The Weekend

It's been more than a week since I last posted, so I figured I should come in just to say hello.

There's nothing new here. Well, Brady developed a rather nasty cold a few days ago, which he so kindly shared with both me and Adam. The end result? Adam went to bed 10 minutes ago. It's 8 PM on a Saturday night. We're livin' the high life.

I'm just floating along, I guess. Logan departed this life seven weeks ago. Sometimes I think 'wow, has it been that long already?' At other times, I feel like I'm starting to forget the little nuances that made him my sunshine, and I get scared. If we're only seven weeks out and I'm already forgetting the details, will I remember him at all a year from now? Five years from now? Twenty? We have pictures and videos and all of the things that we need to make sure Brady will grow up 'knowing' his biggest brother, but I'm not going to kid myself into believing that it's the same.

I've found myself getting angry with platitude pushers lately. You know --the ones who say things like 'God's ways are mysterious and not ours to know or understand' blah blah. It's all fine and good to say those things, but when it's YOU who's been burned; when it's YOU whose child has suffered the unspeakable... it's different. So yeah. If you ever find yourself personally knowing someone who's lost a child, please don't tell them 'it was God's will'. Please, please. I'll say what I've said 100 times and believe to be true: The God of the Bible desires good for us. What happened to Logan was NOT GOOD. So it wasn't from God. It's a fallen world. Things don't always go as planned. Not even as God Himself planned.

But with that said, I'm waiting for redemption. I'm waiting for the promise that God made that says that He'll turn bad into good to come to fruition. And I'm not just talking about the next life. I'm talking about THIS life. I won't lie: My life isn't fun right now. I have moments of peace and pricklings of happiness now and then, but the underlying sensation is pure, searing pain. It feels, emotionally, like I've been cut open and had salt poured over the wound. It feels like salt is just caked on the wound. And like it'll never be rinsed clean again. Maybe it won't. Right now, I don't know.

I've also been a little frustrated by my inability to see any signs. I've been looking; I guess perhaps I've been looking too hard. I had a single day this past week that felt more hopeful than the others. I was at Walmart (and I swear I'm not there often, even if I seem to talk about it a lot here) helping Isaac pick out birthday presents for his friends at preschool. He, of course, made a beeline for the 'car' (or, in more accurate Isaac-speak, the monster truck) aisle. As I turned the cart to follow him, my eye spied a tiny light blue Corvette Hot Wheels car on a peg. I snatched it up. We walked around the corner, and I saw another Corvette -- a blue and white Stingray with Easter 2012 decals. That one also jumped into the cart. Finally, when we circled around to where we'd started, I saw another blue and white Corvette. It joined its buddies in the cart. It was strange to see SO MANY little blue Corvettes at once. We stopped once more to check out the bin, and my eye again settled on that familiar body style... it was the same blue City of Lafayette Corvette I'd gotten for Adam for his birthday a few weeks ago. I like to think that it means something. But I can talk myself out of lots of things these days.

Anyway, that's a rough, poorly worded update from my house to yours. We're here. We're trying to find out what 'normal' means. I'm trying to not go completely ballistic on people who complain about trivial things, because we're all allowed to complain about things that don't matter. I know I have in the past. So I guess you could say that I'm spending plenty of time stewing in my own little personal pot.

And I'm waiting for... something.

The Littlest Things

I'm guessing that eventually, I'll stop counting the days as they pass by. But for now, I count. And today is the six week marker.

Lately, I've spent a lot of time looking for Logan. I guess that sounds a little bit crazy, but I'm a mom. A stay-at-home mom. Part of my full-time job is to make sure I know where my kids are 24/7. It eats away at me that I can't just look up and see Logan anymore. So I've asked God --repeatedly-- to 'show' me that Logan still 'is'. And that he's happy and okay; better than okay, really. I don't expect to see him, per se, but I hope for signs. Just little things that will serve to show me, on a daily basis, that even though I can't hold him, hug him, see him smile or watch him dance, I will indeed be able to do all of those things again some day. One Sweet Day.

So for now, my plan is to build a library of sorts comprised of those littlest things that come my way.

Otherwise, I think I'm feeling better since my last entry. I have ups and downs. Dramatic ones. I wonder, at times, if I'll ever feel a sense of uninhibited happiness ever again during this life. It's really not a new concept for me; I've suffered from ups and downs throughout the course of my lifetime. Ironically, the last time I experienced a serious down, it was Logan who pulled me out of it. He was a toddler and just the sweetest little thing; how could I possible stay down with someone so wonderful in my life? Sometimes the irony of the whole thing just... gets me.

It's completely cliche and true to psychology books, but sometimes I'll be feeling just fine and then something stupid and trivial will make me absolutely dissolve into tears. It could be frustration over a non-productive conversation with a friend. It could be a weather forecast. It could be a song on the radio. There's a new one from Lady Antebellum that I keep hearing on the radio that's made me both cry and laugh in recent weeks. It's called Dancing Away With My Heart and is about a last dance shared by a couple of high schoolers; in my mind, I manipulate the chorus a little so it sounds a little like this....

I haven't seen you in ages
Sometimes I find myself wondering where you are
For me you'll always be five... and beautiful
And dancing away with my heart

It totally changes the intended meaning of the song, but I think part of the purpose of music is to feel it; to make it relevant to life as it's lived.

In every day life, we're about to embark on a week-long barrage of birthday parties. Isaac is invited to a whopping three parties this week. It'll be fun. I love watching him enjoy himself, even if my heart isn't completely into the concept of celebrating birthdays right now.

Anyway, that's where I am. For now.

37 Days

It's been 37 days now since Logan entered into the Kingdom of Heaven. I'd like to say that I'm some variation of "good" but that would be a lie. I'm nothing of the sort.

You'll have to forgive me, because I can feel this entry bubbling up from deep within, and it may be ugly. Unpleasant. Ranting. But I need to get it out.

You know what hurts me more than anything? What drives a dagger into my heart like nothing else? The most horrible thing anyone can say to me? "It was all God's will." I'll go to my own grave knowing that what happened to my sweet boy wasn't God's will. It infuriates me that so many good Christian people would ever even entertain the notion that a horror like the one we suffered was 'God's will'. That's crap. Pure, 100%, bona fide crap. I know why people say it. It's a platitude. It's supposed to somehow put a band aid on a gaping, festering wound. It's a pat response designed to make it all okay.

But it's a LIE and it doesn't help at all. As I've said numerous times in the past, evil runs rampant in this corrupt world. Things don't happen as God planned them to happen. No. God doesn't will for young girls to be raped at knife point, for people to die in horrific accidents, for teens to be bullied to the point of turning to suicide. To say 'it was God's will' is an insult to God. With Christians making such claims, it's no surprise that so many people turn away from God. How are we supposed to seek solace in a God who wills such horrible things? What's the point of faith or prayer or hope? No, that statement is a falsehood.

What's TRUE is that God brings unimaginable good out of horrible circumstances. I'm still chewing on this. I'm wondering what kind of good is in store for us, what kind of great thing will come out of my sometimes-unbearable heartache.

So far, I've seen one glimmer. A friend of a friend is a jewelry designer. She'd been working with a mom who's creating care packages for moms who lose babies, trying to come up with a design for a pendant that could be used in said packages. She read my tribute to Logan, and found her muse in the words and actions of one of Logan's doctors. Although not initially intended to be a permanent piece of her collection, the piece drew plenty of interest, and she's added it to her website under a new section called 'In Remembrance'. Best of all, net proceeds from the sale of the necklace will go to the Cure ATRT Fund at Dana Farber. It won't bring Logan back to us, but it warms my icy heart to know that more money will make its way to a fund dedicated to eradicating that horrific disease. You can see the piece she created by clicking here.

What else. I don't know. There are a lot of things I'd like to say, but I tend to zip my lips because I don't want to offend. I guess I could lightly gloss over a subject I fear treading with a simple remark: If someone invites anyone and everyone to a memorial service, please attend if you're able. It means a lot to feel supported. It means everything in those first few weeks, actually. When people don't show... it's painful. I won't say anything else on the subject. Just know that there were no engraved invitations sent out. I spread the word as best I could. Everyone was invited. And I hoped anyone available would attend. It was a beautiful, wonderful day, but there were people missing who could've been there and I felt it.

I guess that's it. I have nothing pretty or inspirational to say. I've gotten to a place where people don't contact me anymore to say hi. I know I'm not asking; I can't. I wouldn't know what to ask *for*. I'm not in a great place and I'd like nothing better than to just stay in bed all day so I don't have to see the happy families out and about or listen to the moms berating their 5-year old boys for silly infractions of some unstated behavioral code. But I know I can't do that. Life marches on, even if I don't feel like being in the the parade.

Because You Loved Me

In the days leading up to Logan's departure from this life, a certain song would play itself in my head every time I went into his little room in the PICU. I don't believe I was pressing a play button on my own, because the lyrics wouldn't have made sense coming from me. No, they only made sense coming from Logan. And now, a little more than a month removed from that longest day, I think I finally feel ready to talk about those words I kept hearing. And their implications for this life --and what lies beyond.

I started hearing the song in question probably a week or so before he passed on. I'd enter his room, stand over him, and then they'd begin playing. And they'd continue playing for some time in a loop fashion, typically repeating the same lines several times before eventually coming to a stop, usually while I read him a story or quoted Bible verses.

You were my strength when I was weak
You were my voice when I couldn't speak
You were my eyes when I couldn't see
You saw the best there was in me
Lifted me up when I couldn't reach
You gave me faith cuz you believed
I'm everything I am because you loved me.

I know that when Celine Dion croons those words, she means them in a figurative fashion. But for Logan, they were very literal. When he passed, he couldn't speak, see or walk.

It's as if his heart somehow managed to find a way to sing the words directly into mine. It's the only way I can explain repeatedly hearing those words in my head and my soul during that last week. It's as if he said what he needed to say without uttering a word.

Although I didn't want to see it at the time, I think he was saying 'see you later' the only way he was able. And though my heart deeply grieves his absence, I'm glad that he was allowed to sing me that song.

The Video Tribute

I'm just stopping in for a moment to drop off the link to the tribute video that Adam put together (with a very small assist from me; I did a few swatches of voiceover, but otherwise it was all him). It was played during his Celebration of Life service and we'll treasure it heading into the future.

Logan's Video

A Beautiful Day

I've been trying to formulate this entry in my head all day long. But that's really the thought that keeps coming to me. Nothing elaborate or fancy or overstated. Just it was a beautiful day.

Because it was just that. Beautiful. It was sunny and the sky was completely cloudless and a vibrant, stunning shade of blue. And the air was warm. I'd worried about freezing in my sleeveless dress, but the sunlight --and about 200 hugs-- provided all the warmth I needed.

I went out last night with two of my best friends in the world; one flew up from Los Angeles and the other lives nearby, though we don't see one another nearly often enough given her proximity. We started off at Starbucks, but it was overrun with noisy, boisterous teens so we headed over to the cafe in a nearby bookstore instead. We just sat there for a few hours (until they kicked us out, actually) laughing and talking and sipping tea (them) and coffee (me). I love those girls. And I miss them. And it was so restorative to see them again. We live in the present, all of us, but it's special to be able to visit the past now and again, back when things weren't quite so complicated.

Then today, I got up and put on the dress I bought for Logan's celebration a few weeks ago -- a blue floral sleeveless number. I could almost hear an echo in my head as I looked at myself in the mirror. It was Logan's voice, chirping you look beautiful, mommy just as he did many times in the past. I could almost see him standing outside my closet, his blue eyes staring up at me in what can only be termed adoration and the corners of his lips turned up to form a smile. I miss all of that. I miss hearing him tell me I look beautiful. It never really mattered what I was wearing or if I'd brushed my hair or if I'd put on make-up. He always took the time to say I looked pretty. And today was no different, if only in my mind.

The service went off without a hitch and was lovely. As soon as we have it uploaded, I'll post the video tribute Adam made (with a little help from me) to YouTube so anyone who wasn't able to attend can view it. Our pastor handled the day perfectly, and the songs and scriptures chosen were a hit. Isaac even got in on the action, joining Sarah and Megan on stage to demonstrate the hand motions to 'Deep and Wide'. I decided, at the last second, to say a few words to the crowd. I didn't have anything planned, so I spoke what was in my heart. And I hope I conveyed the depth of my gratitude to those present. If I'm honest about it, as I looked out at the sea of roughly 300 faces watching me, I noticed how grim most of them seemed and my first inclination was to say 'cheer up, y'all. This is a party!' But of course I didn't do that.

I think my real moment of shock came when I realized that Pastor Mike had used my own words as the Message, so to speak. I only have vague memories of the conversation, but he shared that shortly after Logan passed, I got a phone call from my brother. He said that at one point during said call, I uttered six words: He's alive. He's just not here. I think I said the words and then didn't think much about it, but now, as I reflect and remember and ponder, I realize that there is indeed great power in those words. And I'm glad that I said them, even if they didn't really sink in at the time. Because that's what I believe. I don't understand why some kids recover and others don't. I don't understand why Logan didn't get better and come home to grow up with us. But what really matters is that he's alive in a new and amazing way. (See? I told you you'd see amazing things if you stuck with me.) And that his legacy in this world will live on, in the form of people having fun with their kids, appreciating their families in a newer and deeper way, and taking the time to enjoy things like sunny days, dancing and silliness. Given how broken this world is, I can't ask for more than that, can I?

Post-service, we headed outside to the courtyard area for lasagna, spaghetti and meatballs, Costco cheese pizza, salad, blueberries and snap peas. And of course, chocolate cake with chocolate frosting! My heartfelt thanks goes out to everyone who brought a cake. They were absolutely amazing. I didn't manage to get photos of all of them, so if you brought one and took a photo of it but haven't yet posted it to my Facebook wall or emailed me (slwight@gmail.com), I'd love a copy of the image file. I tried to talk to as many people as I could, and wow, there were lots of people to talk with. I wish I could've spoken with everyone there. I was disappointed to miss Philippa and Dr. T, who were there but left early, but was very pleased to see Molly, the hem/onc NP. Logan loved her very much and we were so glad that she made it. If you were there and I missed you, my apologies are with you. I was sad to miss the CHO folks because we don't have a reason to see them again, and they were very important people to us for 18 months. I'd been looking forward to hugging them, and telling them in person how very much we appreciated everything they did, even though things didn't go as we'd prayed they'd go.

Anyway, it was incredible to see so many people from so many stations in our lives, and we were extremely gratified to have a large number of children show up. The Cars-themed bounce house and playground were big hits, and I think everyone had a good time.

I did. It's funny. I don't know how I thought I'd feel, but I felt absolutely surrounded with love and care. And I felt that somehow, Logan was there with us.

This entry has dragged on far longer than I'd planned when I started typing an hour ago. But I have an anecdote from today that I'd like to share before I go. As the party was winding down, Megan, a high school student and great friend of Logan's and our family as a whole, came up to me. She asked if I'd heard about 'the uniforms', and I was stymied. There's a high school next door to the church where the celebration was held. There was a ball game going on, and the visiting team was from James Logan High School. I smiled for a second, thinking about the irony, but there was more. She went on to say that usually, their jerseys say 'James Logan'. But not today. Today, they simply read 'Logan'. She went over to ask if they'd gotten new jerseys, and the person she spoke with said 'no, we're just trying these out today'. Just today. Pretty cool, huh? I thought so. A God-wink.

Anyway, I'm tired, and though I have nightowl inclinations and I have much more I could write about, there's much for me to process, so I'm off to bed. Blessings to you.

Close to Our Hearts

I've had several people ask me where we'd like charitable donations in Logan's memory to be directed. Of course, you can feel free to contribute to whatever child-related cause that's near to your own heart, but this is the one that's closest to ours right now.

The kind of cancer that afflicted our sweet boy, AT/RT, or Atypical Teratoid Rhabdoid Tumor, is incredibly rare. It may be a small exaggeration, but I think you're more likely to be struck by lightning twice than to develop this kind of disease.

Since it's so unusual, it stands to reason that there isn't much funding available for research. This means that kids like Logan suffer through a brutal treatment protocol that only works in roughly 40 percent of cases, and almost always leaves the child with lifelong resulting disabilities, including profound hearing loss, stunted growth, a damaged adrenal system, and so on.

With all of that said, we'd be honored if anyone interested in making a donation in Logan's memory would contribute to the following research fund:

'Cure ATRT Now'

Dana-Farber Cancer Institute
Pediatric Brain Tumor Program
450 Brookline Ave. SW331
Boston, MA 02215

Checks should be made out to 'Cure ATRT Now'.

Thank you for your support and prayers.