Blueberry Pancakes

The month of November seems to have flown by.  Jillian’s birthday fell on a Saturday this year.  It’s hard to believe that she would have celebrated her 15^th birthday this year.  The year she was born her delivery date was a few days before Thanksgiving.  This year, Thanksgiving fell a few days before her day.  I had been thinking a lot about what I would do for her day and considered many different options and plans. As it often happens, all my potential plans went south when I woke up on Wednesday the 21^st in an anxious sense of contemplation, bordering on sadness.  I decided to just move forward and went to my normal Starbucks location on my way to work.  Then it happened. As I sat writing in my journal, a deep sadness overwhelmed me and I felt my eyes beginning to well up with tears.  It was a sadness that I hadn’t experienced in a while and I knew that this was going to be a day that I needed to take to be with Jillian.  For all the planning and thinking I had done about what I was going to do on her birthday, the decision had just been made for me.  This was the plan that was supposed to transpire on her birthday.  I let work know that I wouldn’t be coming in and then headed out to the ocean.

For the next few hours I walked on the beach and talked with Jillian and cried – tears similar to the very days after she died.  I wrote her name in the sand.  I took in the wonders of dogs and children playing in the low tide and a lame sea-bird struggle to take flight. I sifted through dozens of sand-dollars that had washed up to the beach, unsuccessfully looking for one that was whole, and settling for one which was beautifully imperfect – a perfect analogy for this journey.  I watched large cargo ships sail out into the horizon until I could no longer see them.  This sight immediately triggered my memory about the poem that we had read at Jillian’s service in Hawaii.  I share it again here, because perhaps it is poignant today for someone who might be reading it for the first time….

“I am standing upon the seashore.

A ship at my side spreads her white

sails to the morning breeze and starts

for the blue ocean.

She is an object of beauty and strength.

I stand and watch her until at length

she hangs like a speck of white cloud

just where the sea and sky come

to mingle with each other.

Then, someone at my side says;

"There, she is gone!"

"Gone where?"

Gone from my sight. That is all.

She is just as large in mast and hull

and spar as she was when she left my side

and she is just as able to bear her

load of living freight to her destined port.

Her diminished size is in me, not in her.

And just at the moment when someone

at my side says, "There, she is gone!"

There are other eyes watching her coming,

and other voices ready to take up the glad shout;

"Here she comes!"

And that is dying.”

                  Henry Van Dyke (1852 – 1933)

Being at the beach, thinking of Jillian’s life and all that has transpired since the day she died was overwhelming for sure, but it gave me a great sense of connection with her.  A sense of ‘this is exactly what I am supposed to do this year’ to remember her on her special day. I am frequently asked by other parents who are part of this 'club', "what am I supposed to do on those anniversary dates?".  There is often a lot of pressure and anxiety that is coupled with deep grief on those dates.  I often reply that I try to do something to honor or celebrate Jillian's life and give some examples of the things I have done.  Then I finish by saying...sometimes, the answer is nothing at all - just allowing things to play out as they may. I am glad I took my own advice this year.

I finished my afternoon off with a large plate of blueberry pancakes – one of Jillian’s favorite Saturday breakfast foods.  Perhaps she enjoyed the blueberry flavor and getting a ‘blueberry mouth’, but my hunch is that she enjoyed having her dad hover over her to make sure the blueberries or her spork didn’t happen to end up on the white carpet! Memories like these will always be emblazoned in my mind.  As I ate my stack at IHOP I thought of Jillian and how very lucky my life has been, about how lucky I am to be her dad.  It’s still what I am most proud of. Those nearly eleven years with her will always be the greatest in my life. I feel so privileged to have had that opportunity.  

Happy Birthday Jillian.  I love you. You are still, and always will be daddy’s little girl.  We'll see each other soon. 

Those Precious Minutes – Leave them for the Family

We truly live in an instance information age today. Within minutes, everything that happens in our society is published on Facebook, tweeted on Twitter or posted on a litany of news, informational and personal blogs.  And most of the information we read on these media sites we take as fact, especially when multiple sites are validating the same story.  

Why am I talking about this?  Well, when I read the recent LA Times article: “UCLA study suggests Partnersfor Children benefits patients, state” I was quite encouraged.  The study truly validates from a cost perspective what the families and care takers ‘on the ground’ have known all along.  But that is where I have a problem. Why does it take thousands of dollars, studies, facts, fact-checkers and a litany of red tape, algorithms and multiple layers of bureaucracy to verify something that could be easily found out by interviewing or polling 100 families about their experience of caring for a chronically or terminally ill child?  For that matter, I can make the case myself. 

During my daughter Jillian’s 10 short years of life, she required quite extensive medical care.  Based on my calculations we wasted over a month of time getting care in the traditional model (traveling to the clinic, finding parking in a crowded parking lot, waiting at the clinic for the appointment, having the appointment, waiting for the blood draw, waiting for the lab result, traveling back home, etc., etc. I haven’t even factored in the anxiety and stress attributed with going to the hospital and being admitted at times.)

Over 4,000 minutes lost. I would trade anything to get some of those minutes back.  Minutes which could have been used to take a walk to the park, watch her favorite video, read her favorite book, sing her favorite song,  or hear her tell us her favorite ‘knock knock’ joke.  You see, as a parent with a child that has a chronic health condition, often the question that resides in the back of your mind is this: how long do we have?  And so, every moment we do have is so precious. Simply put, if care can be delivered in the home, then we get those minutes back!  This may not be ideal for all families, but that is why a program like Partners for Children is so crucial.  And now we have statistical proof it saves money!  But isn’t that just common sense, after all the old cliché goes something like this:  “time is money”.

To put a punctuation mark on this point, let me share a final ‘fact’.  I have kept in touch with my daughter’s cardiologist, and a few months ago, I stopped by his office to say hello. We talked at length and he stated something very moving and poignant. He said that seeing the slideshow of Jillian’s life at her memorial service, changed how he practiced medicine.  It made him realize that his patients have an entire life outside of the clinic – and allowing them to have it is all important.  You see, he’s referring to those precious minutes.   

So back to my introductory thoughts.  Since we live in this instant information age, wouldn’t it be interesting to conduct a poll on FB or Twitter and confirm what we already know from our families in these situations.  Those minutes are precious.  Let’s leave them for the family. And, by the way, it saves money too.

"Silly Daddy" - Let It Go

The weather here in Northern California has been cool with lots of rain lately.  We really need the rain though.  There is something about this time of year and the weather that often comes with it that creates a pensive or contemplative mood.  I have found myself thinking about the many memories of Jillian and the lessons I continue to learn from her life. 

Recently, in my contemplation, one of the greatest challenges for me has been thinking back over the years of Jilian's life and being overcome with feelings similar to the following: "Did I totally miss the point while Jillian was alive and focus more on what I desired and wanted for her versus what she wanted for her life?  Did I ever really pause to think what was most important to her?  Did my own perception of what it means to be a good dad or provider get in the way of actually being just that according to what Jillian needed, and not my own biased or ego-driven definition?  Did I love her the way I was supposed to?  Did I love her the way she needed me to?"  These feelings and thoughts overwhelmed me to the point of tears.  If in fact, I missed the mark, I felt horrible and needed her to know that I was sorry for being selfish in my care for her.I found myself writing to Jillian and asking her for her forgiveness.

I have had some time to think about these feelings and came to the realization that though they are valid and real, they are probably unwarranted.  My best friend and wife reminded me that Jillian knew how much I adored her and the full extent of my unconditional love for her. That was never a question. Jillian's love for me was equally as unconditional and even if I didn't do things 'right' she could accept my shortcomings. After all, she was teaching me how to be a better father and person.  She would probably just say something like, "silly daddy" or in other words, 'you need to let that one go." So that is what I decided to do. 

I can only imagine there are other bereaved parents or caregivers out there who have had thoughts similar to those that I have shared - questioning our own devotion, love and care for our deceased children and loved ones.  Take a lesson out of Jillian's book today and 'let it go.'  No second guessing.  Just remember the relationship you have and hold it close to your heart. That can never be taken away.

A Fine Traveling Companion

It’s hard to believe that January 2012 is shortly coming to an end.  Since my last post in November the holidays descended upon me quickly and before the blink of an eye, they seemed to have left just as quickly as they arrived.  Since Jillian’s departure, holidays seem a bit different now.  I often looked forward to them because it gave me plenty of extra days to spend time with her. We would spend plenty of time taking long walks, reading books, blowing bubbles, practicing riding her tricycle and (our favorite) making videos together. I also felt excited knowing that ‘Santa Claus’ would soon be dropping off presents and Jillian always appreciated the sight of a brightly packaged DVD-shaped gift….she always seemed to want to open those first.  The entire Christmas day was usually spent opening gifts – not necessarily because there was an excess of them, but because for every gift opened, she would spend a good amount of time playing with them.  These are still some of my most special memories. 

I think that the thing about holidays is that for the majority of people they are filled with family gatherings and get-togethers.  So, for anyone who has experienced the loss of a loved one, they subtly (and often directly) bring back that acute pain of loss because the absence of their loved one is quite pronounced during this family-focused time.  For the last few years I have experienced this firsthand, but one of the strategies I have found to be helpful has been to be sure to just get some time alone to relax and spend time thinking of special memories of my daughter.  What often times begins as a difficult undertaking ends with me energized when I recall what a unique and wonderful little girl I was privileged to be the father of and the special life lessons I learned from her. 

During the holidays this year, I read Rachel Remen’s book Kitchen Table Wisdom.  Many of you are probably very familiar with it, but as usual I seem to be behind the times on the best books to read.  Needless to say, this is an amazing book, written by an amazing woman.  I have listed it on my resources.  A few of my favorite passages from the book are towards the end where she says, “The most important questions don’t seem to have ready answers.”  And then, “An unanswered question is a fine traveling companion.  It sharpens the eye for the road.”  What a powerful and poignant set of statements.  As I read these words for the first time, I thought, “That is absolutely true in my experience.” Jillian’s death has opened up this huge box of ‘what ifs, whys, and how comes’.  As I have tried to ‘answer’ these questions over the past few years, it seems like striving to do so has actually allowed me to become sharper in my focus of what I am supposed to be doing while here in this lifetime.  Jillian has been a huge part of my life, but it’s almost as if her death has opened up this different life for me that I would never have been able to understand or harness without her departure.  (I pause now and think that as I wrote that, Jillian has an ear-to-ear smile looking down on me and thinking…he is finally starting to get it!)  I know it’s okay to be sad (and still cry) when I think about her not physically being here anymore, but I realize more and more that living life as I am destined to (shaped and framed by my past as well as the many unanswered questions along the uncharted road) is what is most important.   I think often about what Rachel Remen says, “Everyday life is filled with mystery.  The things we know are only a small part of the things we cannot know but can only glimpse.  Yet even the smallest of glimpses can sustain us.”  Today I feel sustained knowing that Jillian already knows what I will be learning in the coming years.