Tuesday, February 17, 2015

When signs themselves are trusted miracles

When I learned of Celine's diagnosis I spent a good week alternately crying and reading.  A researcher by trade I read every tract I could get my hand on, from information from children's hospitals to peer reviewed journal articles.  I also spent a few days as a member of a facebook page of mothers who carried their babies to term. 

The results of these studies were murky at best.  Some babies survived, just as many died.  Some did not live far past childbirth.  Often the outcome hinged on very individualized pieces of information that wouldn't even become apparent until they were full-term or born.  Were their hearts also affected?  Their lungs?  These things would impact the outcomes.  Every one of these babies required unimaginable painful medical interventions and surgeries, and some required more "follow-up" interventions (ie. trach and feeding tubes) than others.  A "good" outcome for many could be a year in the NICU and then being sent home to a NICU recreated in the living room.

In the midst of all of this information I went to work one day, and went into the office of one of our executive secretaries.  A woman who had offered me her shoulder through three miscarriages.  And I cried and cried and cried some more.  And told her the bald facts about our diagnosis, and how my daughter's life - and suffering - was in my hands.  She  - I'll call her "L" - is a church-going Christian.  And I - being rather godless - felt crushed by the weight of what I was asked to do.  Sure, I knew  instinctively what I had to do for my entire family - for Niblet, for my husband, and most of all for my most-wanted baby.  But was I wrong?  The doctors made clear to me that there would never be enough information to fully assess the gravity of what I was dealing with. They could only tell me it was very very grave and any "choice" I made would be supported by the medical community.

But that day L offered me some words that changed my worldview and saved my life.  In sum, she told me that perhaps God had intended for me to see the gravity of that situation so early on.  That it was in fact a blessing to learn the severity of my baby's health problems at 12 weeks, rather than farther along.  That the science that brought me this far was itself was a miracle.  And that she would make the same choice as I.  I went home from work that day with a changed perspective.  No, I did not find God.  But it struck me as remarkable that a woman so driven by faith could reach the same outcome, the same conclusion as I did.  It struck me that miracles weren't necessarily what we imagined them to be.

There is actually another piece to this story, that will remain unwritten here, because it isn't my story to tell.  But I will say that I connected with another woman that week, who I shall call "T". She was another voice who offered me her own thoughts and her own crazy experiences.  We connected on the internet just a day before I found myself sitting at L's desk.  For me, finding T was like finding a beacon in the cold dark wilderness.  I was no longer isolated.   Individually, both women provided comfort and empathy and rational conversation and safe spaces.  But somehow, the story T specifically had to tell me, when  merged with L's words, became two parts to a whole new parable.  All I can say is that the two perspectives were symbiotic.  Together, their words combined to provide both guidance and validation for what I ultimately had to do.

These two women who never met formed the tag team for my psyche.  And I cannot believe it is coincidence that when I needed them both, these women, from vastly different walks of life on the opposite sides of the US, could connect with me in tandem and provide me with comfort.  And signs that I would survive.

The universe is mysterious.  Miracles may not be what we imagine them to be, but I absolutely believe they are real.

6 comments:

  1. You had the most gut wrenching decision to make. It was the most unselfish one you made for your baby. I admire your strength so much. Your friend is right. I pray for the same thing when I have a transfer. If things aren't going to work out let it be over early.Celine is watching over you now so that everything is perfect with this pregnancy. *hugs*

    ReplyDelete
    Replies
    1. Wow, it's almost March and your transfer date will be here before you know it. I am going to think only positive thoughts for you.

      Delete
  2. I had the sad responsibility of helping my dad as his last living brother died. He was in the ICU in a Catholic hospital and as part of the family meeting, a priest comes in addition to the doctor and nurse. I that family meeting we were told he was in a coma, being fed and ventilated externally. They didn't know if there was pain, they were giving him medications to keep pain at bay- but that was not enough to say there was no pain or discomfort. There was no hope of a recovery. Potentially he could gain some slight awareness- but they couldn't fix his lungs or heart. The priest stepped in and told us that there are things we can do on earth to extend the life of the body. That doesn't mean that those things should be done, or must be done. He told us it was his belief that the right thing was to let him go to god. We weren't ending his life, per se, we were allowing the process that was going to place anyway to begin now rather than later. THIS is how I view my TFMR. I hastened the process which was already occurring. I spared my baby the pain his life would have been composed of- if there was a life at all. I am not religious, but I found comfort in this moment. I thought I would share.

    ReplyDelete
    Replies
    1. Thank you for sharing this. Your dad was lucky to have you through such a wrenching experience. I too found comfort in sparing my daughter pain, and I do truly believe that for so many of us, tfmr is our act of mercy. I think what I struggled with most was the uncertainty "roll of the dice" aspect. I had many people suggesting to me that I should think positively and hope to be one of the better outcomes. And frankly, I couldn't bank my family's lives on rolling the dice for a good outcome.

      Delete
  3. I have goosebumps and every time I check in on you and hold my breath.
    This is all looking really positive my friend. And to your points about morning sickness in your other post- My symptoms were all over the place with each pregnancy. You may have a really easy pregnancy this time.
    I have my fingers and toes crossed for you and am sending up lots of good thoughts. Hugs to you, I can't tell you how grateful I am that we "met" and I believe in miracles too my friend.

    ReplyDelete
    Replies
    1. Hugs to you back. Tomorrow can't get here soon enough.

      Delete