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Category Archives: What others take for granted
Talking about the realities with our kids.
Me: “MRSA can be deadly, you know.” Gage: “Yeah, Quinn, I’ve had that too.” Simultaneously Quinnlin: “WHAT?” and Julian: “Don’t tell her that.” Me: “It’s the truth. It’s not like we can hide those facts Julian, plus we have to tell them … Continue reading
Spoken in the Mutant Family Household, ER Edition
Quinnlin (on the way to the hospital, reaching for lip gloss in my car): “Can I use your lip gloss?” Me: “Of course, but you know we’re on the way to the hospital, right? You probably don’t need lip gloss.” … Continue reading
Surrounded by the love of a public school.
http://youtu.be/kKWqUgS5Vbo
For the last nine years, we’ve sent Gage and Quinnlin off to our small neighborhood elementary school. This week marks the transition to middle school for our youngest, which means we give up the safe, nurturing environment of that special … Continue reading
For better or worse. Or worse.
I am not sure when I knew I’d get through some hard times with my marriage to Julian intact but I am sure I thought it would be when we said, “Yes” and “I do” in 1994, but it wasn’t. … Continue reading
This Mother Wants
On Friday I was in an ER room with my son, who now feels fine (I know!), he’s playing a game on his phone and holding a stuffed animal, which is what he does when we’re here. I was thinking … Continue reading
Posted in Story telling, What others take for granted
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Among My People
Last Friday I traveled to New York and carried my bag off the plane to load them up in the car of a friend who lives there. Michele, co-coordinates the chapter that serves the ARPKD/CHF and Pediatric ADPKD population through the … Continue reading
Life of Immunosuppression
Sometimes parenting a couple of kids who are immune compromised is something I don’t even think about, not really. Sometimes parenting a couple of kids who are immune compromised punches me in the face, as was the case in the … Continue reading
Six Years of Kidney Function
Six years ago today I was sitting on the bed with Gage, who was a little overwhelmed that he was about to be wheeled into surgery just minutes after we heard the words, “Her kidney is perfect!” from the team following … Continue reading
Healing through music.
A couple of years ago I heard about a baby who had been born with ARPKD, as I often do when someone calls the PKD Foundation. His name was Myles. I didn’t speak to or know anything about the family … Continue reading
Posted in Kidneys in general, Story telling, What others take for granted
Tagged ARPKD, Lullabies, music, PKD Foundation, Sara Mann, Tears in Heaven
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World Kidney Day
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