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Our Life is…

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

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Kyla

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 →

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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 →

Their lives are just as precious.

Last night, I was awakened by a small voice. It said, "Mama." I waited a moment. It said, "Mama! Hold me." So I said, "Come up here with me." The owner of the little voice scrambled up into my bed... Continue Reading →

Small things.

A week ago, there was another school shooting and this time it happened in our area. 10 more lives were taken. It is a thing that words do not touch, a thing that is too big and too grievous and... Continue Reading →

I hope Friday finds you, too.

Today, as I was driving my girls home from the hospital (routine tube change for K), my mind wandered back to our church Seder meal last night and how lovely it was. My mind was full of images of my... Continue Reading →

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