Untitled.

It's been a rough go the last few weeks since Anna's surgery. I know in my previous two blogs I wrote about our beach day and the additions to Anna's room... I've wanted to focus on the great positives lately...

What I didn't want to write is how we had to leave the beach early because Anna went into a huge, inconsolable crying fit and the new wall stickers in her room are starting to unstick and fall down because of the crazy humidity.

What I didn't want to write is how the cutesy baskets I have arranged on Anna's new shelves are labeled in pretty writing: G-tube Supplies; G-tube Packs; Gloves and Extras; Nebulizer Meds and Chest PT. The hat boxes on the upper shelf are organized with the big hat box holding all of her medicines, the medium one holding all of her sinus rinses and suction bulbs, and the smaller one holding all of her Rosaries, prayer cards, and special gifts we hold dear to our heart.

What I didn't want to write is how every night I rock her before bed, I look at those labeled baskets and I am sad. "Those should be labeled with the different types of toys and books she has," I think.

What I didn't want to write is how the g-tube has aggravated her acid reflux and made it worse, which has resulted in doubling her original dose that I don't find is working very well.

What I didn't want to write is how we are still having trouble hitting her nutritional targets because she can't handle the amount she needs... The bolus feeding usually results in severe congestion and crying and the night feeding leaves her full and not wanting to eat the next day.

What I didn't want to write is how much Anna has regressed since surgery. We went from rejoicing over her shimmying off the couch and standing on her own two weeks prior to surgery to no longer sitting on her own. She barely rolls over anymore. We went from having corrected her strabismus (lazy eye) and not having to patch it all to her eyes reverting inward again. We went from slight tremor episodes maybe once a week to tremoring all day long. From morning until night. We also went from sleeping all night long for a year and a half to having two full nights of sleep in 3 1/2 weeks. The others have been, well, restless. I feel like I'm back home with a newborn.

And I go from seeing Gabe's friends with other siblings Anna's age walking and talking, to Gabe asking why Anna doesn't run fast or really run at all, but, hey guys, "look how cool her button on her belly is!"

We went to the park for the first time in months last week and we stayed 30 minutes. It was unfair to Gabe. But you know what I was thinking, sitting on that bench holding my handicapped daughter watching those kids her age play? That was unfair to her. To me. Rett, I hate you.

I saw a woman who was nearing her due date on the street today. I thought about when I was pregnant with Anna, and back to the the time the doctor found choroid plexus cysts on her brain when I was around 18-weeks pregnant. We had an amniocentesis done and everything came back perfect: XX46. And then I thought what were the chances of the cysts... then the amnio... then the "the perfect score." And then I thought about the statistics for Rett Syndrome: 1 in 15,000 to 23,000 girls.

I low-balled it. 15,000.

We are 1 in 15,000.

I can either be really mad or really thankful. Right now I am pretty cussing upset.

It's now 20 minutes past midnight and Anna has been restless and crying in her crib for over an hour now. I feel defeated. I have checked her head, her eyes, her ears, her mouth, her throat, her stomach, and her bum. I have ruled out sickness, teething, diaper rash and any other symptom you can think of. And she can't tell me what's wrong. She might just be upset it's bedtime. But I don't know - I never know - for sure.

There are days when I am so compassionate I feel I'd put Mother Theresa to shame. There are other days where I feel so hopeless and lost that I have to literally envision tape over my mouth and my hands tied behind my back to knock sense into me and realize Anna suffers with these two main handicaps EVERYDAY.

But am I selfish when I scream to the Heavens: "BUT I SUFFER TOO!"? How do other Rett moms do this? How do you press on every day? Tell me, how do I?

I feel like no matter what I do I fail her in some way. I have yet to order her personal talkers that are programmed "yes" and "no" to help her express herself. I have yet to print out the PODDS communication system that will help her communicate with me. I have yet to send our doctor Anna's testing on the My Tobii that she had last week so we can get the process rolling to receive one.

And when I try to make her sit up on her own again, and she protests and throws herself backward, I end up yelling, "You can do this! You aren't an invalid!" instead of coaching her with patience and love. Is it possible to run out?

When I try to assist and get her to walk from the kitchen to her bedroom, she barely takes two steps before dropping herself and going limp. But for her physical therapist, she will walk, one foot in front of the other, from my office to her bedroom, which is three times the distance. She protests, but she does it. Anna is only 2, yet I expect her to understand, "Mommy is working so hard for you, why can't you work hard for me? Why do you always fight me? Why do you always collapse? Throw yourself back? Yell?"

Even now, tonight, at 12:30 in the morning, I've disconnected the extension tube to see if maybe her belly just needed a rest. Obviously I was wrong, again, because she's still up, crying.

And I come here, and I let it all out... I feel not only defeated, but burnt out. I don't feel like ordering the personal talker. I don't feel like making this book I'm supposed to teach her that I barely understand. I am tired. Exhausted. Overrun. At the end of my rope and barely hanging on. The reserves of strength and hope I have often reached deeply into aren't near as full.

And this is all of that which I didn't want to write.