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?