Soup and Salvation

I'm sitting at the kitchen table, eating a quick bowl of cereal and somewhat supervising the lentil, red and fava bean, orzo, chickpea and green split peas concoction I have at a rolling boil until things soften up a bit. With sauteed onion, carrot and celery in a chicken broth and diced tomatoes, I have optimistic hopes my new kind of soup is going to turn out. I know cooking can be quite therapeutic, and I really should try my hand at it more often. I realize the reason I am able to cook a bit even now, at 9 in the morning, is because Anna is not here, requiring constant attention.

Instead, I cook for my husband for when he comes home, because he is with Anna now, who is in the hospital for another respiratory virus that just beats her little body down, and Manny is there, holding her close as she gets nebulizer treatment after treatment, IV fluids, and lots of suctioning.

Just as a write that, I hear Anna crying out, fighting the hands that only want to treat her and make her better.

She was admitted last night, an unfortunate common occurrence that happens, so far, every 6 months. If you question, go ahead... Add it up. Born July 2008, admitted December 2008, then June 2009, December 2009, and now March 2010. I hope this little less than 3-month stint is only a fluke.

She is leaving the doctors perplexed, and all I can do is take these snippets of humor to get me through the experience. I had one E.R. doctor ask me if Rett Syndrome was spelled with a "W." I had another interrupt me describing her symptoms to ask what the tape was for on her back. Although I answered for her physical therapy to keep her from hyper-extending, I wanted to tell him it was velcro incase we got sick of holding her we could just velcro her to the wall.

Anyway, I haven't written so much in the last week because I feel like I am navigating through a dark world of emotions, and somedays I see the sun shining and my hope is very bright, and other days the light betrays me and I am left in complete and utter darkness.

I am dealing also with an overwhelming anxiety when I drop Gabe off at school and I see the other school moms there, with kids Gabe's age, and then little siblings in the one-year to two-year age range. And there they all are, tottling around and snacking on their Puffs and saying their Mama's and Dada's and some even the names of their siblings. I get angry. I want to yell at the moms "Appreciate what you have! Hug them close and don't ever complain that they talk too much or walk too much or drive you crazy!" I want to scream at them when they form their circle out front of the school, backs turned to me and Anna. I want to say, "Instead of ignoring us, why don't you just ask me what we both know you're thinking?"

I have to let this anger go. I can't let the bitterness swallow my joy or ask questions I will never have an answer to, like when I wonder "What my life would be if...." Right now, it's entirely too painful.

I think it will soon get better. I think I will soon begin accepting. I think I will one day wake up and no longer compare Anna to what she could be, she should be, I wanted her so desperately to be. I want her to tottle around a park. I want to hear her say Mama. I want to her babbles and singing. I want to chase her around the house. I want her to play ball. I want so much.

This whole experience has made the phrase "scheme of salvation" have an entirely new meaning. Because as strange as it sounds, I take comfort - literally wrap it around myself and my heart like a soft warm blanket - to know that Rett Syndrome has given my daughter one thing, and that's that she will never know sin. She will rise to the pearly gates and walk right in, Jesus holding her hand and she will walk. She will talk. She will sing. And I have the conviction to know I better get myself up there too, so that when we see each other, she can shower me with Mama's for an eternity, and what we went through in this life in this God-forsaken world made us work hard enough to get us to where it really mattered: an eternity of Heaven spent with each other and no physical limitations holding her back.

Well, the soup's rolling boil has come to an end (it tastes great), and I have to get myself up to that hospital to be with my girl, take up my shift and let the best Daddy in the world come home and get some rest. I'll update again as soon as we are released from the hospital, hopefully within the next few days.