What would you do?

What would you do if you lost a child?  Would you bury them?  Would you cremate them?  Honestly, you can't truly answer this unless it happens to you (and I hope it never does).  During the pregnancy and thereafter, I thought I knew all those answers.  I was surprised, however, with just how naive I was.    What if the baby stopped breathing during delivery?  Would you resuscitate?  What if you resuscitated and only later had to 'pull the plug' on the ventilator?  Would you do everything that your physicians suggested?  Would you host a memorial?

I faced these types of questions throughout ellie's life.  Should I enroll her in Medicaid?  It took three months so why bother, they said.  She'd probably die anyhow.  Should I vaccinate her?  Why bother?  She was likely to die any day anyhow.  (I decided to give her immunizations on a slower schedule...mostly because I still had hope.  Hope for a future no matter what it looked like).

I decided against heart surgery; although the surgeons were split 50/50 over whether operating on her heart would improve her prospect for life.  I too wanted her to live, but heart surgery was an enormous undertaking and would likely cost her her life or sentence her to a life in the hospital.

Our insurance company assigned a nurse to our family.  The nurse was to "check-in" and see how things were going.  By the fourth month of life, the nurse--with her southern accent and habit of calling me "dear"--called to ask if I thought the baby would die soon (how is her color?  how is her breathing?  how much longer do you think she'll live?  I hated her.)  She told me that she had to fill out more paperwork based on just how long ellie would live.  Should she fill out the longer-term paperwork or shorter-term?  (After ellie died she never called again, even to say "I'm so sorry, dear").

Hospice left me with a matrix of funeral homes I could call to find out how much it cost to bury or cremate a child.  They didn't have pricing for children (it would be my job to figure this out).  Some funeral homes said "well, if you bring your child here I'm sure we can make you a deal."   While others had a fee schedule based on how long she lived.  The longer she lived, the more it would cost.

Day and night, night and day I spent with her unconditionally and often beyond exhaustion.  Within the first month of her life, I was significantly losing my eyesight, in both eyes, from lack of sleep (nearly 75 percent in one eye alone).  After the feeding pump arrived though, we could sleep better throughout the night and my vision returned three months into her life.  By the last week of her life, however, I was having audio-hallucinations of her crying.  She cried and cried all the time.  I could no longer sleep.  Her cries became the white noise of my life.  I'd awaken in the middle of the night, run to the top of the stairs and pause.  I'd hear her crying, but was she REALLY crying?  Often, not.

I was losing my mind and I knew it.   And, it was likely going to get worse.  Greg and the girls were contemplating moving out since she was so severely immuno-compromised.  Winter was coming and the girls would inevitably carry home a small virus that would take ellie's life.

Just as quickly as we were making these decisions, ellie passed away quietly and unexpectedly.  After she died I could not stand the thought of being without her.  She had been in my life for more than a year (remember she was in my belly too).  From the weekly celebrations we had during the pregnancy to the weekly birthday parties we had during her life, I still needed to have her next to me.

With that Greg hired an artist the in northwest, Eli, of Rogue Art Glass (http://www.artglassmemorials.com/).  Eli knew that I wanted an urn that included ellie's endless blue eyes and created a masterpiece (we sent photos of her eyes).  He worked and worked to create a timeless artifact.  In fact, he created three urns for ellie.  He wanted it to be perfect.  After weeks in development, he sent his favorite as her lasting burial ground.

ellie is fully embodied in a small sphere and held by deep blue hands.  The hands are surrounded by a clear egg.  I think it's perfect.  There are few people who I owe such a great debt of gratitude, but Eli is near the top of the list.