The sad elephant

I stand in the laundry room, holding the door from the garage open.  I watch Brinley has she conquers one, two stairs, stumbles on the third and can barely lift her leg on the fourth. I ask her if she needs me to hold her hand and she politely declines, "I can do it myself".  After we get our winter gear off she sits down on the floor. "I'm having a bad day" she tells me, "my legs don't listen to me anymore and I tell them to lift higher and they don't, so I can't go up lots of stairs."

Lately she is weak because her hemoglobin has been down, not enough for a transfusion, but it seems to be walking the lines of "almost"  They transfuse at an 80 count, as of Monday Brinley was 81, she's almost boarder line with her neutrophil counts, .5 is dangerous, and Brinley is .6 right now.  It could have something to do with her being off of her antibiotics for 2 weeks, but it's hard to tell. They did however put her on another antibiotic to see if she can keep it down, if not she'll have to have a monthly inhalant and IV done to ward off any infection, primarily pneumonia. So her blood work was ok, not great, and it has been better, and in 10 days we will see again.

 I've had this little sad elephant sitting on my chest.  I find myself laying in bed at night, thinking about everything that's taken place since November, I try not to revisit those feelings but it's easier said than done.  I find myself taking deep breaths to keep the sad elephant at bay, but my mind wonders back to the day of diagnosis, and I tap into that moment of panic, disbelief, and pain...I can never wrap my mind around the pain I felt at that moment.  Even writing about it, I have to take a moment and look away from the computer screen, it's like my body is involuntarily saying, "get a grip, and come back to this." My heart is broken for my little girl, I find myself crying over the days before all of this. Before we became a familiar face in the Children's hospital. I miss the days of her running because she could, dancing for no other reason than walking was plain old boring, somersaulting across the field because it was more fun than walking. I'm finding it harder and harder to stay so calm and put together, I'm terrified if I get too emotional I'll lose any control that I have gained. I'm scared my husband will think I'm losing my mind. I try to let it out little bits at a time when I'm alone, but it doesn't seem to help much.  Maybe I just need to stop holding out and have a nice big long therapeutic cry.

 I hate sounding like a broken record, but I want this to be over.  I want the doctor to tell me, "we made a mistake" or, "it's a miracle she's cured!"  I know that day won't come to light for seven years, but it WILL come. It has to.