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Our Life is…

Hilarious, Joyful, Medically Complex. Food Allergies, Mito, CHD. Toddler, Tween, Teen. A new adventure every day.

A Prayer of Thanks for Church

God of Community, Thank you for church. Thank you for a place to gather in our brokenness and dustiness and fumbling, in our joys and sorrows and wanderings, in our failings and weaknesses and fears, and especially in our aching... Continue Reading →

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I am dust.

Today is Ash Wednesday, the first day of Lent. I did not grow up with the liturgical calendar, but oh, how have I grown to love it. There is something beautiful in being carried along by its current and in... Continue Reading →

Rare Disease Day

Today is Rare Disease Day, the day the zebras show their stripes and remind everyone that hoofbeats don't always belong to horses.┬áIt is the last in a month full of awareness days for us (Feeding Tube Awareness Week, CHD Awareness... Continue Reading →

Christmas Letter 2018

Dear friends and family, It is Christmas Eve and I am writing our annual Christmas letter, in my pajamas once again, because I am what they kindly refer to as a "sprinter" (which is procrastination viewed through a rosier lens).... Continue Reading →

You say

You say I support hate and death, but every day I wake up and pray that love will lead me, that it would drip from my words, that it would help me see the divine in everyone I encounter, that... Continue Reading →

A Wednesday Prayer

God of our Broken World and our Broken Bodies, Thank you for the breath of life, even and maybe especially breath that is breathed into us by non-sentient yet utterly life-supporting machines, giving peace we sorely lacked. Thank you for... Continue Reading →

Presence

Last night, Jo called me to bed early mostly because she has not yet forgiven me for being with K at the hospital last week. I know this is the root of it because a couple of nights ago at... Continue Reading →

What Mitochondrial Disease Means

It means that every morning and many afternoons, I mix a cocktail of water, formula powder, Gatorade, and Miralax for my 13 year old that will be pumped into her stomach (or intestines, if her stomach isn't working). It means... Continue Reading →

Here, God’s love is for everyone.

Today at church we celebrated Pride Sunday. I was asked to share a little about what the inclusivity of our church means to me, and this is what I said. This first time I visited this church, I was a... Continue Reading →

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