Patrick finally got to go back to school today. His throat is still red and a little swollen and you can see marks where the white spots were, but his doctor ran every test we could think of and everything came back negative. With no fever and no spots, he’s not contagious. So he was free to go back.
He was bouncing with excitement. Literally.
At last it was time to go. I dropped him off, and then went to chase down a classified ad that Brian had seen for a very inexpensive tent trailer. We’re talking pretty dirt cheap, or we wouldn’t have even been considering. But I wanted desperately to take Patrick camping last summer and ended up with just one half-night backyard campout instead. This raised a glimmer of hope, and then when it turned out to be an offer that really was too good to be true, it kind of bummed me out.
(Brian tried to help tonight by pointing out that we can’t really go camping anyway because there is little cell service in the mountains, and then if we got the transplant call, we couldn’t drop camp and make a plane to Omaha in time anyway. That didn’t help. Just made me sad at one more joy that I can’t share.) But, back to the story…
I thought I’d console myself by sneaking in a haircut. I’ve been feeling shaggy and wanted some pampering. Only when I got to my new favorite stylist, her shop was closed. I was determined and headed to Great Clips instead. I explained that because I of our habit of sleeping over in hospitals, I needed just to trim off split ends. Keep it low-maintenance. But thought I’d mix it up a bit by asking her to round the back a little. 5 inches later, I have shoulder length hair. And there wasn’t even time for a blow dry before getting Patrick from school.
At least when I picked Patrick up, I found he’d had a great day! He couldn’t stop talking about school. It took an hour for him to settle down enough for a nap.
I thought I’d make up for not cleaning while he slept, but after doing the dishes discovered the garbage disposal wasn’t working. I tried all I could think of, then turned to Google. Turns out there’s a reset button, some kind of failsafe, and thank goodness that is all that was wrong. But that was the end of naptime.
Patrick had an appointment with his occupational therapist today. She’s been crazy hard to book with and, thanks to the transplant eval making us have to cancel our last appointment, we haven’t seen her in over a month. He was very excited. Honestly, so was I. He’s doing really well in OT lately, but after this rough month, needed the positive push.
So we were both disappointed when we were greeted with the “business” of having to be read the clinic’s new attendance policy for the first half of our session. Blah! It’s a shame that people have to actually be told these rules like cancel when you can’t come, come on time or call, don’t play with your cell phone during sessions, and please do your homework.
Anyway, his therapist did make up with a very fun last half of the session. Patrick played bowling where he got to roll his ball down a nice steep ramp. And he got to climb up a ladder of stretchy swings and then we bounced him around singing “Wheels on the Bus” and made him laugh that perfect laugh that makes the whole world seem better.
In the evening we stopped at the grocery store. Then we played on the swingset for the first time since fall.
And then, tonight’s dinner became a great triumph. We had leftovers. For family Sunday dinner, we’d had ham and funeral potatoes. And, because it was the weekend of Dr. Seuss’s birthday, I’d made some green jell-o eggs. On Sunday, Patrick was just waking from a nap and didn’t feel well and, with family there watching, didn’t touch them at all. (Despite the fact that he currently loves the book Green Eggs and Ham and had been very happy helping me make green eggs.)
When the eggs made a reappearance at dinner tonight, he was very excited. Excited enough to forget his tofu cheese (current favorite food) to ask to eat them. He couldn’t figure out how to eat them with a spoon. And he didn’t like the feel of them in his hand. But he finally got brave enough to take a bite when I held it for him. Then he thought up the idea all on his own to wrap one in a napkin so he could eat it and took several more bites.
New foods and flavors and textures are a really hard thing for Patrick and so this was a HUGE accomplishment.
“I do so like green eggs and ham.
Thank you! Thank you, Sam I am!”
I had kind of a hum drum day today. And it had a lot of reminders of all that I am giving up as Patrick’s mommy. Sometimes I feel like I don’t recognize my old self in the new me. (Especially with my new low-maintenance haircut.)
But I do love that the new me has the chance to see bright and brilliant things in the small moments that the old me would have missed out on.
I think I need to be a little more like Sam-I-am. Willing to eat some green ham in a box with a fox on a train in the rain. Willing to see if there are some things I like in some places I might not think I want to be in.
Especially as I’m learning I can’t always control where I am or what I am going to be served.
Patrick Hoopes 