Windows

I liked this post I read on a blog I frequent. It is so honest.

"Give me a Break"
http://sixldswriters.blogspot.com/2010/02/give-me-break.html

And I LOVE this comment that followed by "broken":

"And like you mentioned so aptly, there is beauty to be found in the shards of broken lives and even dreams. The Lord is picking up our scattered pieces every day, placing each one delicately into a brilliant stained glass version of ourselves, perfectly suited to the warm touch of a smiling sun.

Stained glass is stunning, even though the glass itself may never come to that realization. But those of us looking on thank you for the beauty we see through you.

We are all windows, transmitting ever more brightly the passing light. And as our broken pieces are lifted up into a better frame, the glass becomes a more beautiful mirror of our perfect selves, waiting for us just on the horizon.

So broken is a miracle in progress."

So beautiful and poignant. I would like to put a stained glass window in my house somewhere to remind me of it. Maybe there's my miracle??? Its me. The fact that I am broken, but still alive and breathing and sometimes happy. That is indeed a miracle.

zing

A few months ago I finally got my "zinger" comment, and it decreased my desire to share my feelings here like I used to. It stirred up thought patterns and feelings I had long ago worked through, and it took months to get anywhere near the progress I had previously made. Its still shocking to me how one, single, judgmental comment can utterly destroy you when you are grieving. I still tried to write often, but didn't end up publishing a lot. I would be so stressed out and frustrated, trying to make it censored and unoffensive, and "okay".  And finally I'd just forget it because I was too afraid of being judged, misunderstood, or criticized.

It added a layer of difficulty to my progress...my writing was, and still is, a source of healing for me. Being able to write down the feelings that plague me, somehow helps to free me from them. I've also gained some great friends and confidants through my writing. It helps to not feel so alone. And one of the tiny, tiny positives of this experience is being able to express the things that others cannot, and helping them to heal, too. However, I finally realized I had been writing for all the wrong reasons, or should I say to all the wrong people?

At first, I started writing to try to help my friends and family understand what I was going through. I thought that if I could somehow make all my senseless thoughts and feelings make sense to everyone else, then it would be easier to accept them myself. If I detailed the grief process and quoted books and proved that this was all normal, then everything would be okay. I would be okay. So whenever it seemed like other people "got it", I felt validated. (If they get it, then I must be normal, I must be "okay"...right???) But then I'd get one of those judgmental "zingers", and I felt like a failure. Like all the things I feared, and everything I thought everyone else thought about me, must be true. (If I can't make them see it, then I must be the problem, there must be something wrong with me...) And all my progress would come crashing down.

This week I discovered how my writing truly helps me, and strangely it wasn't through writing, it was through reading. I was on a friend's online journal reading about the night her daughter died, and some parts of it were so similar to the night Gavin died. It was like stabs of pain into my heart to relive it through her words. But somehow, even through the hurt, I felt an overwhelming gratefulness that she had shared it. I was about to comment, "Thank you for sharing your story..." when I stopped and thought "Why am I thankful when it brought up painful reminders for me?" I eventually realized that through sharing those details, she was allowing me to share her most sacred experience. She was allowing me to connect with her...to share our pain, our loss, our grief. I felt love for her...this woman I've never met, never spoken to face to face. For a moment, I didn't feel quite so alone, and with that came a small amount of peace...and for that I was truly grateful.

I realized this is why I write...not for those curiously peering in from the other side of the looking glass, but for myself and others who are grieving a loss. That's where my real healing comes from. I write to validate our thoughts and feelings through our shared experiences. To create connections. To make friends. To heal together.

It has lifted such a heavy weight from my shoulders. I don't need to prove to anyone else that I am actually doing quite well in processing my grief and that, yes, its "normal". I don't need to make anyone else "get it". Those who love me, will love me whether they "get it" or not. They don't need to know why, they just love me anyway. And if others are judgmental and unkind, its not because I am failing or because I didn't quote enough sources, or because I haven't made the grief process quite clear enough for them. 'Cause, you know, I'm a bit busy grieving over my son, and that's what books are for!

So, going forward I hope my writing will again be a source of relief for me, without all the added stress. I'm writing for me. I'm writing for my angel baby mommy (and daddy) friends...those I already know and love, and those yet to come. And if it happens to help anyone else, then that's just icing on the cake.

Through the Valley of the Shadow...

I've never heard this perspective from someone who actually did get their miracle. It was so refreshing.

Through the Valley of the Shadow...
http://bycommonconsent.com/2008/05/09/through-the-valley-of-the-shadow/

more thoughts on it later...

boxes

I've mentioned 'pretty, shiny boxes with bows on top' on my blog a lot, and usually out of frustration. I don't have anything against them, really. I like pretty, shiny boxes with bows on top. I'm one of those people who likes to have all the Christmas wrappings themed and matching. I love to wrap presents in pretty paper with all the edges creased just so, equal-sized pieces of tape, covered with piles of curly ribbon or huge tulle bows. Perfection. I am good at it, and I like to do it. And when I'm done, I have a beautiful, perfected creation in front of me. Its an art!

This is what I have been trying to do with my life. Wrapping it up in pretty, shiny paper, trying to crease the imperfect edges just so, taping it shut with equal sized pieces of tape, and sticking a huge pile of beautiful curly ribbon on top. And after years and years of trying to do this, I have met my match. Something that was TOO BIG to even consider putting in a pretty box. It is SO FRUSTRATING!!! I don't want to accept that I will never get that pretty, shiny box of my own. I don't want to accept that my life is never going to be the life that I always wanted. The life that so many others still get to live. And now logically, I know I HAVE to. There is no choice. Yet here I am, still fighting, twisting, arguing, debating, pushing, kicking, screaming and digging my heels into the dirt just trying to MAKE IT SO. But danggit, it just won't fit.

So now what?

What do you do when your dream is over before its barely begun? What do you do when your dream turns into a nightmare? God willing, I've only lived 1/3 of my life, and yet I am now faced with the harsh reality that I will never have the life I wanted and dreamed of, no matter what I do, and the rest of it will always leave me wanting more. Its hard to face that reality with optimism and hope.

I know I should be grateful for other things that I have, and I do have some great things in my life. And I get really upset at myself when I start feeling bad, because I know there are others who have it "worse" than me (so not only do I feel awful, but then I feel guilty for feeling awful). But its kinda like getting a coat for Christmas, when everyone else on the block is getting bikes. And not a cute coat either...a bulky, ugly, scratchy, 100% wool, 'practical' coat that I can't return, and I am never, ever, ever allowed to take off. Ya, I suppose a coat is useful, and at least I got something, which is more than what some people get...but danggit, I really wanted that bike!!! And then I have to sit on my porch, wearing my stupid coat, while (seemingly) everyone else rides around on their bikes with big 'ole grins on their faces. Its hard not to be a little upset about it. Its really not very fair. And yet the coat is mine. And the bike is not.

So now what?

I'm not the first, nor will be the last, person to face this problem. Sooner or later, everyone gets knocked off their ladder, and then you'll have to clean out your closet, and try to make sense of everything again, and maybe not try to shove it in a pretty, shiny box with a bow on it (enough metaphors for ya?!)...but somehow learn to accept it for what it is and even, learn to love it and enjoy it, even with all its faults, and imperfect creases, and rips and tears, and no pile of curly ribbon. Just banged up, beat up, scarred for good...life. And accept that, whether you like it or not, its YOUR life, and you're only getting ONE, and somehow, you've got to figure out a way to make peace with it, despite the fact that its not the life you wanted.

While still accepting, that deep down, its normal to still want the bike, and you shouldn't feel guilty about it.

Toys!

We FINALLY found a chance to take all the toys donated for Gavin's birthday to the Cardon Children's Hospital at Banner Desert. First we got to take all the extra money donated and go on a WILD shopping spree! We had $250.00 left over after we paid for the wagon, and that wasn't including the check for $150 that was donated by Boomer the Dog (and his owners!) that went straight to the hospital!!! The kids thought that was pretty cool...but giving all the toys away afterwards was a little hard. ;)

Mindy, the childlife specialist we worked with, had sent us a wish list of the things they could use. The infants and toddlers sometimes get forgotten, so they don't get as much stuff donated for those ages. They can ALWAYS use items like portable dvd players, crib mobiles, white noise machines, bouncy seats, and exersaucers. So we tried to focus more on that age group with the money, since we already had a lot of school aged toys donated.

We bought a portable dvd player, some crib mobiles, a preschool computer game (also requested), a ride-on spinning zebra toy for the playroom, some clip-on crib toys that play music and light up, crinkle books, rattles, those little piano toys that have pop-up animals when you push the keys, a couple preschool aged board games, some ball poppers, teethers, battery-operated bubble blowers, books, and batteries (I bet they go through those pretty fast!). It was SO hard to restrain myself from buying MORE...we actually had to put some other stuff back because we went WAY over budget (we even ended up throwing in $100 of our own, too).

Mindy gave us a little tour after we put the toys and wagon in Andrea's Closet. We saw the Forever Young media room, which was SO COOL...Steve Young's Foundation donated over $1 million for it...it has a stage for celebs/groups to perform on, or the kids can make up their own plays & dances. There is even a video camera to record them! There is also a movie screen that drops down, and two huge screen TVs for movie nights, lots of chairs for the audience and room for crafts. I wish I had taken a picture of it! I can just imagine all the fun plays, dance groups, comedians, singers, etc that will be able to perform there for all the kids.

One FULL trunk!!!

Now one FULL wagon...

...plus 6 FULL bags...

...plus 3 FULL sets of hands!!!

The plaque on Gavin's Wagon, it says "In loving memory of Gavin Sprague"

heading to Andrea's Closet:

there's a giant chess set in the lobby:

and silver butterflies inlaid in the floor:

the ceilings are painted to look like the sky:

the new train area!

One of Gavin's favorite nurses came down to chat with us and get a picture!

I was so happy to be able to donate all those toys in honor of our little man. I talked to Mindy the next day and she said she had already opened tons of the toys for some of the babies who didn't have anyone to stay with them (it seriously breaks my heart to think of those little ones all alone with no one to hold and love them). She said they loved the toys! I can't wait until next year and I'm already thinking of new themes we can do. They are going to be opening a brand new outside play area in the next year, so we'll probably focus on that for Gavin's 3rd birthday!
Mindy said before we left "You have no idea how much this helps!" and I replied "Oh yes...we really do know. We know all too well." So thank you SO MUCH to everyone who donated! It meant so much to our family. I hope seeing all these pictures and knowing that the toys are being enjoyed is making you happy, too! Such small things can make such a HUGE difference to those who are in the hospital. It gives me SO MUCH happiness thinking of their days being a little easier and brighter because of these toys.

weight

I am reading The Unbearable Lightness of Being right now. I almost put it down after the first page because its just SO not the kind of literature I can concentrate on right now. But I pushed onward (besides, it has a really cool title). Then a paragraph in the second chapter stood out to me:

"The heaviest of burdens crushes us, we sink beneath it, it pins us to the ground. The heavier the burden, the closer our lives come to the earth, the more real and truthful they become. Conversely, the absolute absence of burden causes man to be lighter than air, to soar into heights, take leave of the earth and his earthly being, and become only half real, his movements as free as they are insignificant. What then shall we choose? Weight or lightness?"

And I was like, I get it. I totally get it. Its one of the many conflicting battles that rages within me. Sometimes I feel so angry and jealous towards those who still get to reside in beautiful, shiny bubbles...they still get to see the world through rosy-iridescent walls where things make sense and life is good. I use to live in a pretty bubble, too, if only for a short time. And had Gavin lived, I would've been one of those people who get up at Fast & Testimony meeting at church on Sunday and tearfully exclaims, "I know everything is true, and all my prayers are answered, and everything is great, great and HAPPY, and my life is amazing, 'cause I am so blessed, like SERIOUSLY, so blessed." I would never have given a second thought to how soul-crushing those words can be to those whose lives have been reduced to "but if not..."

I would never have known what I know now. I would never have known how black the darkness can be. I would never have known how far down, down can be. I would never have known what abandonment feels like. I would never have known what its like to lose all knowledge, then all faith, and even all hope. I would never pause like I do now, to really, truly look at someone and wonder what hidden wounds they harbor. I would never know what its like to really, truly love someone that I just met, simply because we both know.

But is it worth it? Is it worth it to have your bubble popped, your life absolutely shattered, and your whole soul broken and beaten into the earth? Is it worth it to lose all beauty and hope to understand uglyness and despair? Is it worth it to have that knowledge, that understanding? Because there is no other way to gain that knowledge...it only comes through your own personal suffering. And once your bubble is popped, you can't go back. You can't think, feel, believe all the things you used to before, even when thats all you really want because it would just be so much easier. Things just don't make sense like they used to through those rosy walls. So would you rather live a life where your actions are insignificant, but blissful...lightness? Or would you rather live a "real", raw, painful existence down in the dirt...weight? The Garden of Eden or The Fallen Earth?


I know what I want.


I want to be back in my damn bubble.


At least, most of the time I think I do. But then I am confronted with the unbearable lightness of being in others around me, and I have second thoughts. Am I grateful for this knowledge? I don't really think so...not yet anyway. I'm still wondering why I am apparently destined for lifelong defeat (sorry if that comes across as dramatic, but thats I how I truly feel sometimes). But when I read that paragraph, I thought...maybe there is something in all this.

Maybe there is some hope after all. Maybe someday I'll be grateful for this knowledge. Maybe someday I will say, yes, I would rather be down here in the dirt than up in a bubble. Maybe someday I will notice beauty down here that can't be observed from up there. Maybe someday I will find that in the dirt down here, flowers have bloomed from all the tears I have cried.

Flowers for Gavin

These flowers were planted by a friend of Gavin's liver buddy, Martim, a little boy who also has Alpha-1 and lives in the UK. Martim's mom, Alice, found Gavin's blog last year after Martim was diagnosed, as she was struggling to find answers about this seldom heard of condition. We e-mailed back and forth a bit, and she even has a picture and a link to Gavin's blog on Martim's blog. She is such a caring woman...she has never met us, but she reads here and comments often, and thinks of Gavin as she watches Martim grow.

Their friend, Patricia, found us through that link. She planted some flowers in her garden in honor of Gavin and e-mailed me some pictures. She said "I chose Amores Perfeitos. In English, they are named Pansy Flowers, but I prefer to translate, and call them Perfect Love - like a mother´s love. Perfect." She posted more about it on her blog (its translated in English below the Portuguese!)

Somewhere in Portugal these beautiful flowers are blooming just for my baby boy...

This lovely sunflower bloomed in Susan's garden on Gavin's Angel Day. Her daughter is another one of Gavin's Liver buddies. She said she thought of Gavin when she saw it. I have such great friends from the Liver Families support website! We only knew each other for such a short time, but they all continue to give us so much love and support. It really, really means so much to me. I've had a handful of people e-mail me after finding Gavin's blog when their child was diagnosed with Alpha-1 (like Alice!), and I always refer them to LF for support. They are the best!

My cousin, Kim, and her little boys picked out this plant to put in their apartment to honor Gavin. They recently moved to California so they couldn't attend his birthday party, but they wanted to participate in some way. She said later that day she noticed it was just under their picture of the Temple, so now she is reminded of "Forever Families" every time she looks at it. I am really grateful for our family. They are so good to me.