When the lights are turned out at night, when everyone is in bed, I usually am the one sitting awake in the glare of the computer screen lights. I don't stay up because I'm not tired, I don't stay awake because its fun, or because theres anyone online...I stay awake because I need time to process the events of the day, to decompress, to unwind. I listen to Natalie cough and breathe, waiting for the slightest clue that we might need a trip to the clinic. I make sure Caitlin is covered, comfortable, and her TV is off....she constantly leaves it on and you just cant get a good night sleep with the TV on. I stare at the toys laying around that I'm pretty sure I asked someone to pick up, listen to the dishwasher run, stare at the pile of laundry, go room to room and look at what lay before me for the next day.
When the thoughts of what is undone have been processed, filtered, and left by the wayside, other thoughts creep in. How did we end up here? Why did we end up here? The fights that occur, the ones that come because I feel like I'm being pulled in a million different directions and the only result is that life is maintained, never improved. I want to do fundraising, I want to be the "fun" parent and do everything the girls want to do, I want them to have the perfect everything, I want the house to be spotless, I want the laundry to be done, I want the cooking and the grocery shopping to be done. Regardless of the fact that I prefer to see myself in the "I am superwoman, I can do it all" kind of light, that is simply not the truth, or perhaps it is the truth, I can do it all, I just don't feel like I am doing it right. I want someone to pass the buck to, I want someone to take the pressure off, when the truth of the matter is that the only one applying pressure is me.
I want my daughter to be healthy, I go to great lengths to make sure that everything possible is done to keep her that way, but I have another daughter, a 9 year old who doesn't have CF, who needs her mother just as much as Natalie does. I feel guilty because Natalie requires so much attention, so much time, not just because of her disease, but because of her age too.
Caitlin is coming into a sensitive time in her life, I remember being 9. It was hard, it was confusing and I needed someone to pick me up and show me that I was okay, everything was okay. I want to make sure that she knows that its going to be okay. Shes a spunky little thing, with all the life, energy, and imagination that comes with being 9. She's too mature for her age, seen too many things, been through too many things, sometimes I wish she would relax a little more, she worries a lot. Shes outspoken and insecure, she's protective over her family (especially Natalie) but opinionated about the choices that her father and I have made. I encourage her opinions, I encourage her to speak her mind, she is a people pleaser, always looking out for what others want, nearly to a fault...I'm trying to break that habit before its too late. I want her to know that her thoughts, feelings, and opinions are just as important as everyone elses, Its taken me 30 years to figure that out.
But when it all comes down, when the day is done, there is only so much you can do. I pray every night that I am doing enough. I keep telling myself that tomorrow will be better, tomorrow I will do better, do more. I think my children are happy, they have a lot of privileges and things that I didn't have, I tell them that I love them over and over throughout the day, I try to make them happy and I hope they are. But I have very real fears that I am running out of tomorrows, running out of time to make it better, to prove (even if only to myself) that I am doing EVERYTHING possible for my children. Caitlin is getting older and Natalie's disease is progressing. When does this end? Where does this end? Those questions make my skin crawl, make my heart hurt, and tonight those thoughts just cant be entertained.