Thursday, April 14, 2011

April 14, 2011: Book Night!


Well, it's a busy week in Aliland.  Monday - show and tell, followed by Disneyland.  Yesterday - PICTURE DAY!  (Holy Cow, I can't believe it's here... I'll be saying that when she asks for the car keys soon enough, right?) Today - Book Night!  They had a book drive at school this week where if you buy a book from them, you can get a second one free!  In addition to the half dozen books Ali got as birthday presents, we picked up 6 more over the course of the week.  Tonight, the teachers did a play based on the story, "The Mitten," and served all the families of all the kids in all the classrooms pizza, cookies, and juice.  We set up picnic style out on the grass and had a blast.

The best part?  The two books Ali picked today... one is a 3D book (with glasses - see photo) on sharks, and the other is on The Mysteries of the Giant Squid.  This is the same girl, who on the way from our OB visit today, requested a YouTube video on my phone of a real live fashion show.  I didn't know fashion shows and sea creatures could coexist in a 5 year old's mind... who knew?

On a separate note, can I just tell you how amazing the Ronald McDonald House in Minneapolis is?  Yesterday, we received in the mail a box from them.  In it was the most beautiful set of wind chimes with the following note:

"Time passes and we think of you often.  We hope that your days are full of memories and peace.  Bella will forever be in our hearts.  With love from all of us, Ronald McDonald House."

Given that it arrived yesterday, and given that Bella's name in the card is inserted in a way that looks like it comes from a mail merge, we're guessing that they have an automated system for reaching out to families after their loved one dies since Monday was the 6 month mark.  Having the wherewithal to know how often they want to reach out to families and to systemize it so NO ONE slips through the cracks... in addition to all they do for the people in their home RIGHT NOW... they are just amazing.  I don't want you to misunderstand my comment about the mail merge thing.  To me, the fact that they have thought this process out so in depth, and have been providing this level of compassion for obviously so long... it just blows me away.  I spend a lot of time in the online and automated sending of letters world and I know that to have a gift as beautiful as the chimes with this card inside it means that there is so. much. thought. that goes into EVERY child and family they care for.  Wow.  Blows. me. away.

Thank you, RMH, for being above and beyond a class act.  Today, Ang worked from home, and I left the sliding door to the deck open all afternoon so we could listen to the song from Bella's Chimes.  You have no idea what a gift that was, is and will be each day we see them and hear them!  Thank you.

In other news, one of the first entrepreneurs I met at Joe Polish's 25k Group meeting in Dec. who donated to our cause wrote me out of the blue today from Singapore of all places!  He is there for 4 months with his family teaching at a University there.  Man, that just sounds cool.  Anyway, he asked me how the fundraising is going, and I my shoulders slumped.  I thought about the whole campaign... I'm not presently on a linear track to hit my outlandish goal of 3 million dollars by May 21.  Not even close.  I am the guy - and always will be - that swings for the fences in life, because I know that every once in a while, you hit one out of the park.  I just did with the music therapy conference.  It wasn't the pitch I was looking for, but it was the pitch I was given, so I swung.  I struggle with making these outlandish claims because of the nature of the process.  A declaration isn't a statement of how, it's a statement of what.  You start with the what, recruit the who, design the how, and say by when.  I am really good at the what, and in some cases, I get the other pieces in place, and in this one, I haven't (yet).

(Can you totally hear my defensiveness in my initital response?)

Then, I thought about the past 6 months, and I realized we've been through one whopper of an emotional roller coaster with Bella and Julian.  On top of that, the shock has worn off and the full grip of grief has taken more out of me than I hoped.  Just because I understand the grief process... I thought it might spare me its full power.


Running the music therapy conference was actually really a good thing for me mentally and emotionally, because it allowed my brain to escape the pain and focus on something totally unrelated to Bella.  When I was working on fundraising, it was just. so. painful, so I did what any normal person does, I avoided pain whenever possible since the grief itself was pain enough.  Remember how I used to describe the electric shock quality of pain?  It's different now.  It has morphed for me into a couple of different arenas.  There is the heavy mental fog that no amount of caffeine seems to be able to cut through except for maybe 2-4 hours out of each day where I just feel kind of normal.  The rest of the time, I feel socked in by fog.  It has a physical weight as well.  I feel heavy in my own skin.  My body feels tight and heavy, my shoulders are killing me, and my back has never felt tighter.  Frankly, it's exhausting.

Now, imagine that being pregnant!

My wife is THE strongest person I know.  Her sciatic nerve is running wild, allergies are in full blown overdrive, but she gets up every day and handles whatever comes her way.  If you only interacted with her over the phone, you probably wouldn't even know she was pregnant.  Always on every call... just awesome.  Angelique continues to be my daily source of inspiration.  I love you, honey!

Nevertheless, I continue to be grateful for it all.  I know that this exact experience has blessed so many in so many unusual ways.  We are all here together.  Still!  We need YOU now more than ever as we enter this bizarre spinning coin of emotions - excitement, joy, grief, pain, all of it.  To know we are not alone... your comments help us bear the pain.  Your presence has always given us strength when we needed it most.

And, by October 11, 2020, there are various treatments available for EB, and no child ever has to do from it again.

God night.


  1. Just to let you know I still read here and think of you often. I love the picture set at the bottom of this post!

    Don't feel disheartened about not reaching your exact goal by May. You will reach it eventually. The work you have done so far is amazing and I am sure already goes a long way in the fight against EB. Maybe give yourself a certain time to get further along the grieving and healing process and enjoy Julian's first months. Set yourself a date when you would again throw your all into fundraising.

    God bless!

  2. Anything worth achieving is going to have setbacks or downturns. Changing the world is not a simple, quick or easy thing! It is all part of the journey~ allow yourself a respite now and again, then renew your efforts with a fresh perspective. You are not letting Bella down or loving her any less because the fundraising slows at times... you owe it to her to also live your life to the fullest and enjoy just BEING. We are all here for you and Ang. I have no doubt you will make the 3 million, don't you dare feel defeated.. . you have achieved so much already! Baby steps. What an appropriate saying.... baby Bella and baby Julian :) You are on a journey to help so many babies, of course it will take baby steps! Give yourself permission to grieve in whatever way you need to and don't get discouraged. We are here for the WHOLE journey...

  3. Hello! We are here and thinking of you all each and everyday. Ali is such a neat kid. I wish I had the honor of being her teacher one day. They are a lucky lucky bunch-her future teachers. Best wishes to Ang and she continues to inspire and amaze us all. Best wishes to you as you continue to show the faith, honesty and love that comes from God into all of us.

  4. You can never try to speed up, or slow down, or intellectualize the grieving process ... You just have to walk through it... With God by your side.

    I'm in no way saying that I don't wish that you won't receive your goal by May 21, but, so many people are left feeling a deep emptiness once having achieved that long sought goal. That's a feeling you don't need right now (or ever, but I hope that you get my point). And I would be thoroughly surprised to ever see you be beaten down and giving up.

    Ugh, reading through that I REALLY hope that you don't misunderstand me, just having a hard time expressing myself...

    Blessing to you, your amazing wife, your awesome daughter, and Julian who is truly blessed to have you as a family.


  5. What BEAUTIFUL girls! Praying for you today. You are soooo right. Ang is definitely one of the strongest people I have ever met...but you are too even if you don't know it. :)

    Going to Dr. Wagner's seminar in a little bit...will fill you in on the details!

    Much love to you all!

  6. Dr. Wagner's eyes lit up when I introduced myself as your friend today and said that you two are amazing people and that its so great that many of the families that lost children are so involved. He said that you are so full of energy that you wear him out (very lovingly)! So don't be hard on yourself. You are doing an amazing job! And we are having so much fun helping.

    I wish I could come to Bella's party!!!

  7. Love you all! And love those pics of the girls at the bottom - they look like photo-booth pics!!

    There's nothing at all wrong with setting big goals! I think it's all a matter of timing - and I'm encouraged that you're going to meet your goal, even if it's not in the time frame you originally planned. The point is, you're trying - even in the midst of grief - and that's more that most of us can say (pointing the proverbial finger at myself here, too!)

    Anyway, I'm praying for you to be encouraged and for God to open the right doors at the right time. Hugs to you, Ang and Ali!

    Love from TX,
    Laura (for the Team!)

  8. Thanks for the inspiring honest and helpful to those who know "the fog"...real and true and part of you...

    You will meet your goal...God's time...not ours.

    On a lighter note...Ali is queen fashionista!!! Look at those outfits, layered and ready to go. Can't wait to watch her beautiful!
    Love, Donna/NJ

  9. hello, friends :)

    I was thinking that it's time to move the Bella's Book button, and put up the ad for her Birthday Bash :)

    Just a thought...

    See you Tuesday!

  10. Well....that was easy ;) looks great!