After spending the last two nights at Egleston, Lars is now on duty and I’m at home. Jack went next door to play and the house is quiet, which is nice. It’s also a complete disaster which is not nice. It’s a complete mess, the refrigerator is almost empty, the laundry baskets are overflowing. And all I want to do is take a nap. So I’m compromising. I’m not napping. But I’m not cleaning either. I’m surfing. And feeling guilty.
I’m having one of those psychically down days, due in no small part to the cool rainy weather. But it’s more than that. During one of her previous discharges, I wrote about my fears of living with a kid on steroids, plus a whole bunch of other meds. Now, we will still have that, but we will be administering several of these drugs intraveinously. I know it’s bothering her…she’s told me over and over how scared she feels about the PICC line (what if something gets messed up?) and she is frustrated and angry (“I just want to be NORMAL”). It’s heartbreaking to hear that.
I want her to be normal too. I don’t want to have to allow an extra 30 minutes before school to let her have her IV meds. I don’t want to have to go through a huge hassle to protect her arm from getting wet before every shower. I don’t want to have to take her to the doctor every week for a urine test, and feel anxious while we wait for the numbers.
We had planned to put her on the swim team this summer, but it occurs to me, she might not be able to swim at all. Can you imagine? She signed up for camp, but I don’t know what we’ll do since they go swimming and canoeing every day. Sigh.
Thanks for tolerating my pity party.