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Birthday Letter to Esper

Dear Esper,
It's two months after your 3rd birthday and I'm finally sitting down to write your birthday letter. Two was quite a roller coaster of a year! Mostly because of what I've had to go through. Starting school, Celiac Disease, moving, etc. I've shaken up your world a bit this year and I hope it's ok. Yes, there is guilt about all the times I felt sick. Seeing your mom laying on the floor was hard for you when you wanted me to play with you. I'm sorry. I'll probably say that a lot in our years together. (And after you've moved out and started your own family.) I'm a very imperfect parent and you'll learn that one day.

I recently heard about a study where kids are given a cracker box and asked what is inside. They say crackers, of course, even though the box is filled with rocks. But when asked what the kids think their mom would say was in the box, the 3-year-olds say "rocks." The older ones know that their mom would think it was crackers too. But no, not the 3-year-olds. You are still at this developmental age where you think Mommy is Queen of the World. I must admit, sometimes it is nice. You ask me regularly, "Mommy, do you know evee-thing?" I say no, but you seem like you don't believe me.

You have taken to following me around our entire tiny little duplex apartment saying that you want me in the same room as you. I'd like to point out, dear, that the entire apartment is like one single room. It's been really hard for me to have you attached to my side every time I look down, like a new puppy learning to heel. I frequently turn around and bump into you. I don't know what it means except that for whatever reason, you want me around a lot. I'll take it as another phase in your development and try and embrace it, because one day you will most certainly not want me to rock you in my rocking chair and sing you songs. We could do that all day if it were up to you.

You're very hilarious and what's great is you understand humor and know what will get a laugh out of me. ("Mommy, smell my butt." *giggle, giggle, giggle.) It's hard for me to understand how you are so intellectually mature yet have a hard time getting to the potty to pee in time. You love to dance and will make me put music on a few times a day so you can shake it. You come up with some great dance moves and look so free when you're prancing around the room. It feels like pure joy captured in a 3-year-old.

We all grow and mature in different ways and it has been so fun to see your brain mature in (what a proud mom thinks is) a very quick way. You have begun coming up with elaborate stories to tell your stuffed animals about girls who live in the woods and have adventures. You come up with thought-provoking questions that I can't answer like: "Mommy, where does God live?" You tell me you wish your daddy lived here with us so you could see him all the time and my heart flip-flops and then falls over exhausted.

You challenge me in so many ways. You force me to be patient when I don't want to be, assertive and consistent when I feel I lack the skills, and loving and nurturing when I sometimes just want to be alone. You hug me when I'm sick or sad and insist on that making me "feel all detter now." You get "so 'cited" to go to the park or see a friend or go to the lake that I can't help but feel that maybe I should be getting more 'cited about the simple things in life. Thank you for giving me all this and more every day. I love you more than you could ever know.

Love forever,
Your Mommy

Thirteen

I was at the pharmacy waiting for my medication and the nausea came. But with it came fear, frustration, a need to be understood, a need for answers. It all accumulated and here I was, crying in the pharmacy. The sweet pharmacist brought me a box of tissues and asked if I needed anything. My daughter went into nurture mode because this is just what she does. She has since she was tiny. She climbed up on my lap with a tissue and wiped every single tear as it was falling out of my eye.

"You all detter now Mommy?"

How could I tell her anything but yes, completely and totally? So I did. Even if it was a bit of a lie. Guilt. She shouldn't have to be the one wiping my tears. When she asks me what's wrong, how am I supposed to tell her that each day is a very large mountain for her mommy to climb? That just as quickly as I can have a good day where I go to bed feeling competent, the very next day it can all collapse. Then I am left wondering how I can be a good mom to her when I am such a complete jerk to myself.

We got home and I decided to do some therapeutic weeding. She joined me and was so happy to be digging a big hole. Our conversation became one about eating to become strong and she said,

"I goin' eat lots so I can get strong and dig, dig, dig and be a mommy to my babies." (dig=big)

Can this really be her profession of choice?

"How many babies are you going to have?" I ask.

"One, two, eight, eleven, twelve, tirteen!"

"Thirteen?"

"Yup!"

Somewhere between point A and point B, Esper decided being a Mommy is cool. Did I give her that? Does that come from me? My god, child. If you want to do this 13 times than I must be doing something right.

Today

We needed food desperately but she wouldn't put her shoes on to go to the store and I didn't have the energy to fight her. I laid on the floor, nauseous from either the bite I took of gluten-free english muffin or the strawberry banana smoothie I made.

All day she kept pulling out new toys and making new messes. As I tried to adjust the flow of air coming out of the swamp cooler (open this window, close that one, cuss at the heat under my breath) she made it very clear that she had a list of demands I was not meeting. "I'm thiiiirsty. I hunnngry." Not wanting to turn my oven or stove on to cook something (I need a microwave), I rummaged through the cabinets to find something to feed her. We eventually made our way to our local favorite raw food place to get some ginger lemonade, a vegan wrap, and some grapes. To my delight, she asked to use the bathroom three times in the twenty minutes we were there.

A plumber was downstairs fixing something so my water got turned off without my knowing and I had just pooped. Did I mention that my kid is extra sensitive to smells due to her submucous cleft palate? "Ewwww Mommy what dat smell like?"

All day I had to limp because my right knee had decided to not work. Shooting pains through my right arm occasionally joined my knee pain. Stomach cramping had me moaning in pain in the library too.

She did great with peeing all day. No accidents. But she still doesn't know there's poop until it's coming out of her. And onto my foot and my favorite pair of sandals. After her bath I read her three books and put her to bed. She yelled after I shut the door and wouldn't go to sleep until I stayed and rubbed her back. She finally fell asleep around 9:15. The house was a mess. It called for me to come and clean it and finish those dishes I started. My digestive system called out for me to go to bed so it could get some healing time in. We live in a small duplex. I need space and time to myself and this short time is all that I get. And here I am blogging.

P.S. I just killed the nastiest, biggest spider that was crawling on my arm.

Celiacs + Sugar = No Bueno.

I haven't posted much about my diet and my newly diagnosed disease since March. I thought four months later I'd at least be on the verge of feeling awesome. And in some ways I do feel a lot better. But I'm still struggling with headaches, feeling tired, and sharp stomach pains. Kudos to those of you who actually go on an elimination diet. That really is the best way to figure out what foods you are sensitive to. After cutting out gluten, dairy, and recently red meat, I'm starting to see a pattern when I eat sugar. Ahhh sugar. The glorious ingredient that makes food taste good. Especially gluten-free food. Well SURPRISE, many celiacs suffer from fructose malabsorption. Am I surprised? At this point my body is having a hard time digesting air.

Here are some foods you should avoid if you are experiencing fructose malabsorption:

• Fruit — apple, pear, guava, honeydew melon, nashi fruit, pawpaw, papaya, quince, star fruit, watermelon;
• Dried fruit — apple, currant, date, fig, pear, raisin, sultana;
• Fortified wines
• Foods containing added sugars, such as agave nectar, some corn syrups, honey, and fruit juice concentrates.

Yup, apples just about do me in. And agave? Shit. Here I sit sipping on an Oogave root beer. Wine?? God must hate me. I can have foods that contain equal parts glucose and fructose, but it might be easier at this point to just cut out sugar altogether.

So... no dairy... no gluten... no red meat... and no sugar. Somebody heal my gut pronto.

Leave me a comment. Have any of you gone off sugar? Am I insane for even considering it?

Mom

I see her luggage sitting on the kitchen chair and slowly tiptoe into her room. There she lies on her bed, her knees curled up under her afghan. She was gone for a while, and now she is home. When she wakes her footsteps will sound even and premeditated from where I sit in my room under the kitchen. The steadiness is soothing. She just keeps going--one more dish to wash, one more shirt to fold. She never questions it, never leaves it for another day. Just continuous, dependable, repeating. Her ways confuse my scattered brain and bring it comfort. I owe so much to this woman who gave me everything. My love of art, music, and dance. My sense of humor, my love of learning, and my intense hunger to read. Her hand brushes through my hair. Her little frame hugs me tightly and she whispers she loves me. I wait for her to wake up so I can tell her I love her too.

Gluten Free, Dairy Free: What I Miss Eating

Lately I've been mourning all the foods I can no longer eat. For me, it's not necessarily the flavor that I really miss, but the social experience of eating whatever food it is.

I miss:

• Pizza benders from Italian Village (a family tradition)
• Pizza in general (though I had some killer pizza last week in Berkeley here.)
• Sandwiches from Village Baker.
• Sandwiches from Toasters.
• Being able to get french toast, waffles, or pancakes when going out for breakfast/brunch.
• Robb's killer homemade french toast. Hopefully we can find some GF bread so he can make it for me.
• My sister's homemade banana bread. Especially when she brings it over freshly baked.
• Donuts. Especially from Banbury Cross. Especially when my dad makes a random trip and brings some home on the weekend.
• Ice Cream. I had some coconut milk ice cream but it just wasn't the same. 
• In general, being able to eat anything at a restaurant. These days I'm limited to a couple items on the menu, and even then I'm not always 100% sure that the sauces don't contain gluten, or that the preparers did all they could to avoid cross contamination. 

It's surprising the things I don't miss as much as others. I thought I'd really miss regular bread, and sometimes I do, but usually it's because I want a sandwich. I thought I'd miss milk a ton but I've adjusted to my almond milk and like the flavor. One perk of going gluten free is that the food that is made to replace regular items like muffins (unlike bread) is soooo good because recipes are tried and retried to get the flavor just right. So muffins, cake, cookies, and some other sweets taste great to me. There are some really good GF breakfast cereals that I enjoy more than regular ones.

Looking pregnant but nope, I just ate wheat or dairy

Other things I don't miss:

• Never knowing when I'd be stuck sick in a bathroom- at a restaurant, at a store, with my toddler.
• Feeling bloated (and looking pregnant) and sick after every meal.
• The ten pounds I said goodbye to.
• The unhealthy eating habits I was making. (Much easier to avoid fast food now)
• How tired I always was.
• How moody I always was. (still have my moments. ;)

So I try to count my blessings and appreciate the good when I'm crying over not being able to eat something I really want to. It really is a lifestyle change, and I'm still in the learning phase. I'm looking forward to a future that includes me being more prepared, more knowledgable, and more in control of the food I eat.