When we were younger

15 years ago this month Kevin and I went on our first date at Living History Farms.

14 years ago tomorrow we were married there.

We were so young but felt a little old at the time to just be getting married…sigh.

I see our wedding picture every day and I almost don’t recognize us.

I don’t feel like we’ve looked like that since Grace was diagnosed. What I see now in our pictures are two people who look a little bit tired. Two people working so hard to keep everything afloat and smiling (but not as big) while doing it.

Never in our dating did I consider if Kevin would be a good medical supply orderer. If he’d be able to princess carry our daughter long after I couldn’t. If he’d be ok cleaning up poop.   How he’d respond when a doctor said: “Frankly, I’m at a loss…”.   If he’d have a hidden knack for adjusting a wheelchair or whipping up a changing table using IKEA bookshelves.

We had no way of knowing all of that and more was in our future.

We joke with people sometimes that we have five or six “date afternoons” a year. We’ve been getting season tickets to the Civic Center for the last several years. Somehow we’ve managed to never miss a show. We’ve been able to do that through a combination of help from family and respite providers who we are very grateful for.   When we were first married I admit I imagined there would be more date nights. But the reality of finding someone to care for Grace is that it’s hard. I sometimes get jealous of date nights and parent trips that others seem to take with such ease. I know social media is all perception but it just seems so far from our reality.

I struggle sometimes to understand the effect of Grace’s needs on our marriage. She arrived a year and a half into it and by our second year of marriage, we were playing by completely different rules. Graham changed the rules again when he arrived. I don’t mean to oversimplify but one of the big differences I see in parenting the two are the logistics Grace brings with her that Graham doesn’t.  There are so many people to schedule appointments with, people to communicate with, meetings to go to, labs to get, paperwork to fill out, things to have in a bag before we leave the house. If we forget anything for Graham we can pick it up at any Target or gas station. If we forget certain things for Grace she doesn’t eat and has to wait until we get home. Grace has forced Kevin and I to combine our brainpower and up our organization. Sometimes we have it all. Sometimes we forget things.

The other thing she’s forced is conversations I’m hoping most married couples don’t have. Brain surgery?…Yes or no? Try the experimental drug? Get the medicine from Amsterdam? Are our expectations for inclusion fair? Can we afford the wheelchair van? What will happen to her when she’s done with high school, how will she spend her day? How will she not get isolated?

I’ve been thinking about all this because we had a nurse today in our home who wasn’t with us all summer. She asked if we took any vacation this summer. I told her we did. We did Mt. Rushmore, the Badlands, Devil’s Tower. I went on to explain that the wheelchair van had made it possible. That Graham being older helps a ton. That Kevin’s research on van toppers and ability to pack in tight spaces was key. That it went well enough we are planning another summer vacation.

“Good for you,” she said.   “It was good” I replied.

This thing that the younger Kevin and I started is going ok. We are doing good things. Maybe not the things we imagined but things that are important.

I’m glad they didn’t know… the younger Kevin and I. We’ve probably done best learning together as we go.

Joy

 

 

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