Monday, May 27, 2013

May 27, 2013: Happy Birthday, Bella!



Heaveno!

Sorry it's been a while, folks.  I've recently programed my computer to turn off from 9pm to 6am every day to help support my work/life boundaries, and I used to blog on Sunday nights after 9.

Right about now, 4 years ago, I was probably back in Ang's hospital room recording her reading bed time stories and positive affirmations to Bella while I played my classical guitar in the background.  I took those recordings, and along with her birth song, dumped 'em onto my ipod to play in Bella's isolette over night.  Bella had heard those stories and songs every night in the womb while mommy read to Ali and while I sang and played to the belly, so it was fitting for her to spend her first night hearing those sounds again, especially since she was cut off from mommy in another hospital.

Feels like eternity ago, and frankly, it feels like the story from some movie I watched.  It was so over the top that it just doesn't seem like it was our actual lives.



Today, we started the day planting more flowers for Bella's butterfly garden.  It was really nice watching Ang and Ali plant and pot so many little arrangements.  I was on "distract Julian" duty.  After that, Julian went down for a much needed nap and I took Ali to the pool.





Then, we donned our new "I Refuse EB" shirts and with cards in hand, we went to the circle in Old Towne Orange and handed out cards and spread awareness about EB.  Knowing that literally hundreds of people were doing the same thing around country today in memory of Bella absolutely blew us away, and I want to say thanks again to Christie Zink for organizing this movement all on her own.  She is such a powerhouse for possibility.  If you haven't seen this amazing project she created to support Dr. Tolar at U of M, CLICK HERE.  To know that Bella is still in people's hearts and minds, and still on her mission 3 years later helps A LOT.  Thank you to all of you who were out there today, doing the good work you did.  I know we had a really powerful conversation with a family today, and it just felt so good to hear about the interest and genuine concern these people had.  There is hope for humanity!







Thank you to all of you who are out there every day advocating and spreading awareness for EB.  To our brothers and sisters at DebRA, EBMRF, JGSF, and our new neighbors, HEAL EB, thank you.

We are all in this together.

Saturday morning, we had a breakfast date with a wonderful couple, Ryan and Heather Fullmer, who run Heal EB.  They moved down here to Orange County, CA from northern California this past year, and we are all of 15 minutes apart!  They have an absolute fire cracker of a son, Michael who is also Ali's age, and who has RDEB like Bella.  We instantly hit it off and Michael had me cracking up for most of the time.  Watching Ali sit next to him and talk and play with him like there were no bandages and no scars... we were so proud of our little girl.  She (and we) just saw "Michael."  Ang and I imagined that it must have been refreshing for their whole family to be around new people they hadn't met and yet who understood each other so totally and completely.  We were able to talk about life with EB and life running little mom and pop non-profits with such camaraderie... it was really great.  We can't wait to hang with them again.  For me, my favorite moment was giving Michael gentle "high 5's", because the touch of bandaged hands with little finger tips peeking through is something my hands miss feeling.  A lot.

All in all, I think it was poetic that Bella's birthday fell on Memorial Day today.  She died fighting for a cure for EB... Fighting for freedom for kids born with EB to run, ride bikes, fall, eat doritos, hug, get a piggy back ride, give a piggy back ride, not get stared at in public, wrestle with their dad... the list goes on.  For many with EB, some of these things are achievable, but sadly for some, it's not in the cards...

... not yet.

Wouldn't it be AWESOME if it was?

One day, there will be lots of treatment options for kids with EB, and no child will have to die from this disease again.

Such brash statements are not pollyanna.  They are how transformation in the world occurs.  Thanks goes to Theresa Liao, who basically threw down the gauntlet to get this research started.  Thanks goes to Dr. John Wagner, who answered her call to arms.  Thanks goes to Dr. Jakub Tolar, a rare hybrid Researcher/Clinician who works tirelessly at the bench AND the bedside for a cure for EB.  Thanks goes to all the parents who have rolled the dice and enrolled in the clinical trial at U of M not knowing what might happen, but willing to put their child's life on the line for a cure... for all of us.  Breakthroughs don't happen without both parties... the subjects, and the researchers.

Today I remember Sarah Rose Mooreland.
Today I remember Jake Liao.
Today I remember Bella.
Today I remember Elle Pop.
Today I remember EJ Carfi.
Today I remember Nicholas Moore.
Today I remember Quinn Seymour.

And for each one of these names, there are countless more who we've lost outside of this clinical trial, the numbers of which are just too many.  However, I'd be remiss if I didn't personally mention our little drummer boy buddy Tripp Roth as well.  I still have my "I run for..." race t-shirt that has Bella's, Tripp's, Jonah's, and Daylon's baby pics on the back.  Getting to meet Tripp after Bella died was such an honor and joy.  He and his amazing momma Courtney have done every bit as much to raise awareness and hope for a cure as anyone above.

We are just privileged to be part of a team of such amazing people who, when thrown into such an intense crucible like EB, reach inside, outward, and up to God, and conjure a level of courage totally unique.  Unless you've personally changed the bandages on your child and watched their skin slide off in your hands as a result of you trying to keep them alive, you don't know the pain of EB.  Tonight, I quietly hold a space of peace for the hearts and minds of every EB parent who has had to turn off their heart during countless bandage changes while their children scream, "I HATE YOU!" at them, so they can stay focused enough to notice if an infection is brewing in a chronic wound site.

Tonight, while Ang and I are spared that moment, we also sit with another moment stolen from us.

The moment where after dinner tonight, we get to watch Bella blow out her four candles.

Fuck EB.

God night.



11 comments:

  1. Well said.

    Remembering Bella!

    Kim

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  2. Bella .. what a beautiful beautiful little girl. Thank you for letting us into your hearts for this special day. My son Syler, daughter Summer and I wore our shirts proudly as we spoke about your beautiful angel and all other Butterfly babies in the world.

    I hope your family is doing well today and i pray for each and every single one of you every night.

    Maritza

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  3. You know I think that Bella will "live" long after most of us are buried and forgotten. She and Tripp and Quinn and all of those little EB angels are part of something timeless and unforgetable that will continue long after most of us have faded away. Their story and their memory will live as long as EB exists and I think even beyond.
    I was thinking of you guys yesterday and pray for your continued peace as you go about your amazing journey!!
    Blessings from Kelley in MO

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  4. Thinking of Bella and your family and praying for your peace. Love, The Edlings

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  5. always thinking of Bella and your family Tim. Thank you for sharing your life with us, you are a true inspiration. Sending you love from Cyprus
    Christiana

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  6. Bella stole a little piece of my heart. She'll always be remembered. Love & Prayers

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  7. Always in my heart. Praying for Bella and a cure for EB.
    Mariana,UK

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  8. I do not even remember how I stumbled across your blog but I thank God every time I read it (I think perhaps a newspaper article about it here in Minneapolis or Jonah's blog??). I thank you Tim for helping me remember the small stuff in life. For remember that each day with my children is a precious gift that is not guaranteed! (Oh how I hate to admit that I forget that during some "challenging" times). Thank you for sharing such raw emotions to help the rest of us! Thank you for not giving up and continuing to speak for those with EB who are not able to do so. I pray that the cure for EB will be found...I BELIEVE that it will be with the great works here in MN. Thank you for sharing your family and most importantly thank you for sharing Bella. I never met her but I will say that I love her just the same!

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  9. Still thinking of her. She was such a beautiful little lamb. I wish your family had had longer with her.

    Sarah

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  10. This post meant a lot to me. FUCK EB. Now I can say it too...

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  11. Happy Heavenly Birthday Bella!...I came to know you, Bella, and your family...thru' finding and following baby Easton's story... This led me to the Tripp's story....which led me to sooooo many other EB babies and their families....I do not have a child w/ EB or know anyone who does personally....but I believe w/ all my heart <3 that GOD crosses our path w/ ppl we are meant to meet, share stories with, share information with, to support, to pray for!....In 2 life shattering experiences....I feel drawn to the EB cause....I read your story about Bella and your journey w/ EB...I have laughed when you did...I have cried when you did and I have thanked GOD when your little boy was born....and I made a promise to GOD and to all babies and people w/ EB...and to their families...to every EB angel...and to myself...that EVERDAY for the rest of my life I will tell someone new about EB and help to make as many ppl aware of this terrible disease as I can...and I pray everyday that they figure out the CURE.....I also encourage friends and family (and the ppl I tell about EB)to donate $$ if they can!....I wear a headband w/ 'lil boingy butterflies on it every time I can and to every single Dr. apt I have....There are so many ppl who approach me and ask me "why butterflies" and there's the intro. to sharing all about EB.....I am in a wheelchair and I am a wife and mother to 4 children (2 boys and 2 girls)...I also have dejenerative joint and disc disease...spinal arthritis....lymphedema (the swelling of my extremities)...mine severe...which has led to a very large, deep, open wound, 7 1/2" long and 4 1/2" wide on my lower leg....now 2 more wounds have developed...they have been there now for 1 year, as of june 2nd, and no one knows if they will heal completely...most likely there will be reaccuring wounds for the rest of my life...The only treatment is keeping them bandaged and clean daily...also for the lymphedema layered compression wraps....a lot like EB...I feel like I understand, that I am kindered, even if it's only to a very small degree, on how and what they feel....the pain...the confinement...as a family the struggle...the fear of infection...being separated by hospitalization...the anger...no cure...why me...why us....and I also feel like I can relate to your family and to you...because my husband and I also suffered the loss of our child...our baby girl....She was still born...a cord accident...during her delivery I died and was in a coma (I had what is called an amniotic embolism)...But for a reason only GOD knows I am still here!..We had 3 of our children before and our baby girl Bailee was born after (she is now 4)...I feel the anger you feel when you write...I feel your sadness too...and I feel your frustration...but I also feel your hope...your love for your family...the strength of your spirit...in your belief in GOD!...I did not know all year long, as I have been following your story and reading thru "Bella's Blessings", that we share the very same religion Christian, Disciples of Christ!...I just wanted to share all of this w/ you and let you know about my promise for EB...Share my story of loss w/ you...to let you know that even on your lowest day that you are not alone...and that I understand and I care...Thank you for sharing Bella w/ me!...Much luv <3 to your Family and to you!!...Stay strong!... <3 ... })ii({ *ps. we grew up in southern California...we are now raising our family in Colorado.

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