Sunday, August 14, 2011

August 14, 2011: An Unwelcome Visitor...


First off, thank you for your incredibly generous comments this past week!  They just warm our hearts in more ways than I can articulate.  We feel the love, and there's nothing like it.  Thank you again.

The unwelcome visitor?  A stomach bug has waltzed into the house today. All three of us have it, and it came on at exactly the same time.  We made cookies this morning, and I'm wondering if the eggs or butter from the recipe may have been bad, I dunno.  All I know is that Ali's and my stomach are in knots, and I feel like ______ .   Good times!  Better this week than next week I suppose!

Can you believe Julian is going to be here in like 7.5 days?  It is beginning to blow my mind.  We spent a lot of the day continuing to feather the nest this weekend.  I think we are about 90% there.  Today, I hung Julian's name over his crib, and had to move Bella's poster.  It was a little exciting and a little bittersweet at the same time.  Bella has a nice corner of the room devoted to her, with her framed poster and photo collage on either wall of the corner of the room; her purple butterfly wings from the hospital hang between them.  I really would like to show you pics, but I keep slacking on buying the necessary adapter to pull pictures from my camera's scandisk.  I PROMISE to take pics next weekend when the crib is converted back to a crib and the room is "ready."  We are still using the crib as a toddler bed, because it makes a great little couch for mommy to sit on when we are all hanging out in the room together.

At night, I sit in the corner with my ukulele, and play while mommy reads Ali a bedtime story on "the couch."  Then we sing Julian's song (sometimes Ali is into it, but a lot of the time she just tolerates it), then we turn out the lights and mommy rubs Ali's back (and/or cracks her toes upon request... don't ask) while daddy plays and sings lullabies.  Ali now falls asleep to live lullabies really quickly and it has shortened the bedtime process tremendously since implementing this.  Singing Julian's song nightly has brought music back to bedtime which has been nice.  One might think that music is going 24/7 around here, but the honest truth is that because it is also my job, and my instruments are in my hands at work all day, I'm not always excited to break 'em out at night.  The uke has been great because it is really small and a) easy to carry around (doesn't bang into things) 2) easy to start playing something fun and happy, and 3) a new instrument, so there is lots of exploration for me every time I play it.  I really like that part.    I've been playing guitar for 23 years now, and while there is lifelong learning and exploration there as well, the uke feels new in my hands... like "honey, I shrunk the guitar!"

Momma is spending rapidly more time resting over the last 72 hours.  Her energy has just disappeared; to which I remind her that she is working harder than any of us!  I've been happy to let her and Ali sleep in (more uninterrupted soccer for me... tee hee... the new season in England started yesterday much to my joy), and take as many naps as she needs/ wants to.  I can't pretend to imagine what it's like growing such a gigantic living thing in your body relative to your own size, or, well, relative to anything, so I figure it's my job to help pick up the slack and make things as easy for her as possible.  I hope I'm doing okay, because like I said, I think she's got the hardest job of all!

Last but not least, I want to plug my birthday wish again...  I am giving up my birthday (August 31) to continue to raise funds and awareness of the absolute groundbreaking research taking place at the U of M with EB right now.  As Jane so fondly says, I want to shout from the rooftops what they are doing up there, because I know people really don't (yet) appreciate exactly what is unfolding in this trial, because if they did, research funds would be flooding the offices!

Without restating all of it again, if you want to read WHY the U of M study is SO UNIQUE in the EB world, read the short essay I wrote by CLICKING HERE.

Thank you to all of you that have donated in the past and in this current drive.  We write checks ourselves to MN and to other places as well, and I know that many struggle as a result of the current state of the financial world we live in.  Yet, despite that, you have given.  EB doesn't care how the stock market is doing, or who's in public office, or what anyone on any cable news channel is spouting off about anything.  EB kills kids, it disfigures kids, it wrecks marriages, it traumatizes families.  It's no walk in the park for anyone touched by it.  It is a great reminder of how good many of us have had or currently have  it - heck if you are blessed enough to have a computer and internet access, you are better off than most of the humans walking the earth, myself included!  SO, please, even a dollar makes a difference.  Will you take a minute and donate a buck?  Thank you as always!

Much, much love and gratitude.

God night.


  1. 7.5 days...I can hardly stand it!
    And Kindergarten starting guys are off to an exciting fall!

    I remember growing a ginormous baby (9 lbs 11 oz of Jack!), and feeling like I couldn't go another day the last 2 heart is with Ang! Even napping is hard! But it's all worth it...and we will all reap the benefits the minute you post pictures of Juian!

  2. So excited!!! Cant wait to see how you have feathered the nest and definitely can't wait to meet your little man!

    My heart goes to Ang as well! Like Sara I popped out a whopper the size of her Jack and I know the pain of One day having energy and the next absolutely none! It will all be more than worth it in the end when that beautiful boy is in your arms!

    Much love,

  3. Wishing you all a quick recovery from the stomach bug and lots of rest for Ang!!! We will all be happy to hear the great news of Julian's arrival!
    P.S. My daughter, Valentina (14 months) is now giving us trouble falling asleep each night. You are WELCOME to come over anytime and play lullabies for her!:) It might be the only thing that will work!

  4. Hi Tim

    My name is Christin and I just gave birth to Matthew Hung 3 months ago, he has Dystrophic EB and we're still waiting for results to determine whether he is recessive or dominant. I'm hosting a party for Matthew on August 28th and would like to fundraise for EB research on this occasion, since I have asked my friends not to buy any gifts for him. I am wondering if you could provide any additional information to me, just to help out with the fundraising. Anything would be appreciated. Thanks

  5. We are hosting a garage sale this weekend and my goal is to sell 100 cupcakes to raise money to fight EB. The money raised will be my "birthday gift" to you. :)

    These amazing, beautiful butterflies have been visiting me this summer. They always seem to be around when I am anxious (the new job seems to fill me with anxiety). To me they are sent by Bella to tell me it is all going to be ok. They always end up leaving me with a smile (because my thoughts turn to Bella) and the anxiety fades away.

    Sending my love to all, kisses for Ali and belly rubs for Julian.

    Denise WI

  6. Hi Tim.
    I'm sure you are doing more than OK because you are a great father and husband.
    Hope you all recover soon from the stomach bug.
    All my love,

  7. I'm suprised Julian isn't here already! Poor Ang! Send us a text when he's born!! I think we'll be down on Wed. Not 100% yet. Anyway, I need to drop off the gift...the gift bag is starting to look dumpy sitting in the car all this time! :) Ha! Talk to you soon!!

  8. I am a believer in music. We had a couple of neat experiences with our babies and music. Our first was kept in the hospital and we were sent home. I awoke telling my husband I could hear her cry in my sleep. We got up and drove to the hospital. She was crying when we entered the nursery. Her Daddy walked over and began singing the song that he had sung to her while she was in my tummy. Immediately, she stopped crying and looked right at him like, "Hey, I know you!." It was so amazing!

    And another... We brought one of our sons home from the hospital and I turned on the Cd that we had listened to each night at bedtime. He had that same familiar look of, Whoa! "I recognize that!."

    Cool beans as my kids would say.