Sunday, July 3, 2011

July 3, 2011: Trying to Stay Present...


When I type the title of the blog post each night, I start with the date.  Well, for the past week, the computer has been auto-populating the rest of the title with last year's title.  So, tonight, as I typed in July 3... it said, July 3: Day+1.

That means yesterday, July 2, was Day +0... transplant day.

It also means tomorrow is Day +2... intubation day.

and YET, yesterday was NOT Day +0, it was July 2, 2011, with its own full day of fun, excitement, and tribulations, just as tomorrow is NOT Day +2 intubation day (sounds like "terminator 2: Judgement Day), it is the fourth of July, 2011.

However, as we pass these landmark dates for the first time since last summer when it all transpired, it is impossible not to be emotionally "co-located" between "the now" and "the then."

I went back and read the post from 7/3/10...  Feels like eternity ago, and yet, I find myself feeling, in the words of Eddie Money, "I wanna go back, and do it all over, but I can't go back I know..."  The sadness and regret I have been feeling the past couple of days has really been wearing at me.  I know I have been snappy with Ali and distant with Ang... It is such a crummy feeling.  It's not unique... you've all felt it.  It's that awful feeling when you just wish you could turn the hands of time back and make a different decision... but you know you can't, so you know you are torturing yourself going down that mental road in the first place, but you do it anyway... that feeling.


(Sorry for the language... it just sums it up perfectly).

Alright, thanks for letting me vent all that out.  It just would be totally inauthentic if I tried to just give you the report of the days since last posting like I'm just movin' through life, day by day....

Having said THAT, here are the events of the past few days! LOL:


We saw Daylon!  We got to spend a wonderful afternoon/evening with the Edlings and can you believe I forgot my camera?  AAAAAHHHH.....  Jennifer promised to send me some pictures from the party, and as soon as she does, I'll post 'em here for ya!  One additional surprise was that Steve, Becky and Chloe Pop drove ALL THE WAY from Sacramento to attend!  It was SO nice to see them as well.  You may remember that they lost their daughter, Elle, in the same trial shortly after Bella died.  We hadn't seen or spoken to them since, and it was really great to catch up.

Gotta tell ya, it was mind numbing to see Daylon.  Steve Pop and I almost fainted on several occasions watching how Daylon could get picked up from under his armits... and get this, NOT A BANDAGE anywhere on his body, save his right foot where he has a chronic infection he battles.  Outside of that, he  was barefoot on the left, with nothing but regular diapers under a pair of shorts, and a custom made - EMBROIDED - birthday t-shirt on top.  For a baby with Junctional-Herlitz EB to celebrate his 2nd birthday like this?  Unheard of.  Daylon IS medical history.  What a fighter!  He has fought so many "insurmountable odds," it is amazing.  He is amazing.  His parents are amazing... P.S. they have 4 other kids to raise!  What a story.  If you haven't gotten hooked on his blog, you can follow Daylon HERE.

It was also really cute to see Chloe, Ali, Kiera, and Caleb running around together again.  Kiera and Caleb are Daylon's oldest siblings, and last summer, the 4 of them were pals in MN together.  What an amazing reunion it was!


Saturday was spent at a fun birthday party of one of Ali's friends from daycare.  It was at one of those all-inclusive fun spots for kids with giant bouncy universes for the kids to play in and pizza and cake galore!  Lots of Ali's friends from daycare turned out, so it was cute to see them all back together again.  Several of them have left daycare for school (as Ali has) so it was definitely a reunion!  Daddy got to have some fun as well playing with the kids.


We spent today at a beautiful community pool in our friends Pete and Maria's neighborhood.  A mixture of family and friends were there, and tons of kids.  Ali was in the pool ALL day.  That kid is a FISH.  She gets better and better in the water every day.  She LOVES IT.  I remember loving being in the pool as a kid as well, mainly because we didn't have one, so when I was around one, I was IN one.  In New England growing up, pool season was SHORT, so it was like a special occasion to go in the pool!  Ali treats every day like it's a special occasion; like it might be her last chance ever to play in a pool.  It is cute.  We hung at the pool for like 7 hours, and yes, we are pink, but again, it was a good time.


We ran out of plans as of today.  I foresee Ali wanting to go to the pool.  Shock.

Happy 4th; I need to get some aloe and get to sleep! :-)

God night.

Doesn't this look like something out of Dr. Seuss or Willy Wonka???


  1. Had we been in town, I was going to hide in your mini-van and crash Daylon's party with you...what an amazing journey. I am glad you got to spend time with the Edlings!
    Scooter's Jungle is crazy fun...combine that with a swim, and it takes ALL the energy out of your kids...hopefully, Ali had an early bedtime for you!

    Happy 4th!

  2. A heart broken will heal over, but will always bear scars. No matter how far along in life you travel, you will have these wounds... faded but still so present. Bella's passing will always hurt, one year, ten, fifty. Your heart will hold that pain. Allow yourself to feel your regret, anger and sorrow. Your heart also still holds so much love for Bella. The love you, Ang and Ali share for Bella is a bond unique to you three. Use it as a foundation to your healing. When you are having an especially hard day, turn to them- they UNDERSTAND. They, and soon Julian too, are your way through this pain. Take all the love for Bella that fills up your heart so full until it hurts and pour it over them. You need to empower that Bella love in your heart instead letting it sit in sorrow. It will always replenish itself because it has no end. Sending you prayers of strength and continued courage...
    Redding, CT

  3. Tim,

    I can't imagine how hard things get sometimes. I could say that I do, but many of us will never know what it feels like to be in your or Ang's shoes.

    As I consider becoming pregnant, there are some dark ideas in my head of what could go wrong. But for you and Ang, those ideas were very real. Yet, you kept moving forward and embraced whatever was coming your way. I am so inspired by your courage.

    Thank you; the honesty and insight you share with us is unlike anything else I have read. Thank you for continuing to allow us in to your lives, to grow a little with you as your journey continues.

    I hope you all had a fun 4th of July! I imagine Bella was dancing among the fireworks.... it must look AMAZING from her side of the world!

    Karen Steiner
    Denver, CO

  4. Tim,

    It was interesting because right after Sarah died, I'll never forget what Tolar said to me, "you will always feel this deep pain". That haunted me for a while but he is right. The pain stays deep, it just isn't as frequent (which of course adds some guilt to the emotional pot). I am sorry you were feeling it, it's good though you recognize it for what it is, pain from the lose of sweet Bella. I find I'll be irritable and such with my family and realize I am missing Sarah. I couldn't figure out why in CA I was super anxious on that Sat. and Sun. Well, duh, Monday was the anniversary of Sarah's death. I did't put it together until I was on the plane ride home. It is a learning process for sure!
    Great to hear the report on Daylon! Your pictures look AWESOME, I want to go play in bounce houses!
    Have a good week!

  5. Hey Tim,
    I'm sure the next few days will be difficult to process. It's not a fun process to look back on what a year ago today, this week, etc. was. In a way, eventhough our paths have changed a bit, it's nice to know we are still traveling through the journey right beside you guys.
    It was so nice to see you guys on Saturday. I only hate that I couldn't just sit down and visit the whole time with you guys and the Pops. We've missed you guys! The kids had a blast with Ali! Lets do Rubys for dinner this month for sure!!
    Take care!
    Jennifer (and the Edlings)

  6. if you do Rubys...i am coming!

  7. Hi Tim! What a gift for all three of your families to have gone through such intense situations and be able to connect and celebrate Daylon. That is awesome.

    What beautiful hearts you, Ang and the Pops have to be able to celebrate Daylon when your two girls did not have the same outcome. The rest of your children are extremely fortunate to be raised by such caring and loving people.

    I do read Daylon's blog and am so happy for him.

    I was curious what you regret looking back? (If you are comfortable sharing?)

    My prayers are with you as you deal with your pain.

    When is Ang's due date?


  8. What a great weekend for you to be able to share your sorrow, happiness and excitement for the future with two families who truly can relate to what you are feeling. Please tell the Pop's that we haven't forgotten them and pray for healing for them often. I hope Ang is able to stay comfortable the next few weeks in the summer sun. God Bless you daily, Holly in ND