Warts and All

This time of year has many meanings for different people.  The days become shorter, the air becomes cooler, and hues of orange appear everywhere, especially on the east coast.  I have often wondered why Jillian’s favorite color was orange and her favorite time of the year was the fall.  She entered this world at the end of autumn around Thanksgiving (Nov 24^th) and exited at the beginning (Oct 3^rd) of the season. During her short life she experienced exactly 10 autumn seasons.   Is there some cosmic significance to that?  Was it predestined?  Should I make anything out of it, or am I just searching, as a parent who has lost a child, for some answers that don’t make sense.  I often contemplate whether things like this are worth spending time thinking about.  But there is a part of me that believes deep in my heart that there is indeed something special about them.  There is a scripture in the Bible that I have found to be interesting.  It describes Mary’s response when she heard all the amazing things the shepherds were saying about Jesus her newborn son:  “But Mary treasured up all these things and pondered them in her heart.”  There is something about this short passage that truly resonates with me in how I feel about many of the events of Jillian’s life and her death and how I hold all that I have been gifted with being Jillian’s dad.  There is so much that I will never understand, but one thing for sure is that she has certainly given me more than I was able to give her. And for that I am incredibly grateful. 

Whether I am able to come to understand everything, however, doesn’t preclude me from learning lessons from what I do know.  Perhaps the lesson to learn from Jillian’s love for the fall and the color orange and things like bats, snakes and Halloween, is to be sure to live our lives with a sense clarity and passion of who we are genuinely destined to be – without pretenses or even ambiguity– and to simply be true to ourselves. Imagine if everyone lived by out their lives with this mindset and perspective.  At the very least, we would create a society in which we would more readily accept each other ‘warts and all.”  It doesn’t surprise me then to think that one of Jillian’s favorite cartoon vignettes was one that actually included this phrase.  She would laugh heartily whenever we watched it or acted it out.  Was her response reflective of the feature being funny, or was she laughing at the bigger idea that people are too consumed with what other’s think about them and not with being genuine and true to themselves.  My hunch is that it was the latter.  So I guess if there was ever a time to just be ourselves (good and bad and everything in between) it would be during the fall on Halloween.  That makes it fairly easy to determine my costume for this year – I think I will make a concerted effort to just try to be myself. I think Jillian would really appreciate that.

Fierce and Loyal and Loving as Hell

Below are a few excerpts from an incredible article written by  Emily Rapp etitled "NOTES FROM A DRAGON MOM."  It's a truly poignant article.  One which must be read. 

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice...

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.  

You can (an must!) read the entire article HERE.

What I find extra moving is that I have often described Jillian's life in a similar way as the article defines these parents.  At our annual remembrance day walk, the t-shirts we don with her picture on them say...."Live life with a fierce spirit, huge heart, and grand sense of humor"  This describes Jillian quite well, and I think parallels the attitude of these dragon parents.  To this I simply say,  ROAR ON.

The Anniversary Day

Today marks three year’s since Jillian’s death.  It is difficult to believe that it has already been this long.  It certainly doesn’t feel that way.  The question often asked on a day like this is “what are you going to do today?”  The truth is, that there are an unlimited number of answers to this question and contrary to what the remainder of the world may think, all are absolutely fine.   Some parents will do nothing different than every other day they have ‘survived’ without their child.  They will just try to get by.  Many will think about their child a bit more than usual or perhaps they will participate in a memorial ceremony of some sort.  Some will take a vacation day from work.  Some will receive letters and cards from loved ones letting them know they are in their thoughts and hearts.  Some may send letters to close friends and family sharing special memories of their child.  The list goes on and depending upon what ‘anniversary’ year it may be often the day’s events change. 

So what will I do today?  I have decided to take a day off from work and spend the entire day with Jillian. We’ll start by spending time in her room lounging around and laughing at silly things. Then we’ll take a drive to the coast and go to a pumpkin patch and pick out a special Halloween pumpkin together.  We’ll pick up some coffee at the local Starbucks and then head down to her favorite beach spot.  After playing in the sand and watching the seabirds and dogs running on the beach, we’ll grab a bight to eat (I think we’ll go for chicken nuggets and french fries from McDonalds).    Depending how we’re feeling we might go for a short hike and search for wild life, or go for a drive along the coastal highway and stop at lookout points.  Later tonight, after dinner, we’ll light a candle together and leave it lit until we retire to bed.  Throughout our special date, we’ll talk, laugh, and remember all the precious times we’ve had together as father and daughter. We’ll talk about the future and about what mommy and daddy are hoping to do.  It will be a memorable day for me and Jillian.  And like many other bereaved parents on the anniversary of their child’s death, I will cry.