Tick, tock. Tick, tock.

Dear Phillip;

5 years of tick-tocks have gone by since I said goodbye to you.
That's 78,926,400 ticks, and 78,926,400 tocks.  A thought takes only a tick.  A feeling can well up in just the space of a tock.  That's a lot of thinking of you and missing you.

The old grandfather clock had stopped working, so yesterday I decided to try to fix it.  It took some time, but it's working again, keeping perfect time and chiming and gonging on schedule.  I thought of you a lot while I was working on it.   Trying to get a clock to work is quite an appropriate metaphor for me.  Each day I have to decide if I want to keep moving forward, or stay behind, looking for you.  Leaving the clock stopped wouldn't stop time, though.  And if I run it backwards I can never get you back.

I asked you if you would please visit my dreams last night.  For some reason I still can't dream of you.  Just a few days after you died I woke up in the morning with a physical smile on my face, and I realized that - although I had no memory of it - you must have visited me in my sleep.  There is no way I would have awoken with a smile on my face when I spent each day in tears.

This morning I didn't wake up with a physical smile on my face, but I did awaken in a surprisingly happy, peaceful mood, so I think you swept past me in the night and gave me a hug and a kiss.  Thank you for that.

I found this note I made to myself on January 20, 2015.  It says:

"For the first time in my life I have no idea where I am going, and yet I am not afraid."

I still haven't figured out what I am "supposed" to be doing with this third third of my life, but I have got the clock working, and I'll see where Time takes me.

Wherever it takes me, I will continue loving you, and missing you, every second of every day.
Mom

4 years…..

My dear, dear Phillip;

It is four years tonight since you left us.  It has felt like a journey of 1000 miles, slogging through a jungle of suffocating grief, interspersed with moments where the sun has broken through the canopy to warm my face.

But something has changed in the past few months.  Now when I walk into your bedroom, or look at your picture, or just think of you, I am overwhelmed with love, gratitude and joy.  The love that is every bit as strong as it ever was throughout your whole life.  Intense gratitude for having been given the privilege of being your Mom and having you in my life for nearly 27 years.  And a wellspring of joy just thinking of you.  For most of the past four years when I have thought of you my stomach has sunk and tears have welled up in my eyes (or poured down my face and soaked my shirt).  Now when I think of you I am more inclined to smile from ear to ear, even while strong emotions churn in my stomach.  But they have become different emotions.  All the pain, joy, regret, love and loss is mixed with gratitude, and the gratitude is stronger than the pain, regret and loss, leaving me feeling the love and joy.

I told your Aunt the other day that gratitude is a transformative emotion.  I think that is why I think of you with such joy now.  Because throughout all these four years journeying through the valley of the shadow of grief I have been grateful for the cause of the journey:  you in my life.  I wouldn't give up the past 31 years for all the treasure the world has to offer.

Perhaps you know this already;  I don't know how much you are able to check in with me.  If you are, I'm sure you are very glad knowing that thinking of you is a source of great happiness for me, rather than intense pain.

I'm sitting on the love-seat in your bedroom, looking at the pictures on your bookshelves.  You in your three prom pictures.  You rappelling down Mt. Diablo.  You skydiving.  You in your track team photo. All of your mementos from all your travels and experiences.  Instead of dwelling on the fact that four years ago this moment I was in the ER with you, I am able to look at your happy memories and smile.

You will always be the source of the greatest joy in my life.  
And I will always be profoundly grateful.
And I will love you for eternity.
Mom

Whoa… another year has gone by?

My dear Phillip.

January 1, 2015.  I'm sitting by the Christmas tree, looking at the Waterford 100th anniversary Times Square lighted ornament I gave you the year you brought in the new year in New York.  It's sitting beside your picture, reminding me of that crazy and intrepid year.  It was as cold in Times Square this year as it was when you went - high 20s.

It's a strange feeling this New Year.  I feel like I'm neither looking back, nor looking forward.  For the first time in my life I am living more in the present that I ever have before.   That's something I've never been good at; I've always tended to dwell on the past and worry about the future.  But now I'm living in the moment.  I think that's another gift you have given me - I'm truly enjoying each day.  Sometimes I have to stop to think what day it is or even what month it is.  It's just today.

I'm still not sure what the third third of my life will bring, but for now I'm enjoying today.
Many people wonder what the purpose of their life is, but I have the rare gift of knowing exactly what the purpose of my life was; that was to be your mother.  To learn the lessons you had to teach me, and to love you and care for you to the best of my abilities.   At this point if I were struck my lightning I would have completed everything that was important in my life to do.   So each day is a gift to enjoy.  I get to enjoy being a grandmother.  I get to enjoy being happily married.  I get to enjoy all the little things that I never had time for before, knowing that whether this stage lasts one day or 30 years it doesn't really matter.  I'm still in that warp in the space-time continuum that I've been in for 4 years now, so I'm becoming less and less aware of where I am in time.  I'm simply in now.

Now, my love,  Happy New Year.  Happy Today.

Happy New Year?

Dear Phillip;

It happened again: the ball dropped in Times Square and a new year has started... without you.  It is really quite unbearable.  Your New Year's Eve hat says 2008.  Last night they wore 2014.  Has it really been 6 years since you sat in the frigid weather with Eric and thousands of other people to bring in the new year?

The latest FARA news includes a study that quantifies the deterioration in the optic nerves of Friedreich's Ataxians; further reminding me just how hard you had to work at everything - even seeing. I wish I could tell you how brave you were.  Did I ever do that?  Did I tell you that enough?  I doubt it. You were SO incredibly brave.  You greeted every day with a smile, even though you knew that the entire day would be a series of struggles.

I will wait.  And wait.  But I am Standing on the Promise that I will get to tell you how brave you were.    And how much of a blessing you were in my life.

I miss you so much.
Mom

Another birthday

Dear Phillip;

I had another birthday today.

I so clearly remember celebrating my birthday very pregnant with you, 29 years ago; just a couple weeks before you were born.  It doesn't make sense for me to have birthdays - for me to get a year older - and for you to never see another birthday.  If only I could give you my birthdays.  It would make me so happy if I could.

I wore the pearls you gave me for my 50th birthday today. I put them on and cried and cried.  You gave me so many gifts over the years, but the best birthday present I ever had was you.

When I blew out the candles on my past two birthdays I wished that I could hear from you; that you could tell me you were happy.  That was really all I wanted.  This year I gave my birthday wish to Brian and Heather; I wished them a long and happy marriage.  I guess that's part of the healing process; to think more about the living.

Still.... I would give every last birthday I have coming to you if I could.  They aren't the same without you.

I love you and miss you so much.
Your year-older Mom

Time warp

Dear Phillip;

So... now it's been over two years since you left us.  No, that can't be right, not two years.  2 months?  2 weeks?  2 days?  It's hard to tell, because I've lost all sense of the passage of time since you died.

I think I have finally figured it out.  It's like an old Star Trek episode, where the character is in the transporter but in the middle of the transport is split between two different spaces in time.  One version of the person is trapped in a different space time continuum, and the other part moves forward with the other people.  That's how I feel.  When you died - at that cataclysmic moment when the earth was torn in two - my soul was split into two parts.  One part is back in 2011 with you.  The other part is traveling through time with the people around me.   It's very odd.  It's like I am simultaneously in two places in time.   For part of me it was just last week when I was feeding you those shrimp you love.  (Not loved in the past tense - because it isn't in the past.)  Yes, I still tend to speak of you in the present tense.  That's the part of me that is still with you.   I expect this will get even stranger as more time passes in this continuum.  

Maybe it's not so fictitious after all.  People who write about life after death believe there will be no fourth dimension of time as we experience it.  Perhaps that's what I'm experiencing now.  The transcendence of love over space and time.

I know my soul won't be whole again until the two parts of it are reunited with you.

A letter to your cardiologist

         Today would have been Phillip’s 28^th birthday.  Although he is not far from my thoughts every minute of every day, that is even more the case today.

         Although Phillip eventually lost his battle with Friedreich’s Ataxia I am convinced that he lived longer than he would have had he not received such excellent medical care, and I place you at the top of the list.  Even though it was his heart that eventually gave out, it gave him a few more years than he would have had otherwise, because you took such good care of it.

         In case you ever wonder what someone who is going to die anyway does with those extra years you give them, here is a very short list of some of the things Phillip did in his last 2 or 3 years:

-       He brought in the New Year at Times Square with a friend.

-       He skied at Alpine Meadows every year, and had skied just 4 weeks before his death.

-       He rafted down the Colorado River less than a year before he died.

-       He jumped out of an airplane at least once in his last year, and was planning another trip when he died.

-       He celebrated his last birthday with a big party at O’Flaherty’s Irish pub in San Jose.

-       He was planning another fundraiser.

-       He went to the annual conference of the National Ataxia Foundation every year, including the year before he died.

-       He was planning to be towed in his wheelchair in Ride Ataxia, an annual fundraiser for the Friedreich’s Ataxia Research Alliance.

-       And he was writing his book, which he almost finished, and which his editor and I are polishing up and will publish.

         So never doubt whether it really matters whether someone who’s life you weren’t able to save, benefited from the time you added.  As Phillip had tattooed on his arm (in Elvish) “All you have to decide is what to do with the time that is given to you”, and you gave him a bit more to decide what to do with.  Thank you.