META-MOURN-PHOSIS

I wrote this the first Christmas after we lost Joan – just 2 short months after our firstborn baby died and was born.  I remember the agony of receiving daily Christmas cards with the adorable smiling faces of the children of everyone we knew, while there would be no first Christmas card with a photo of our new baby girl.

For any newly bereaved parent navigating this first Christmas after the loss of your precious baby, you are not alone.  I hope this is a reminder to treasure the small joys in life and hold on to hope…

I fear that this traumatic life event – the devastating loss of our beloved daughter Joan – has turned my husband into Martha Stewart.  He has been perusing recipe books, commandeering my Better Homes and Gardens magazines, baking up a storm... and now, the ultimate proof... He announced that he is going to try decoupage. Decoupage. Seriously.  I don’t even bake very often, let alone decoupage.  If you know my husband, you know that he is far from the domestic or crafty type, which makes this all the more unexpected.

In all seriousness, this post is intended to bring humor in a difficult situation.  And also to encourage those of you going through a similar grief experience, to find the things that bring you joy and embrace them.  Whether it’s discovering your inner homemaker or training for a marathon.  Start a new hobby if you feel a calling, or rekindle an interest that you haven’t found the time for in a while.  Just make sure it is not a potentially dangerous or destructive pastime.  Be kind and gentle with yourself.

While my husband is morphing from a man’s man to into a domestic goddess, I have found small joys and healing in other things.  Here are a few:

• Reading whatever interests me at the moment (at first it was infant loss websites and self-help books about grief, then light romance novels with happy endings only, we’ll see what’s next…)
• Journaling
• Eating out at a favorite restaurant
• Savoring a chai tea latte or jasmine green tea
• A quiet walk near the beach with the afternoon sunlight glistening off the water
• Creating photo books with pictures of Joan and inspiring quotes
• Finding creative ways to donate to charities that are meaningful to us

And though our house has been in a nearly constant state of renovation for the last 4 years, with many projects partially completed and now sitting idle, I no longer care.  I am content to watch my husband bake and then enjoy eating some of the best cookies I have ever tasted.  I don’t even care about the additional pounds (caveat: to a certain degree.  I am a big proponent of everything in moderation, and we have also been conscious to make time to exercise since it helps with grief.)  Ironic how many new mothers are preoccupied by losing the baby weight quickly, while I now see how trivial that is in the grand scheme of things.  (But that is a post for another time – the many ironies of infant loss.)

For now, find your joy – even if it is only for a few minutes a day. Happy decoupaging.

3 Years

Be still.

Close your eyes.

Breathe.

Listen for my footfall in your heart.

I am not gone but merely walk within you.

- Nicholas Evans

In loving memory

Joan Louise

October 9, 2011

Providing Resources

When we received Joan's Trisomy 18 diagnosis we were immediately referred to a genetic counselor.  That was a very good first step.  I wanted as much information as I could get about the disorder, our situation, and what comes next.  In addition to much discussion, the genetic counselor had a few booklets that we could read, but said, "I'm sorry, these are my only copies so you can't take them with you."

I remember sitting in the crowded waiting room after our appointment trying to read through the material and soak up whatever I could.  Let me tell you, shortly after receiving a terminal diagnosis for your child you are mainly in shock and cannot focus on much of anything.  So we wrote down the titles, went home and ordered copies of a couple of booklets from Amazon.  When they arrived I began reading one and noticed that several pages in the book were blank.  Pages of text were missing right in the middle.

Really?  Is it too much to ask for some resources and information to guide us through these terrifying uncharted waters?  This is unacceptable.  Maybe that's when the spark of Joan's Reach first ignited.

Secondly, the brief booklets focused mainly on difficult decisions -- in other words deciding whether or not to end your pregnancy.  Then they stopped.  What happens next??

There were some support group resources listed for pregnancy termination.  But the continue your pregnancy route seemed lacking in guidance, resources and information.

Part of what we are doing with Joan's Reach is trying to fill this gap.  We provide bags full of resources and information that parents can take home with them.  To look through when the shock has dulled a bit.  Enough information to make informed decisions for their family.  As well as contacts and resources to guide them throughout the pregnancy and beyond.

Mother's Day

Three years ago was my first Mother's Day.

I was pregnant with our first child.

Just a few days earlier we were told the unimaginable.

The baby you are carrying is not going to survive.

We, like many parents in this situation, were essentially offered one solution.  Terminate the pregnancy.

The alternative -- carrying to term -- was viewed by the doctors as doing nothing.  As in, why torture yourself like that?

It's not doing nothing.  It's the furthest thing from doing nothing.

It's the most important thing I've ever done.


Carrying your baby to term, knowing she will not live long is...

... loving, protecting, and providing for your child's needs -- even if it means providing a peaceful life and death.

... allowing her to have the natural life, and natural death, she was intended to have.

... recognizing that the grief will be there, and will be complicated, regardless of the choice.

... filling each day with gratitude and cherished memories of your much loved and wanted child.


People have told me it is brave.

For me, it was just necessary.  I got to spend nine months with my daughter, see her and hold her in my arms.