Day 135- Saying See You Later to Willy

It was just about six months ago I met my friend Dawn, her husband Ted and their son Willy. Dawn was on her way back from a trip to Washington, DC to advocate for special needs kids.  Dawn’s son Willy was born with a terminal brain disorder. At four months old, he was given two years to live. Willy was 11 at the time I met him. When i met Dawn, I had to healthy girls both thriving.  Healthy, doing great in school.  I hardly had a care in the world.  I looked at Dawn dealing with Willy and his condition and felt sorry for her and amazed at the same time.  Willy couldn’t speak or eat or walk.  He had to be fed through a tube.  I wondered how someone could endure having a child so ill and the loss of any hope for a “normal” future for your child. Little did I know that just two months later I would be the one dealing with the loss of my child. Taken suddenly.  I was not prepared. I am still reeling.

Just a few days ago, Dawn posted on Facebook that Willy had a respiratory infection. This is not good in kids with lissencephaly (otherwise known as smooth brain disorder).  Willy was in hospice and had a DNR disorder.  His condition was considered terminal.  When Dawn posted a couple of days later that Willy had pneumonia, I had a bad feeling. I went to bed that night sensing this might be it and hoping it wouldn’t be. Sadly it was. Dawn messaged me early in the morning on the next day telling me Willy was gone. I cried for Dawn (and for myself like I do most mornings). I know her pain.  Rarely can we say we know someone else’s pain, but yeah I do know hers. Dawn had 11 years to get ready for Willy’s death.  But, still she wasn’t ready. Willy was never a typical child from the age of four months, but Willy was still a big part of her life, a bigger part of her life than most 11 year olds would have been since Willy was totally dependent on other for his care. I wept knowing the huge hole that would be left in her life.  Willy, on the other hand, is now free.

Dawn announces the service will be in Ann Arbor on Sunday.  Ann Arbor is about a 3-½ hour drive for us, but I’ve decided I’m going to the funeral. I have to go. Now, don’t think me some sort of good guy or anything because I’m not.  It wouldn’t even have occurred to me to go, but my Facebook friend Mike drove more than that distance to come to Shayna’s service and my Facebook friend Rich flew in from Atlanta for me.  I know how much that meant to me and I want to be able to give that to Dawn.  I know she’ll be busy. I know she won’t have time to talk.  I’ll probably not spend five minutes with her.  I don’t care. I just want to give her a smile, give her a hug and share a cry with her.  Ty says she will go along with me.  For those of you who know me, you know I don’t do funerals. I can count on one hand the number of funerals I have attended in my lifetime.  I went to Mom’s funeral when I was 12 years old and as I looked at her in that casket, I thought “That’s not Mom.  What are we doing here?”  I vowed to never go to another funeral again. I find them morbid. I did attend my Uncle Walter’s funeral a few years back (said hi to everyone and sneaked out during the service).  I went to Ty’s father’s to support her.  And, I went to her cousin’s only because I didn’t even know him and I wanted to drive her.  Funeral, IMO have been for the living. The dead don’t know we’re having them. I try to honor people while they’re alive and really don’t feel the need to torture myself after they’re gone. But, as my view on where the dead go and when has changed, I do think they are around for their funerals. I want to be there not only to support Dawn, but to be a part of giving Willy a proper send off. I think Willy will be there and I want Willy to see the room packed. I know some of my relatives will probably be pissed reading this and knowing I drove to the funeral of a virtual stranger when I didn’t attend some of my relatives’ funerals.  Well, things change. People change. I’ve changed.

When we walk into the funeral I see Ted.  He leads me to the front of the line where Ty and I make eye contact with Dawn. Good! She is totally surprised to see us and I think it lifts her spirits, at least for a while. We embrace and we share that cry.  Then, she’s back to greeting her family and Ty and I take our seats.  

In the audience are many of Willy’s fellow lissencephaly kids.  They’re wheelchair bound, unable to speak, unable to control their body movements.  We see Dawn’s family- a truly Modern Family. Willy’s father (Todd) is remarried to another woman (Trish). Dawn is remarried to Ted. The four of them raise Willy together with Todd and Dawn switching off days.  It’s a cooperative effort where Dawn and Trish seem like best friends or sisters.  Dawn gets up to give the eulogy and does an amazing job.  I love her honest, her sense of humor. She has everyone cracking up. But, she doesn’t sugar coat how difficult it was raising Willy.  

As I look at her family and the other liss kids, I’m struck by how, for me anyway, this forces me to think that this is either all random and that the universe is a crazy, uncaring or even cruel place or there is some greater purpose in this.  One of Dawn’s uncles stands to speak. I don’t know him, but I think Dawn is from a pretty fundamentalist Christian background. He mentions a couple of times he “hates divorce” (a phrase from the Bible that I’ve heard quoted a lot), but he sees the good that has come out of what has happened with Dawn and Ted and Todd and Trish (Dawn’s ex-husband and his wife).  Their divorce and the subsequent Modern Family seems more of a blessing than a loss.  Raising Willy has impacted everyone in fundamental life-changing ways.  I didn’t know Dawn before, but I do know Dawn now and I know she wouldn’t be the same person without these experiences.  I truly believe that kids like Willy are special advanced souls who come here maybe for their own benefit, but mainly for ours.  

C.S. Lewis said something that comes to mind as I watch Dawn stand behind the podium speaking. And it’s not just Dawn. I’m starting to see this in everyone. I see it in Shayna. I see it in Kayla.  I see it in Ty. I’m amazed by what I see in Ty now, what has been revealed in this tragedy that we are living. Truly amazed by what has been revealed.

“It is a serious thing to live in a society of possible gods and goddesses, to remember that the dullest most uninteresting person you can talk to may one day be a creature which, if you saw it now, you would be strongly tempted to worship, or else a horror and a corruption such as you now meet, if at all, only in a nightmare. All day long we are, in some degree helping each other to one or the other of these destinations. It is in the light of these overwhelming possibilities, it is with the awe and the circumspection proper to them, that we should conduct all of our dealings with one another, all friendships, all loves, all play, all politics. There are no ordinary people. You have never talked to a mere mortal. Nations, cultures, arts, civilizations – these are mortal, and their life is to ours as the life of a gnat. But it is immortals whom we joke with, work with, marry, snub, and exploit – immortal horrors or everlasting splendors.” 

So, today we say “So long” to Willy.  Hopefully it will be a long time before Dawn sees him again, but one day we will see Willy as he truly is.  In the meantime, Little Willy helped a bunch of people along their journeys to fulfilling their potentials and for that we should be grateful. Here’s to you Willy.