Thursday, May 5, 2011

May 5, 2011: Happy Cinco de Mayo!


This holiday has admittedly lost its flair since children.  We recently met a lovely family in our development and we were joking today about what B.C. really means... Before Children!  LOL.

Tonight, I spent some time on some of the other EB kids' blogs that have been through transplant to get an update.  I miss them, and I miss their families so very much.  The saddest piece of it all was that while we were in MN, we met so many of the families as they came back for follow up, but at that point, Bella was in the PICU, so she didn't get to meet them or vice versa.  This may sound weird, but I miss being an EB parent.  I know, I know, I'll always be an EB parent, but life is continuing back to that happy 'normal' routine, and don't get me wrong, I am beyond grateful Julian is EB free, as is Ali... I don't know.  EB is just so... hard.  I mean, go and read up on any of the post transplant kids, and you see that this is just such a complicated disease.  It wreaks havoc with so many systems within the body, inside and out.  In the words of Dr. Tolar, when I asked him what did he learn from Bella, "EB is so much more complicated than we ever knew."  There have been a few times in my life, not many, where I had to be as "on" and mentally engaged as during Bella's life, particularly in MN.  There was also such a immediately tangible sense of purpose... here was this amazing child, who was even more dependent than a typical child, which is already totally dependent.  It was all just so 'worth it.'

Bella was so worth it.

God, I miss her.

I know that when I see her again in heaven, it will feel like a blink of an eye, but from this side of the coin, it just seems so long from now! Don't worry, I have decades of fun and work left in me right here, but heaven is going to be one sweet reunion.  Sorry for the semi-coherent rant... blogs are cathartic.

Speaking of EB blogs, you should go and vote for Patrice Williams for mom of the year.  Seriously!  She was nominated on a blog in her community and as her husband Matt says, I'm sure the other women nominated are all amazing women as well, but since Patrice is the only one I know, I should vote for her.  Seriously though, the person who nominated her barely scratched the surface of why she is mom of the year.  She is so much more to so many.  I am so grateful to know her; she is a constant inspiration to me as a parent and person of faith.  CLICK HERE for the blog page the nominations are on... you have to go to the bottom of the page and click on "vote for your favorite mom here!"

And speaking of catharsis, today, I ran my first 5K on the treadmill in preparation for Children's Cancer Research Fund's "Time To Fly" event in MN in June.  Usually, I run about 2 miles in a minute-by-minute interval for 20 minutes, but today, I decided to just run the extra 1.2 miles in 10 extra minutes to see what it felt like.  It was also my 4th consecutive day running (and I am FEELIN' it).  The weight I put on in MN still hasn't come off with the weight lifting and cardio combo, so I'm shaking things up a bit and hitting the cardio HARD for the next two weeks.  It's also to get me ready to play soccer again!  I'm kind of hooked on it as I have written about before, because I use the time to really dig in deep and meditate on what's on my mind.  Running gets a lot of energy moving through my body, both physically and emotionally.  I cry and release A LOT of my grief on the treadmill, which is a little awkward at a small gym, but it needs to come out.  So much so that I frequently call a close spiritual mentor on my walk home from the gym to process what comes up.  We talk probably 3-4 times a week, and it is so great to be able to verbalize and release to someone all the pain, and not have them wince or feel the need to do ANYTHING with any of it.  What a gift.  Kind of like this blog!

Since I won't be posting again till after Mother's Day, let me close by just saying a few words of gratitude to all mothers out there reading this. From my mom, to my mother-in-law, to my wife, to my sisters, to my sisters-in-law, to all of you moms I'm not related to... you are amazing.  I think I have mom envy.  Actually, I know I do.  Watching Ang growing a baby in her belly while mothering Ali, oh MAN, that is as beautiful and attractive as it gets.  The grace, beauty, strength, confidence, fortitude, persistence, intelligence, gentleness, and LOVE that I watch Angelique exude from every pore in her being... THAT is inspiring to me.  To my mom specifically, who - no matter what she is dealing with - greets you with a smile on her face and love and interest in her heart... thank you, mom for being such a vision of unending love and vitality.  I am very lucky to be surrounded by great moms.

And to those moms who don't feel like they are great moms, that's probably a good sign you are one. ;-)

God night.


  1. :) It's a rumor that as a kid, I assumed that the hype for Cinco de Mayo was for my birthday...I spent my Cinco de Mayo at karate and McDonald's..things have changed, but I wouldn't trade that for anything.

    Bella is so worth it.

  2. Hey guys! I'm sorry I dropped the ball on our playdate. I've been in a funk lately. We'd still love to get together with your family. We'll all be there on the 21st. If there's anything you need us to help you with, please let us know! We'd love to support you in such a wonderful and important cause! We love you guys! Jennifer (and Family)

  3. Loved seeing this picture! Thinking of you all each day and night. Happy Mother's Day to Ang, your mom, mother in law, sisters and friends. You are all amazing and wonderful!

  4. Happy Mother's Day to Ang! Hope you all have a wonderful weekend.

    And as usual, LOVE that pic of Bella!

    Love from TX,
    Laura (for Team A)