Wednesday, April 4, 2012

When things go wrong


I don't exactly know what that means but I've sure been saying it a lot lately. It and plenty of other increasingly R-rated things. I've cried, laughed, been scared out of my wits, been okay with things, and then taken yet another dip in that pool of not knowing what the fuck is going on and why aren't there any fucking answers.

And it has nothing to do with Down syndrome.

It's just life.

But where to begin with a touch more coherence?

The Babe got sick as kids do. She coughed. She may have wheezed and rattled a little.

So we took her to the doctor.

The doctor said that Babe's not doing so well, that she should be admitted to the hospital. Something about her saturation not being so good. So we went to the ER to wait for a bed in the pediatric ward. This was a little kick. We'd just expected to get a prescription for some antibiotics or cough syrup and be on our way. She'd played so nicely in the car too.

We waited in the ER. We chatted. We updated Facebook. We played with the Babe. We fed her. She fell asleep.

And then she almost died.

She turned blue, her lips were purple, and she practically stopped breathing.

Let me tell you, I hate writing this. No one should ever have to even think this. Or worse. I was so scared and panicked those two words now signify something completely new to me. 

But she came back. She didn't want to go.

After two separate hospitalizations, for first 9 and then 6 days, she's getting better. There's nothing that can't be fixed. The neurologist assures us her EEG looks normal and that there isn't any permanent damage from the hypoxia she suffered. But, there is a flurry of diagnoses that contributed to this. Or that were made in the process of finding out what is going on. Some of them may be linked to the fact that she has Down syndrome, but even then there's only a slightly elevated 'likelihood'.

She had viral bronchitis.

She has pulmonary hypertension, severe mixed apnea (central and obstructive apnea), a patent ductus arteriosus, a patent foramen ovale, and reflux.

And right before we were discharged she had a serious bout of stomach flu. In which I and the Viking also partook.


What really matters at the moment is that she is breathing on her own most of the time, and only needs a little help while asleep.

Everything that I previously thought was in perspective has been torn to the ground and is completely under construction.

But we survived. Life goes on.

It is good that when my parents made me, they made me out of pure titanium. Otherwise, there's no way I'd be able to be anybody's mom.

Responsibility and love, oh how they haunt me.

She is perfect.


  1. I can't even imagine how totally, paralyzingly terrifying that must've been. I'm so glad she's okay!!! And I know writing this must've been really difficult, but I'm glad you did.

  2. Pure titanium indeed. The universe knocks you and you just go 'ting!'.
    This blogosphere is a weird and wonderful thing, you've been so much in my thoughts. When Aune did her first stint in hospital and everything seemed so tenuous I mentioned you all on facebook, feeling like you needed all the positivity, good vibes, prayer (for those that way inclined) you could get. I hesitated, feeling badly about freaking people (parents) out, which I knew it would but I did it and I was astounded at how many of my friends called, PM-ed, texted me over the next few days to find out how you and Aune were doing. Parenting, living, is for the most part a giant circle of compassion and I almost want to thank you for giving me the opportunity to re-learn that.


The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.