Monday, February 14, 2011

February 14, 2011: Happy Valentines Day!


When I was young, I used to play in the woods after school all year round.  In the spring, summer, and fall, I can remember running full speed through the woods for what ever reason.  I would be at full sprint when WHAM, my foot would get snagged by a root or vine and within a split second, I am flat on my face eating leaves.  One second I am at full speed, and the next, stopped dead in my tracks.

This is the grief journey for me.  Incidentally, in case you haven't noticed, I never stopped sprinting. :-)  I don't go for a job, I go for a RUN.  That is how I have always done life.  This is a perfect metaphor for my days.  Today, I went RUNNING through the morning, and WHAM, flat on my face after a phone call at lunch.  2 hours later, I slither off my couch to the coffee pot to infuse some energy back into me for the home stretch.

It can level me at any moment.  I cry more over losing Bella now than ever before.  The shock and numb has worn off and the sheer gaping wound in my heart just bleeds and bleeds and bleeds.  I hate the pain.  I rarely use that word, hate.  More accurately, I am sick and tired of the pain.  While there are millions of others who have had to endure pain in life for longer than me, I've never considered myself (nor has anyone else LOL) a "tough guy."  21 months of pain is quite enough.  I'd like it to be over.


On a happier note, if you haven't heard, baby Anton in Russia has found himself a set of parents!  Please go to their blog and share some much deserved love and support.  I am overwhelmed by the capacity of love and strength in their hearts to seek out a child with EB.  Absolutely inspirational.  I bitch about my pain, and they are seeking it out.  I am filled with humility.

Sorry I'm not my usual, upbeat self; the weight of EB has me down right now.  I'll get up, I always do and always will.  It's not whether you get knocked down in life, it's whether you get back up... AND it helps to have learned something while on your arse... :-o

God night.

Caught in the act of pulling off her "handages..."


  1. Although I can only imagine the depth of your pain, I can fully understand that it can hit often and hard, because even I, who never knew her outside of this blog, still can't believe that gorgeous baby is gone everytime I see her picture at the end of your posts.

    I think the work you are doing in Bella's honour is wonderful and I pray that you continue to receive blessings in you work.

  2. thinking of you and supporting you as much as ever.
    i'm sure it is after a while that pain hits harder, but don't worry, Bella and us are still here for you.
    love and hugs

  3. Tim,

    You'll stand up tomorrow and meet the challenges that come your way.

    The next day, you may stumble.

    And the same thing may happen the day after that.

    But the day after those days, the day after the days when you have been crashing around in the undergrowth, feeling clumsy and feeling tired and feeling GRIEF, you'll get up again and you will stride, with your beautiful Bella on your shoulders, to meet the dawn.

    I know you well enough to know that this is the truth.

    Sleep well.

    From the rooftops, to you, Bella, Ali and your lovely Ang,

    Fondly, always....

    You have the strength of thousands.

  4. Still thinking of you and your family daily - even though those thoughts are not written out each day!

    Sarah and family
    Chino Hills, CA

  5. Praying that you will find strength to get up again.
    Lots of love,

  6. I haven't commented in a long time but here I am. My heart goes out to you, I wish you still had Bella there with you, that the transplant would have helped, that you didn't have to feel that pain and grief. I hope you feel better tomorrow.

    Alexandra in Australia

  7. Tim, hugs! It's a tough time for you, do rest sometimes!

    Although it's a mad day for me today, I can't miss telling you something. This morning I was in a TV studio in my hometown to speak about the approaching Rare disease day - 28 February. The "show" started with a clip dedicated to the rare diseases, and there, among pictures of other children was a picture of Bella, which made me exclaim "Ah, Bella!". Your beautiful girl was there in the clip to raise awareness. It was good to see her familiar face. Don't cry, she is still here...

    The interview went OK,I think we put a good base to speak about rare diseases again. May be one day I will be able to tell Bella's story to my fellow-citizens? They must learn not only to pity the people with such conditions, but to respect them too.

    I am glad baby Anton found himself parents! Such good news! :)

    Thanks for all you do, Tim. You are great!


  8. Praying for you today, I hope you have a better day than yesterday. One day at a time. I'm out of things to say except that know we are here thinking about you guys and supporting you guys and loving you guys.

    Bella loves you!


  9. One day at a time...hell, one hour at a time.
    You guysbare still adjusting to a new "normal", with alis school schedule....bad days will still linger I'm sure. But look at the way you honor your daughter everyday. Its awesome.
    Anton's story seriously had me in tears, especially after reading that family's other blog. Another inspiring couple..I hope They make their way to anyone as quickly as possible.
    lots of love ...

  10. Still reading, Tim. You will probably be back up and running when you read this, but I'm sorry for your pain - and Ang's and Ali's.


  11. Hi Tim,
    Just sending some hugs and love your way. Miss seeing Ali's beautiful face at Joannie's. I am sure she is loving her new school and all the new experiences it is bringing her. Braeden is scheduled to have his surgery tomorrow. Thank you so much for all your advice. I am ready to go into CHOC as the STRONG Advocate and not the hysterical emotional Mother (or atleast try my hardest!!!) You are very right, the Dr.'s do NOT react well to that (-: Please just know that you have some many people following Bella's journey that is still continuing, you have accomplished some awesome things for EB. I get chills just imagining where this journey will go... You, Ang and Ali are amazing! Thanks for sharing-Peace and Love!!!!!

    The Davidson's

  12. More people than you can even fathom are so glad you manage to separate your arse from the ground every time they meet. (That sounds awful, but I figure you know the sentiment behind it.)

    Still thinking of you and your girls. More often than you'd think.


  13. Tim,
    I am so sorry you have been feeling the grief more than ever lately. I can't even begin to imagine the pain that you and Ang feel on a daily basis. But, I can be here for you, rooting you both on as you go thru this trial in your lives. You can AND will get thru this. You and Ang are two of the strongest people I have ever met. You inspire me on a daily basis and I'm not just saying that. You truly inspire me to be a better person inside and out! (I'm trying to get fit with you!) Lots of prayers for you!

    I am so excited that Anton was adopted!! I can't even express how happy that makes me. When I learned about him my heart just BROKE!! And I have been praying for him every day.

    Lots of Love,
    Amber, Craig, Malorie, and Liam
    The McLaughlin Family, CA

  14. Hi Tim-

    Of course you have a gaping hole - Bella was your baby girl, and NOTHING is going to fill that, but praise God that He will give you comfort and strength. You and Ang and Ali are an amazing family and God will provide you all that you need. And hopefully, all of us can be of encouragement to you, too! Please know that all of the Ringgolds are loved and prayed for - not just here in TX, but all over!

    SO GLAD THAT ANTON WAS ADOPTED!! I've been praying for that sweet baby and was thrilled to hear this news. Thanks for passing it along!

    Love from TX,
    Laura (for Team A)

  15. Hi Tim,
    Thank you so much for sharing this blog today. I'm very sad you are feeling so much pain but it does help that you are willing to stop and tell us about it.

    Not sure why? I don't like hearing that you are IN pain. It's obvious that any grieving parent would be. I think it's helpful because EB seems so devastating and hard to experience. Maybe it's your honesty and your spirit?

    Whatever it is, I'm proud of you and I pray that you are peaceful. Ya know, I think you are very special and your family is amazing.

    You are making a difference and I'm sorry Bella will not benefit from it but she has to be the proudest little girl in heaven.

  16. Lynne, Bob, Jack and BenFebruary 15, 2011 at 2:29 PM

    Tim -- Please know that our love is holding you when you've fallen into one of the holes along the grief journey, and helping you back up.

  17. Tim,

    Beautiful Bella lives on through you, your wife and your daughter... through all the work you do to honor her and help find a cure for EB. You are making a difference and Bella is the reason why. Because of her you are moving mountains, a small shovelful at a time. Bella's life was so sadly short, but she will never be forgotten.

    I knew you in Redding growing up, your mom & mine were friends (Betty Soltesz is my mom). I say a prayer for Bella everyday. Thank you for sharing her with us, it is a privilege to be invited to celebrate her life with you through your blog.

    Your tears for Bella are your right. You lost a beautiful baby... although she is becoming a face of EB that is helping inspire people to join your efforts... she was first and foremost your & Ang's daughter and Ali's sister. She was perfect and your loss is unfathomable. God Bless.

    Tracey Dauphin (Soltesz)

  18. I wish there was something I could say to make it better...unfortunately there isnt. I wish I could wrap my arms around in a hug...but the miles seperate us. So I am doing what I can and sending you a huge hug...can you feel it? I couldnt resist putting a little Bella twist on that...I hope you know what I am referring to. :) Sending you some extra love and hoping that tomorrow (today) is brighter.

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

    Denise WI

  19. Hi! I just wanted to let you know I am praying for you guys! I know how hard it is to lose a child but I also know what a comfort God has been to us.

    Please email me if you ever want to talk to my husband. I will give you his number or you can just email. I really think he would be a great encouragement to you!

    I am so sorry I am having to ask you to do this but I am learning about this whole adoption process as we move along. I need you to delete the parts of your blog that talk about us adopting Anton. The reason is it puts him on a "virtual hold". We don't have an official commitment to him yet so they have asked that we do this. Thank you all for your understanding. I am new to all of this and I want to make sure we are doing things right!

    We are going to continued on as planned but until it's official we have been asked to keep it on the down low.

    Thank you so much!