Ryder's book

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Service Information

Ryder's service will be Thursday, December 6, 2012.

First Lutheran Church

6400 State Line Rd.

Mission Hills, KS

12:00 Visitation

1:00 Service

Reception Following

In lieu of flowers, donations can be made in Ryder's name to Little Hearts:  https://www.littlehearts.org/Content/Donations.asp

The Yellow Butterfly

Back when Ryder was still in room 9 (in real world time that was last Spring) there was a particular misty day that I haven't thought about for a while, but I imagine now I will come back to frequently for a long time.  Ryder was still on the ventilator from his Norwood surgery; he was still on a lot of drips, he was tiny.  Very fragile.  But he was stable that day.  We had our room set up with the recliner in the back corner next to the ICU toilet which we used as a table, then on the other side of the toilet was another chair.  We would alternate seats.  We didn't have much in the room yet, just a basket of snacks from the hospitalists, a hospital blanket (for the person sleeping in the recliner) and our computers.  This was back when I was still opposed to having much in the room, because that was a sign you were staying put and I was determined Ryder was leaving that ICU any minute and I didn't want to have to pack up a ridiculous amount of baby stuff.  His room was waiting with his stuff at home.

To get from room 9 to the waiting room you had to walk around the main nursing station down the hall and then turn right to go through the double doors.  That day a little girl was dying in a room on the left just before you turned the corner for the door.  She was maybe 4 or so, and I don't know why she was sick, but I knew she was dying because a butterfly was pinned on her door.  A yellow one.  I've seen blue ones and green and red I think, and she got a yellow one. 

Anyone who's been in the ICU for a few weeks knows what the butterfly means and it gives you the same flurry of thoughts every time - What happened?  Why this baby?  How is the family doing in there?  I hope that child isn't hurting anymore.  And you hold your breath when you walk by.  And your heart breaks a little.  Sometimes you don't realize it but you are crying when you pass the room.  And you are so thankful that it isn't your room.  And then you feel bad for thinking that. 

I don't know why I had my good camera there that day.  I didn't even taken any pictures of Ryder.  And I don't know why I was looking out the window onto the courtyard from the waiting room...it was before they even started working on the garden that months later Ryder took his first breath outside in.  But I did.  And I saw it fluttering around, a big beautiful yellow butterfly. 

I think my heart stopped.  I know I forgot to breathe.  I watched it for a few minutes, flittering and floating, sometimes coming close to the window so I could see it, sometimes flying up high between the windows so I thought it had left.  I looked around a few times to see if anyone else was in the waiting room and had seen this sight.  No.  Watching TV.  Then I was alone again.  I went back to Ryder's room and got my camera.  I waited.  After a few minutes the butterfly dipped back down so I could see it again.  And then I spent the next 20 or 30 minutes trying to take a picture of it...I was there at that window so long I can't imagine how many people walked by thinking I was insane, darting around trying to take a picture of something that I am certain only I could see.  It actually made me smile, that butterfly - darting around so quickly trying to avoid getting captured.  As soon as I would put my camera down and look again it would be there, right up against the glass and then dart away again just as I tried to focus on it.  Despite all that effort, I only ended up with three very poor pictures of that butterfly.

Please trust me, it isn't dust or a moth you can see that speck of - it is a big beautiful yellow butterfly.  I spent the next several hours staring down the hall at the butterfly pinned on the door.  I can't tell you how much I longed to knock, to tell that family their butterfly was just outside the window, she was fluttering around and so beautiful.  How could I tell them?  Could I ask the nurse to tell them?  It wasn't any of my business.  Or was it?  What if I was the one that was supposed to tell them?  Should I show them my pictures?  I just couldn't do it.  I regretted that for a long time...and that night the room was empty and the yellow butterfly was gone.

On Friday afternoon, there was a yellow butterfly on Ryder's door.  He should have gotten a blue one I think but it was yellow instead.  I don't know what happened, it seemed fast, it's a blur.  I remember lots of people, masks, machines, beeping.  I keep seeing the rhythm on the monitor.  I closed my eyes and I was holding him again, swaddled in a blanket.  He was just as perfect as the day he was born.  He has been perfect all along. 

I realized yesterday that I didn't need to tell anyone about the yellow butterfly - she was there for me.  She came to tell me to keep drinking in every moment.  To make every moment special.  To stay thankful and full of hope.  To try to keep smiling because although my Ryder would always be a warrior, he was fragile and he would be looking to us for strength and protection.  He lived his life in a glass world created just for him and it would only be through us, his parents, his sister, his family and friends, his nurses, his respiratory, physical and occupational therapists, and his doctors that would see happiness.  And I think he saw that every day.  There is a lot more to say but not now.  I just wanted to tell you that when you look at that butterfly up close, she is more than a butterfly, she is an angel.  And now, so is our Ryder.