April 14, 2011: Book Night!

Heaveno!



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.

Nope.

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.

April 11, 2011: Ali turns 5 years and Bella turns 6 months

Heaveno!

It was a bittersweet day today.  It marks 5 years to the day since Ali's birth, and it marks 6 months to the day since Bella's death.  The day started off quite difficultly insofar as how do you honor both?  Tears fell, phone calls were made, and memories were shared for Bella, while smiles and laughter abound, trips to Disneyland were made, and memories were created with Ali.  To have our three children truly represent the past, the present, and the future today was quite a quantum experience.  On Ali's last birthday trip to Disneyland, Bella rode shotgun, today, she rode alone, but for her next birthday trip, Julian will ride shotgun.  Crazy.

Today culminated a 3 day festival of birthday celebration, really.  On Saturday, we celebrated Grandma's birthday with Grandma and Grandpa at Uncle Steve and Aunt Dina's house.  Presents were opened, food and cake was enjoyed, and a good time was had by all.  Here are some photos from that party, courtesy of Grandpa...

Then, yesterday, the all-girl entourage of Ali's friends descended upon the mecca of girliville: Olivia's Dollhouse Tea Room.  We balanced our chakras IMMEDIATELY after by hitting the Tustin Brewery right next door for some beer, lunch, and lots of big screen TVs showing more sporting events than you could follow.  Enjoy the pictures courtesy our friend Sara Cooper...

Finally, today, Ali went in to school for a half day so she could celebrate with her school mates... and it was her day for show and tell.  Then, we hit Disneyland.  I said "Trips to Disneyland" above because as we were getting out of the car in the parking lot, I realized I didn't have my wallet, in which lies Ali's and my Disneyland passes.  Remember the grief-induced-cognitive-disturbance I have written about before?  Yup.  Still got it.  Like when we showed up at our accountant's office last month and I left ALL our tax documents on the dining room table, after having them in my hands.  Nice.  Anyhow, Ang and Ali played in Downtown Disney while I doubled back home (luckily it's only 15 minutes away) for my wallet.  Good thing to have if you are driving on the freeway, also.



Ali had a BLAST at the big D today.  She cracks Ang and I up all the time.  Her mannerisms, vocabulary, and correct use of phrases and expressions which are grown up is amazing.  She won't let a SINGLE WORD go by that she doesn't understand without stopping either of us to explain it to her... and she doesn't forget.  Tomorrow, she'll use one of the words she learned today, and she'll most likely get it completely right, or the pronunciation is 90%, but more interestingly, the usage will be 100%  appropriate.



I'm in so much trouble.  Let's hope she uses her superpowers for good and not evil.  LOL.

All in all, it was a great three day stretch of friends, family, fun, and NEW TOYS... zhu zhu pets are taking over the planet by the way.

God night.

Enjoy my two favorite pictures from this day last year... first Ali sees mommy... then the giant mickey mouse on the ferris wheel across the lake...

April 7: Last Post with Ali as a 4 year old

Heaveno!

Well, it's true.  Ali turns 5 on Monday, which means Ali turns Princess on Sunday.  Yup.  Olivia's Dollhouse Tea Room: The Sequel.  A couple of years ago, one of the older girls at Ali's daycare was having her birthday party at this really expensive little place where all the girls dress up in princess-wear, makeup, heals, the whole bit.  Then, they have "tea" (lemonade) with mini sandwiches and then exchange presents... girlie girl TIMES TEN.  Super cute, right?  Well this older girl invites Ali as a impressionable little 3 year old, and before you know it, we're doing birthday parties at this place for the next two years.  On the one hand, everything is done for you, on the other hand, it didn't cost half as much on your own, so it is quite a convenience charge!  It's all good.  Everyone has a great time, and we're blessed we can provide this fantasy experience for her once a year.  I will post photos, I promise.

In other Ali news, she now gets regular homework - er, uh, I mean - "home activities."  Like how they don't call it homework?  I just about died laughing at that one.  Tonight's homework was cute; Ali was given a ziploc bag of fruit loops, and had to come home, sort them, count them, and determine which color had the most and which color had the least.  What was fascinating about this was that while Ali has memorized the numbers, and can count, she didn't yet understand the relativity of the numbers, as in 19 was the largest and 14 was the smallest.   It pointed out how specific and multi-tiered cognitive development is.  We do out homework as soon as we get home, a habit I observed the top kids in my elementary school doing when I was growing up.  I know other parents will understand this next sentence, but it really is like you are getting a second chance at life through your kids.

P.S.  After we finished the math portion of the activity, Ali immediately suggested we make some sort of artistic scene with the fruit loops, so she went to town right away, and within a minute or so, we were on a boat sailing past an island with a lone palm tree...



In other family news, the trip to Scottsdale was a success!  We had 7 guests at the function for CCRF!  We met and spoke with Dr. Joe Neglia, the physician-in-chief at the Amplatz Children's Hospital at the U of M.  We also got to hang with John Hallberg, CEO of CCRF, and our two development officers, Jocelyn and Lauren from CCRF and MMF.

The former PGA Tour pro and now red-hot Champions Tour Pro Tom Lehman was on hand as well as CCRF's national Charity spokesperson.  He recounted a story about how one time they were touring the hospital and a dad walked out of his child's room and just held his head against the wall right in front of Tom.  Apparently, the dad had just been given the news that nothing else could be done for his child and he had lost all hope.  As I sat there and listened to that story, I realized that Ang and I never actually got there.  We never lost hope for Bella.  Even on that last day, we thought she was making some sort of miraculous turnaround, until we watched her leave for the final time.  Even in that moment, she was leaving our care and going to God's care, and that was okay, too.  Ang and I looked at each other and just felt so validated as parents that we did the very best anyone could have asked for, and Tom's story somehow reiterated that to us.

I walked up to Tom right after his speech and shared our story with him.  He was so compassionate, it was really moving.  He just sat there massaging my arm and my shoulder gently as I told him about Bella and our journey now.  He's a real class act.

On a lighter note, I was excited about this party because we were bringing some of our Phoenix friends who were into cancer and genetic research hoping to connect the two camps.  My best friend's dad walks in the door and the hostess, who is one of the original friends of Diane Hageboeck who founded Children's Cancer Research Fund, recognizes him on sight and they start talking on a first name basis like it's nothing!  Turns out they both serve on a leadership council for the Mayo Clinic in Scottsdale and were just together at a meeting on Friday!  Small world.  There were actually a few stories like that on the night.  It was nice to see all the concentric circles of care, compassion, and philanthropy.

It was really exciting and inspiring to meet Fran Hitchcock, one of the women who helped organize the first Dawn of a Dream event for CCRF nearly 30 years ago.  She couldn't have been sweeter or more full of life.  My younger friends (we were all in our late 30's/early 40's) and I were were young enough to be the children of most of the people at the party, and I really saw us as the next generation of philanthropists.  That was a cool feeling; like we were already onto something important that Erickson would say we wouldn't care about until maybe our 50's or 60's.  Fran kept telling us that we need to meet the Hageboecks next time we go to MN, so.... Lauren at MMF is already on it!  We are toying with another quick visit while Ang can still travel, and if so, we're having dinner with the founders of CCRF to drink from their wisdom and experience.  30 years and 100 million dollars later, that founding couple has done a world of good for just about any kid who gets cancer anywhere in the world today.

THAT is the kind of legacy we want to leave.  When a set of grieving parents can change the face of cancer treatment through funding breakthrough research, it reinforces my credo that it is not the events of life but our responses to them that determine the outcome.

Wouldn't it be great to know you were of service to so many?

Isn't that just the best game in town?

It is for us.

God night.

April 4, 2011: Scottsdale, here we come!

Heaveno!

Well, my conference is over, save for one more email to send out and some final balancing of the books.  I stayed 4 nights on the Queen Mary, and honestly, it might have been the most fun venue I have ever stayed on or at.  I felt like I was on it long enough to have sailed from NY to England!  I made my first shipment drop on Tuesday of last week, and pulled away last night at 8:30 pm.  I truly fell in love with the ship, though.  Completely hand made, the Queen Mary was truly the most elegant ship of its era, and we are lucky to get to take in all that luxury at a fraction of what that level of luxury would cost today!  I think we were really spoiled, and that next year's conference at the Red Lion in Salt Lake City is just, well, not quite the QM in terms of charm.  How could it be?  I will say that the Red Lion's hotel rooms are AMAZING and really nice, but the meeting rooms are, well, your standard boxes.  Oh well, next time conference is in socal, we're coming back to the Queen Mary!

On the home front, we leave tomorrow morning for an overnight trip to Phoenix/Scottsdale area.  There is an cocktail party/event in north Scottsdale, AZ tomorrow night where the head doc from U of M Amplatz children's hospital will be meeting and greeting other U of M alum that have relocated to AZ as well as friends and family of ours.  We're really excited to connect some of our friends and family from AZ with the gals at the Minnesota Medical Foundation who will be on hand.  I'm also curious to hear from Dr. Neglia about the transplant study to see where it shows up on his radar.

We have about 6-7 people joining us as our guests, and we get to stay with our dear friends, Bob and Lynne Boschee, whom we stayed with at the lake up north over the summer as well as when we did Bella's AZ gathering.  It is always a good time for everyone as her kids and Ali get along great as well.

Also!  there is a REALLY cool online auction raising money for PUCK going on till May 10.  One of Team Bella, Laura Valetutto, lives in Germany with her husband and 17 month old daughter, Anna.  She followed Bella's journey faithfully and you may recall seeing her regular comments from "The Artful Gardener" over the summer and fall.  She and her husband, Thomas, have put some really unique-to-Germany items on there that you should check out!  I am ALL OVER the FC Bayern Munchen military style hat!  Bayern is my favorite team in Germany!  Please go bid on some items you just can't get over here, and in turn, be a part of the cure!  If nothing else, would you consider putting her blog address on your facebook wall so your friends can see it and check it out, too?  Check out her GREAT blog title!

http://www.ebthecure.blogspot.com

All you have to put in your post on FB is something like, "Please check out this unique online auction that raises money for a foundation I care about and support called PUCK.  Thanks!"

Pretty easy, right?

Thanks as always for sticking with us.  We are grateful for you.

P.S.  Ali is 7 days away from turning 5!

God night.

April 1, 2011: The Rest of the Story...

Heaveno!

Sorry I am late posting.  It is Friday morning, and I am neck deep into our music therapy conference.  Off to a GREAT start.  Haven't seen most of my colleagues since Bella died, and the hugs and conversations have had that extra quality of love and support, both sharing in the grief, but also in the joy of it ALL.

So... sometime in early January, I was doing the dishes after dinner when Bella started talking to me.  That was a little unusual since Bella wasn't old enough to talk in life, so it wasn't like I heard a familiar voice... I felt a familiar presence.  It was that divine Bella, the one I've written about so many times before.

Here is what she said:

Hi daddy.  I know you are worried about the new baby, but I feel I have some explaining to do.  You see, there is a soul up here in heaven that wants to come down to Earth and do GREAT things, but she wants to come with EB, then be healed by it specifically first.  I didn't want to see her wait such a long time up here, so I thought I would help out.  So, I kind of 'jumped in line' when you and mommy wanted a new baby, because I knew that if I came through you, and we went through EXACTLY what we went through together, YOU would speed up that process for that cure, and my friend up here wouldn't have to wait so long to realize her vision.  Sorry about that!  What I really want you to know, though, is that this new baby is the second baby you were intended to have all along, and the baby will NOT have EB.  I hope you don't mind..."


Angelique and I had such a strong feeling that our second child was going to be a boy, that when the ultrasound came back and it was a girl, we were completely shocked.  It was as if something was out of place.  So much so that Ang actually packed a pair of boy clothes for Bella's delivery date just in case.

Julian, your big sister cut in line.  I hear big sisters have the right to do that from time to time.

God day.