Wednesday, January 2, 2013

Something Happens. . .

Something happens to us when a doctor tells us our baby has a condition that is incompatible with life:  We learn how to live. 

We learn to cherish every kick, every hiccup, every heartbeat in a way that we didn't before.  It brings out this animal-like zeal in us and turns the remaining weeks or months of our pregnancy into this tragically beautiful experience that imprints itself on our souls. 

Then something happens to us when we lose our children.  We are wounded and we have days where we don't want to get out of bed, or we don't understand why we keep breathing when our child no longer does.  We feel like we could die too sometimes, and it takes everything we have some days to function, but most days we do.

To my knowledge, for the first time in our anencephaly community, one of us was so overcome with our grief that we couldn't get out of bed anymore, we couldn't breathe anymore, we couldn't live anymore.  Emilee Granatowski, mommy to Dallas and most recently an anencephaly baby named Leila Grace, has in her troubled grief taken action that inadvertently ended her own life.  We pray that she is reunited with her precious daughter Leila, but never forget that she leaves behind a husband, son, and other family and friends who will miss her until they see her again.  

I say we, because when we are first told the word "anencephaly" in this age of information, once the shock has begun to fade we begin to search.  And in our search we find support groups, blogs, pages of information encouraging us to give our child the chance to live, not just for him or her but for the strength that we will find through the experience.  And something happens again. Those support groups lead us to women who become our sisters.  We are sisters.  I have never experienced a love like I have for my child, but I have never experienced a closeness with people I have never met like I have through my online support groups.  I didn't know Emilee, never had an exchange with her that I can recall, and only observed her experience from afar through a support group we had both joined, as I have done with many of the mothers new to the anencephaly community.  Yet I am shocked and saddened by her passing and feel the depth of her despair.  We in the anencephaly share experience, joy, and grief.  Any one of us might have been Emilee.  Any one of us would have been dearly missed in our group.  Emilee is already dearly missed. 

Today we are picking apart the signs, wondering what we could have done to change things.  Nichole, one of our youngest yet wisest sisters, says it best when she says there was just nothing.  We want to believe we could, like we want to believe we could have changed things for our babies, because it gives us a sense of control in a situation that is completely out of our control.  We couldn't save oour children - if we could have, we would have.  We couldn't save Emilee - if we could have we would have.  What we can do is pray for her departed soul that she may be reunited with her baby girl Leila.  We can pray for the comfort of those she left behind, especially the mommies who have grown so close to her the last few months. 

We're struck with grief today, but I hope we'll focus on what makes us smile.  In just a few days we'll celebrate the birth of one of our celebrities, Andrew Alvstad, who like my Gabriel lived a miraculous ten days.  We learn in this experience to count our blessings - ten minutes, ten days - we can't take any of it for granted.  Life is precious, and it is short, and we never know when it will be taken from us. 

Something happens when you hold your child in your arms as he takes his last breath:  You learn to live and you learn to love and you learn to hurt and you learn that it's all part of this experience that was nothing like what you expected, and nothing you would ever give up. 

Rest peacefully, Emilee and Leila Granatowski.


  1. This is so true Emilee and Leila touched the hearts of many. I pray that her family in time will find a way to get through their grief. My daughter Ellie did not have anen but she was stillborn like leila. I know the anger and hurt of not even getting one breath one cry Ellies stillbirth was totally unexpected and i often wonder if id have had time to prepare if that would have made it easier or not. Rest in Heaven Pretty Momma with Leila forever.

  2. Very well written. I have been searching for words and they haven't come.. until I read this. Thank you.

  3. Tomorrow (Sat 1/5 1 pm) we are holding a memorial service for Emilee at Westside UMC in Beaverton, OR. ( I am so thankful to read what you have written. I am so thankful that you have found a way through the grief to life, and sounds like vibrant life. This is what God wanted also for Emilee, and I believe wept for her as she ended this life He'd given here. What heartache must have led her to this place of deep darkness and despair. I was so shocked and saddened to hear the news. You wrote so excellently. She was not involved in our community, had only come once, but her aunt is active with us and through her we are connected to this tragedy. If you cannot join us tomorrow, do hold us in your prayers. Grace and peace be to you.