Clouds, May 2010

Clouds, May 2010

Monday, April 15, 2013

april 15, 2013

I will remember today.

If you had asked me when I woke this morning, why this day has any significance, I certainly would not have said anything about the deadline for filing taxes.

Because for starters, on a much more pleasant note, my parents are on vacation & celebrating their 40th wedding anniversary today. This is a milestone that might be rare by the time I reach their age, but I enjoyed sharing an old picture of them on facebook today:

Dozens of people clicked "Like"-- both friends & family-- just a nod to wish them well.

It was sweet, but at the same time I have a heavy heart today. It was only one week ago when two of my childhood friends (they are brother & sister) lost their mom.

I had just finished up from my Dr appointment to get my ear checked (if you follow my blog you know why), when shortly after I received the devastating news.

The eulogies which my friend, her brother, & her father gave were among the most beautiful & the most profound I have ever heard.  They spoke of my friend's newborn daughter, the granddaughter which her mom did not have a chance to hold (although thanks to the miracle of modern technology they "met" through skpe). And the words of their father... the words in his love letter to his wife... how she was his heaven on earth.

I was so moved, that the very next morning I sent my dear friend an email (even though I would see her again that very same day). I just figured whenever she sees it, it's fine, but I wanted to let her know that if ever so much beauty could come out of such an awful circumstance... that is exactly what happened the day her mom was laid to rest.

In the email I wrote "every woman on this earth should be so lucky to be loved so deeply, not only by a devoted husband but by such adoring children... & to exit this world so peacefully... as if she orchestrated the timing, so as to not depart until the birth of another beautiful soul emerged... a baby that would not only keep everyone unified, but sustain life in everyone's hearts & minds. Literally & poetically symbolizing a new beginning, right at the time of Spring."


This afternoon when I returned home from work, but shortly before Hayden got home from school, I took a walk down to our mailbox. It's located down our street at the bottom of the hill, alongside several other neighbor's mailboxes. It's a short walk but a steep one. I was eating an apple along the way & enjoying the mild, sunny weather.

I had no idea that simultaneously, there was breaking news all over the major networks about two bombs going off near the finish line of the Boston marathon.

So if I may freeze that thought for a second & put it aside...

As I approached our mailbox I did remember that something I have been really, really looking forward to... waiting & waiting for since last year... was finally due to arrive between today & Wednesday.

I was suddenly a bit more anxious to see what was inside. There it was... a cardboard envelope with the Amazon logo printed along the trim. I shoved my half-eaten apple in between the rest of the mail, tucked it under my arm, & began to open the sturdy envelope.

Yes, this is what was inside. It's a documentary we were fortunate enough to see a screening of, at the 13th International Fragile X Conference last July, in Miami, Florida.

The film is about three siblings... two of them trying to fulfill their brother's dream to meet his hero: Lars Ulrich of Metallica. Their brother's name is Tom Spicer & he has Fragile X Syndrome.

I am beyond grateful that Tom's brother & sister, William & Kate (oh gosh, that's the first time I noticed that), actually pursued this & also filmed their journey. There is so much I want to say about it, that I barely know where to begin. Too much, really, so I will just summarize by saying that the bonus features are just as worthy of watching as the documentary itself.

At the Conference, these bonus features were of course not part of the screening so I was particularly anxious to see them. But every little thing about this entire film is phenomenal. From the Sunday Times interview with Tom, from May of 2012... to the deleted scenes... & a special January 2013 interview... plus everything in between.

And the subtle similarities, so subtle, within things that Tom does or says which make me think of Hayden. For example, how he calls the road trip with his brother & sister "boring". When he's having eggs for breakfast. How he's automatically settled when he has a job... a purpose. Sometimes the way Tom answers questions also reminds me of Hayden. Or when he is being funny, & when he is not.

I think I was most impressed with the way Tom handles himself in situations which I'm certain would have caused Hayden to spiral. Even the scene when they don't have enough quarters for laundry-- especially while his sister had to go off to the Metallica concert without him.

I may have been most excited over the appearances by the infamous Drs. Paul & Randi Hagerman. Their cameos give me goosebumps. I can too easily recall the mountains of anxiety when we had our trip to the MIND Institute a couple of years ago. But also the incredible, yet too brief, meeting we had with Dr. Hagerman on our final day there. I think of when we saw her last year at the conference in Miami, & how I wish I could take her home with us.

The level of awareness this film raises... & what this means for the community of people affected by fragile x syndrome... when I think of these things I am simply in awe.

This has not yet released in America (the Spicer family is from England), but I attempted to pre-order it via even though I had no idea if it would go through.

But when I actually got a confirmation email right near the beginning of April, stating that my order had dispatched, I thought it would somehow never arrive. Or it would arrive but it would never play... or something... because of the format. I had no idea.

Interestingly, the first thing I tried to view it on was our old DVD player in the family room. It would not even read the disc. With my heart beating very fast I anxiously tried to view the disc on my computer & nearly quivered from relief when it worked. Then for the sake of comparison, I also tried it on a newer DVD player in the other room... it was able to be viewed on there, too.

I was so so SO anxious to make some noise about this via social media... send a mass email to all of our family & friends... etc. I started the chain of communication by sharing the above pic on facebook.

It was also then that I realized what was happening in Boston. So yes, I will remember today.

My heart goes out to every single resident, & visitor, in the entire city.

And when the time is right, I hope one day others have the opportunity to experience this journey to Lars.

It just might be the encouragement we all need in this world.



  1. Replies
    1. THANK YOU.
      I plan to make sure that everyone I know, knows about this... gets a copy... watches it... and shares it.