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).

On Father's Day - Remembering My Daughter's Appreciation

Navigating the loss of a child is quite the journey.  Though I can honestly say that the intense acute pain and grief I first encountered has slowly subsided, there are days and sometimes weeks where that pain makes its way back into my bones. I noticed that happening over the past few days and on a few occasions my eyes filled up with tears. Perhaps it is the knowledge that Father's Day is tomorrow, or the fact that I recently added another pet to our home. When it happens, I don't get too riveted on trying to figure out why, I just go with it - as it reminds me all the more of how much I love my little girl. I often think about the small things that she did that made me laugh.  I don't often remember (unless I force myself too) the difficult times she had in her life - with all her medical issues - but now often find myself thinking about the great days she had or the short day trips that we did with her.  Sometimes out of nowhere I will think of something she did or liked and my mind will embrace that memory and it gives me the added inspiration to keep on living my life to the fullest. 

So tomorrow society will celebrate Father's Day.  A day in which we get to say thanks to our dad's for all they have done for us.  I know that some won't be able to do so (be it distance due to a strained relationship or the distance caused by loss).  But for those that are able, be sure to make the most of it.  Write a card, make a phone call, send a text.  Above all else, let your father know the thing you most appreciate about him.

Becoming  and being a father to Jillian was the greatest gift I ever received.  Caring for and loving her gave me the greatest feeling of happiness I have ever encountered.   And Jillian showed her appreciation to me in so many ways; by always wanting me to be around, by having me read her favourite book to her over and over and over, by bringing me my reading glasses when she saw me working on the monthly bills, and by making sure we got some special time together during those last few weeks before she died. Some were little ways, others were huge.  In everything she did, even as I sat with her during the last hours of her life she continued to show me how much she appreciated me being her daddy and how much she loved me. 

So tomorrow I will remember that.  Though she won't be here physically to write me a card or give me a kiss, I will think about the many ways in which she showed me how much she loved me and for that I will be incredibly grateful.  There will most likely be tears, but tears of both sadness and happiness.  As the writer Gibran says, "When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."  I hope to take in a hike and spend the time with my wife and nature and revel in thinking about how being Jillian's dad was the most delightful experience I could ever have asked for in my lifetime, even though I miss her dearly.  To the other dad's out there who have suffered the death of your child, I encourage you to  try and do the same....

An Unfortunate Honor

It has now been 132 weeks since Jillian left this world.  Much has transpired since that time.  I have gotten myself involved in many great non-profit groups focusing on the care of children and families going through similar situations that I have experienced.  I have investigated, applied to and been accepted to a graduate program in social work.  I have changed jobs after working for essentially the same organization for 19 plus years.  I have started a new job in a company with a mission of meeting the needs of families and kids.  I have taken up hiking and even started playing softball again.  I have gone to the state capital and took part in a lobby day for pediatric palliative care. I have gone on long walks and spent numerous hours writing in this and other journals about my feelings and thoughts about Jillian’s death and my own journey through grief and life.  It has been rewarding to do all these things.  Perhaps that is what Jillian intended for me upon her departure.  I feel as though I have actually become a new person in a lot of ways, but there is still a lot ahead of me. I look forward to it as much as I look forward to seeing Jillian again.  

But through all of this, over the last nearly 1,000 days, the most significant element of all of this is the people who I have met.  There have been so many.  Many are other parents who have lost a child as well - and labeled as bereaved parents just like me.  These parents have a special place in my heart.  I think about them often and have forged great friendships with many of them. 

As a parent who has lost a child, what do you say when you meet another parent or couple whose child has died?  I have wrestled with this concept.  What is appropriate in this politically correct focused world? To me it isn't at all about political correctness, but it's about honor and respect.  It's about breaching the sacred.  It's about our children and the pain we both feel because of their absence.

Most times when I meet a new person and I am genuinely glad to have met them, I usually say, “It is a pleasure to meet you, or I am glad to meet you.”  But when you meet another parent who has lost a child is it really a pleasure? “I’m glad to meet you” just doesn’t seem like the right thing to say.  After all, the only reason your meeting is because both of you have lost children.  Both would certainly choose to have their child back instead of meeting this new acquaintance.    The rub though is that after you meet, my experience has been that it was almost as if it was set up from the get go.  The parents I have met are incredible and amazing. They have lost a child, and they are still standing.  They are resilient. Their outlook on life is deeper.  They understand and value things from a different perspective.  They realize that life is very short, yet can be full of amazing lessons and journeys.  They wrestle with not being judgmental and often bite their tongues when their friends with living children complain about the little things.  They advocate for other parents and families who have experienced or will endure similar loss.  They get sad and cry in the middle of the day when they remember a special thing about their child.  They understand respect and boundaries. They cry for others who experience loss.  They show a great appreciation for life and have a deep compassion for others. They understand things a bit deeper than the average joe getting a cup of coffee at Starbucks.

It is truly a pleasure and an honor to meet these parents. Yet at the same time, your meeting is based on an incredibly unfortunate set of circumstances – the death of your children. It is a paradox that I certainly won’t figure out in my lifetime, but do think it gives me insight into choosing the most appropriate greeting. So, here’s what I will say from now on:  It’s an unfortunate honor to meet you.  I think that just about sums up the entire sacredness and truism of meeting another bereaved parent. An unfortunate honor.

No Pain....no Gain, Really?

Yesterday marked 125 weeks since Jillian left this world.  Whenever Friday comes around, I calculate in my mind the time that she has been gone.  Initially it was days, and now it has become weeks. At one point in the future I realize it will become months, and then eventually years. 


That's sort of how we live our lives....marching time by minutes, hours, days, weeks, months, years....We go to work at a certain time, counting the minutes and hours down until we get to leave for home.  Sometimes we forgot that as time continues to march on, we too are growing in ways that we may not even be aware of.  There are certain times that we in fact stop and realize that we have gone through a growing period.  Often when we are young, we go through growth spurts physically. Our friends, family and people around us say, 'why look how 'Jimmy' has grown!  That's of course natural for most, but how often do we really look at the growth spurts we go through emotionally, spiritually, and relationally. 


When is the last time you actually took time out to look at this closely.  Navigating the death of Jillian has certainly forced me do to such a thing. Often when someone goes through a challenging time there is growth.  It is a common perspective in many many cultures, religions and societies.....as young athletes, our favorite slogan was always....'no pain, no gain'.  But is that an absolute?  I have come to realize that pain is a relative term.  Someone who loses a job experiences pain, but is that the same pain as someone who gets cancer or loses a child.  My judgmental self says absolutely not.  My daughter not only died, but prior to that she had cancer, lived with heart failure and was born with a "dismissed by society" genetic disorder and had disabilities.  Certainly my pain is worse than these other two examples.  But wait, what about the pain of a parent who loses two children in a car accident suddenly?  Isn't their pain worse than mine?  It must be right?  No brainer?  Maybe, mabye not,.......absolutely...not really sure???


See, the issue isn't whos pain is worse.  From the receiver of the pain point of view....it all is devastating, and it doesn't really matter what is going on with others around you and their pain - you just feel your pain.  The real issue is what you do with that pain.  See, the saying is correct....'no pain, no gain', but for a different reason than most of us think. Most see that phrase or idea as a cause and effect perspective.  If you feel pain you will gain.  But the reality of it is this:  when you experience pain due to loss, though it is difficult and challenging on levels that others may not have yet experienced, you can decide to learn from it and grow. You can come out to the valley or pit of loss at a 'higher' level than that which you entered it.  But you see, it's not an automatic thing.....it's really a decision that starts with awareness of the pain itself - that is what starts the possibility of growth and 'gain'  You need to stare" the pain and loss in the face" and take it on.  There's a great story about this in one of my favorite books "Swallowed by a Snake". At the end of the day, growth is really about awareness, unfortunately something that most guys, me leading the way, usually are not too good at.  That is being too nice - most guys deliberately run away from it


So as I think about the time since Jillian has gone, I try to think about how her loss has helped me to grow - how my pain has given me the opportunity to gain.  I think there's a long way to go, but I think I have at least recognized that being aware of where I am at on a daily basis is the first step, and though I often fall short of this goal, isn't being aware of that very fact a step in the right direction....Hopefully with the passage of time, I will be able to really look back and clearly see the gains that I have made over the months and years..  But for now, I can only measure it in weeks.....125 to be exact.  

Publish Post

Birthday Thoughts

I haven't gotten too good at keeping this post updated, so if anyone is actually reading this, my apologies.  But the reality is simply that I need to write my thoughts, feelings and ideas down, but just don't make the time for it.  Every time I do so, it is an opportunity to truly investigate what I am feeling inside. So I press on....

I recently celebrated another birthday (that is 3 now without Jillian).  I am not sure if celebration is the correct word any more when it comes to birthdays - especially as I get older - perhaps a better word is acknowledged or appreciated?  I definitely believe that acknowledging that another year has passed and that you are now a year older is important.  Hopefully you have learned another year's worth of 'stuff' and 'things.'  Hopefully you have impacted the world and made it a little better. Perhaps not.  Those are the things I think about at birthdays now. I look back over this last year, and realize that I have learned a lot about myself in realizing that I have a long way to go in developing into the person I am supposed to be - still don't go deep enough with my feelings, and shy away from really putting the work in that is needed to do so...But at the same time I also believe I have left a positive mark in many people's lives and have helped people along the way. 

I also look at each year now as one year closer to seeing my daughter again - not in a depressed, can't wait for that day, kill me now state, but in a more realistic, I have got a lot of things left to do on this earth perspective, but also can't wait for the day I get re-united with Jillian.  Perhaps is it strange to look at life in this way, but if you  have lost a child, you get it - especially if it was an only child.  She is not coming back here, at least not physically, so I will have to go to her, eventually. 

I often wonder what she is doing in the spiritual realm and my intuition says that she is actually quite busy with many 'other than this world' duties.  Perhaps she has been assigned to look over and encourage some sick children in a hospital or perhaps she is on a special mission helping a poor family in a third world country.  I like to think that knowing her, she is volunteering for the most complex and intricate of cosmic assignments.  And, every so often she gets some time off and stops by to visit - and shows herself to me in subtle ways.  Here's an example:  As I was driving home from work on my birthday last week, I was wondering how (or if) she might surprise me with something.  I thought to myself...keep your eyes open.  And wouldn't you know, as I crested the hill of an area of the highway that overlooks the entire bay area, off in the distance was the large blimp that we have come to associate with Jillian (remember - she loved balloons and this very blimp showed itself on the day we had her memorial service in the bay area).  I know beyond a doubt that Jillian made sure that I saw that blimp as a nice gift to me on my birthday.  When I saw the blimp, I chuckled and said out loud - "thanks for remembering my birthday Jillian", as a tear ran down my cheek.  It reminded me how truly unselfish Jillian was in her life, and in her death is still being so.  I have continued to try and follow here example.

So as I acknowledge and appreciate another year turning on my birthday calendar, I look forward to seeing what new journeys I will be involved in, what new people I will meet, what new ideas I will wrap my brain around, and how all the different aspects of my life will be weaved together.