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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