Reflecting

"Who's going to go apple picking with us? Who's going to go hiking with us? Go on trips with us? North Carolina to the beach with us? Just, who will do anything with us?

I don't feel so good about being a family of three."

These words were spoken by Gabriel, Anna's big brother, today. And they are so simple, yet so resonating.

This picture was from August 2nd. We were taking on the beach in style; Anna would have it no other way.

She died 34 days after this photo was taken, on Sept. 5th.

I look at this photo, and if you had asked me before this whole damn thing happened, I would tell you that this girl could fight through anything. She had a spunk, a laugh, a personality those who had the honor of knowing her will never forget. A sign hung in her bedroom, "Little girl, Big attitude."

On my heart, a little girl, who many might say could not beat Rett Syndrome, or many who would say did beat Rett Syndrome, by freeing herself from the body which kept her prisoner.

The last blog post I wrote was Aug. 7th, 2011. I quit blogging for a few reasons. What had begun as a fun diary to capture all of Gabe's tender toddler moments and announce the news of the baby-in-the-making's arrival (Anna was 4-months in the belly at the beginning), it evolved from less fun G-fam moments to a journal on Rett Syndrome and what it had taken from our lives.

A few posts, I found myself in a pity party, woe is me, what did I do so wrong in my life to deserve this...

Talk about a God who makes all things new: on the way to the burial, following the most beautiful funeral Mass, (where Anna let me know her presence and prayed me through), I said to Manny, "Why me? What did I do so good in my life to deserve the honor of being her Mommy?"

Anna never spoke a word verbally in her young life, and yet the lives of those she touched I resolve is in the thousands. And I know the purpose of her dear life has all been revealed to her, that her suffering was not for nothing, and that she has an eternity to spend no longer trapped in a shell, a broken body that never worked the way that it should have.

On a tranquil level, I rejoice in the peace she feels, that she lets me know throughout moments in the day: Mommy, I am happy. And I am still with you.

On an entirely ridiculous and illogical level: I would give anything to have her back.

But I know she would give anything to not be back here, on this Earth full of pain and suffering, trapped and unsure of just how bad the retching episodes would be when she went to bed at night, or how sleepy and tired she would be on any given day, struggling and coughing and going everywhere with that damn suction machine.

I want to forget the last three weeks in the PICU. I want to forget the agonizing moments of the tube down her throat, the coughing over the machine and the broken blood vessels on her precious face from the pressure. I want to forget the anxiety, and the seizures, and the sounds of the machines. I want to forget the gagging, the retching, the smell of the new formula we weren't even sure was going to work. I want to forget the withdrawals, the whimpering and crying under the bipap, the blood in her mouth from the pressure of the machines breathing for her. I want to forget the look of her small body constantly shaking, the violent episodes when her body would twist in scary angles and push her against the bed, the EEGs and the unexplained movement disorder. I want to forget the anxiety over every blood gas check, the hopelessness when on a high pressure nasal canula her stats looked amazing and she looked at peace and then we found the CO2 rising higher and higher. I want to forget the looks of the doctors faces when we left the child life room with Gabriel and walked him into his sister's hospital room for him to say goodbye for one last time. I want to forget the inevitable wait. And I want to forget the nurse asking me, "Do you want to hold her Mommy?" and as I said yes, I put her in the position I always held her in to keep her calm, the one that looks like this:

And as we prayed her into Heaven, her head became heavier and heavier, against my shoulder, and all I could think of was how I was going to have to wait the rest of my life before seeing her again, touching her, pinching her cute little thighs that we finally managed to chunk up, kissing her beautiful cheeks, smelling and twirling her beautiful soft curly hair, and realizing my life would be left with an inexplainable void and unimaginable sorrow over the loss of my daughter.

There were so many good memories, but for some reason the last three weeks of her life are overbearing and mostly what I think of when I think of her. I try my best to push them away, yet they remain. I can't wait for the day to come when those three weeks are a distant distant distant distant memory, and what I do remember is all of the good, the fun, the precious, the love-filled times we shared.