Tuesday, February 1, 2011

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.


  1. I believe that day will come when she is a happy healthy little girl again, and nothing will stop her from running and dancing. She will get there. Its okay to be strong, but letting out a big cry is a good way to at least feel a little bit better. Im sure your husband would understand that you arent crazy. He probably needs to let out a big cry also. I hope Brinley starts to feel a little stronger soon.

  2. OH, my darling Moe. Have that big therapudic cry!! You will feel a lot better! Blake needs a release as well so have a big cry together!!
    You can't be everything to everyone. Everyday with Brincess is a good day, so take it won day at a time!! Brin WILL get bettrer!!

  3. All these feelings are "normal", you are not crazy, and you need to cry or shout when you feel you should. Let it out, it will help, you need to allow yourself that interval. I hope you can talk to those Mums going through the same thing, to reassure you, its okay to feel that way, and its really okay to cry now and then. The wonderful thing with Brin is, she seems to understand what is going on and is doing her best too, together you must just do your best, it is going to get better Morgan, think positive.....