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.

The Second Year

Dear Phillip;

They warned me that the second year would be really hard. They were right.

I'm realizing now that the whole first year you are still in shock to some degree. Everything is on hold. You exist in a state of suspense that whole year.

But as you enter the second year you actually have to start moving, living, ... heaven-forbid, ... changing, and that is REALLY hard.

Tom just celebrated his birthday, and special days of any kind are so difficult without you. I was in tears making his birthday cake, because I knew you would love it: he requested a chocolate cake with mint cream icing. I wish I had made that cake for you - my #1 mint-chocolate fan - but I never thought of it.

I gave Tom a new stereo receiver, and the gift of being able to reorganize the family room to set up a sound system with the TV. You would have been thrilled, because now we can run a surround-sound system like your Dad has, which you said was great for watching movies.

I cried for two days as I went through the old VHS tapes. Most of them I gave away, but I couldn't part with Batteries Not Included, even though I can probably replace it with a DVD; that worn box brought back so many memories.... How I scoured the Earth looking for it for you for Christmas that year.

Part of the plan was moving the aquarium. After all that effort to drain it, clean it out and set it up in a new location we discovered that moving it had sprung a leak, so just one day later we had to drain it again and give the fish away.

All these changes drive home the fact that I can't go back in time and have you back. And I can't even sit still in time.

The first year seemed to be spent trying to come to terms with the fact that you are gone.

It's after that that one has to come to terms with the fact that life goes on.

I guess that's the work of the second year.

This may take more than just a year.

I miss you!!!

Love, Mom

St. Patrick's Day

Dear Phillip;

We ate your favorite meal last night. It was St. Patrick's Day, and Judy prepared her signature Corned Beef and Cabbage dinner. I missed you so much. Last year we didn't celebrate the day, so this was the first St. Paddy's dinner since you died. It caught me by surprise. Celebrations reach deep into my heart and bring out a fresh supply of tears. Judy had informed me in no uncertain terms that I absolutely MUST wear green this year (I had been bad in past years :), and having nothing I scoured your closet for something. I found your "All I Know I Learned from Zelda" t-shirt, which was perfect and I wore it. I told everyone it was your t-shirt when they read it. I mentioned you several times last night, and I talked about how much you loved that meal. But no-one except me talked about you. No-one but me mentioned your name. After sharing that meal for about 20 years it was as if you had never been there; that you had never existed. I cried all the way home. I try so hard to keep your memory alive; I don't know what more I can do except wear a pin that says "Please talk to me about Phillip."

For the rest of my life I will always think of you when I make Corned Beef. And for as long as it still fits me I'll wear your Zelda shirt as my Green.

So This is New Years.

Dear Phillip;

So this is New Years.

And that was Christmas.

I feel like John Lennon. Every time I heard that song on the radio over the holidays I found myself thinking "Yeah, so this is Christmas. So what?"

I knew it would be hard. SO hard. One evening I lay on the settee and watched the lights on the tree twinkle and balled my eyes out, thinking of the times you and I watched the lights on the tree together. And remembering when you were smaller you would lay on the floor with your head right under the tree, looking up through the tree at the lights twinkle.

But New Year's Eve was almost harder than Christmas.

New Year's Eve will always be YOUR night. Your solo trip to New York. Your night at Times Square. I knew I couldn't watch the Times Square ball drop. But I couldn't forget about it, either. So I turned on your Waterford Anniversary crystal ball to remember your special New Year's Eve.

The new year is a time for looking forward, but to what?

To a whole NEW year without you?

I can't believe how quickly 2011 went. People wished me a Happy New Year with a caring nod to "thank goodness 2011 is over". But turning the page on the year won't actually make anything different. I don't feel that I have made it through the valley of the shadow of death; I don't see light at the end of the tunnel. Good things will happen in 2012, but it won't be all better.

How is it that time is still moving so quickly? I have so much more of it available to me now I thought I would be more aware of it, but that just isn't happening. I find myself looking back at a day or a week and wondering what I did with the time. When you were here I packed so much into a day I now wonder how I did it all. It's like Time is a river. If you are trying to swim upstream you are very aware of the speed of the current. But if you just give yourself up to the current and float with it you aren't as aware that you are moving downstream even faster than you were before. I guess that's where I am now; I'm floating with the current rather than trying to swim upstream by constantly being up against the clock.

Which is best?

Thoreau said "What makes you think you can kill time without wounding eternity?" Am I killing time? Or am I living in the present? Should I be watching the riverbank slip past me, and resisting it by swimming upstream as much as possible? Or should I focus on the water around me and ignore the speed of the current?

I cannot forget your motto, tattooed on your arm: "All you have to decide is what to do with the time that is given to you." Time was so precious to you. I don't want to feel like I'm wasting any of the time that has been given to me.

So, Phillip, what should I do?

Should I just flow with the current?

Or will you expect a report on what I did with this time when I get to the end of the river?

I am not alone...

I know that Mothers have had to bury their sons since the dawn of time, but it had never been made as real and personal as this letter I came across in the family records: my grandmother's cousin's aunt, Hannah Bailey Conant, wrote this letter to her sister Elizabeth (Libby) Bailey Foote, October 5th, 1851:

My dear Lib,

I have been waiting, hoping to hear from you, but still I know it is hard for you to think of writing to any of us. But I have never heard any particulars of dear little Frank's last sickness and did hope you would feel like giving them to me who feel so much interested and who loved him so well. There was not living another child in the world except my own whose death I should feel as much as his, for I had lived with him so much that he seemed very near to me, and I could always get along with him so nicely. He has done so many little errands and other kindnesses for me; he had so many little manly traits that no other boy of his age that I know ever had. He was always so kind and so very fond of little Fred that my memory of him must be green and sweet as long as I live. How you must miss him at meals, at night when you are putting the others to sleep. How your heart must yearn for his presence in the silent watches of the night, when sleep forsakes your pillow from thoughts of him. And then when you return to your house after a short absence you miss his welcome and his loud shout of "Ma!" which I remember would ring through the house as soon as he heard your step on the doorstep. His affection for you will ever make thought of him too sweet and deep for utterance. He was a true mother's boy, and if he had lived would have learned to respect you as truly as he loved you. The spring opened joyfully for him.... The autumn is here and he is not with us. He has fallen, as fall now the leaves from the trees. They will rise and blossom again - so lives and flourishes his loved spirit, in milder skies, under teachers more capable to develop his remarkable character. He was welcomed there by those who know him and loved him. If this beautiful faith could be realized, how easily could you wipe away the tears from your eyes; the sad thoughts from your mind.

Your truly sympathizing sister, Hannah.

This little Fred sounds a lot like Phillip, from the "little manly traits" to his affection for his mother. Although it was written 165 years ago, I feel like this letter could have been written for me, and sent through the years to comfort me. And in small ways it does comfort me, just knowing I am not alone.

So now what?

Dear Phillip;

Your birthday has passed. My birthday passed a couple of weeks before that. Both days were so profoundly empty without you. As naturally happens when we pass the benchmark of another year I look back at my life, and look forward at what is coming, and I wonder "Now what?"

I spent exactly half of my life so far being your mother. Looking back I realize that even before the day you were born you became the focus of my life, and everything I did from the day I found out I was pregnant with you until now was centered around you. In your earliest months I was your sole source of sustenance. But even when you were able to feed yourself my focus remained your health and well-being, and then as you grew it became your preparedness to move out into and succeed in this world. Helping you achieve what you achieved, in spite of the constraints that Friedreich's Ataxia placed on you, was the primary (and perhaps crowning) achievement of the past 27 years - of the second half of my life so far.

But now what? If I live to be 80 I will have spent 1/3 of my life before you were born, and 1/3 of my life being your mother. I still have 1/3 left. You and I filled a whole life into these 27 years. What could I possibly do with the next third that would be anywhere near as important, worthwhile, or satisfying as this past third?

I am going to help Jaime finish your book, and I am going to help FARA find the cure for Friedreich's Ataxia. You wanted to accomplish both those things. So my life will continue to be somewhat Phillip-centered for awhile longer.

I could leave this world tomorrow and feel like I had lived a life-full, because you did. But I likely have this next third, and it would be a shame to let it slip by. It's exciting to be looking at a blank slate and know that I can write on it whatever I want. But whatever I choose will never be as meaningful as these 27 years I spent sharing my life with you.

Your Birth Day

Dear, Dear Phillip;

27 years ago you came into my life ... and lit up the world. You were the most wonderful gift. You not only made me a mother - you made me a much better person.

I have spent all of today re-living that wonderful day when you came into this world - a month early and upside down. I remember the first time I held you in my arms; the first time I nursed you.

I wish I were at home today. I want to be able to pull out your baby book and photographs and re-live that day. I want to be able to go through the cedar chest and hold your Christening clothes and first shoes, and remember the time when all was hope and optimism for your future.

In many ways the beginning and end of your life were so similar; you needed me so profoundly. As an infant you were so hungry and needed to nurse every 90 minutes. The last few years you become so dependent on me for your very sustenance, and it felt like you were metaphorically back at the breast.

In both cases it was exhausting, but I know I gave you everything you needed at the beginning of your life, and all I can hope is that I also gave you what you needed at the end of your life.

I miss you more than I can describe. Happy Birthday my wonderful son.

Mom

Your 'other' wheels.

Dear Phillip;

Your van has a new home. I gave it to a family in Elk Grove who has a 21-year-old son with ataxia. I hope it gives Geoffrey the freedom it gave you all those years.

11 years.

For 11 years the spare key lived in the front hall so that anybody who came by could take you out in it. I would sometimes come home and find the van gone, and know that you were out somewhere with someone. Those were the days.

As I got it ready for it's new family I found so many memories of you. 3D glasses from movies. Parking stubs from hockey games. Receipts from coffee shops or restaurants. Programs from golf tournaments and fundraisers. Pages and pages of Google directions to the places you went. It was like a trip down memory lane. I know that sometimes your friends didn't drive the van carefully :) And sometimes they got lost. And at least once you drank too much and threw up in it! But it always managed to bring you home safely.

Seeing the driveway empty of it reminds me that the house is empty of you, and that is so hard. But I'm glad it is off having new adventures with a new ataxian. I hope it accumulates as many memories for him as it did for you.

I miss you, but I have to trust that you are so much freer than the van ever made you.

Love Mom

Right Here Waiting

Dear Phillip;

Did you have any idea what you were doing the day you asked me to download "Right Here Waiting"? It was just a few days before you got sick. I came home from work and the first thing you asked me was to go to iTunes and download this song you heard on the radio. It's the only song you ever asked me to download, and I don't know if you listened to it after that. But a couple weeks later, when I was going through your laptop looking for things for your service, I came across the file and played it. It was as if you left it there for me. I cried and cried. It was the music we used at the end of your service behind the slide show.

I play it all the time now. It always makes me cry but I need to hear it. I need to know you are there waiting for me, and that I'll be able to hug you and kiss you again.

Thank you for leaving me that gift.

I love you.

Time

"Time heals all wounds" they say, but time is not my friend. On Tuesday night it will be 11 weeks since you died.

The inexorable march of time pulls me, unwillingly, away from you. As I tear each day's page from my desk calendar it reminds me that every day that passes takes me farther away from when I last held you in my arms. I have to reach another day further back in time to remember your smile, your laugh, your sarcasm, your wit.

I don't want to move into the future - the future doesn't have you in it.

Today...

How dare the days grow longer?

How dare the sun call me to rouse with such brightness and persistence so early each day?

How dare the world fill with the colors, smells and sounds of new life?

The flowers call to me, but I don't want to see how beautiful they are.

The fragrance of Easter Lilies is a balm, but the fragrance of a rose speaks of summer, and love, and celebrations; all things anathema to me.

How offensively perky my capris and t-shirts seem, when I would rather be wrapped in the comfort of a cocoon of cashmere.

Even the candle, lit each morning by your picture, seems out of place in the newfound warmth of each day.

Doesn't the world KNOW it should stop?

Don't the birds KNOW they should stay mute?

Don't the flowers KNOW they should wither and fall?

How can it possibly be summer, when my soul is in the depth of winter?

… and no spring is in sight.