Waiting for Life. Anticipating Death.

I find comfort in other blogs about child loss (like this one that just launched -- Still Standing) since the grief is universal.  However, there is a glaring difference in our experience with our baby girl that is lacking from many resources.  We knew while I was pregnant with Joan that she was going to die.  Halfway through the pregnancy when we received the diagnosis of Trisomy 18, we knew she had limited time with us.

We began grieving immediately.  Grieving the loss of all of the dreams that go along with a healthy pregnancy.  Anticipatory grief.  That's what they call it.  While at the same time Joan was growing (slowly but surely), moving and kicking in my belly.

How do you embrace the new life growing inside of you, while waiting for death at the same time?  How do you become attached to this little person that is a part of you, knowing how unbearably painful it will be to say goodbye?
...How do you not?

We were going to stop at Babies R Us after Joan's 20 week ultrasound appointment to start a baby registry.  We never made it to the store.  We never set up a nursery.  We knew Joan would likely never make it home from the hospital.  And if it turned out that she did come home with us, any essentials we would need could easily be purchased at that time.  It struck me how unimportant, and unnecessary, a baby registry was and all of the material items that everyone spends lots of money on.  Funny how your perspective can change in an instant.

Knowing that Joan was going to die was a blessing and a curse all rolled into one.  There is a quote from Michael J. Fox that I love.  "It's the gift that keeps on taking."  He was talking about Parkinson's disease, but that is how I felt about Trisomy 18.  It was a gift that made us appreciate every day, every moment with Joan.  But it was taking away all of our dreams for a lifetime with our daughter.

I often think of the families that are completely blindsided by the sudden, unexpected death of their babies, especially through stillbirth.  It was a blessing that we knew what we were facing, so we could focus on embracing each moment with Joan.  We could plan for what she would need, rather than rush around wasting time on things that suddenly felt so insignificant -- baby registry, shower, nursery, the Consumer Reports ratings for car seats, strollers and cribs.

Instead we planned for Joan's birth and death all at the same time.  Meetings with the labor and delivery nurse, neonatologists, funeral director and priest.  I didn't know what condition I would be in after Joan's birth and we weren't sure how much time we would have with her, so I wanted to be as prepared as possible for whatever might happen.  There was so much about the situation that we had no control over.  It helped to plan for the things that I could.  If I couldn't mother Joan in the way I had hoped for, I could mother her in the way that she needed. 

I would honor her life in this world, and aid her peaceful passage to the next.

The curse of Trisomy 18 was knowing we would likely never celebrate many milestones with our daughter -- first steps, birthdays, holidays.  Feeling death approaching and wondering each day if it would be the last.  But trying to live each day to the fullest and find joy regardless.  That was the challenge.

To embrace life in the midst of pain, sadness and loss.  That is still the challenge as I navigate this minefield of grief, seven months since I last held my baby girl.