Premonitions, Discretion and Doubt

I've had trouble writing anything lately. Shortly after my last post, we had a sudden death in the family, and the ominous foreshadowing of that missive contained all the emotions I would have included anyway. We went to the East side of the state to be there for the bereaved. Not that there is anything I can say to take the bewildering absence away. In fact, I'm sure I said a lot of things that were the opposite of helpful, but with the best intentions. I'm not so good at the "shut-up" part of consoling. Hopefully Bo's cheerful demeanor and charm were a source of solace, if not distraction.

We were able to make it out there with a wagon full of medical supplies and still forget a few essential things: power strip, enough saline flushes, paper tape, enough heparin, germex, detachol. We were able to supplement or replace what we had forgotten at the local pharmacies, and have an additional delivery from our infusion company. Additional, because we had our week's supplies sent there, before we called for the additional stuff we forgot to ask for. Oops. Luckily, this location was actually a good hour and a half closer to them than our house, so they were able to oblige promptly and with little complaint.


Whereas the odds of a crisis arising for Bo would certainly have been higher than this particular incident, I can't say that facing all this during Holy Thursday, Good Friday and Easter felt anything less than putting too fine a point on an essentially human condition. That this life is one destined for and designed to encompass death and dying, healing and rising, rebirth and hope in the face of cruelty and pain. Miracles despite, and really because of, the travails that we face on our paths full of stones and roots, predators and pain. The hope for sunshine, the succor of a light rain, the reinvention of life itself. And we keep walking. Partly out of hope, partly entitlement, partly out of lack of anything better to do.

And turning the prism of that drive to move forward in my hands I can see sunlight streaming through this notion of entitlement, changing it, reshaping it into its refined self: faith. Faith that there is a tomorrow. Faith that there will be something better for Bo. Faith that I am the recipient of unconditional love and adoration. Faith that I can be the source of unconditional love and adoration. Faith that this love will drive us to be better than our basest selves, and do better and live better and help better. Hope. Love.

Faith, hope and love. And the greatest of these is Love.

Building Faith

Everyday, we dodge the bullet. Each day is another miracle. Sometimes, our miracle has become so ordinary, we wonder at the insult of the world's sense of normal. And somehow, it is so hard to remember that just because we lose our friends or family members anyway, just because we and those we love may stumble under our personal demons and afflictions, and just because we feel our hearts breaking over those losses, that our broken hearts still have the capacity to fill with awe and love at the miracles we continue to be blessed with.

One of the major downsides of all this information accessibility faces us when we unearth obituaries that we would have otherwise known nothing about. In years past, someone disappearing from our lives from long ago would leave us to wonder. Maybe create imaginary adulthoods, alternate lives for our long lost friends. Now, once or twice a year, it occurs to you to try and find someone. And you don't get anything. And one day, there it is. And even though it's seven years after the fact, you read that she died at 29. And because you are just finding out, it is exactly like it just happened yesterday. And the immediacy of that grief and heartbreak is so foreign and so close. Maybe that is what it is like to actually unearth an artifact. An old fragment of pottery. Someone's hands formed this vessel, carried it, held it. Their lips touched it and received succor.

And when this happens, I never know what to say or how to feel. The truth is that when someone you love dies, no matter how young, how old, how accomplished, how haunted, how close or distant you have become over time, there is grief. And after the heart break, there remains an ache. With all the aches and pains and scars on our hearts, it is an astounding trick that our hearts continue to beat and fill with love and hope.

Comment on Japanese Regenerative Medicine: Intestines

While I see hope that medical advances may provide, if not a cure, a partial reprieve from some of Bo's medical complications from his condition, I felt a need to comment on the recent publication that seems to be making the rounds. This technology is great, and may prove to be a cure for those with gross anatomical short gut: kids whose intestines were removed due to NEC, or volvus, or even pseudo obstruction. However, for those of us whose kids are on TPN due to genetics (MID, Hirschsprung's, tufting enteropathy, etc.) this technology's usefulness only comes into play when a second step can be successfully accomplished: gene therapy. I for one don't think Bo needs more centimeters of the same non-absorbing surface that he currently has. And really, if that second step is possible, you might even hope you could bypass that step of needing additionally created artificial intestine and just apply the gene therapy directly (like the gene therapy that has returned some vision to blind patients whose conditions were genetically caused http://www.reuters.com/article/idUSTRE57B5PN20090812).

7-10 days

Well, Bo seems to slowly be recovering from his cold, and Jose seems to be getting worse. Hopefully we all come out alive at the end of the weekend. I'm already exhausted. Those pre-natal vitamins have kept me healthy all winter (knock on wood).

Throwing up all night

We are again sleep deprived and a little panicked. Took the boy to the pediatrician, who listened politely to our concerns. And with a completely straight face told us that a teaspoon of honey has been shown to be more effective than medication for toddlers with colds at night, and sent us home.

Just a cold. An ordinary toddler cold. Go home to your sleepless, coughing boy, and rest in normalcy.

I suppose it's just as well, seeing that I'm too uncomfortable to sleep much anyway.

Pain Appetizer

The hormones from post labor and delivery are in favor of evolution and against my personal comfort. Which is to say, that while I can intellectually tell you that 30+ hours of labor was a long time, those hormones make you forget the visceral part of the experience. I'm not even close to that experience. I'm just trying to get and stay asleep. Without excessive protest from my lower back. Ugh. I'm sure it was worse with Bo. But I don't remember this real-time, persistent ache.

Please help the pregnant lady!

Nuff said.

Preparing the Way

I remember when Bo was still very unstable and it was still questionable whether we would have to say goodbye to him before he would even be old enough to remember us, before he was old enough for us to actually make memories with him, long long long before we would even know what it meant to be ready to say goodbye. It was very hard for me to be around others' pregnancies. It gave me the irrational longing to be pregnant, the condition that kept Bo the safest. In my grief-striken reveries I would imagine having child after child, like each was a layer to buffer the pain. Insurance. Talismen. A continuous hormone high.

And now that we are more than halfway through this second pregnancy, it is a struggle to keep a lid on the hysteria. And I just can't stand being the exhuberant, joyful expectant mother- so much the thumb in the eye of who I was just so recently. And certainly, to any of those other mothers waiting to be mothers.

Maybe that's why I still follow and have so much empathy for the families I follow on the links included on this blog. They all walk paths that are the alternate universe we may have so easily been on, that we might find ourselves on again any day, that we feel we are on some days more than others, still. Saying goodbye, struggling with hospitalizations, searching for therapies, for answers, for support.

Life is uncertain. Anyone might be faced with these realities, but having been so close to them so long, breathing the same air, sharing the same bed with anguish, night after night. It can be paralyzing. And then this child, always on the move, gives a kick, tumbles, morning, noon and night. And we keep moving too. Grateful for the chance.

Maybe that's what they mean when they say someone "found religion." That you've found your stronger self emerging from the broken bones and ashes. I've seen the bright white of extra calcification where a broken bone has mended, stronger than before.