Sunday, October 18, 2009


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 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.

Monday, October 12, 2009

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.

Wednesday, October 7, 2009

Gavin's 2nd Birthday Party- pics!

{Happy Birthday, my little Baddabink!}

{We had such a fun time at Gavin's Birthday party! Thank you to everyone who celebrated our little boy's life with us!}

{And thanks to those who helped bake cupcakes, and a BIG thank you to my cuz, Jenny, who helped me decorate all of them!}

{Gavin would have loved his Baby Einstein caterpillar was his favorite part of those movies! I teared up every time I walked by it.}

{Our garden BEFORE...}

{Mommy planting a flower...}

{Big Brother planting a flower...}

{Daddy planting a flower...}

{Big Sister planting a flower...}

{and Baby Sister eating peaches!}

{We got a visit from Boomer the Service Dog...he is a Bull Mastiff and is SO big! He helps carry the oxygen tanks for his pal, Lee, who has Alpha-1. The kids LOVED getting to pet him!!!}

{All the toys donated that night!}

{There will be a LOT more once we use all the cash that was donated...after the wagon is paid for, there will still be $250.00 left for MORE toys!!! We are going to go shopping Monday morning, so there is still time to donate if anyone wants to!}

{Our garden AFTER...}

{Slideshow of everyone else's pictures! Let me know if you'd like copies of any of them and I'll e-mail them to you!}

Tuesday, October 6, 2009

Happy Birthday

Happy 2nd Birthday, baby boy.


Gavin's 2nd Birthday
Tuesday, October 6th
"Come and Go"

We are going to have a birthday party and toy drive for Gavin's 2nd Birthday! Everyone is invited to stop by our house for a birthday cupcake and to drop off an unwrapped toy to be donated to Banner Desert Children's Hospital. They give these toys to the children during their stay and after having procedures done (which is SO appreciated- its so hard keeping kids entertained and happy in those little rooms 24/7, especially when you are there for a week or two!).

We are also going to be donating a wagon to the children's ward in memory of Gavin (he loved those wagons SO much!), if you'd rather donate a few dollars towards that. I am pretty excited about the wagon...since it has a canopy on the top, the kids will be able to go outside! (I remember always wanting to walk around outside with Gavin, but we never made it past the courtyard because the sun was just too bright and in his eyes). His paypal account is still open, so donations can be sent online through Paypal to, or we will have a cash jar set up at our house tonight as well. (Any extra money will go towards purchasing more toys.)