For Lilya Raine

Sometimes, this world is not a very nice place.  Sometimes, bad thing happen to good people.  Sometimes, we are left wondering why and how come and why them?  Sometimes, we flounder as we try to take it in, as we try to make sense of it all.  Five years ago on September 26^th, a terrible thing happened to two very good people that I love but before I tell you about the thing, let me tell you about them.

My brother, Michael, is a tall, thin, gentle and hairy kind of guy.  He started growing facial hair at age fourteen and never stopped.  Rather than fight it, he wears a beard and a ponytail and it suits him.  He is kind at heart and as a result both animals and small children adore him.  He is quiet, as a boy raised with three older sisters tends to be, and he is loyal, as a boy with three older sisters tends to be.  He has a quietness about him that is comforting. I love to be in a room with him and not have to fill it with talking because he already knows.  He gets it and conveys it all through his eyes.

My sister-in-law Kelly is crazy.  I say this because I love her and because it is true.  She is loud, she is opinionated and she has no filter.  If she likes you, you know it and if she doesn’t like you, you know that too.  She is passionate, she is stubborn and she is a riot.  When I first met her, I liked her instantly and knew she was the one for Mike.  They complement each other and they love one another in a way that is nice to be around. 

Five years ago I was waiting anxiously for a phone call telling me that Kelly had gone into labor and their daughter would be born soon.  The phone call I got from my terse father with my mother sobbing in the background was that Kelly had gone into the doctor, there was no heartbeat.  And on September 26, 2009 at 2:50pm Lilya Raine Arena was born, but born sleeping they say, or born with the angels, or stillborn.  She was 5lbs 12 oz, 21 inches and perfect in every way.  I say I cannot imagine what Mike and Kelly went through that day but the truth is that I cannot even bring myself to imagine. 

If everyone around you is so happy and excited when a baby is getting ready to be born, imagine how the sadness replaces that joy and you are left with your own grief and the palpable grief of those around you. I flew up to be with them soon after and while I wanted to be a comfort, I think it comforted me more to see that they could still breathe.  That they could eat.  That they had people non-stop in and out of their house loving them, feeding them, praying for them.  But as Kelly says, even with all of those people and all of that love, she felt very alone on her Island of Grief.  All of those people were well meaning, as was I, but we didn’t have the right words and we couldn’t take away their pain and we couldn’t fix it.  

Kelly said that two hours after Lilya arrived; a woman entered her hospital room and introduced herself as a Perinatal Bereavement Nurse.  Kelly says she thinks she asked her nicely to leave and she did.  However, this woman left her information and booklets and a memory box and a hug.  Kelly didn’t want to talk to her then, but she did two weeks later and Lisa took her call and listened to her and did the best thing ever by introducing Kelly to the Western NY Perinatal Bereavement Network.  This group does amazing things for families who have lost a baby either through miscarriage, or born sleeping or after their births.  They provide women like Lisa who visit in the hospital and leave information.  They provide cameras and people to take pictures of these babies when families are too distraught.  They provide money and burial services for those who can’t afford it. But the best thing they provided Kelly and Mike, was hope.  Hope and encouragement.  They met other people who knew exactly how they felt because they had been through it.  They weren’t offering platitudes, they were offering a hand to hold and a shoulder to cry on and expecting one in return.  This group forced Kelly from her Island of Grief and slowly she got involved trying to make things better for other people going through what she went through.  She wanted to be their hope and their encouragement.  

Every year around Lilya’s birthday, Mike and Kelly do something to honor her, to remember her and to grieve for her.  When she would have been three, they sent lit lanterns up into a cool night sky with a group of their family and friends. The pictures were beautiful both in the number of people who came out and the love you could see on their faces.  My favorite picture is one of Mike and Kelly that was taken from behind and it shows them leaning into each other and looking up.  Mike wears Lilya like another layer of quiet and Kelly wears her like a shield and sword, but they wear her together.

I tell you all of this because they continue on their journey of offering other people hope and encouragement and they are raising money for WNYPBN to do so.  Kelly and Mike live a modest life as do their friends and their family and they are trying to raise a very modest amount to give to WNYPBN in Lilya’s name.  I don’t have the money to get them to their goal, but I am hoping that I have the words.  If you can donate to this amazing group in honor of my niece, thank you.  Here is the link to donate in Lilya's name.  If you can’t donate but can share a prayer or some good thoughts, they will take those too.