Sunday, May 27, 2012

May 27, 2012: Happy Birthday, Bella!



Heaveno!

Dear Bella,

Happy Birthday, sweetie!  Today, you turn 3.  Today at church, we celebrated Memorial Day.  Gosh, it was such a confusing, time.  There we were, in our awesome I REFUSE Epidermolysis Bullosa t-shirts, handing out the amazing cards, both made by Christie Zink, telling your story to friends and new acquaintances.  One wonderful church member walked up to me with a donation check!  She didn't know it was your birthday.  She saw my other t-shirt a few weeks ago... the one with your big happy picture splashed across the front of it... and got inspired and read our blog.  That was really neat.












Tomorrow is Memorial Day, where we remember those who have laid down their life for our freedom.  It is a very special day.  Every Sunday, we remember Jesus, who laid down his life for our spiritual freedom.  Today, we remember you, who laid down your life for all other EB kids after you.  Words of remembrance and sacrifice and love were brought up today repeatedly, and I couldn't help but think about you the whole time.  I felt like I was attending your memorial service in a way.  It makes sense; at the memorials we held for you, your mommy and I essentially hosted and ran them, and so we really didn't have 'the space' to break down and mourn your loss.  Well, today, sitting in that pew, wearing black, I felt like I finally had a chance to attend your memorial.  I cried.  A lot.  Our friends reached over and held us. We had a guest violinist play two amazing pieces with our music director accompanying on the piano.  They were also called Remembrance, and Sacrifice (from Schindler's List).  The music was so pretty.  I let the different speakers' words, and the wonderful music wash over me, and minister to me.

How are you?

I wonder what you'd be like at 3.  Funny, energetic, full of life.  Would your EB have progressed yet?  Would you ever have learned to walk?  I have a hard time visualizing you... do I imagine you at 3 post BMT or as if it never happened?  I'm confused.  I also have a hard time visualizing you at 3 because it feels like you were never supposed to be 3 this lifetime around.  It just feels like you came, did your job, fulfilled your purpose, and headed back home.  I know you understand what I mean.  It's as if you are so much older and wiser.

I think the worst part is that you have been gone officially longer than you were here, and that time will continue to rip me further and further away from the moments where you were alive, not just laying in a hospital bed sedated.  My memories of you that are not videos and photos are fading away.  Oh, how I hate that.  It's such an awful feeling, I mostly try to ignore it.  I feel like a bad father, and a bad daddy.

I apologize.











I know that you can see what we are up to down here, and I hope that the butterfly garden Ali and mommy made for you yesterday made you smile.  It sure made me smile when I saw it this morning.  Ali loves you so much; I'm so proud of how well she still holds so much of you in her life and in her heart.  She shared about her t-shirt in her children's worship and wonder class this morning, and when the other kids found out she was walking to raise money for a cure for EB next month, they all pledged to help her by bringing in some of their allowance money next weekend.  It was adorable hearing that these little ones are learning the value of stewardship in a real, meaningful way at such a young age.







Tomorrow, I'm playing the Star Spangled Banner on guitar, along with a soloist and a vocal quartet for a Memorial Day service here.  It's the first time I've played that piece on guitar, and it's the first time I think I've participated in a Memorial Day service.  I am humbled, and nervous.  I hope we do the day and the service the justice it deserves.  If you're not busy, will you come hang out and make me and my fingers calm and precise?  That would be great!

Anyhow, life is good here.  We are blessed with good friends, family, and a faith community that is just beyond wonderful.  We had a wonderful BBQ lunch with two other church families today, and it helped us tremendously to be with friends on such an emotionally intense day.  There was a ton of laughter, music, great food, and sweet tenderness.

I miss you, honey, but I'm glad you are in heaven.  There's a lot of work for us to still do down here, but we're making amazing progress in treatment and fundraising so every kid that's come along since you with EB genuinely has a better shot than you did.  You laid down your life for others, so the docs could learn than busulfan can't be used in kids with EB.  What a difference that knowledge is making.  You did your part as a soldier in the war on EB, and we honor your life and service on this your birthday by saying that we are making good on our promise that the doctors have the resources they need to keep this research going so that one day, there are various treatments for EB, and nobody has to die from it again.

With this challenge grant, if we can reach the full amount of $450,000, that will double to $900,000 in research funding.  If you add that to the the roughly $200,000+ they've received in the past year and a half, that will take us over the $1.1 million mark, which will be $50,000 more than Dr. Tolar first asked for when we asked him what he needed after you died.  I feel like if we can hit that mark, we will have made good on our promise.  I know that I will feel complete, and won't need to 'fight EB' on your behalf anymore.  Help me stay the course the rest of this calendar year, since the challenge grant goes away on Jan. 1, 2013.  I've been really struggling lately as you know, and I need my best self in gear in order to accomplish this goal.  Thanks for being by my side no matter what the outcome, for I know all we can really do is our best, and leave the results up to God.

I love you sweetie.  Thank you for choosing us to be your parents.  Happy Birthday, you may be gone, but you are not forgotten.

God night.


36 comments:

  1. Happy Birthday sweet princess. Your parents and friends and family love you so much, that even though I never had the honor of meeting you in person, I can literally feel the impact you have made in this world and it is incredible and inspiring.

    Your parents continue to do the Lord's work in your honor; I know you must be so proud.

    Blessings Bella.
    Always.

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  2. Happy Birthday sweet baby girl. You are missed by so many people who's life you touched in your short time here on Earth. What a beautiful child you are. Your strength has inspired me a thousand times over. God has his beautiful angel and we are blessed to have had a chance to be touched by your spirit here on Earth, even if it was for just a short time. God bless the Ringold family. May you find peace today, and everyday.

    Love,
    The McLaughlin Family
    Amber, Craig, Malorie (4) & Liam (2)

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  3. Happy birthday sweet girl!! I have no doubt that you are filling the heavens with tremendous joy...beaming your beautiful light down on all of us! You continue to touch so many lives and change the world. You are loved beyond words and deeply missed.

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  4. Happy Birthday sweet Bella...
    beautiful Tim.... just beautiful...
    love from my family to yours...
    Angela O.

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  5. Happy birthday sweet girl!! I have no doubt that you are filling the heavens with tremendous joy...beaming your beautiful light down on all of us! You continue to touch so many lives and change the world. You are loved beyond words and deeply missed.

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  6. Happy Birthday, sweet Bella... you are the most perfect of angels and I hope you know how much your Mommy, Daddy, Ali and even lil' Julian miss your precious face. God bless you.

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  7. Happy Birthday my sweet Bella. Grandma Carolyn loves you. What a beautiful post Tim. As I read it, tears were flowing. I had a hard day today, missing Bella. She will always be in my heart. You and Angelique are wonderful parents and I am so very proud of you.

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  8. Happy Birthday Sweet Bella. Grandma Carolyn misses you.

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  9. What a beautiful birthday wish for your daughter. You are an inspiration Tim and I wish you peace and joy when you perform tomorrow.
    Holly in ND

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  10. Happy Birthday Bella. Thanks for helping me become aware of EB. Thanks for helping me get the ball rolling on an EB protocol for my NICU.

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  11. Happy 3rd Birthday, Bella! Today I witnessed a monarch butterfly emerging from it's cocoon. I feel that God allowed me to see that as a sign that you were okay. I'm sure you are loving that you are EB free. I hope that Tripp led the choir of angels and played Happy Birthday to you on today. Please give him a hug for me. I had the privilege of meeting your daddy when he came to Tripp's services. You were so lucky to have him and your mommy as parents. From the videos I have seen of you, your sweet sister adored you so much! I'm sure your parents would be quick to point out that they were the lucky ones having you as their daughter. I, for one am blessed that I came to know you on a spiritual and emotional level. Continue to watch over your parents, Allie, and Julian! I am so proud of you sweet girl for the fight you put forth on your time here on earth. I am relieved that you are now pain free and with our heavenly father now. Even though I never met you, I love you so much sweet girl!
    Happy Birthday from Ponchatoula!
    The Wells Family
    -Jason, Sharee, Julie, and Jase

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  12. Happy 3rd birthday to sweet Bella...
    You came, did your job, fulfilled your purpose, and headed back home.

    Hugs to all of you!
    Michael and Robin Setto

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  13. Oh, Tim,

    I read this while smiling through tears. You are right, Bella came to you, made her mark and then, as you say, went home. But I feel so strongly that she made sure she made a few thousand friends along the way before she took her next important steps. I am honoured to have had the privilege of knowing and loving her through the words and images you have all, as a family, given to me and countless others. She is a force, something natural and beautiful and undimmed. Given that she didn't even get the chance to learn to walk, that young lady took herself and many others on an amazing journey. And she's still moving on, making such a difference...

    The thought that she has been gone longer than she was here must surely be one of the most painful and heart-shaking milestones that the parents of a lost child must endure. My heart goes out to you. I can give you nothing that can make it easier other than my sincere acknowledgment of your pain and my hope that I can share it, albeit through words sent by a stranger from afar.

    I had a lovely day today in the sun with my family - fighting in the garden with some determined weeds. Later, I sat up on the rooftop for the first time in many months. That place is real! And it always makes me think of the marvellous Miss B.

    Thinking of you all, my friends who I have never met. Thinking of Bella Thinking of marvellous socks. Much love to each and all of you, always,

    Jane

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  14. Happy Birthday sweet Bella! You are part of a wonderful family...God blessed you w the best mom, dad, and sis!

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  15. Happy birthday beautiful Bella, thank you for changing my life in such a big way.
    sending wishes from Melbourne Australia and I will light some candles to celebrate down here x x

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  16. Tim, You are an amazing and inspiring individual. Happy Birthday to your very special angel.

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  17. Happy birthday Bella! A beautiful post . Love the garden. I hope one day you will finish your fight against EB ..
    Lots of love,
    Mariana, UK

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  18. Happy birthday Bella! Your short life has made such an impact on so many people, including me. I pray that one day soon, when parents learn their newborn baby has EB, the doctors will be able to say "Oh, but it's not that big of a deal, we can fix EB!" And you will be part of the reason there will be a cure.

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  19. Happy 3rd Birthday to your beautiful little angel.

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  20. Happy Birthday

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  21. Good morning, sweet Ringgold family...

    I spent the majority of yesterday afternoon outside - weeding, trimming, planting flowers - getting the outside of my house looking pretty and ready for summer. I came in for a break and sat down in my den where I could see out. And there it (she?) was - the first butterfly of the season, floating about and lingering on the newly pruned shrubs. How very appropriate that this lovely creature showed up on Bella's birthday.

    Your tribute to Bella was poignant and your words well chosen as always. Happy birthday, dear Bella. Happy birthday to you!

    Continued blessings to you all.

    Fondly,

    Susan
    A friend in NC

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  22. Happy 3rd Birthday Beautiful Bella. We never met, but boy I miss you too. Miss that beautiful face and those soulful eyes. Is it my imagination, but it seems all children with EB have the most soulful eyes I have ever seen.
    I just know that you had a wonderful birthday party in paradise with Leah and Tripp. You all were born in the same year and celebrating your 3rd birthdays this year.
    Take care beautiful Bella and continue to smile down on your amazing family. Love and Peace Leah's Nana

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  23. Happy Birthday Bella! I'm Nikki and have the same rdeb you had. I never met you but I miss you! You are such a cutie! Hope you hav a wonderful birthday in heaven. Make sure you visit my Rdeb friend Rebecca who died this month xxxx
    Love nikki

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  24. Happy Birthday Bella!! I won't forget you or your family.

    Praying for a cure,
    Lisa Gavigan

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  25. Happy Birthday Bella! Beautiful words as always! I have always been meaning to write about Ali. Maybe because I relate to her. I'm the oldest of 3 girls. My middle sister has been sick and bed ridden since th age of 4 and she is now 26. Ali has such a beautiful soul and has managed all of this with such grace. I know that speaks volumes of you guys as parents, but it is something hard for everyone in the family. I love seeing your updates and I am sure Bella enjoys watching you all from above! And Julian is adorable!

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  26. Happy birthday, sweet Bella

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  27. Dear Bella,
    I thought of you most yesterday...with my fab socks and my PUCK bracelet, though, you are always on my mind...
    You've left quite the mark on so many lives, hard to imagine you would only be 3...

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  28. Happy Birthday Bella! I bet your Daddy had a tough time with writing those words to you, but they came out beautiful. You are so blessed to have been given the parents you have! They are doing such a wonderful job raising money for EB in your honor, but you already know that! Hope you had the best birthday up in heaven, sweet girl!

    Holding my girls tighter tonight, in memory. Much love to you all, as always. See you in a few weeks. Also where can I get a t-shirt?
    amanda

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  29. Happy Birthday, Sweet Bella!

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  30. Happy Birthday sweet Bella, sending you butterfly hugs and kisses mwah

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  31. Happy Birthday (belated) Bella!
    What an amazing post Tim. Thank you again for pouring your heart out.
    Birthdays are hard...I just went through my Mom's first birthday (March 20th...would have been her 60th) since she went to heaven in October 2011. It was a hard day and I am glad it is in the rearview mirror.
    It is hard moving on without all the people that we love. I find myself going back to the time in my life when everyone who I loved was still here. I miss that feeling of whole-ness. Little pieces of my heart will be missing forever with each new angel I get.

    I also feel sad when I think that I am getting further and further out from the last time I heard her voice or saw her face. I am afraid of the day where I can't know for sure what Mom would have thought about something or what she would have done in certain situations...like she is becoming a stranger, a misty figure in my past that I can't remember as sharply as I want. When I start feeling like that I make myself remember that each day I put between me and the last day I saw her is actually a step closer to the day I will see her again as I pass over into heaven to be with her for eternity.
    You will see Bella again, just be patient :o)

    Blessings to you and your family and much love from MO.
    Kelley

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  32. Happy Birthday Beautiful Bella!

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  33. Happy Birthday Bella!
    We think of you often and know how happy you must be to look down on your parents and see how hard they are working to cure EB. Love you, Sweetie.
    Love,
    Jenn, Brian, Daylon and family

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  34. Happy birthday to sweet Bella (sorry for being late on the draw!)

    Love and prayers to all of the Ringgolds!

    Love from TX,
    Laura (for Team A)

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  35. Today I sit here and wonder why it took me so long to write. Selfish reasons come to my head. It is so much easier to click to a different website and say I will write later...than to sit here and cry (I sure do miss that sweet girl). With finally making the decision to go to Time to Fly (my dad was to have heart surgery and I was hesitating because of that)...you all have not been far from my thoughts. Bella is in my thoughts frequently. A beautiful sunset always reminds me of her as do butterflies. They always make me smile...as I think Bella is saying hi.

    Bella- Sweet, sweet Bella. I miss you so much. Some might find it strange that I would miss you...because we havent met. You were such a huge part of my life for so long. I thought about you almost constantly...praying for you throughout my day. I put all of me into those prayers. I put my heart and all of my love for you into those prayers too. I am reminded of you throughout my day. I see beautiful sunsets and they make me smile because I think of you painting them just for me. Butterflies that seem to "play" in front of me or with Clara...they are you saying hi. Sending you my love sweet Bella...can you feel it? I sure hope you do.

    Sending my love to all and sweet sweet kisses for Julian and Ali.

    Denise WI

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