There is the tragedy.  It shapes me.  Yet the tragedy is not who I am.

In my own fractured way, I write.

I like cigars…

when they don’t make me wheeze,

which is 98.375% of the time.


It’ s hard not to let that special-neediness of my odd world define me. But I have some help in that…because, really, it’s all about God’s grace and finding the beauty in the crazy upside-down, right?

I rest my faith in Jesus Christ.  This could mean that I cling with undying affection to certain rules, or doctrine, or a spiritual feeling or…the list could get a little crazy…

The truth is – daily, all of those pitfalls that encircle and seek to entrap those clinging to the name of Jesus, they vie for my attention and my heart too.  I give in more than I like to admit.  BUT it is my prayer that with each passing hour that I find more joy in His name, His provision, His plan, His work in my life, and that my confidence and faith in His plan would be an ever-growing, ever-blooming thing.

I dig books like John Piper‘s titles like, The Dangerous Duty of Delight  and When you Don’t Desire God John Bunyan’s Pilgrim’s Progress, and especially the fiction of George MacDonald and C.S. Lewis.  Currently, my favorite is A Double Story by George MacDonald.  The older I get, the more I learn from fairy tales!  …and tragedy has a special place in my heart too.  Tess of the D’urbervillesAnna Kareninaand Hamlet: I will always love these!

I believe that we are designed to Glorify God and Enjoy Him Forever …even in and especially in our brokenness.

I love my camera….and any form of “catch and release”

I take pictures of weeds:  beautiful weeds, and kids, and wheelchairs.

I was born to parents that both find joy in the creation and capturing of beauty.  Dad is a photographer with, the classic stooped posture and easy squint of having spent a lifetime behind a lens.  Mom has ventured on more creative journey’s than I could count, and has a green thumb envied by many.

I once bemoaned the thought that they hadn’t shared more of their creative talents with me.  My vision was distorted.  I see that now.  Although they didn’t sit me down and lecture me on their talents…they lived them.  I now cherish the type of learning they gave me.  I didn’t even realize I was being taught.  It was no forced effort, but an absorption of sorts that was far more natural and lovely.

Cabinets lined with old journals give testimony to my love of writing…but for some reason I was blind to my own passion…until I began this blogging journey in June of 2012, and even then it took me a year to admit to myself that: like it or not, good or bad, I am a writer.  Seriously, when you run around your house jotting bits of thoughts and ideas on paper or in your phone all day…?  

reality check.

So…you may wonder what my special needs story deals with…



Although I knew better, I thought that there were certain things that would be handed to me…like a healthy child.  Somehow, without even being conscious of it, I’d imagined that I had the ability to situate the pieces of my life together like a puzzle. As you may have guessed by the title, Yep!

I. Was. Wrong.

I grew old quickly the day that my healthy 9 day old firstborn was forever robbed of many of his basic physical abilities…and all with an incredibly preventable condition called KI (kernicterus).

In a moment (okay…maybe hours and days, but what seemed like one), his hearing, digestion, movement, speech etc were all impaired.  If you dare to know our story, read Being Rearranged.

I now work to help the world see the smart boy in the body that doesn’t work, to raise his 2 busy bee little sisters,and of course have something, anything, left for the husband I adore!

In all of this, I struggle like the mess that I am and I give thanks to God for the great gifts that he has given!

Speaking of being a mess, I almost forgot to mention how much I love food! I really wish I planned meals.  I don’t.  My cooking is a living/hectic process!

In the Kitchen

It’s a love hate thing…the diet around here vacillates wildly between all out comfort (aka “junk”) food and something more like raw-vegan.  I’ve been on my own journey with a finicky stomach, and over the years as I’ve eliminated more foods, my stomach has become much happier.  But of course, avoiding eggs, broccoli, dairy, gluten, soy, almonds, sugars (processed), yeast, etc…  let’s just say I fall off the band-wagon here and there and live with the consequences…so don’t go thinking I’m the model of a healthy kitchen.  I do fast food more than I should.  I have my days where I shovel in jelly beans, and I have days and weeks where  I am able to tow the line.  It’s a wild rhythm, like all life. I cook hotdogs for my kids and roll them in greens. Everything in moderation, right?

But at the end of the day, I love to cook, and I love to cook WITHOUT recipes and measuring.  I’ll overlook the old favorite to try something new 99% of the time.

Cooking is like love. It should be entered into with abandon or not at all.

-Harriet van Horne Via.

It’s hectic.  There always way too many things going on while I’m in the kitchen…like a CHILD peeing on the floor (and the rocking chair she’s standing in), a cochlear implant getting lost,  a child needing to be transferred, children demanding-asking-needing…all while I’m trying to pan fry fish!

But in the end, the food makes it to the table on the porch (which is our “dining room” when weather permits) and it fills!

To sum it all up:

I write because I don’t have it all together,

because I need grace, and

because I’m working hard to chase beauty….

beauty in the brokenness, beauty in the garden, beauty in the kitchen, beauty in my children, beauty in this scrambled mess of parenting, beauty in the pain, beauty in a marriage full of trials, beauty in my savior…and it’s there, in all of it.  I see it…and one day, I will see it fully!

I blog to give thanks with pictures and words…

to be a testimony…a small and very broken vessel of a very great God!

John 9:1-3 As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”

4 thoughts on “Miriam

  1. My dearest little Miriam…you will always be that to me… you are amazing…. your mom sent me your site …. I haven’t stopped weeping… I am so impressed with your new venture… your writing, photography… and to top it off you get it… and you got it a lot earlier than we did. I am so thankful. I can only imagine what you have to deal with everyday and I pray for you and your family and special prayers for Blue… I always thought you were an angel and Blue is in good hands. We all have our row to hoe and God knows what we can handle. You are my hero I hope to see you and the family someday soon. Love always Jennifer

  2. Pingback: Fun Friday: The Liebster Award | Found

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