I've seen that look. I've been in your shoes. Once I was you. I was the mama judging the other mama from the outside. "Look at that child's teeth! Her mama must not make her brush!" "She stayed up 'til 1! It's a school night!" But now that I am here, I"m so sorry. I understand and it's okay.
I was always a believer in routines. In fact with Harrison, it was easy. I let him cry it out. He was going to sleep in his own bed. But with Abbie the routines were a nightmare. She began having her monthly fevers from PFAPA when she was only four months old. My nighttime sleeping routines became nonexistent and I became a walking zombie. I would wake up several time to check on Abbie or to put her in a bath when she was too hot. When I was asleep she would wake up and cry for me. Eventually I would give in to putting her in the bed between her daddy and myself. There I could easily reach over and feel her forehead every time I woke up. I learned to live on coffee. My house became a disaster. And on days when Abbie's fever reared its ugly head, I would come home from work and hold her in the rocking chair and that is all we would do. Dinner would go on the back burner. Who can fold laundry when Abbie is holding out her little hand and motioning for you to come. Those big brown eyes look at me all glossed over from her fever and I melt to anything she asks. During the times when she isn't having a fever, PFAPA still runs our lives. Her symptoms range from joint pain to stomach pain to headaches and there was always that unknown of wondering when her fevers would return. And now all the medical bills. Abbie just had all of her back teeth capped....she has a shiny silver smile now. The fevers wrecked havoc on all those beautiful teeth. No matter how much we brushed, flossed, or rinsed there has been no hope for those teeth since that first fever wracked her little body.
Friday we got her 504 plan in order. Her teachers and school nurse understand her needs. Today they got to experience their first PFAPA fever and did everything to be able to keep her at school as long as they could. Tomorrow she will probably be staying home on the eighth day of school, but I've decided that it is okay. PFAPA will forever be in charge of our routines and will control her life. All of my dreams and hopes will have to yield to that mistake in her DNA.
This is yet another thing I now struggle with. I keep asking God to heal my little girl. Yet here she is still suffering. Her fever scares me and the uncertainty of what it does to her body scares me. He made her and yet he put this mistake in her DNA. I watch other parents who have no idea what it's like to deal with life threatening fevers and I am actually jealous. Why has God done this to my little girl? Why do I have to be so tired all the time? Why can't I juggle all of this? And then I think that I'm blessed! I mean of all the disorders, this in the grand scheme of things is nothing. We can do this. God doesn't give us more than we can bear. I pick her up in my arms and hold her close and wish I didn't have to leave her for one moment. We snuggle in the bed together and I feel her warm face resting on my shoulder and I accept that this is where we are and one day I will see just where our destination will be.