Wednesday, December 8, 2010

December 8: Cramming and still standing... kinda


Well, thank you all you lurkers and regulars out there!  PLEASE keep those comments coming!  Boy, they REALLY help a lot.  You want to know how to help?  Comment.  From the first day we read the comments on our CHOC CarePages site, we've been fed spiritually by your comments.  To share the walk with so many, it is so far beyond what we could have imagined.  It is wonderful.  The most peaceful moments of my day are when I read your comments of support.

I have a request as well.  I know that you are free to write whatever you choose, but I humbly request during this time that you limit your comments to comments of support.  Would you be willing to do that?  Many of you have commented on how vulnerably I write. Well, yes, it's extremely vulnerable, and combined with the unimaginable amount of grief we're experiencing at the moment, I know for myself, I'm really extra sensitive.  Thank you for understanding.  I really appreciate it!

Okay, gotta keep it short.  I was gifted a 4 day seminar in Los Angeles on how to get booked to speak at colleges, universities, conferences, etc., and how to develop my public speaking skills to the next level.  The training usually costs $2,500, but the gentleman who is running it, James Malinchak, invited me as his guest when he heard my story at Joe's 25K Group meeting in LA last month.  Pretty awesome!

Public speaking is going to be a big part of 2011 for me.  Ang and I can already see the writing on the wall there.  It's the fastest way to raise awareness and funding for further research.  I'm also good at it, and have already had extensive training at it, but the piece I have never put together is how to get booked and paid the big bucks for speeches, keynotes, etc.  I'm really excited to add this to my arsenal of ways to make our vision a reality!

Then, tomorrow night, I am the closing speaker at the UC Irvine Medical Center's annual Cancer Patient Holiday Dinner!  I have a KILLER presentation on music therapy ready to roll complete with interactive music making by all 300 in attendance!  Can't wait.  GOTTA STICK TO MY TIMELINE... man is THAT a mantra I have struggled with forever!  LOL.  I have 10-12 minutes, but really, I could get squeezed, because we have a REALLY full program that has to end by 8:20, so I really get however much time there is between when I say, "Thank you, Alan...." and 8:20!

I think it is Wednesday, which means I think I just worked (albeit for maybe 1-2 hours at a time) at the hospital for three days in a row now.  Boy, it is going to be GREAT when I am a bit further out from this intense stage of grieving.  Right now, it takes a lot of effort and energy.  It's going to get better though.  I am so happy because I am playing my new classical guitar in the same treatment rooms I used to play my old guitar, and I can hear the difference in the room!  The new guitar is so much fuller and rounder sounding, it fills the rooms quite nicely.

Moment by moment.  Hour by hour.  Day by day.  Our lives move along in and out of pain, joy, sadness, boredom, serenity, excitement (Arsenal won today, for example).  Just remember not to stop the train at any one of those stations.  Keep moving, because this too shall pass, both the good and the bad.

I miss you Bella.  I can't wait till that moment when the eyes I stare at aren't from a photo, but are yours in front of me when I arrive in Heaven.  Man, that is just gonna be SWEET!

Know what else is gonna be sweet?  When I can look at my bucket list, and as my eyes fall on "Cure EB," and I can say, "DONE."

By October 11, 2020, there are various treatment options for children with EB, and no child ever has to die from it again.

Amen.  God night.


  1. You and Ang are some of the strongest people I know (and Ali is just awesome). It never ceases to amaze me how, even when the grief strikes so bad, when the pain is so strong, you don't lie down and give up, instead you embrace it and then let it pass. Not many people can do that.

    God is with you every day, in every step you take, in every moment, good or bad.

    Thinking of you,
    Jennifer, Sweden

  2. Each day I read and think 'Today, I will comment' and then I don't! But today is the day! Thank you so much for sharing your beautiful girls with us. Your story is both heartbreaking and inspiring. Gill X

  3. Hey Tim, I am a Liverpool FC fan myself as my parents and family are all from there, good win for you guys! you are on top of the EPL ladder now!

    Premier League table

    Team P GD PTS
    1 Arsenal 16 16 32
    2 Man Utd 15 19 31
    3 Chelsea 16 19 30
    4 Man City 16 9 29
    5 Tottenham 16 3 26
    6 Bolton 16 5 23
    7 Sunderland 16 2 23
    8 Liverpool 16 1 22

    May be Bella is putting in a good word for them xx Bee

  4. hmmm,my above post is in support of you guys and Arsenal :P

  5. I have not posted in a while, sorry. I am sitting by a warm fire thinking of your family. God bless all of you.

    Cairo, Ga

  6. Thanks for keeping us up-to-date. I'm loving the pictures and all that you're doing to help others.
    God Bless you and yours.

  7. Once upon a time long ago when I was going through the devastating throes of a marriage to someone I loved so much ending, and found it hard to want to go on with life, someone said to me "You'll be fine". Those words made a tremendous impact on me, I stopped and just stared at the person while the words soaked into my brain and heart. And those 3 little words helped so much and I still remember them today.

    Tim and Angelique, you'll be fine. You'll never be the same......but you'll be fine.


  8. We continue to remember your family in our thoughts and prayers. One breath at a time. When it gets overmuch, picture the faces of beautiful butterfly children who will benefit from your journey... our Sweet Caroline is one of them. Would love to send you a picture of her; let me know how if you think it would help. (

    Adrienne Provost
    Palatine, IL

  9. We are here every day (in the back row) without saying a word. We are very proud of you and what you are doing. Remember, it is one day at a time and sometimes one minute at a time. God Bless!!

    Thomas & Elaine

    P.S. We were so glad to see you in church on Sunday. We have missed you but know it was not easy.

  10. Still here, still reading and still praying. I can't wait to hear the news of EB being cured either what a day of rejoying that will be!

  11. Tim,

    I'm not sure if I made things worse with what I wrote last night - I'm not sure exactly what you mean when you request comments of support only.
    If I am a culprit, I'm truly sorry.

    Fondly, Jane

  12. Lurkers and non-lurkers from near and far are here with you, for you!

    love and hugs

  13. Just letting you all know I think and pray for you everyday. Today I pray that the grief is a bit easier to bear. Good luck with your speaking seminar. How cool!

    Chapman '07

  14. We are all here to support you guys! You are constantly in my thoughts and prayers. Like this morning as I put on my "fabulous socks of the day!" My boss commented that they didn't match my outfit, and I said "I know, but they match my mood and my thoughts!"
    Thinking happy peaceful thoughts for you all.
    Love you,
    The Vanderbooms

  15. Put on your Tim Awesome cape and knock their socks off a the holiday dinner!! You will do music therapy proud!

    Michelle K.
    From Big D

  16. Good luck with your workshop. I know you'll do well. Wish me well co-facilitating the Grief Retreat this weekend. We'll miss having you with us. This will be a real challenge for me.
    Thanks for that picture of Bella. Can't ever forget those beautiful eyes, her gaze, or her delightful, vibrant self!

  17. That is fantastic that you were gifted the oportunity to attend the seminar! God is certainly working his wonders to map out the divine purpose he has for you...amazing! Our thoughts, well wishes, and prayers remain with you always.
    The Gleason's

  18. Like Jane I am unsure if my last comment seemed less than supportive... I'm sorry if that is the case! I will keep things short and sweet: love those pics of Ali and Bella, good luck with your presentation tonight, and I am thinking of you all daily! :)

    Cara in Tucson

  19. Ahhhh....that is how life is. Sometimes we are more sensitive about things than at other times. (Ask any woman with pms...) Surround yourself with people who support you rather than those who think they should teach you a lesson and purposely jab at those sore spots to make you "grow up" and "get over it".
    You're doing a good job, you & Ang. Cool socks you got there. Bella would love them.

    Still thinking of you!

  20. I too am unsure if my comments were viewed as unsupportive or insensitive. If they were, I am truly sorry. I would NEVER want to add to your burden in ANY way. I will keep it short as well should I comment again.

    Be well!

    Elk Grove, CA

  21. Way to go Tim. Will be saying extra prayers for you tonight--actually I am in Australia so don.t know when it will be so will just have the candle burning non stop. I would be interested to hear about the music therepy, I am pretty sure we don't have anything like that here--unless you call my singing on the ward therepy!! if you knew how badly I sing you would feel really bad for my patients. Beautiful little girls you have, and a Mommy and Daddy fighting so hard to be brave and stick with it, they have. My prayers and support continue, Dawn in Canberra,enjoying a very wet summer after aloooog time of drought

  22. So excited for you to go to this conference and increase your skills, to help fulfill your mission with Bella!

    Again please know that everyday my family is thinking and praying for your family!

    Love the snow bunny! Will she learn to ski over the trip? Also love, love, love today's picture of Bella!


  23. I'm just a random poster...a friend of Sara Cooper! I do check your website EVERY morning. It's the first thing I do. Everytime I read your posts, it's so easy to see why Bella picked the 3 of you for her family! You WILL be the reason EB will be cured one day! I love seeing pictures of Bella and that Ali is so stinkin' cute! What a blessing they both are!

  24. Good luck today- you will be fantastic!!! Everyone will be drawn to your words....Bella is with you and watching over you, while we are all here praying for you and cheering you on! I pray today and always, that you will be clothed with strength and peace! Always thinking of my fab & fav 4!!!

  25. Reading the comments of today I have the impression that we are all a bit worry about what we write and if it is that what you need ...
    Praying for peace to your mind and energy to your body.

  26. Hey, sweet family...

    Nope, I haven't fallen off the face of the earth, but it's been a while since I've commented. That's not to say it's been a while since I've thought of you all or read your musings. The past couple of weeks have just been crazy for me and thus hindered me from taking the time to let you know I'm still here, rooting for you.

    Wishing you well, Tim, on your public speaking venture. You are indeed a "natural" and people will be blessed by hearing you. I hope Angelique will join on some of your presentations because I am also moved by her eloquence. You two make quite a team!

    In this Christmas season we often hear the words "joy" and "peace", and I certainly pray that your family can experience both of these emotions as you continue on your journey.

    Take care, Ringgolds.

    A friend in NC

  27. Hi Tim! Been a little while since I posted, but I still start every day with your blog, and end every night missing our beautiful baby girl, I just love the pictures of her, every one! One. Day at a time seems so simple, right? It is simple, but its not easy...prayers for sweet memories to ease your are all an inspiration to me to be the best I can be, every day. Love and blessings! Always...

  28. First of all I have to tell you I love your fabulous socks of the day! Awesome. Also, I love Ali's snow suit. Looks like she is ready for your trip. That is awesome that you have so many great things coming up where you get to tell people about our Bella and raise money for research.

    Just keep swimming, just keep swimming.

    Lots of love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, Ca

  29. You are an amazing man. This world is beyond blessed to have a smart sweet soul like you. I hope you and your family are well.

    Jen from Louisiana

  30. I am so excited about the seminar you will be attending. I always thought you would be good as a motivational are so motivational through your blog and having seen you speak...that just is where I picture you (not that you see you there...or that you would ever be one:)).

    Beautiful picture of Bella. Oh my gosh those eyes. So beautiful.

    Speaking of beautiful...Ali looks smashing in her ski clothes.

    I got on the bike for the first time today. Three times at five minutes each was all I could turned my legs to jello. Tomorrow I shoot for 7 minutes three times and keep going. I can see how it could become something I crave to do...we just need to get a more comfy seat.

    Sending my love to all and sweet kisses to Ali. Btw...the package should go out this weekend or early next week.

    Denise WI

  31. Hello, Ringgolds!

    LOVE those pics of both the girls. And am sharing that 2020 vision with you as well. I'm praying for God to continue to restore your souls and give you peace. (And if your schedule of late is any indication of what is to come, you're going to be VERY busy, so you will need His restoration daily!)

    I'm heading to bed (getting close to midnight here!) Hope your weekend is wonderful!

    Love from TX,
    Laura (for Team A)

  32. I still cry everytime I see the photos of your beautiful Bella at the end of your posts. I also don't understand why God decided to take her Home so soon - we'll have to ask Him one day. Thinking of your family in this difficult time. You are an inspiration to many. God bless!

  33. Hi,

    I have experienced extra sensitivity lots of times before. I am glad you mentioned it, and I can sure appreciate your request!

    Thinking of you and sending big ((((((HUGS))))))

  34. As a long term reader,supporter, and praying for your family woman, I just wanted to tell you I am remembering you all this Holiday Season. As you continue your journey through life I wish you all peace and much happiness.
    Janet from CT