Saturday, March 5, 2011

March 4: Moving On...

Can you see the little translucent heels to finish the ensemble off?  I'm in trouble...


Thanks again to all those who have sent us good wishes for the rest of Angelique's pregnancy!  It means a lot to us, as this is obviously an exciting, but also extremely nervous time for us.  We have really grown close to you all through this incredibly intense period of our life.  Again, all I can say is that we were not trying for this, and as one person put, the fact that we were even capable of conceiving under the stress of grief (this was back in November mind you) is beyond a long shot.

Regarding the increase of negativity in the comments despite me asking people to please respect our request, I am blown away.  I shouldn't be surprised I guess.  There are people who seek to drag you down no matter what level you try to rise to.  Us?  We're tryin' to rise above the death of our daughter.  We're tryin' to raise awareness of EB.  We are tryin' to fund the work at the U of M so that 10 years from now, no child ever has to die from this disease again.  I am tryin' to write about our journey as openly as possible so that others may find some insights or inspiration in what we do with what we're given.  This is what we are up to.  Anything else is your story, not ours.  So, thank you to for those sharing about the different comment requirements.  No more anonymous commenters.

To the person asking about the amnio, great question.  The reason for the amnio is so that if the baby does have EB, we can plan the C-section to be safer than it was for Bella.  They pulled the skin off her armpits, hip flexors, and left buttock because the delivery team was wearing dry gloves.  We'll also be able to have the EB NICU nurse scheduled, we'll be able to pre-order wound care supplies... we'll be ready.  If the baby doesn't have EB, we'll be able to breathe easy.  Either way, we will best prepared for the baby. Also, between the CVS and the Amnio, the amnio was recommended as a less invasive, less chance for complication from the procedure.  I think if someone was going to abort based on the results, an earlier CVS is a better choice, but if someone isn't, the amnio is safer.

Daddy's fabulous socks of the day!  Rock on!  I know, I know, very sexy.

Another good question asked was if we would go through with the stem cell transplant again.  Good question.  We wouldn't go through with the same procedure Bella went through, meaning, we would wait till he/she was a little older (under 2 has NOT been an ideal age at all to this point).  Also, I know that Dr. Tolar has proposed a new chemo regimen in light of the complications to Daylon, Bella, and Elle.  I pledged to raise this money for the Drs. about 7 weeks before we found Ang was pregnant, but it makes it that much more personal if we do have a child with EB, because the sooner Dr. Tolar has the funds, the sooner he can move forward with the next THREE versions of the treatment he has already conceived.  He is literally just waiting on the funds to put these next versions to the test in the lab.  First, they need to be tested in the lab, and if successful, can then be administered in the hospital.  These next steps, PARTICULARLY steps 2 and 3 will EXPONENTIALLY reduce the level of danger to the child.

Lucy with Ali's skirt and Bella's Arsenal Bear... looking less than thrilled by Ali's staging...

I can't remember if I shared this or not, but in Bella's 100 day biopsies, they not only biopsied her skin, but also her mouth and esophagus.  They found anywhere from 3-24% of the skin to be Ali's cells.  That means in certain parts of her body, 1 in 4 skin cells were already Ali's.  This is so promising and yet so heart breaking, because it shows that the transplant worked.  It's not whether the procedure works or not, it's whether the child can evade the dangers of the chemo.  In the newer transplant models Dr. Tolar has proposed, the amount of chemo necessary is sooo much less.  I look forward to that day for ANY family.

In the meantime, we do as much as we possibly can.  We love each other, we love on Ali, and we love our new baby in the belly.  Like me or hate me, I have a big mouth... but if you want the world to turn its collective attention on a little-known but breakthrough stem cell procedure in Minnesota (and NO - NOT at the Mayo - you wouldn't believe how often we get that) you gotta make some noise.  I've known all along that there is one thing that I will have to learn to deal with which is other people's opinion and criticism of how I go about helping fund the safe treatment of kids with this disease.  I still have much to learn, and every pot shot taken at me still hurts, but I'm not gonna stop being me.  All I know is that when I die, and I meet Bella again, I'll be able to say I never gave up.

God night.


  1. Love your comments. Love your open hearts. Love your honesty. I love that you WILL say to Bella again that you all never gave up. We are so thrilled for all of you for this continued incredible journey of life, love, and loss. we are inspired daily. We pray for the health and safety of all of you at all times. Our priest said yesterday, "Do not stand upon the slippery sand that is other peoples opinions or comments, but stand up on the firm foundation of our Lord." I was immediately brought to happy tears and thought of you all!
    Shalimar, David, Salvatore and Valentina Licona

  2. Tim... Bravo, bravo! Tears in my eyes... again your eloquent writing moves me. I was worried how the negative comments would affect you and I am glad that you will keep being you! I personally was/am having trouble wrapping my head around why people would be so hurtful. I am glad that only members can post now. You have to know that so many of us want to be a positive, supportive force in your life and thank you for all you are doing.

    You put it perfectly... EB needs a big voice! I am glad that you keep your eyes on the prize (a cure) and tune out the people that would try to tear you down. Dr. Tolar sounds like he is brilliant and I am so proud that you are helping countless other families on their journeys.

    I am sending many good prayers...
    for you, for continued strength...
    for Ang, for a pregnancy of serenity & good health...
    for fashionista Ali, with her beautiful light,
    for Bella, who's face invokes love and grace and hope
    and for your new little one... God's plan.

    I know Bella took this little one's soul by the hand and said, "Yes, this is the Mommy and Daddy and big sister for you... you will be treasured and loved. I will take you to them, just follow my heart"...

    Peace and love to you, Tim!

    Redding, CT

    PS… This is to those who can’t imagine the big picture of Tim’s efforts. There were these sisters, Nancy and Suzy. In 1977, Suzy was diagnosed with breast cancer. Nancy made Suzy certain promises… to end the silence about breast cancer (remember, this is the late 70’s and early 80’s)… to raise money for scientific research… to promise to one day cure breast cancer for good. A sister’s promise to her dying sister. This sounds like Tim, doesn’t it? Bringing attention to an unknown disease, fund research, find a cure. Well, Nancy’s promise to Suzy gave birth to a little organization called Susan G Komen for the Cure~ only the largest grass roots charity in the world! To date, having raised 1.5 BILLION dollars. All from a sister’s promise. Dream big and shoot for the stars Tim. All for a Dad’s promise.

  3. Jeeze, i knew you were pregnant, but i didn't read the blog this weekend and missed all the action! :-P
    Truth be told, my first thought was "why take a risk and not go for embryo selection instead" but that was just that: a thought. I guess you would never contemplate that option, or abortion, due to your religious views. I simply bring it out now because i believe we all can be open about our thoughts. But heck, leaving rude comments and judging people is completely unacceptable.

    Seriously, the blogging world sure has its share of weirdos...

    I sincerely congratulate you on your new baby, and i hope he/she will be EB and hence pain free, but if that is not the case, i hope it will be a beautiful butterfly baby who will be make you the happiest parents and will make ali the happiest big sister in this world.

    Love and hugs
    proud member of Debra Spain

  4. WOW.. Just checked in on your blog...congratulations!!! The odds of an EB free baby are an your side..Your family is very similar to ours..we have our oldest and first child..Casey our middle child with Eb..and an unexpected buy greatly welcomed third one ....Becky was born without EB..we opted for the CVS sampling only because we wanted to know early and they told us two-four weeks for the results but it ended up taking almost 6 and only being able to pinpoint one mutation and never could map the second...Luckily the one they could tell us if the baby carried was negative so we knew without two positives, she'd be fine...And...Becky's birthday is August 26th..and your baby's due date is the 26th...So, its a lucky day!!
    Don't let the negative comments bother you..Not everybody is going to understand and agree with how you feel or think, but it's ok to hear it..When you put your life out for everyone to participate in, you have to expect there will be some who disagree...those comments have their purpose, just keep smiling..I thank you for always sharing Bella's story openly and honestly and allowing us to share in your journey...Best of luck ..we're always thinking of you guys....

  5. EXTREMELY well spoken, as always. I haven't ready your blog all week because we moved to a new state, so I was so elated for you guys but SHOCKED at the comments I was reading. I feel bad for the nice anonymous commentors but for the nasty ones not so much! I am so excited by your news!! Many congratulations to you & Ang. Thank you for continuing to blog & share your story with the world. We pray every day, not just for our nephew Daylon but for all of our EB kids & their families.

  6. You already saw my original comment - but I also wanted to say it is quite amazing that Ang was able to conceive in November! I hadn't even really thought about that until you pointed out. :) I will be waiting to hear about all the test results - will you let them tell you the sex of the baby as well or do you wan to be surprised?


  7. Hoping you are having a restful weekend. Thanks for your response to my message. :o)
    Don't let the turkeys get you down.


  8. Thank you for all the information you gave! I am so awed by how you rise above the "stuff" that some people send and tell us how it really is! So proud to know your family!

    I continue to be IN for the long to raise awareness and fund!

  9. CONGRATULATIONS! I hadn't checked in with you in a couple days and WOW, what exciting news. The odds are in your favor and regardless of what the testing shows (EB or not) you guys are the best parents for this little baby! Bella is going to be a big sister!! :)

    St. Peter, MN

  10. Continue holding your head high, You are an exceptional speaker and great person, and with the right connections I know you will raise the money for the cure to EB.

  11. Tim,

    I have been what you sweetly refer to as a 'lurker' for a few months now and I have followed from time to time ever since. I haven't felt as if I had anything useful to contribute and so have not commented before. Your words are searingly honest and often very powerful in ways perhaps even you do not realise.

    I want to support your request for positive comments all the way from England! There is more than enough negativity in this world already. We are not all as articulate as you but we all come to the page with our intention. I suggest a few moments taken asking ourselves what our intention is before posting a comment is the way forward.

    My intention is to congratulate you and your family on your new baby. To show my support for your blog and its contents and to remember Baby Bella's life.

    I am sometimes left deeply moved by your words and faith and I wish you all the very best for the future.

    An English Grandma

  12. Congratulations to you guys! That's very exciting news - thoughts and prayers are with you for a happy, healthy baby.
    Rose Greenville NC

    This is for the PUNK - yes, YOU, many times do you need to be told - GO AWAY ALREADY.

  13. Good morning! Love all these great pics and those FABULOUS socks! :)

    I woke up this morning with new Baby R on my heart, so know that he/she and the whole Ringgolds family was lifted up on an early TX morning (too early, but that's ok!!)

    Hope your Monday has gone well - love to Ang and Ali!

    Love from TX,
    Laura (for Team A)

  14. Whoaaaa, it's been a couple weeks since i have visited your blog, and I am sooooo incredibly elated for your family!!!!! Prepare for my most mature comment in recent times... POO POO on the negativity! Phew, I said it!

    Enjoy the pregnancy, and all there is to come. I'm sure emotions will hit extremes, but I guess that is expected in all major life changes. Again, congratulations to all of you!

  15. Hey Tim: first thanks for answering the question about the amnio. I to was wondering the samething and your explanation has clarified evertything. Ali is such a beautiful little girl. Hope everthing is going well for Ang. Have fun watvhing Arsenal tomorrow(because I'm sure you will be). I'll be watching it with but rooting for the other side ;)

    Jeni (Madrid)

  16. Very Happy for you and your family!! Congrats on your new little bundle of joy coming soon and may all your dreams come true and your fears be subsided. Children are a blessing and you are being blessed again.

  17. Again, I'm really happy for you guys. Considering the fact that you weren't trying and the stress you were under, it's a miracle that it even happened. So, it was a miracle meant to happen. Forget about the negative comments. Those people don't really know what they would do or feel if they were in the same situation. I'll pray for a healthy baby, but only God knows at this point. Maybe, there is another EB baby waiting to be born that needs some very special, loving parents.
    Love and prayers,
    Carla Spradlin

  18. I know I already told you how happy I am for you all...I like the term "a splash of sunshine" used...elated. I am simply elated. :)

    Loving Alis outfit and Lucy's too! Even if Lucy wasnt as thrilled as I am sure Ali was to dress her. We dressed a cat or two when I was little.

    How I wish I could write as well as some of your other followers. This comment from above says what my heart has been telling me....written by Tracey..."I know Bella took this little one's soul by the hand and said, "Yes, this is the Mommy and Daddy and big sister for you... you will be treasured and loved. I will take you to them, just follow my heart"..." Thanks for the beautiful words Tracey.

    Sending my love to all and the sweetest of kisses to Ali.

    Denise WI

  19. Just wanted to say congratulations and that I am so excited about this precious gift of God that will be joining your family later this year! Many blessings and prayers, Alane

  20. Hey, thanks Denise, you are sweet....

    I believe in my heart that is what happened and tried to put it into words. How could it be any other way? Of course Bella had a hand in this blessing, she is a conduit through which God works... in many ways! The love and joy she brought to her family that will last forever more, the inspiration and motivation she brings to people all around the world with her story, her soul sharing with a new soul her family~ Bella is and will always be affecting those of us still here and her journey is changing lives, spiritually and literally... a angelic pioneer on the road to a cure to EB.

    Redding, CT