Tuesday, July 12, 2016

The difference a year makes

A year ago, she was just out of the hospital--the second trip in her life over chronic issues. A year ago, we thought we were done with the ordeal. The call and the diagnosis that Lanie has Celiac disease changed everything.

I got the call in the parking lot at co-op where I was waiting for Nicole to give me the literature books for Ancients. The kids asked me as we drove away, "What's for lunch?" 

My hollow response, "I'm not sure." The nutritionist was scheduling a month out, and my kids needed to eat that day.

I remember those early days vividly, running and functioning mostly on sleeplessness and nerves. A month spent reading and researching before I could even look up.
first gluten-free chocolate chip cookies
mixes were a life saver in the early days
she was twelve and sixty-six pounds

We gave away a lot of food. I packed up all my former cookbooks. I bought new cookbooks (which I love!). Packed up baking equipment and some appliances. Got new baking equipment and appliances. The fun parts that reflected our new life. New Pinterest boards on gluten-free recipes and other things. The glass jars I love, and the labels made by a bestie. My husband built us a new pantry to hold new things--because now we have coconut flour, almond flour, rice flour, potato starch, tapioca and buckwheat flour.
protein bars, homemade

new space

gluten-free pantry
big (heart) jars

label love

That was the fun part--creating a new space of safety for my girl, so that she wouldn't ever have to question what she could have here. (Welcome, safe, loved, included.) Those pantry shelves were often stocked, and still are, by friends and family. And we are grateful.

There were hard things too. Celiac disease can single you out as the one who is too much trouble. She went from friend to forgotten, and, yes, that was hard. We became acutely aware of the role of food in social situations. But overall, removing the trigger that could lead to serious health conditions later far outweighed a temporary affliction.

I find myself thankful in the losses--as they have made room for something new. My girl? She's strong. She's navigated this like a champ. Her health is important and she looks out for it diligently. She's found new friends, and she's discovered who she is--and she is confident, funny, intelligent, delightful, and happy. In a lot of ways, this diagnosis opened new doors.

"You're a different person," her doctor said to her yesterday. (She is!) Lanie just smiled. All four inches taller and thirty pounds heavier from her diagnosis a year ago. This is thriving. She's got low D, which is not uncommon with Celiac disease, and her transglutaminase IgA is down from over 100 to 6. We're getting there.

a May picture
"Looks like you're doing all the right things. The good news is," the doctor continued, "you won't have to see me for a year." And bigger smiles.

A year ago, all the changes we were going through felt encompassing and undefined. So much unknown. I learned a lot about community, even then, and more so throughout the year.

The heart breaks and breaks
and lives by breaking.
It is necessary to go
through dark and deeper dark
and not to turn.
~from "The Testing-Tree" by Stanley Kunitz

Standing from this vantage point, what a road that was, but look where we are! Counting the blessings--a healthy, thriving child; supportive friends and family; and a horizon sky so beautiful, I don't want to look long at the shadows behind me.

Thank you, God, for your provision, your strength, your guidance and your faithful love. We are also thankful for friends, family and neighbors who walked alongside us this past year, whose love for Lanie wasn't intimidated by the diagnosis, and whose love for all of us was expressed in encouragement, inclusion and precious provision.

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