Sunday, January 9, 2011

January 9, 2011: Round the family it goes!


Well, a good bug is too good a thing to hoard.  One should share it with all they care about!  That's what we're doing right now in the Ringgold household.  I'm sure plenty of you do the same thing.  No biggie.  Just rotating bouts of crumminess.  First, Ali's gut, then my gut, now momma's gut.  Luckily, Ali and I are on the mend.  I did sleep roughly from Friday afternoon to this morning with very, VERY little action otherwise.  I shaved and took a shower yesterday evening thinking that if I looked and smelled better, I'd feel better!  HA!

What zany things have you done to con yourself into getting better?  Let's see who has the best one...

I finally finished a project that is near and dear to my heart this evening.  With my newfound vigor, I dragged the fam out to Joann's to get some fabric, came home, and finally put Bella's poster and foot prints in a proper frame on her wall.  I just miss her so terribly.  This big picture helps twofold.  One, I get to see that amazing picture really big, but two, it's like she's looking right into me saying, "Now daddy, you're not getting too overextended to make good on my birthday promise, are you?"

Boy, that rattles my ADHD cage right back into shape!

I don't know if you saw this on facebook today, but watch this video:

Folks, THIS is why I cannot rest until I have given the docs in MN every dollar they need to make their procedure safe.  Now, I don't give a you-know-what if you don't like it when I preach about raising money.  You watch this video.  Now you try and imagine the sounds they muted.  Now you try to imagine the PAST 3 YEARS going this way.

I remember Bella's first bath.  I remember her kicking a hole in her left leg that caused a wound that took 6 weeks to heal and was the equivalent of an 18'' blister on me.  I remember that moment.  One of many.  I remember the day I was trying to change her diaper, and while holding her foot by the bandages, I accidentally pulled the boot off, and in doing so split the skin on her foot from toe to ankle.  I remember having to get Angelique to hold her while I ran and got our neighbor who is a nurse to help us redress the wound, all while Ali just watched.

Bella may be gone, but those memories will haunt me forever.  And she had it good!  I look at this poor girl Daisy.  I think of the sounds of Payton's screams as his mom would put him in the bath on the TV special.  Folks, the stories are e-n-d-l-e-s-s.  I cannot wake up on January 1, 2012 as if life just goes on.  NOT ONE MORE YEAR.  NO.  THIS is the year we crack the code.  THIS is the year Dr. Wagner and Dr. Tolar have the funds they need to isolate the stem cell that IS ALREADY WORKING... already healing... already creating miracles.


In line with with tonight's sermon ;) I would like to share with you an amazing letter that came in the mail to Ang and me yesterday.  My big sister Mary, as you all know, lives in North Carolina with her amazing family.  I remember telling Mary when I moved cross country in 1995 that when I grew up, I wanted to raise my family like she and Tom did.  I have so much respect for them as parents.

Anyway, yesterday, one of Mary's best friends from college wrote us.  She explained that she began following our blog the day Bella died.  She went on to tell me that she considers me the male version of my big sister Mary.  What she didn't know in sharing that was what I just told you about 1995.  It was the nicest compliment anyone could EVER give me, because my sister LIVES for her family and I LIVE for mine.  Not that she or I are in any way unique from anyone else, it's just what means the most to us.  Family first.

Mary's friend Donna went on to say that in lieu of Christmas gifts, she asked everyone in her family to write a check to PUCK.  Inside the letter were 3 checks totaling $1,100.00.

Here's what I am learning:

EB doesn't break for the holidays, but neither does Generosity,
Nor Charity,
Nor Love,
Nor Abundance.

By October 11, 2020, there are various treatment options for children with EB, and nobody ever has to die from this disease again.

By May 21, 2011, Dr. Wagner and Dr. Tolar have 3 million dollars to fund all the research required to isolate the working stem cell, and thereby make stem cell transplant for EB kids SAFE as well as effective.

This is what you can count on.

God night.


  1. I hope you all are feeling better very soon! Coincidently, just as Angelique has been doing, I've been going through old pictures too. Even found some of you Tim! But mostly Steve and Angelique. Good times. Steve and Angelique were so cute and loving with their baby brothers. Don't worry Angelique - I don't think I'd know how to post them :) However, you never, ever, take a bad picture!
    Love, Terri

  2. This post is GREAT! Just GREAT. Especially since I just signed up to host a pampered chef party and 15% of all the sales are going straight to PUCK. My holiday letters are still in the works, but going out soon!

    Hope you all feel better!

    Much Love,
    Amanda Schauer

  3. Hi Tim: Sure hope everyone is feeling a little bit better. I hate winter just because of all these nasty germs floating around.
    I will be praying that you are right and that this is the year for a cure for this awful disease. No child should have to die from EB ever again. Watching spunky Daisy on that video and my heart just breaks.
    Meg has raised almost a thousand dollars for DEBRA with the fund raiser for Leah. We sure would like to give DEBRA a nice check in honor of Leah's 2nd birthday. We miss Leah terribly, it still hurts!!!
    Please take care. Love and Hugs Love Leah's Nana

  4. O gosh...I got nervous when you said you wanted to "share a letter"!! Very sweet and so true about you and Mary and I am sure Angelique since you married her! Little did I know you would receive that letter on the 8th anniversary of my husbands death...I spent the morning at the cemetary talking/crying to him that I wish he was here to see how big and wonderful his children are...

    Blessings...Donna in NJ

  5. Just a thought. I read a few blogs, some have ads, some don't. I honestly don't notice the ads or if they are there or not. There is a blog I love and the writer has just lost her husband at the age of 31, she has 2 kids and one more on the way. She has a couple blogger friends who have ads on their site and they are donating all of the money they receive this month to Vee. I'm not sure how much is actually generated but my understanding is that they get money for every hit their blog receives. I know you get many hits on your blog, and this may be an option. I have read several blogs that want to keep their blog "ad free", but I honestly never notice if there are ads or not... Hope you are all feeling better, my family went through this "passing of the bug" during Christmas vacation. Good luck with all you do, and thank you.

    A reader in the CA

  6. I love the idea of an ad on the side...where you get $$$ for every hit. Worth looking into. Great idea reader in CA.

    So hope you all are feeling better. Nothing like all getting sick at the same time.

    I watched the video...I just cant imagine living a child or as a parent that wants nothing more than to take the pain away. EB has to be a disease of the past.

    Sending my love to all and sweet kisses for Ali.

    Denise WI

  7. Hi Ringgolds - SO sorry you're still under the weather! Hope you're all better very soon - that kind of sick is just no fun at all.

    Payton's screams at bathtime still haunt me. I read Courtney's blog and just grieve that Tripp can only sit up for a few minutes at a time. Praying that Dr. W and Dr. T will get what they need THIS YEAR and that they can make this safe and effective for anyone who has EB.

    Love you all!
    Laura (for the Team)

  8. Hey Ringgolds!!! I am sorry I have been MIA for the last week. I wanted to let you know that I am still here. I continue to pray for your family every day and I pray that we make our goal in raising the money needed for Dr's Tolar and Wagner to find the cure for EB. I'm sorry you guys aren't feeling good today. That's a bummer. I have been dealing with sick kiddos for about a month now. No fun!!

    Lots of Love,
    Amber, Craig, Malorie(2yrs), and Liam(1yr)
    The McLaughlin Family, CA

  9. I have to take a break from the EB blogs sometimes because the enormity of the pain these kids are in is just too much for me to handle. The video of Daisy is heartbreaking and we can't even hear it. I love your new project over Bella's bed. It is beautiful. Hope everyone feels better soon.
    Love, Jen.

  10. Hoping that you and your family are feeling better by now. I love Bella's picture; you did a good job.
    Praying that the doctors will find a cure for Eb soon.

  11. Stil thinking of y'all.
    Can you help this lady with her question?
    She has a Trisomy 18 child with developing skin issues - thought y'all might be able to suggest a less irritating dressing.

  12. I heard a song today. I'll be honest, it first made me think of my two angels, but then it made me think of you, your family and sweet Bella. These are the words...

    By Matthew West:

    Don't be mad if I cry
    It just hurts so bad sometimes
    'Cause everyday it's sinking in
    And I have to say goodbye all over again
    You know I bet it feels good to have the weight of this world off your shoulders now
    I'm dreaming of the day when I'm finally there with you

    Save a place for me
    Save a place for me
    I'll be there soon
    I'll be there soon
    Save a place for me
    Save some grace for me
    I'll be there soon
    I'll be there soon

    I have asked the question why
    But I guess the answer's for another time
    So instead I'll pray with every tear
    And be thankful for the time I had you here
    And I wanna live my life just like you did
    Make the most of my time just like you did
    And I wanna make my home up in the sky
    Just like you did
    Oh, but until I get there
    Until I get there