Thursday, 26 June 2014

Overwhelmed, negative and positive

You may have noticed in recent days that my blog was re-set to private.

It's not that I actually wanted privacy per se, or that I've even updated. On the contrary, I have had little time or energy to post blow-by-blow updates, and even if I did, I wouldn't know where to begin. Girl Wonder has been back in hospital for going on a month now, and is struggling. We are struggling with fear, watching her suffer with so little complaint. She deserves a babyhood free from all this pain and illness.

Also, there comes a point when it becomes a special kind of overwhelming just to see how overwhelmed others are by the sheer volume of your misfortune. And at the same time, I don't want to come across as all woe-is-me, because however hellish things are, we continue to know and celebrate how blessed we are. There continue to be moments of happiness. My daughter makes me laugh out loud with surprising regularity, given our current situation.

So, not knowing what to do or say in the face of all this, I just stepped away.

And then, as I wailed my sense of fear and injustice to a small group of amazing parents who have carried me through many a disappointment and triumph, something amazing happened: they poured out support and strength for our Girl Wonder. From the four corners of the globe, they enfolded me in their nurturing love. They offered to fly here to just sit with us and cry. They researched medical journals and sought expertise on our behalf, as we battle the many diagnoses we're dealing with. They offered to feed us, literally and metaphorically. The incomparable soul, the generous heart that is le petit soleil, (who is herself facing no insignificant measure of heartache and stress and fear in these days), has taken the un-expected step of drawing together all this love and support to give us some concrete help at a time when we would otherwise feel very alone.

And now I'm overwhelmed for a whole other reason. There are no words of gratitude sufficient enough to repay this kindness. The gesture is so welcome, but it is the spirit behind it and the feeling of being embraced, overwhelmed by loving kindness, that are really a balm to our weary spirits right now.

I so hope to be back soon, with the time and energy to be giving you a happy update. In the meantime, Girl Wonder draws on your care and good wishes, and H and I continue to be oh so thankful for your thoughts, prayers and actions.

(**I have continued to be active on internet fora where I have shared personal details first put down in writing long before it occurred to me to be cautious about my identity, long before even the birth of this blog. That space seemed like such an intimate family context, while I guess I've always viewed this blog as a lot more public, but given the uniqueness of our situation right now, it wouldn't be difficult to trace those personal details back to here...If you should happen upon them, or know me in that other context, I'd appreciate you not referring to our names or that other space here.**)

 

Tuesday, 3 June 2014

Not out of the woods (or the hospital, as it happens...)

After several days in which she did so well she surprised her care team, Girl Wonder has been (re)hospitalized for sudden, rapid weight loss, low temperature and suspected now confirmed sepsis. She's being given an aggressive course of antibiotics, put under heaters, and we're supplementing my breast milk with high calorie formula.

When the doctors mentioned meningitis (though probably unlikely), I finally lost my shit once and for all.

My resilience and reserves of energy are at their lowest ebb yet. We've had to be so strong through one blow after another. Girl Wonder has had to be so strong. Why does this shit keep happening to us? I'm so so scared and can't stop crying. Infection in a pre-term infant (let alone one with all her complications) can be life-threatening. I just want her to have the chance to be a happy baby already. Our hopes are so simple, yet so seemingly unachievable. I can't help but feel we failed her somehow.

I'm confused and afraid and sleepless, not because of the poopy diapers and late night feeds and colic that are supposed to be the cause.

How we're even putting one foot in front of the other I have no idea, except, I suppose, for her. H said it best today, after we watched in awe as she endured a painful spinal tap procedure with no fuss and was all smiles 10 minutes later: at less than six weeks of life, Girl Wonder is the most impressive, inspiring human being we have ever met.