Markers of Time
March 30, 2011 in Featured, From Julia by Julia Roberts
I’m a fairly organized, detailed person. In fact, I’m probably borderline (ha!) OCD. This is all extremely helpful when parenting a couple of kids with special needs.
It also makes me want to record everything. That’s probably a good thing, right? I think I do it because I’m pretty sentimental. Plus, well, the kids have a life-threatening condition and so I feel like I have to. I have to.
One of the things I’ve noticed is that I can recall with certainty the date of nearly all medical events for my kids. Is that strange? I can almost tell you where I was when I received an important call (in the car when we learned my son would need EPO shots) or the details of a big visit to the hospital with one of the kids (the room color and temperature of the room where my son was diagnosed with a kidney disease). You know, little details.
I know I have my blog and scrapbooks at the ready so I don’t necessarily need to remember all the details, yet, I do. I think it is my internal way to honor their struggles. When I remember the details and can have long conversations with my kids about what has happened to them physically and emotionally I like to think that they feel like I was there; that they weren’t alone. In the isolating world of growing up with a chronic disease and learning difference I want them to know that I was there with them even though intellectually they know it.
A couple of times I remember haunt me. I think about what I could have/should have done differently. Many of of the time markers I hold on to are ones I can recall with pride that I (or the kids) handled everything the way I (they) should have.
A haunting: I wished I’d pushed harder one day before I did when my son had a horrible, painful surgery experience. It was night, he finally fell asleep but he was in horrible pain for a long time. It was his birthday. February 2007.
A good one: I worked around a doctor who would have allowed my daughter to go on dialysis but in a stunning turn of events they relented after a 2nd opinion and approval at another city’s transplant center. That happened in February 2009.
What are two of your time markers?
Dawn (our fearless and wonderful managing editor) sent me information on a game a couple of months ago. She knew I’d be interested in it because let’s just say this simply: my son is (was?) an emotional mess.
The next day after school and homework I asked if they wanted to play a game about feelings. “Huh? What do you mean…feeelllings?” I said, all the feelings, and look at this; and they were excited. The board is colorful and the faces on it were fun to look at and we laughed a little bit about them. There’s a help card in there so you can match the faces on the board to see what you are supposed to mimmick if you land on it – we all liked looking at that when one of us landed on it.
