Crap.

I have already been to bed once. Anna has been sleeping in our room while we are revamping the apartment. By the end of this major project we've undertaken, we will have painted 6 rooms, moved 4 rooms (Gabe into Anna's room, Anna into our room, us into the living room, and the living room into Gabe's room), and reorganized what seems like the entire place... It all began with the daunting reality of lots of new adaptive equipment coming our way, and wondering where to put it comfortably, then wanting to give Anna a big enough space for her therapies and home education, then wanting to give Gabe a more "grown up" room and a more organized room, and then give ourselves a living room where we can actually entertain without stepping over adaptive equipment and into a playpen, and also a bedroom that is functional for us and more organized.

I have anxiety at the thought of this major project, but am also excited for the finale.

So back to Anna sleeping in our room. I now understand why there were many mornings where I would find Anna docile and lax when I'd pick her up from her crib after a full night of (I thought) sleeping. She tosses and turns all night long! If she isn't kicking her legs against the mattress trying to make a "Boom Boom Boom" rhythm, she's rolling from one side of the crib to the other. If she's isn't doing any of that, she is grinding her teeth so loud and repetitively that I've found myself placing one pillow over my left ear and burying my right into the mattress.

So tonight, I go to bed. And the antics begin. Neither of us are sleeping. I bring out the YES and NO buttons.
"Anna, are you tired?"
YES.
"Are you hungry?"
YES.
"Do you want a bottle?"
NO.
"Do you want me to feed you through your belly?"
YES.
"Ok, mommy is going to get you some food and medicine to help you sleep better."

I set her next to Manny, who is blissfully sleeping away. I feel bad waking him up, but I feel more bad for Anna, who is trying to do everything in her power to get him to wake up and pay attention to her. First she starts by patting his hand. No response. Then she starts hitting his arms with her arms. No response. I tell her Daddy is sleeping. She pouts.
"Do you want me to wake him up for you?"
YES.
"Only for a minute, ok? To give you a kiss, then we all have to go back to sleep. Ok?"
YES.

I leave them together to go get her tube ready with Melatonin. We've been using a lot of Melatonin lately.

I come back, Daddy is sleeping again. Anna is laughing... She thinks it is so funny that Daddy is sleeping, and she gets to watch. She laughs and laughs. Squeals with excitement. I am usually very happy when she is so expressive.

But I am sad. I've been so damn positive lately. But I've been faking it. Tonight, I couldn't fake it any longer.

I go to the land of "What If..." and I stop myself. Then I go the land of "How did we get here?" and I stop myself. Then I lose all self-control and begin to go the land of self-blame, which is a hopeless, fruitless land that only leaves me worse off than the lands of What If and How Did We Get Here, combined.

I go back to the day when Anna was only a few weeks old and I noticed she wouldn't cry when she was hungry. Or cry when she was awake in her crib and needed picked up. Or cry at all. This is too easy, I'd tell myself. But then I'd chalk it up to having Daddy's easy-going personality, and assumed she inherited it. Abuela shared with me that Daddy was the best baby ever who hardly ever cried. Crisis averted, I'd tell myself.

But one day, I couldn't believe she was "normal" for not crying. I decided to not nurse her until she showed me any sign of discomfort or hunger, so I could learn her signal for when she became hungry. By 1 p.m., she hadn't expressed any desire to eat, and we had usually nursed 3 or 4 times before then on a daily basis. I of course fed her, and she happily ate away, but what baby was so easygoing they didn't cry when hungry? I stuffed the worry down. It was confusion on my part, I said. I obviously didn't "get" or understand my own daughter.

I "got" Gabe. I understood him and he communicated his needs and wants. We had a connection. I thought maybe I forgot how to mother a baby. Perhaps Anna and I were cursed with the tumultuous, oft-written about relationship between Mother and Daughter. Different personalities, I thought. Had to be.

Yet the connection didn't deepen. I kept her on a strict nursing schedule to make sure she was eating and she gained weight beautifully. (Until I realized at 15 months she hadn't gained a thing since 10 months. Before then, she gained 1 pound to 1 1/2 pounds a month.) I changed her diaper every 2-3 hours because she never let me know it needed changed. I kept hoping for the best. This too shall pass, I said. Over and over and over again.

And as months went on, we dealt more and more with constipation. We tried everything. And again, we didn't see what was happening under our own eyes. Anna no longer fed herself biter biscuits. Anna no longer said Dada. Anna no longer rolled around on the ground, trying to get to Point A and Point B. Anna no longer responded to her name. Anna suffered. And she began tremoring, all the time.

Where was I for all of this?

Out hoping for the best.

And then. Genetics. And then. Rett Syndrome.

How does a moment like watching Anna laugh at her Daddy sleeping bring all of this crashing down? I thought, she is so happy. He looks at her and smiles, but his eyes are sad. I am still... So sad.

And the emotional regression begins. Stupid grief stages and their neat little titles, I think. My messy emotions don't fit into those titles just once. I'm all over the grief-stricken board. Where is Daddy's chance to walk Anna down the wedding aisle? Where is my chance to go pick out Homecoming dresses or Prom dresses? Where is our chance to rejoice in a normal life for Anna? Am I so selfish to wallow in this sadness and self-pity that I am just as sad for us as I am for her? She is in our room right now, as I type crying over the laptop, talking to herself trying to put herself back to sleep because Rett won't let her sleep and all of my efforts of bolus feeds and Melatonin and rocking and singing and soothing have failed.

Perhaps all of this emotional crap (yes, that is what it is. Crap I am sick of dealing with) plays into my problem of being so damn self-defeating. It became crystal clear this evening when talking to my friend who's running the NYC marathon tomorrow. She asked me if I wanted to run a 10K with her in December. I'd love to, I thought. I could totally do that. I committed. Then, I recall the numbers on the scale right now. I recall every other attempt at getting myself back in shape in the last 2 years. I recall this Crap, not sure if it's just an excuse or just plain fact: My life is absolutely crazy right now. Do I need the release? Yes. Do I need the stress? No. Should I do it? Yes. Can I do it? My first answer is No.

I fight harder for Anna, Gabe and Manny than I do myself. If this were any of the 3 of them fighting this internal dilemma, I know what I would say: Clean up the Crap! You can do it! Are you kidding? Don't even begin to doubt yourself! You are strong! You can DO this! And I will be behind you 100%!

Am I just tired at the end of the day? Is it laziness? Or fear of failing? All of the above? Stinky crap.

I don't know... What I do know is that I have to go help Anna get some sleep. Maybe tomorrow will bring some resolution. In the morning, we are going to watch the marathon as the runners head over the Queensboro Bridge. Then we are going to head to Mass, where I will contemplate whether or not I should say Crap in church, and wonder if maybe God can respect that I'm bringing all of my emotional Crap to Him or if He'd prefer me call it something else.