Oh Baby Girl.... tell me what is wrong. You play and you romp. You swim and you laugh. It is beautiful. It is as beautiful as watching the sunrise over the Mediterranean Ocean, rare and awesome. And then you start to show signs of slowing down like a robot slowly rusting out; one limb at a time you break down, an arm sticks out and stops, a foot juts out and freezes in place. Finally you have a fever sky high.
Or, like last night, you wake up screaming and writhing in pain. You cannot or will not tell us what hurts. I am so sorry baby. I am so sorry baby that I cannot make you feel better. I am your mother, I should be able to take away your pain. I should be able to comfort you. But instead you push me away. Did you have a nightmare about how I used to have to hold you down for dressing changes? Or have you learned already, at three, that Mommy cannot fix you little baby boo boos? Finally you did cuddle up into me. You gave in. You tucked your sweet arms into my belly and nuzzled your face into my neck. I could smell your hair and feel your slightly sweaty body clinging to mine. We rocked in the chair I rocked your brother and sister in when they were babies, I rocked you in when you were a baby. But you are not a baby anymore. You are almost four and you were in so much pain.
We tried to leave the swim meet before this new crash and burn cycle kicked in but to no avail. Each night you get a fever between 102.5 and 104.0. You threw up three times in the parking lot. What is wrong baby? What is wrong? Is this still the same flare? Are you just sick? Ear infection maybe?
As your mom I feel so alone. People keep telling me to do stuff for myself. Or not to worry so much. You and I know, Lil, we know. Because it is me and you together in this and of course Daddy too. But there is so much pain. And you are just a little girl. And I am your mom. I am supposed to fix this for you. I am scared Lil. You do not tell me when it hurts. We have to work together.
You are still you. You are the light in the darkness. You are a Graylyn Gator. Knowing you will most likely not be able to go to school, I work hard to find places for you to be safely part of communities of kids. This pool is the perfect place. I cannot say enough about how amazing thiese people are to us Lil, how wonderful they are to you. But you have found some friends. That is important to you. You always tell me you do not have friends when the twins go to school and it about shatters me. One of those friends is Nicky.
You love him. You two seem to get each other the way youngest siblings get each other, the way three year olds get each other, the way kids who like to swim get each other. He shares with you. You share with him. Last night, before your crash, you and Nicky giggled together for literally an hour. His mom and I kept making eyes at each other. I don't know what she was thinking. I know we were haring a moment of joy with our babies. I also know I was thinking my baby girl has her first real friend. You have been asking for months. All winter and Chris and Nettie grew in their social skills and friendships, as they should, you noticed that you were not doing the same. You noticed you were not going to school. You play with your toy school relentlessly. "I want a friend Mommy." "I do not have a friend Mommy."
I just want you to know I love you. I love you so much. And I would do anything to take away your pain. I have said I would not take away your illness because this is your journey. It is. But this pain and it going on this long it too much. Last summer was so free. You just played. I just cannot believe I can do nothing for you. I am helpless and frustrated. I love you. I love you. I love you.
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