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The Sunrise of Your Smile
For I would wander weary miles Would welcome ridicule, my child To simply see the sunrise of your smile To see the light behind your eyes The happy thought that makes you fly Yes, I would wander weary miles To simply see the sunrise of your smile -Michael Card
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Be Still My Soul: Torn & Stitched
We are almost 3 months into this journey, this new chapter without Blue. In some ways it seems more real every day, and in others more surreal. Whichever way, it doesn’t feel “right” being separated in this way. I’m doing “normal” things like altering a dress for homecoming for one of the girls, and taking…
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Of Birds and Bagpipes and Words that Matter
Oh my goodness, kiddo, I tried to make your service as awesome as you were. On paper, bagpipes and birds, and costumes, singing sisters, loads of music and speeches sounded like the kind of hilarious fun you loved but it scared me. It had more than a little potential to go completely off the rails…but…
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A Legacy
They told us that he could no longer survive without a ventilator. Last year, Blue made it clear that he never wanted to be put on one again. We made the impossible choice to honor his wishes, and then came the final days. We knew he couldn’t stay, his kidneys, his gut, his lungs were…
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Memorial
Blue’s service can be viewed here: Nathanael Blue IliffAugust 26, 2005 – July 20, 2023 Nathanael Blue Iliff, age 17, of Overland Park, Kansas passed away at Children’s Mercy Hospital, succumbing to a long and painful battle with the sequelae of untreated severe newborn jaundice – kernicterus. A visitation and memorial service will be held…
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Adieu, for now
I imagined that childbirth was the pinnacle of any pain scale. It is not. Watching your child ebb and flow from this world to the next – those contractions??? They tear something deep within that will never be mended. And then – the guttural ache that infiltrates every cell of your body? There is nothing…
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In the Wilderness
Speaking into my own years-long radio silence here today. I can’t even begin to play catch-up, so I will just speak for today. Today we wrap up our third week in the PICU for what began as some midnight vomiting, then escalating his body into what is called status dystonia (or status dystonicus) and necessitating…
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DBS Day Deux
Tomorrow we go in for Deep Brain Stimulation. Again. We lost the DBS last year to infection. In the year that followed, we’ve become much more intimate with this hospital. In and out. It’s been a home and a prison and a harbor more than ever. Procedure and surgeries and complications one after the other.…
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DBS: Can We Keep It?
An unplanned complication (because we never plan them, do we?) led to an unplanned surgery* with Blue’s Neurosurgeon on July 5th (without the horrible haircut this time!😉), Multiple surgeries to follow this summer (one with the same wack haircut he got last summer). We wait for a phone call…days, weeks, a month? Much on the line.…
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Yellow. It mattered. It matters.
A lot has been going on out in the wilds of Kansas these days. As many of you know, I lead a non-profit called pic-K, a calling that guts me and fills me up! In October, just 1 month after my son’s brain surgery and weeks after our VP Susan’s daughter’s brain surgery, God had…
a rearranged life
forever changed and changing
a rearranged life 