveiris, we also had an all-terrain stroller. David and I got out of the car and, based on the little we could see, were trying to figure out whether the power chair or the stroller was the best option. The folks in the car next to us heard the word “stroller” and chimed in, “You won’t be able to get a stroller through. The path is full of rocks and tree roots.” That made up our minds. The power chair probably couldn’t handle it, but we’d take the stroller as far as we could, even if it was only a few hundred feet!

Near the spot David lifted Oscar and I wrestled the stroller up the embankment.

So, the path pretty much ended, almost right away, in the water! But the water was shallow (only an inch or two in many places) and Oscar LOVED the fact that his stroller was right in the water. We were able to continue along a ways like this. The stone of the creekbed was quite flat and smooth, and really quite easy to push a stroller on. The path did eventually pick up on the other side of the water, but not without having to scale a steep embankment. At that point in the trip, David carried Oscar and I wrestled the stroller up the edge. There were moments along the way when I hesitated, wondered if we should turn back, but David will stop at nothing to bring an experience to Oscar—or in this case bring Oscar through an experience! David’s determination is quite inspiring.

We continued on, through water…

over rock and under branches…

and together lifting Oscar in the stroller over fallen trees and roots, or through passages too narrow for the stroller to safely roll. We stopped when Oscar wanted to collect rocks from a pool of water…

or enjoy the view…

(we made it all the way to the first waterfall!), or relax with Dad…

or laugh with Mom…

or put his hands…or feet…into the waterfall! Had we not decided to turn back after reaching the first waterfall, had it not been lunch time, the path we would have continued on looked like this…Perhaps another day! It was challenging, at times, negotiating the physical space that was not in any way set up to be navigated by wheels, but it was also a pure joy and a real triumph!

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[Note from the Oscar Ensemble Oscar Goes: A Wheelchair Accessible Van Benefit, Saturday October 6, 5-8 pm, Dyer Arts Center, NTID (RIT campus). See the VAN page for details!]

by David

The impetus for this blog post began a few months after Oscar began using his power wheelchair.  Oscar began using the bottom of his wrist instead of his hand to toggle the joystick (which is the steering mechanism) of his power wheelchair. I immediately asked Oscar why he was using his wrist in place of his hand and suggested he use his hand. I also immediately realized I was overreacting, projecting my own fears that maybe he is already losing hand strength, instead of allowing him to improvise in whatever way he deems fit as he navigates through his world. I chose to correct him.  Luckily I was able to catch myself shortly after a small pang of guilt. I was being reminded by my boy that I needed to exercise some patience, first, as a parent, second as a parent of a boy with SMA.

The presumption that a power wheel chair now changes everything about Oscar having SMA without any further physical restrictions, of course is an unreasonable expectation. Oscar still has muscle weakness, he always will, it is the nature of SMA. Oscar has difficulty raising his head should it drop forward and more often than not needs assistance lifting it back up. Oscar gets fatigued toward the end of the day thus complicating his mobility whether he is in his power wheelchair or sitting on the couch trying to lift his arms while playing with his toys.  Impatience. Panic. Understandable, right? You long for normal, even the newly assumed normal we have integrated into our lives by way of power chairs, standers and respiratory equipment. Believing that Oscar should be able to just go without additional barriers, to be able to revel in his newfound independence, for the most part is possible. Yet when placed against some of the realities of SMA no amount of equipment can actually change Oscar having the disease; the equipment (in this case a power wheelchair) can only alter the way Oscar navigates his world. However, Oscar using his wrist instead of his hand to steer his wheelchair, also reminded me, simply having this device and being a pretty quick teach doesn’t leave him exempt from having to LEARN how to use it. If Oscar were able to walk—wouldn’t he fall or bump into things, or drag his feet when tired? Of course he would. Why then as Oscar’s parents does applying some patience prove challenging?

Perhaps there is an element of fear. We want him to remain as strong as possible for as long as possible. We want the number of obstacles already present as a result of Oscar’s SMA to be less of an issue now that he is able to zoom with his power wheel chair.  And that’s just it— he is able. However he is still a 3 and ¾ year old boy (Oscar is always reminding us of the ¾ when we say he is 3) who will sometimes get tired, will get distracted, will want to play, will want to test all of the ways he can and might steer his wheelchair.

As parents we have to be flexible, just like any other set of parents. Perhaps trusting in Oscar’s abilities versus his disability is crucial and I do think as his parents we are pretty consistent in doing so.  All of his abilities that aren’t related to SMA per se such as his advanced verbal skills, drawing/artistic abilities, cognitive thinking are astonishing and easy for us to revel in. We are careful never to take these for granted and we are always quick to share our genuine enthusiasm, yet we’ve come to expect these abilities from Oscar. Although the various physical challenges of the disability prove unpredictable, sometimes trying to interpret what is fatigue or muscle weakness and what is the temperament of a 3 and ¾ yr old boy also enters the parenting equation for us.  This requires some troubleshooting and of course as parents we are not exempt from trying to meet the needs of our child. It just so happens the physical challenges are inherent at this point as a result of Oscar’s SMA. Maybe the advanced verbal and cognitive skills are as well.

Perhaps these words can serve as a reminder that patience with ourselves as parents is necessary. Oscar being Oscar is the most rewarding reminder.

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