I only just found out, and I don’t know any details. All I know is that his heart stopped and it isn’t going to start back up again.
Sean liked music. Carole, the woman who so lovingly cared for him over the last 25 years, made him a tape of his favorite music box—a Paderewski number that will forever be stuck in my head—so that it could play continuously, flipping itself over at the end of the reel to provide comfort for my brother throughout the night. The tape, on which you can even hear Carole re-winding the box to prolong its music, lasted long after the music box finally kicked, and then when even it started to fade we made copies, and then later copies of the copies. If anything was the soundtrack of Sean’s life, it was that song.
I’d like to say that he lived a long, happy one, but that’s not really true. His life was cut short the day he was born, the day a doctor made a series of unfortunate decisions that would alter the course of everything that would ever happen to him. His health complications never quieted; his life was one full of unfair but tenacious battles against his own body. The last time I saw him, he had just had a tracheotomy and was breathing through a respirator in a Queens nursing home. But even then, he was smiling.
It’s so hard to write this. It’s hard to eulogize someone who couldn’t talk, couldn’t see, couldn’t walk, couldn’t eat food through his mouth, couldn’t understand what was happening to him. Little things make a huge difference when the big things aren’t there; he loved strange noises and loud toys and bells and Paderewski music boxes. He was blind but could see bright, flashing lights, so he enjoyed disco balls and light bulbs and things like that. I once promised I’d knit him a pair of merino mittens to keep his little hands warm on his walks in his wheelchair; I never followed through and I’ll probably always regret it.
His favorite activity was “kicking.” It wouldn’t take much—a familiar voice, a wind of the music box, Carole shaking a bell—and Sean would crack a smile, stretch out his arms and start kicking his legs. It meant he was happy.
I don’t know how happy he was living in that strange nursing home on a ventilator, in and out of the hospital every other week, and I can only hope that he has moved on to a more comfortable place. One with bright lights and a Paderewski music box on around-the-clock streaming audio. One where good health isn’t something he has to fight for.
This feels odd. I have an overwhelming sense of sadness, but this isn’t the pain I felt when I lost my father. I wasn’t close to Sean like I am other members of my family—he had a very severe case of cerebral palsy and wasn’t capable of that kind of relationship—but he is my older brother and it hurts. I will miss you, Seany Bear.
26 responses so far ↓
1 bob montello // Jun 28, 2006 at 6:42 pm
Laura,
I just read about Seany and really don’t know what to say….I do hope that he is in a better place and I will definitely make sure that he is in my prayers…as a matter of fact, I will definitely make a special trip tomorrow and light a candle for him in church…I remember that song and the bells loud and clear…please tell Carol that I said hello and that I commend her for the great job she did with Sean and the love she showed him…
Love, Bob
2 TimsHead // Jun 28, 2006 at 7:53 pm
So sorry, Laura! I remember you talking about him and all he went through. We can only hope he is at peace now.
^ I know all that is lame phrasing we speak in times like this, like automatons reacting to some kind of stimulus, but please know I send you all the best.
3 brooke // Jun 28, 2006 at 8:19 pm
I’m really sorry to hear about your brother. I wish I had something to say that would bring some comfort, but please know that that is my prayer for you and your family.
4 Corbow // Jun 28, 2006 at 9:32 pm
I’m so sorry!
My youngest sister-in-law, during my first marriage, had CP. She wasn’t as badly disabled as Sean, but we knew she would never live on her own. She died at 19.
5 Boo // Jun 29, 2006 at 1:08 am
You have my sympathy and my thoughts. Be well.
6 Boo // Jun 29, 2006 at 1:11 am
You have my sympathy and my thoughts. Be well.
7 inavacuum // Jun 29, 2006 at 2:51 am
I don’t know what to say other than I’m sorry to hear about your brother. My heartfelt condolences to you and your family.
8 Bev // Jun 29, 2006 at 4:48 am
Oh Laura, so eloquent at such a sad time. I’m sending you a big hug from NYC. xxx
9 Jaki O // Jun 29, 2006 at 4:57 am
Laura, I am SO sorry to hear about your brother. My sympathies to you and your family.
10 Jennifer O'Neill // Jun 29, 2006 at 6:16 am
Laura,
What a beautiful tribute to your brother. I am so sorry for your loss.
- Jen
11 Andra Georges // Jun 29, 2006 at 8:43 am
Laura,
It must be hard for you and your family to feel you loved him enough or grieve for him enough, when it was so difficult for him to show who he was or how much he cared for you. I know you all learned from him though, and you’ll miss him. If he could have understood, I’m sure he would have loved your rembrance of him.
12 Emily // Jun 29, 2006 at 9:21 am
I wish I knew what to say, but at times like this, I’m at a loss for words. I’m very sorry to hear about your loss…My thoughts are with you and your family.
13 tektoo2 // Jun 29, 2006 at 9:36 am
Laura,
My deepest condolences to you and your family. I am so sorry for your loss…
Ted
14 Joe Panasci // Jun 29, 2006 at 9:58 am
Laura,
You really have written a moving homage to your brother. I regret that this is the reason that motivated my writing to you but I had to tell you how very sorry I am for your loss. I have to believe that, on whatever level he could, Sean appreciated and treasured the love and care he received from you and your family. With my deepest sympathy and support, you are all in my thoughts.
- Joe
15 Paul // Jun 29, 2006 at 6:03 pm
A very moving and loving tribute. I don’t have your number, Aunt Barbara was the numbers lady, or I would have called you. I spoke with your Mom today and expressed my condolences to her as I am now to you.
Will see you at Sean’s momorial, my thoughts are with you.
Paul
16 RodLamour // Jun 29, 2006 at 7:44 pm
It is nothing less than I would expect from you my dear ,It is a wonderful salute to his life ,honest ,bitter sweet and with deep love. As always I am most proud of you.
Love Un Joe
17 sue caputo // Jun 30, 2006 at 2:08 pm
Dear Laura;
As always you have the most beautiful words to express the life of Sean and the emptiness you feel with his loss. I am so very sorry for you, Kieran and Mom. I will keep you all in my thoughts and prayers.
18 Rachel // Jun 30, 2006 at 9:28 pm
Wow. I stumbled on this xanga sort of by accident by a click of a button and it brought me to a list of xangas to look at. I just clicked on it cause I thought your title to your xanga was interesting. Anyway, what a moving story. At first, I didnt think it was true. And now I realize it is. Beautifully written. Sorry for your lost. He went to Heaven. So I know he has to be “running” right now instead of being bound to a wheel chair. To him it would feel like freedom….finally…. freedom.
19 Gabriel // Jul 1, 2006 at 12:56 am
Laura, deepest condolences to you and your family - sending heart thoughts and prayers.
20 thinlizzy // Jul 1, 2006 at 6:24 am
I’m so sorry to hear about your brother.
21 Ernay // Jul 1, 2006 at 6:34 am
I was taking a 5-minute brain-break, looking for some levity, when I came across your post. My condolences to you, EK, and Kieran…I can’t imagine how you must feel. If it’s any consolation, your comments show how much he meant to you, and nearly moved me to tears.
22 jasmine624 // Jul 1, 2006 at 4:39 pm
Beautifully written words. Not sure what more to say. Hope and pray there’s peace in your heart. *hugs*
23 TimsHead // Jul 4, 2006 at 8:53 am
ryc: If you look at the comparative pages, you’ll see I didn’t just edit the page as much as I wrote a new piece of about 450 words, which included research and the usual’s anal-retentive writers revisions and rerevisions. Which is hectic. I’m so dorky.
Anyway, hope all is well with you and the family.
24 TimsHead // Jul 4, 2006 at 8:54 am
Oy. That should be writer’s revisions. See how anal-retentive I am?
All the best.
25 Kaz // Jul 6, 2006 at 8:33 am
Hey! Hugs to you. I’m so sorry for your loss.
And I’m sorry I’ve been neglecting your writing lately, been so BIZZZZZY.
Take care.
Kaz
26 Jeanine (Coccinella) // Jul 6, 2006 at 9:10 am
Hi there,
I’m so sorry to hear this. If you ever need anything xanga will always be here for you. Me, too. It takes time of cours, but I hope you heal soon.
Hugs,
Jeanine