The Most Powerful Lesson

Caring for Jillian during the last month of her life while she received hospice care was by far the most difficult emotional challenge for me. Yet, it also provided the most powerful lesson.   I knew logically that she was destined to die at a young age, but I never allowed myself to entertain those thoughts on an emotional and heart level.  I just wanted to focus on loving her while she was still alive.  But now I had to actually be willing to say goodbye and to allow her to die.  I had to embrace the true meaning of selflessness.  The amazing thing was that Jillian was continually setting an example for me during her short lifetime.  Despite her many difficulties and challenges, she always expressed compassion and care for others.  Even during the last few weeks of her life, she ‘held on’ so her close friends and family had the chance to say goodbye.  As her father, allowing her to die on her own terms was the final expression of love I needed to give her.

The interesting thing is that this lesson can be carried over to all other aspects of our lives and the many relationships we are involved in.  Isn’t it always harder to love someone when you see them making decisions you don’t really agree with?  You might make your case, even bargain with them to do something differently, but at the end of the day allowing them to decide and choose their own path without severing the relationship is always the most difficult, and ultimately a powerful act of love. This lesson I learned from Jillian has truly helped me navigate my relationships over the past 3 years and know it will continue to do so. 

What’s Typical Anyways? The Lesson of Reframing My Perspective

Parenthood is a transformative milestone, but for me it has been especially so.  Caring for Jillian was an emotional struggle for me.  Nothing was typical, and I had to learn to adjust my expectations of what a good day meant for our family and to view life with a more mature perspective.  Because my childhood was so different from Jillian’s, I wrestled with wanting to give her experiences that weren’t really important to her. Whether it was due to her physical limitations or personality, she enjoyed very simple, uncomplicated activities.   Being her father has taught me to acknowledge and accept people for who they are and to respect their desires and perspectives. Three years removed from her death I am still embracing this lesson – it’s one worth holding on to - I guess on a day like Thanksgiving even more so.

Happy Birthday (and Thanksgiving)

Tomorrow is Thanksgiving.  But it is also Jillian’s birthday…………..
 

11.24.11 – Jillian, you are turning 14 years old.  Happy Birthday little one! It is such an honor to be your father.  Though there are many firsts I will never get to experience when compared to other dads in this world - your first boyfriend (and me interrogating him), you graduating from high school, walking you down the aisle for your wedding, or witnessing the birth of your own child - I am incredibly and overwhelmingly grateful for the nearly 11 years you allowed me to be your daddy while you were here.  And though my heart aches with indescribable pain when I think about the day you had to leave, our bond is now significantly different than most father and daughters.  But you are still, and always will be, daddy’s little girl. Your mom and I feel like the most fortunate people in the world having you as our daughter.  While on this earth, you gave us so much - more than you will ever realize - and for that we are forever thankful.  Your huge heart and selfless spirit has left an everlasting mark on our lives. My relationship and love for you grows with each passing day.  Thank you.

It’s still hard to grasp that you have been gone from this earth for over three years now.  I am sure that the three years you have spent in your new world have been extremely different than the first three years you spent on this earth – and for that I am truly happy.  I could go on and on about what I think you may have been doing these past few years, but instead I want to make a special list for you today on your birthday - a list of 14 things that made you so special.  Certainly from my perspective this list is infinite, but at least for today, we will limit it to the number of candles on your birthday cake.  I hope it makes you smile - I know it gives me a 'waaarm rewaaaarding feeling' (private joke) just writing these down.... 
So here it is....
     14 SPECIAL THINGS ABOUT JILLIAN ON HER 14TH BIRTHDAY

1. Your amazing smile and belly laughs.
2. Your ‘Three Stooges’ sense of humor.
3. The way you said, “Silly Mommy”.
4. The way you shed tears sympathetically for other ‘hurting’ children. 
5. You loved reading the same book over and over at bedtime.
6. You clearly understood the relational angst between Bert and Ernie on Sesame Street.
7. You always picked up on the special nuances of relationships.
8. You loved all things Halloween – orange, pumpkins, bats, spiders, snakes and owls.
9. You always had an opinion.
10. You loved making videos and putting on shows.
11. You loved to dance with daddy’s mommy.
12.  You had a very special relationship with mommy’s daddy.
13. You were always warm and giving to others even when you didn’t feel too well.
14. Before you died you wanted to make sure daddy and mommy would be okay.

Jillian, Happy Birthday.  I love you. Over the next few days in your honor and to celebrate your life, I will initiate 14 unique acts of kindness to encourage others in the way I know you would enjoy.  

And to everyone else - Happy Thanksgiving - be sure to really spend some special time with the people you love.

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.

Little Wonders & Small Hours

Today while at work, I was listening to music in the background when I heard the song entitled Little Wonders by Rob Thomas. The melody and the words hit me on an emotional level and for a minute or so I just gazed at the many pictures I have of Jillian on my wall as tears welled up in my eyes.  It was three years ago this month in which she began her transition.  This time of year definitely makes me contemplative, and somber, reflecting on the special years we had with Jillian and looking for new and exciting ways to strengthen my eternal relationship with her.  The words of the song are poignant to say the least.  I am sure I have heard this song many times before, but the lyrics never really hit me the way they did today, framed with memories of Jillian.  Here they are….

let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels

our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain

let it slide,
let your troubles fall behind you
let it shine
until you feel it all around you
and i don't mind
if it's me you need to turn to
we’ll get by,
it's the heart that really matters in the end

our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain

all of my regret
will wash away some how
but i can not forget
the way i feel right now

in these small hours
these little wonders
these twists & turns of fate
these twists & turns of fate
time falls away but these small hours
these small hours, still remain,
still remain
these little wonders
these twists & turns of fate
time falls away
but these small hours
these little wonders still remain

Of course everyone will have their own interpretation of these lyrics, but as I have thought about them, the ideas and words that stand out the most are those I have highlighted.  I have written about this before, but the idea seems engraved in my mind and memories.  Embrace the simple. Enjoy the moment. 

I often think of the very simple yet special things that we did with Jillian that she loved so much.  Nothing too complicated.  As much as I tried to make things complex and exciting (more for my own selfish reasons of wanting to have a ‘normal’ life), she truly embraced the simple and pure enjoyment of the little wonders of life – the small hours.  My idea of a day at the beach was one full of sandcastles, picnic baskets, and sunburns. I can say that never really happened.   But what did happen was Jillian’s idea.  It was much simpler – consisting of a short ride on daddy’s back while the wind swept across her face, and a few moments of running her toes through the sand. Finished.  Time to go home.  A special memory that is now etched permanently and deeply in my heart and mind – a small hour that I will never forget.

How much better can life really get?  Fully experiencing the moment or embracing an hour without societal pressures or unrealistic self-imposed expectations.  It’s a challenging proposition to try and live this way on a regular basis.  But what if for an hour or even a few minutes each day we made a point to wholeheartedly embrace and experience that time-frame. I regret that I didn’t understand this lesson earlier from Jillian. I know that she was trying to teach me this from day one.  My own ignorance, ‘simple-mindedness’ and ego prevented me from doing so. But as I strive to implement this lesson and gain more clarity about truly experiencing each day as it comes, my hope is to make Jillian proud of me.  As Rob Thomas says, “our lives our made in these small hours, these little wonders.”

The Runaway Factor

One of my favorite writers is Atul Guwande (see my link to his works on my sidebar). I just noticed on his website that his dad, of 88 years, died a few weeks ago. I have been meaning to email him about my response to his articles, but have never gotten around to it. He seems like he is a person who truly understand the conundrum of death. So last week I emailed him to offer my condolences on the passing of his father and shared a bit about Jillian and the work I have been involved in since her death. To my surprise, he took the time to personally email me back a day later, and offered his appreciation for my kind words and encouraged me to continue the work I am doing.

This email exchange with Dr. Guwande influenced my ideas for this post. I think that when you lose someone significant in your life, it forces you to look face to face with the entire idea of death and all of its tangential yet intense issues (our faith system, existence of God or a higher being questions, others perspectives and belief systems, our own humanity). It causes you to pause and appreciate the little things. It forces you to take a look at your own humanity and look closely to understand who you really are and what truly makes you tick.

However, for most people death or even talking about death is a scary proposition – most want to run away from any conversation about death - especially when it involves a child. Take for example when I am asked by someone if I have any children. Sometimes I hesitate, but I usually decide that if I am going to be in a relationship with this person (whether as a friend or in a work environment) for any length of time they need to know who I am, and a huge part of who I am is Jillian’s dad. That will forever be true. So to the ‘big’ question I reply, that I have one child, Jillian, who died three years ago. I then gauge their response and if I sense that they are in a place where they can hold this (what I consider) sacred and privileged information, I show them a picture and share a memory or two of Jillian. Then I often invite them to ask me more about Jillian (as I love telling stories about her). And then ask them about their children. After all, any self-respecting parent loves to tell stories and brag about their children. Why should it be any different for a bereaved dad? If, however, I sense that they are having a difficult time or not able to handle this information, I quickly ask them about their family and children or another topic. (You can see it in their eyes…..they just want to run from this uncomfortable situation as quickly as possible...what I call the “runaway factor”.)

I know that this ‘process’ I use is quite subjective and even judgmental, but it kind of goes back to my point about people being afraid of death. My experience so far has been that those that have experienced loss and death and have wrestled with it and even embraced it are better able and more equipped to respond appropriately to a conversation similar to what I have just described. I had one of these meetings this past week. This person I met respectfully held Jillian’s story, expressed appropriate compassion, but at the same time wasn’t afraid of the conversation. Wouldn’t you know, it was someone who was raising a child who has special needs (a unique subset of loss) and has experienced the ‘runaway factor’ firsthand. We had a wonderful conversation about our children and truly appreciating the little things in life that we too often take for granted.

I think that if people really took the time to look at the full spectrum of life, what I like to call from the ‘soup to nuts’ approach, they would accept that birth and death are the most sacred of the sacred. They wouldn’t be so afraid of death, or even just having a conversation about it. Losing Jillian has been the most painful thing I have experienced in my life. I miss her physical existence intensely. I hate that I have to be labeled as a ‘bereaved parent’. But it has been through her death that I have learned and understood more about myself than any other experience in my 46 years of life. And she is still teaching me so much. So I need to honor her death as much as I have honored her life. They are equally sacred. If more people understood this there would definitely be less ‘runners’ in this world.


PS –if you have children that love the entertainer and singer, BRUNO MARS, you can buy tickets for them to a private concert in Atherton, CA. Visit www.summersymphony.org for information.

Jillian's Journeymen is fundraising for Kara

Please join or support me in my efforts in this annual event.

Overcoming the “1000 day stare”

The deeper that sorrow carves into your being, the more joy you can contain. Kahlil Gibran

Back in WW II a phrase was coined - “the 1000 yard stare”- and was a symptom displayed by victims who had succumbed to the shock of trauma by dissociating from it. Learn about it here: Thousand Yard Stare

I have been thinking about this term lately because on June 30th it marked 1000 days since Jillian died. For some reason I had been riveted on that marker. Perhaps it was just the idea of accepting that 1000 days had gone by or perhaps the WW II phrase had left a mark in my memory. Day 1, week 1, month 1, year 1, now 1000 days. Regardless of the reason, it seems significant and has spurred me on to write about this concept from a bit different angle – not the 1000 yard stare, but the 1000 day acceptance.


It was about 6 years ago this summer that Jillian began to walk on a regular basis. She was 7 and ½ years old. Three years and 4 months later she would be dead. Its hard to, even today, accept the fact that she isn’t with us anymore physically. I am still in the midst of a project of turning all our camcorder tapes into DVDs and recently I just happened to record that summer when she started walking. The tape also has my mom and her dancing together. What an incredible memory. Sometimes I feel like I just want to sit and watch her videos for hours at a time. I think it will help me as I process my grief, but I also know it will truly exhaust me emotionally as it exposes the wound that has been healing now for just over 1000 days.

I know that as a minimum a scar has begun to form over the huge hole that is in my heart that held and still holds all the love I have for Jillian. I was reminded just recently of how amazingly fragile this wound and the scar that has begun to form over it truly still is. We added a 12 week old kitten to our home to be a friend to our older cat. This little guy grabbed my heart and I fell in love with him. I stayed up late to care for him, got up early to feed him, and spent hours playing with him. I was nothing short of enamored with this little fella. Unfortunately it didn’t really work out with him and our older cat getting along and after nine days we decided to send him to another family who wanted him. I was crushed and literally cried as I said good bye to him. I was totally taken off guard with the amount of emotion I felt for him. I realized a few days later it was the deep wound of my loss of Jillian being exposed. I had an outlet to give all that love I had in my heart, but when we had to send that little kitten back that incredible pain of missing Jillian came back with a vengeance, almost as if that scab that had begun to form was ripped off and my fragile and vulnerable heart was broken all over again.

I can be involved in a hundred good causes, find a new job, even counsel and help others as they navigate grief, but at the end of the day I miss my little girl in an immense way. For nearly 11 years I got to be a dad, got to love and care for the most incredible little girl in the world. I miss everything about her. The way she laughed. The way she loved her mommy. The way she loved people. Her sense of humor. Her compassion for others. Her intuitive mind and soul. I just wish I could hold her one more time. Just one more video. One more book to be read. One more knock knock joke to be told. One more trip to her favorite beach spot. One more late night giggle session. One more tandem slide ride. One more walk along the canal near the park. One more trip to the video store. One more visit with grandma and grandpa. One more birthday cake candles to blow out. One more computer game to play. One more bath with a round of singing. One more Sunday morning walk. One more bubble blowing session. One more outing to the mall. One more night looking at the moon. One more day of school. One more dinner of chicken and rice. One more breakfast of pancakes. One more game of Old Lady Who swallowed a fly. One more time watching Nemo or mother goose or Barney or Sesame street. One more trip to get an orange balloon. Just one more hug……one more kiss…… How I yearn for all of these so much.

I know that at some point in the future, unless I die beforehand, Jillian will have been gone longer than she had been with us. I cannot fathom what that will feel like. Her departure still does not feel real or true. I still think that perhaps one day this nightmare or dream will be over and we will get on with our normal lives. Certainly I am supposed to become a different person because of all this and I believe that I have started to do just that. But at the end of the day the greatest desire I have is to be able to love my little girl again, the way all other fathers do - to hold her, to laugh together, and to see her grow in this world. It is obvious to me that this was not my destiny. But instead I am supposed to learn to love someone and build a relationship with them even after they have departed physically. I have to learn to love and have a relationship with Jillian even as I navigate my own “1000-day stare” and not become a casualty of the war of loss and grief. It would be easy to do so – just detach and disassociate from even the idea of continuing a relationship with someone who isn’t here physically – and to allow the pain of her loss to suck the very life and soul out of me, and stare aimlessly into the abyss of pain, focused on her physical absence.

But I refuse to do so. My relationship with Jillian continues to grow and develop. It is tantamount to who I am and what I am supposed to do with my life. I must allow my pain and loss to shape and form me into a deeper person – someone who Jillian will continue to be proud of. A loving person who deeply cares about humanity, is accepting, compassionate and ultimately secure enough to be vulnerable and confident at the same time. I realize that I certainly have a long way to go, but at least I know that I have the next 1000 days to do so (without the stare of course).