Tuesday July 19, 2011

We have been experiencing some unprecedented heat and humidity here in Minnesota with a record setting dewpoint and heat index yesterday. It's the kind where your glasses fog up when you go from inside to out. On top of that, Shannon was still under doctors orders to take it easy. Yet Monday, we couldn't help but loosen the reigns a little. We let Shannon play in her nine hole golf league with her friends early in the morning. It's something she's been wanting to do, and this was the first Monday that we've been home and she's been healthy enough, so we said ok. Then, we had the opportunity to go see the Twins play from a suite a Target Field thanks to one of Dan's customers. So, we thought, what the heck, there's AC in the suite, let's do it. But, after the game, walking to the car, and starting the drive home, Shannon's cheeks were bright red and it made us wonder if we had made a mistake. She can't afford to lose weight or get dehydrated. We made it home and laid low the rest of the evening, all of us a little nervous for today's weight re-check.

But, the weight check was good. Shannon put back on the weight she'd lost last week. All that forcing herself to eat has been working. Shannon's been dealing with the reality that all the drugs she's needing to take have affected how she feels, but she still needs to eat. She's not "sick", but she doesn't feel quite right. Her stomach feels unsettled and her energy isn't what she'd like it to be. She's tired early at night, but can't sleep in late. This is just how it is now, and while it bums her out, she's coming to terms with it. When she's tired, she goes to bed. When she wakes up early, she has cereal and watches Sportscenter while she waits for the rest of the house to awaken. She tries to snack all day and she keeps track of when it's time to take her meds. She's taking ownership and control because she does not want to be babied.

I, of course, want to baby her in the worst way. The maternal instincts are strong. I wish I could take it all away and make her be a happy go lucky teen, enjoying a summer of late nights, sleeping in, playing hockey, and sunning at the pool with friends. The truth is, we all have to accept and try to enjoy what she can do right now and not lament the things she can't.

Some good news on that front today as Dr. Rodriguez was pleased with Shannon's checkup and gave her the go ahead to increase her exercise a bit. So tomorrow we're off to the Athletic Club to give Shannon's Speed, Agility, Quickness class a try. This is another activity that has been on Shannon's wish list, so being cleared to give it a go feels like progress. I hope Shannon can enjoy the opportunity to be out there and not be frustrated by her limitations. It's all part of learning to live with her disease. For all of us...