Okay, so things have been up and down lately, and I don't quite know where to begin.
Day before yesterday Sarah had a complete meltdown and so did I, in front of our favorite Child Life Specialist. I had asked a volunteer to come in so that I could get something to eat because as I mentioned before, Easter was pretty crazy and I hadn't eaten in 24 hours. By the time the volunteer got there, Sarah was flat-out refusing to pick up something off the floor after Ashley (our favorite Child Life Specialist) and I had both asked her to do so. Having been given more chances than usual given the situation with her pain and fatigue, she was obviously pushing the limit, so I threatened to put her in time out. She still refused, so I went to lift her onto the bed for time out, since this seems to be the only place that I can contain her successfully. Imagine my surprise and resurgent anger when she bit me!
I firmly said, "NO!", whacked her double diapered butt so she knew I meant business, and placed her on the bed, where her diaper exploded. Yeah, she had failed to mention to anyone that she had pooped. So I cleaned her up, while Ashley talked her down, placed her on my bed so that I could clean hers, and when Ashley offered to help, I lost it. As a teacher, I guess I have it in my head that the kids who act like this, especially kids with severe behavioral problems like biting and choking, are kids whose parents are either absent, negligent, or over-indulgent. I am obviously not absent, I don't feel that I am negligent, and while Sarah may be spoiled in a physical sense, I don't feel that I am overly-indulgent in the discipline department, I even feel sometimes like I am too hard on her, because I don't want her to be a brat. So, I get frustrated, I feel like a failure as a parent, I feel like I am missing something. There is obviously something I don't get, something I am missing, because if I was doing what I needed to do, she wouldn't act this way.
Both Ashley, the Child Life Specialist and Nadya, the therapist, have assured me that I am doing all of the right things, saying all of the right things, and they think this behavior is a combination of Sarah's strong-willed personality and the confinement of her situation. All she wants more than anything is to go home, to get out of here, and she says this, twenty times a day. As a human being, it is almost a form of emotional imprisonment, to want to go somewhere, and know that you can't. I am doing the best I can to teach her coping mechanisms, to teach her to breathe, to escape in her mind, and it seems to calm her. Usually, we go to the beach in our minds, we feel the air on our faces, we play in the water, look for shells on the beach, build a sand castle. I ask her to give me as many details as possible to build this fantasy. It seems to calm her. Today, after she said for the millionth time that she wanted to go home, I encouraged her to go there in her mind, the way we go to the beach. She closed her eyes, and in our minds, we went home. I asked her to give me the details, and you should have seen her face. Had I not been so caught up in the moment, I would have taken a picture, eyes closed, sweet smile of pure happiness all over her face. It's the happiest I have seen her in a long time.
So, yesterday, after the meltdown, both Ashley who was here during the episode, and my mother, who listened to me whine about it later, both thought it was a good idea for me to get out and do something for myself, which is something I have trouble doing. As I said to Nadya, the therapist, I have always been the type of person to care for others, even as a child. I have always wanted to be a mom, so I tend to mother everyone. I put everyone else's needs above my own, and this got worse as I had children, and as those children grew and their demands became more prominent. I always put myself last. But as Nadya pointed out, I have more than put in my time. I have more than put in my best efforts. She feels that no one is more deserving of a break than I am, an occasional self-indulgence, and that it is not selfish to desire that or to partake in that. This is a notion I have trouble with, but I realize that they are all right. Knowing me, however, I think they knew I would never go on my own, so Ashley arranged for a volunteer to come sit with Sarah, and gently suggested that the nail place right down the street does excellent work. My mom, who was on her way for her usual visit, thought it was an excellent idea, and presented me with lunch and a wad of cash. Nadya, who came just to check in, thirded the idea.
I went to the nail place, and tried not to fall asleep during my mani-pedi. I went to the mall after that, and bought much needed "necessities": make-up, shoes (I love, love my old Cons, but they are about ten years old, and super thrashed. I think it was time. I did buy another pair of Cons, though. I felt way super old in front of the Doc Marten display at Journeys), and some much needed scrubs and creams that were kind of pricy but worked WONDERS with my old lady hands, brought on because my hands are CONSTANTLY in water. Even the sales guy could tell that I don't take care of myself as well as I should, so I decided to splurge and do something nice for myself. This was a big step for me. Every time I go to buy or do something nice for myself, I always talk myself out of it, saying that I don't have the time, or that there is a better use for the money, or that I don't really need it, all of which is probably true on some level. But my grandmother has a saying (in Spanish), which loosely translates to something along the lines of, "If you can't buy yourself something nice once in awhile, what the @#$% are you working for?" It's not really poetic, but it's true enough. I have been told countless times that taking care of Sarah is my job. And being a stay at home mom of any kind, whether your child is sick or not, is a quite thankless job at that. (Although being given a huge hug and kiss every once in awhile and being told that I'm the best momma ever is thanks enough for me). So doing something nice for myself every once in awhile, however selfish I may feel at the time, is almost like payment for services rendered. At least, that's how I got through the day yesterday.
Today, Miss Boots seems to be feeling so much better, and we are both having a better day. They took her down a notch on her pain meds, and she is still in a good mood, pain free. That is a good sign. The doctor said that while she may develop the graft vs. host disease at any time, meaning that the new cells will realize they are not in their own environment and start to attack her body, he is very pleased with how well she is doing at the moment. If he's happy, I'm happy.