System Recalculating….

Special needs parenting

He’s home. My rolly polly six month old little guy with kidney failure and the really, really, loud set of lungs is home. This one. The one that should never have survived. I still can’t quite believe it. How did I get so blessed? Honestly though, I’m not really sure what day it is, and I’ve had at least fourteen cups of coffee already so here’s my random thoughts on the new, completely crazy, sorta fun, sorta terrifying new normal we’ve got going on around here. First you need to know that having two tubies around is insane. They’re beeping, trying to pull out tubes, throwing up, setting off alarms, you name it, all at the same time. Except for night time, then they take turns…because parents should not, under any circumstance, be allowed a full nights sleep. Real cute aren’t they. If you have multiple children, you know that … Continue reading

Lessons on gratitude from a preemie

Lessons on Gratitude from a Preemie

Today my mini girl turns seven months old. I can hardly believe it’s been over a half a year since I first met her tiny little self. In a few weeks she will be coming home. Home!! As in, I can see her anytime I want, home! As in, this really is my kid to keep, home! As in, yes your sister does exist, home! After seven months of daily hospital trips…seven months of starting every day with a phone call to the hospital to see how she did last night…seven months of praying with the big girls for baby sister to “feel better”…seven months of life revolving around the happenings in the tall building on East Cheves Street…it all will change to a whole new normal that is on the one hand excessively exciting, and on the other, completely terrifying. Terrifying because I’m the mom who can barely stomach … Continue reading

What a micro preemie taught me about Mother’s Day

My Micro Preemie

I’d never seen the short brown haired lady who appeared at my bedside before. A kind face with intelligent eyes looked intently at me while she spoke slowly and clearly so I would understand. She was a representative from the land of sick babies, here to explain words I’d never even heard before.  Neonatologist. Five hours previously I couldn’t have told you what that word meant. Even now I just knew that it was code for “smart person who knows a lot about tiny babies”. Please just go away. You are a busy person, and our baby is fine. I’m only here for observation, don’t you know that? Even as the thoughts swirled through my brain her voice droned on and on…statistics of survival, probable and possible problems micro-preemies face, typical treatment plans…not the sort of information any mom ever plans on hearing, let alone having to understand. And then she was gone, and … Continue reading