I'm sorry, I haven't had enough sleep to have more imagination than that today. Sarah went to bed late because the blood and platelets they topped her up with had her bouncing off the walls. Then eye drops at 3, then she wakes up at 8 crying because her stomach hurts, badly. She spiked another fever, tylenol did nothing, and the fever went even higher to 103.5! Sarah cries harder because she can't open her eyes, which Kara says is probably conjunctivitis because of the Ara-C, despite our torturing of this child three times a day with the dreaded eye drops! Sarah cries for two straight hours, and nothing I do can comfort her. I feel lost and alone and helpless. My husband asks if I want anything before he makes an appearance. What I want is for him to be here, I tell him. What I want is for her to be comfortable at least, if she can't be pain free. I want for her to stop crying, for her to stop hurting. I want for this fucking cancer to go away and leave us the fuck alone. That's what I want. But I don't say this aloud. I don't have the strength to argue today. Sarah begins to whimper again and I hang up the phone.
Nurse Kara pushes pain meds, which alleviates her pain at least to the point where she stops crying, thank Christ! She has to wait until 2 for the procedure to put her broviac back in. At least she had about a month of respite, and her one concern is that she won't be able to swim now. Her brief interlude with a normal childhood is over. All she wants is to be a normal kid, do what normal kids do. It should be the God-given right of every child, but this is her life. At this point, she has been fighting longer than she hasn't. Three long years.
I keep thinking about that, to the point where I'm almost sick of thinking about it. She had one perfect year. For her first year of life, Sarah was perfect! Perfectly healthy, perfectly strong. She was beautiful and vivacious, funny and sweet, SMART, everything a baby should be. Then at 13 months she had that seizure, and it was all downhill from there. I remember thinking during that perfect year that I was entirely content with my life in that moment. I had a husband who loved me, my stepchildren were improving and moving towards happiness in their own right, or so I thought. I finally got to hold my own child in my arms after three miscarriages, and she was absolutely perfect. I had a job that I loved, a career on the rise. My life wasn't exactly perfect, no one's is, but my child was, and I was content. Maybe I shouldn't have been so happy.
I have lost everything but my child, and she is struggling to live at the moment. I have never once asked myself why. God knows why, and that's all I need to know. I keep putting one foot in front of the other, I trust in the plan. I am a good little girl as always and do exactly what I know I'm supposed to do. But inwardly, I fight. I rage against the dying of the light. I am thankful for those who are with me in spirit, I am secretly resentful of those who aren't. If you can't make someone a priority when they're dying, when can you? I am disillusioned with it all. I can't help the way I feel, but I don't want to waste energy on things that don't matter, either. My daughter needs me, and I am essentially it. I am the one that's here, day in and day out. I don't have time to waste on bitterness or resentment.
Sarah cries and says that this isn't fair, that this is so much harder than she thought it was going to be. I am not paraphrasing. That is exactly, verbatim, what came out of my daughter's mouth. She was willing to fight, I asked her, and now that she's here in the fray, it was harder than she thought. At four. She said this at FOUR years old! She doesn't say she has "owies", or that she's sad, or simply cry for me like other four year olds. She says her medicine is disgusting, that she doesn't want to take it, that we need to leave her alone. She says that it isn't fair, that the cancer monster is trying to eat her, and that this is harder than she thought it was going to be. She blames her cancer for every ache and pain. And can you blame her? Essentially, she's right. I push back my tears, when all I want is a good cry. I have not afforded myself the luxury as yet. I don't have time, no one has the time for me to break down. Because I will completely lose my shit and be completely and utterly useless to everyone. I am it. I am her strength, and let's face it, when you're sick, all you want is your momma. I need to put my own selfish bullshit aside and be whatever she needs me to be, I need to be the woman I want her to become. She will do as I do, not as I say. I am afraid sometimes that she will mistake my feigned courage for stoicism, that she will think because I seem so strong, that she will think me unsympathetic, that she will think I don't care. But it only upsets her more to see me cry, and then she starts worrying about me, which I can't have. As big-hearted as my daughter is, and as funny as it sounds because all children are selfish, it's the nature of being a child, but it is time for her to be selfish now. It is time for her to worry only for herself, she shouldn't have to worry for me, too. And I am kidding myself if I think that she doesn't understand what is happening. She understands exactly what is happening here, and I am sure she understands my pain as well. When a child looks at you with a wisdom that far surpasses her years (she's FOUR!) caresses your cheek lovingly as a mother would do, and whispers, "It's okay, Momma. It's gonna be alright!" there is nothing more to conclude but that she understands all too well that I am suffering.
The other day, the very day that the doctor confirmed that her leukemia was back, I was packing up Sarah for our Disneyland trip, and she turns to me and hands me one of her princess crowns. "Here, Momma, I don't want this anymore," she says. Puzzled, because this child gives nothing away of her own volition, I asked her why, and she said, "I want you to have it. It will make you brave." Of course, all of the walls of bravery come crashing down at that point, and I start to cry. She's so little. Yet, she has a wisdom and strength that far surpasses my own and that of most adults.
All I can do is hope, pray, and do what I can for her. She is not ready to give up yet, so neither am I. I will never give up until the day she draws her last breath, whether that is in an hour, a week, a month, or eighty years from now. I will fight with whatever I have left.
This child can find a reason to dance when everything in her body hurts, when she has every reason to be whiny and irritable. If she can, then so can I.