Sunday, September 26, 2010

September 26: Day +86



Heaveno!

Oh the days just roll on by. I just looked up at the date and can't believe we originally were supposed to be packing up the minivan and heading home in 2 weeks. Wow, what a different reality that is from this one. I thought THAT road was gonna be difficult, and I was worried if I would be able to handle THAT. When I say THAT, I mean the 30-60 days we would have been on the BMT unit followed by the 70-40 days hanging out in the RMH.

I am so grateful to God. He clearly knows me better than I know myself.

He knew I was up to THIS task (84 straight days in the ICU and counting), when I thought I wasn't even up to THAT aforementioned task. If you had told me before this had all started that on September 26, we'd still be in the ICU and in spite of that I would be healthy and vibrant and focused and FIRED UP with a world wide network of prayer warriors literally praying around the clock and around the globe for Bella, I wouldn't have believed it.

He's told me this before. He has said to me that If he told me the heights he is going to lift me in my life, I wouldn't believe him. He's told me before that he's NOT going to give away the ending, because I wouldn't believe it was "possible." All he asks of me is to trust him.

He says to me, "I gotcha."

I have found myself saying that to Bella throughout her short life whenever she needs consoling. I find myself saying, "I gotcha... daddy's gotcha."

What a great image of God as a daddy, holding me, rocking me, whispering to me, "I gotcha... daddy's gotcha."

How do I know he's got me? Well, we prayed. He answered.


NO CLOT and NO SURGERY TODAY.


WE DID IT! and when I say WE, I mean you, me, God, the Universe, the all that is everything. WE, in communion, saw and visualized an outcome for today and it came to pass. God be praised! Yesterday, when I prayed that Friday was not a fluke and walked in to see the monitor look as it did (when I took that picture), I found myself saying, "God be praised," out loud. Now, that is not a saying I normally say, but I have found it to be on my lips and in my heart A LOT over these past 4 days.

For those of you that do not believe in God or a god, I want to continue this conversation in a way that does not alienate you. I want you to think of whatever force, entity, power greater than your self that works for you. It could be the universe, pure energy, the force, nature, the unified field, this online body. What I want to say is that for the past 4 days, something has uplifted me, like literally lifted me up (okay not literally - that would be levitation, right? That definitely did not happen) and held on to me, wrapping me in... hope and safety. I have felt impervious to doubt, fear, skepticism, anxiety - as if I was sprayed with teflon - and though it has been around me, it has not stuck to me. I have simply formed a bubble around Bella and I have sat/stood inside with only Angelique inside with me. It has been like a protective shield or force field.

As I do my best to describe the experience I have been having, what I chalk it up to is the upgrade in the power level of intention, energy, thoughts, and prayers being offered up to Bella and our family, combined with a willingness to give up on the medical establishment in order to make room for a miracle. It has been a simultaneous motion of your pushing the door harder from the outside and me opening it up from the inside. I have been giving all my power to Bella's myriad machines and medicines, thinking that if we just found the right dose/amount, THEY would save her. Don't misunderstand me on this... especially anonymous defensive medical professionals... you know who you are... (Try not to "Take" offense, although I guess it is yours to take after all, not mine) The point is that by giving all my power / putting all my stock in medicine, I left out room for any other power. Even the most evidence based scientist knows that there are children that heal all day, every day, from things "the experts" say are impossible to recover from. Early on, although I would read your comments that said you were praying, I just didn't fully take them to heart. However, when the docs kind of held up their hands like "I give up" this week, I could no longer look to them for answers. They admitted themselves that they were out of them, and they admitted they were worried, even scared. So, I came back to you, pleading for your help.

I turned to you, because I honestly was afraid to turn to God.

I needed your fire to help me reignite mine.

When I looked in the mirror and said that God could fix this whole issue in a heart beat, I believed that to be true. What I feared was that while he could, he wouldn't. I mean, if two football teams are praying to God before the big bowl game to win, and only one does, did he ignore the other even though they prayed? That may seem trite or juvenile, but I was afraid to get my hopes up. Not only that, I was afraid he'd let you down, too.

See, when Angelique was pregnant with Bella, I prayed on my knees almost every night offering a prayer of thanks for a healthy baby growing in her belly. I was so confused when Bella was born with EB. "What did I do wrong?" I thought to myself, regarding prayer. I figured I just didn't pray hard enough or often enough... or the "right" prayer, whatever THAT was. I must not have done it right. So, ever since then, I've been afraid to jump in with ALL my faith and hope. I've kept one foot in man's world trying to control things here on the ground. I have written about this many times before... my attempt to control the outcome, and how poorly it's turned out.

On Thursday, I surrendered. I mean I REALLY surrendered. Like a trust fall. Once I leaned back, I felt myself being caught. Since then, I've felt no need for the docs; like they don't have the key to Bella making it. The key lies outside of her room, outside of Unit 5C, of a children's floor, at a teaching hospital, in the midwest, of the United States.

This is not to say that I think we can just walk home with Bella tomorrow. No, that would be silly. The point is, we reached a point in Bella's care where we weren't even maintaining, or buying time, as one ICU doc explained his job to be. We were losing. Losing Bella. We were no longer just keeping her afloat. She was sinking, and the docs didn't know what else to try, so they didn't do anything for 2 days. Bella just floated, down, down, down. I watched in anguish as her blood pressure dropped, and dropped and dropped.

AND I - NOT YOU, OR ANYBODY ELSE - WAS THERE WHEN THE DOCTOR LOOKED AT ME, THEN MY CHILD, AND SHOOK HIS HEAD SIDE TO SIDE AS IF TO SAY, "NOPE, NOT THIS ONE, SHE'S NOT GONNA MAKE IT."

It was then that I started to turn my power, the docs' power, the machines' power, the medicines' power over to the collective energy of what I call God, and to you, Bella's online family. When I started reading to her your comments, I realized you believed more than I did! YOU brought me back from the abyss! In my darkest moment, you were the light I followed out.

(P.S. my computer battery strength read 20% 10 minutes ago. I just looked up, and it now reads 44%. I think God wanted me to go off on this tangent! LOL)


Bella getting to "lay up" a little - I don't think I can quite call it "sitting up" just yet, but it's a start!

So, having said all of that, let me tell you that when I walked in this morning, Bella's dialysis line STILL wasn't working, and she had a fever of 102.8. She had a clot in both her left and right internal jugular veins, her left subclavian vein was still collapsed, and she still had a blood clot in her liver. I stood in the circle as the fear and 'crushed' feeling bounced around the circle from person to person. When they read off how many clots Bella had, I felt my grip starting to slip. I felt the slightest sensation of dizziness, and fear. Why? I tried to understand why she had all these clots, and for a moment, I believed the group that it was serious.

It was an awful feeling, so I stopped feeling it.

I realized in that moment that I feel things, they don't feel me.

Circumstances and situations don't have feelings. We do. We place feelings ON TOP OF situations and circumstances. How can I say this? C'mon, ever known two people that do the same job, but extract different levels of joy and satisfaction from it? Why? It's the same job after all? Because THEY, not their job decide - CHOOSE - how they feel about it.

This morning, it was as if I had quit drinking, then had a sip and remembered how awful it made me feel, so I didn't have another sip. I chose not to drink any more of the dizziness or fear.

I began to get ready to go to surgery by hitting the men's room, and when I returned, I donned Bella's pink swim suit head gear to lighten the mood. Call me Patch Adams, but being silly on a peds unit and making people smile and laugh - even if it's at me - is a useful thing! Luckily, I had taken off the hat when the surgeons entered the room. The surgeon looked at Bella's shoulder, and explained that the catheter had moved quite a bit since it was placed due to her posture, getting tugged on, and the amount of fluid she has put on. So, he positioned a little ball of wash cloths under her right scapula (under her sheet - mind you) and pulled back on the syringe, and just like that, the line worked!


I put on my "rally cap" to raise spirits on the unit after rounds, before the surgeons arrived.

We went back on the circuit, continued to roll down the amount of pressers Bella's on, and began PULLING FLUID OFF BELLA TODAY.

All day, I read your comments to Bella - especially when we were going back on the circuit. I just sat with my back to the small army of docs in the room and ignored them and the monitor and the machines and just concentrated on using my voice to recreate your words in the most loving and intimate way I could - as if YOU were there actually saying them yourselves. It was just your words, my voice, and Bella. I do not know how many people ended up in the room at the busiest point; there were SO MANY COMMENTS to read that I must kept going, and going, and going, and ended up in a bit of a trance myself.


In the bubble... didn't know this picture was taken till I uploaded them all to my mac!

Funny part of the story - our new resident Maggie (who is totally and completely AWESOME) told me later in the day that I was reading the comments "don't let those docs" this, and "those docs don't know that," and the room was FULL OF DOCS! LOL. We actually had a good laugh about it.


YOUR wall... begun!

Oh, and your comments look SO BEAUTIFUL all over Bella's wall! More are being made as we speak. My poor friends Dayna and Amanda have their work cut out for them! Dayna came up with an AWESOME idea! Please download and print off the butterfly picture below and have your kids (or anyone for that matter - but especially kids) who know Bella to write/draw/color a note for her that we can hang in her room as well! We know there is a whole army of children worldwide who have come to know and love Bella through their parent's story telling and the pictures online. We want their voices to be heard as well! When they are done, mail them to me at 621 Oak St. SE Minneapolis, MN 55414. Make sure to write on them who they're from and where you live. Thanks again, Dayna, for such a great idea!


Dayna's sister-in-law, Amanda dropping by with your cards!


Many thanks to you for your love and support. You have saved me. You have saved our Bella!

God night.

P.S. For those who live outside the U.S., I apologize, Bella's book is not for sale, but you can download it for free on the lulu.com sales page as a .pdf! I set it up that way myself, so please feel free! Get it? Feel free? Oh man, I better quit now...


Check out the photo on the computer... Creature of habit?

65 comments:

  1. Oh Ali, what a doll! I wish I could have seen her today... I loved meeting sweet. Bella, I could have stayed all day. You and Ang are so amazing, I hope Bryce and I can be as good of parents as you are!

    Bella, I hope your dAy tomorrow is even better than today and the clots go away! I am having so much fun making your comment wall and the energy that everyone is sending you is contagious! Keep fighting... We love you!

    See you soon -
    Amanda,Bryce and Corynn

    ReplyDelete
  2. Dear sweet Bella-

    Your daddy is absolutely right - GOD BE PRAISED. No ifs, ands or buts about it! SO glad you didn't have to have surgery and that those clots went away. Praying tomorrow is even better, and that very soon we'll get to see that sweet neck even more!

    Team A is praying for you from TX!!
    Laura

    ReplyDelete
  3. Bella,

    I was thinking of you today, like I have been for a while now, and certainly praying for that clot to resolve. (Way to go, by the way!)

    But I thought of you when I was at the car wash. Have you ever been to one of those cool car washes where you get to stay in your carseat, and the car gets washed all around you? It's pretty loud, but fun to see all the bubbles and water hit the window. My kids think it's really fun.

    Well today, for a special treat, I went to the REALLY good carwash, where they clean the whole car for you, inside and out. The car was really grimy and full of crumbs from the kids, so I was excited. But when they were finished, I got in and noticed water.... on the ceiling, on my seat belt, dripping from one of the "walls" of the car. Not good! I actually got really mad, but then realized I'd left the sun roof cracked open. I had no one to be mad at but myself, and now my "special treat" was turning into a real problem.

    But then I thought of you, Bella, and realized how silly this was. It's just water and just a car! Granted, they were supposed to keep the water on the outside of the car. Oops. So, there was water in the wrong place, and I thought of you again, with all the water you have in the wrong place! :) It must make you mad, too, to be so uncomfortable from so much fluid. So tonight, to read that your clot is resolved AND they were able to start pulling fluid off of you again..... those are answered prayers. Way to go!

    Keep fighting, little one!

    Karen Steiner
    Denver, Colorado

    ReplyDelete
  4. Tim, Bella, Ang and Ali,

    Such decency, such detail, such determination. How do you keep going? I don't know. But you make us all cheer along with you.

    Rooftops cheering is now a permanent fixture here in British Columbia.

    Awaiting tomorrow, awaiting clearer days, awaiting the glorious outcome you Ringgolds so richly deserve. In the meantime, baby steps, in marvellous socks. I am exploding with the joy of being part of the cheerleading team for Bella. You make me feel alive,

    Fondly and ever more loudly,

    Jane

    ReplyDelete
  5. Dear Bella: AWESOME baby girl! You and your family are an inspiration to so many people right now - I can hardly find the words to thank you for reminding me what is really important in this world.

    ReplyDelete
  6. love, love, LOVE the comment wall! What a darling idea! Christian will be thrilled to color a butterfly for Bella :)
    Praise be to GOD! May HIS glory continue to shine! Thinking and praying for you Bella, Ali, Ang & Tim! This journey is a climb, but the view is great!!! Praying with all my heart, soul & mind!
    love always,
    nicole b

    ReplyDelete
  7. Happy day to you Bella! I'm so glad you didn't have to have surgery! Thank You God! I was anxiously waiting for your dad to post today's news and was so glad it was good news. Your dad writes about a connection between you and us, and it's actually something I can feel. Just imagine if we could see the connection, like little streams of light, connecting us all. What a beautiful picture that would be! Shine bright little Bella!
    Much love,
    Mandy

    ReplyDelete
  8. So glad to hear this good report! You and your family are staying so strong...God bless you!

    ReplyDelete
  9. Bella- We'll be downloading the butterfly and Trent (aka TNT) will be "writing" on it for you and we'll mail it to you asap! I can't understand what he "writes" but, being that you two are close in age I'm sure you'll understand way more then we do! I'll try to capture on video what he does when he sees you and send it to your Mom, Dad & Ali!!

    -Sarah
    Virginia

    ReplyDelete
  10. Way to go God! Way to go Bella! Way to go Daddy! :) I am praying for you tonight and I am so thankful you did not need surgery today! You are a fighter Bella, I see where you get it from! God has blessed so many talented doctors to be his hands... yes, we are so thankful for their knowledge but we know that God in Heaven pulls all the shots and has a plan for your life sweet girl! Much love from Texas!

    ReplyDelete
  11. Bella,

    We are thinking of you tonight and every night and day! We thank God that He is showing us so much love and faith through you and your sister, father and mother. God wants us to see and feel Him through other people, it is one of His greatest gifts to us-each other. God night, Bella! Just saw that cookie commercial again and thought of you! I will buy you and Ali box after box pretty soon, ok?

    ReplyDelete
  12. Jack and Molly's NanaSeptember 26, 2010 at 10:05 PM

    Another spectacular day - hooray! Love seeing Bella "sitting"; surely that will help with the fluids, right?
    The message wall is wonderful; how great for you to be able to SEE all the prayers and wishes posted so radiantly. Super idea!
    I'm sure that your comments about attitude are going to have a lot of us nodding in agreement. We've all known people who are never satisfied with their lot in life; it takes a great deal of self-examination to realize the difference between what's real and what's REALLY real. Thanks for your "take" on it!

    ReplyDelete
  13. Good for you Beautiful baby Bella, no surgery today, let's keep it that way! Keep on improving, little by little or in big leaps and bounds, either way you will show "those doctors" and the world that with God all things are possible! Hold on tight Bella, because you are turning that corner girl, and this bumpy, twisting & turning, BMT road is going to even out and get more managable everyday.
    I downloaded your butterfly, and am going to have my one year old grandson, Nathan,(Angel Leah's cousin) color it for you. It will be one of his first art projects. He loves to watch the butterflies outside in our garden, we have had so many pretty ones visit our garden this year. I also have them ALL over the place in my house, not real live ones of course, that would be taking this whole butterfly/EB association thing a bit to far, don't ya think?
    Praying for you and your family & sending beautiful butterfly wishes from Bowie, Maryland, Judy T.(Leah's Grandma)

    ReplyDelete
  14. Yeah for you Bella!!! No clots or surgery. If you're anything like me, the drs. "threaten" you with surgery (or in my case an induced labor, haha) & lo & behold things switch around really quickly. :) So happy for you Bella & this positive turn of events. Keep up the Awesome work. Tomorrow will be even better than today. :)

    Brenda (Kansas)

    P.S. Sometimes the ones who "know" it all have to realize that they don't know EVERYTHING. :) to much in life can't be explained by a medical textbook. Happy thoughts & lots of prayers being sent your way today & everyday.

    ReplyDelete
  15. Yay for no clots / no need for surgery today! Now if only the baby I'm taking care of at work (who has some similar problems as Bella right now) can find a way to behave as well as Bella is right now!

    Jessica
    Chicago, IL

    ReplyDelete
  16. From CT I praise your family and Bellas strength. She is a lesson to us all. I read your blog nightly and look so forward to good news. It is amazing to feel like you know someone you have never met in person...I commend all of you parents with EB children, you inspire me with you selflessness and giving. I can only imagine how much you love that little baby...I love her and I dont even know her..........prayers and hope....Janet S

    ReplyDelete
  17. AWESOME JOB BELLA!! I knew you could get rid of those clots. You continue to amaze me everyday. You're so FABULOUS!

    For some reason I decided today was the day to teach my 28 month old daughter Malorie to pray. So when it was bedtime and I had her alltucked in tight, we said a beautiful prayer and she asked God to bless mommy, daddy, brother, DAYLON AND BELLA! Such a sweet prayer coming from the mouth of my beautiful baby girl. I'm going tp print a butterfly and have her decorate it for you and we will send you a family picture to hang on your wall as well so you can put a face to the comments you've been hearing (and mommy and daddy have been reading) for the past few months. We love you Bella. Stay strong and continue to amaze us. You're good at that!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(8 mos)
    The McLaughlin Family
    Moreno Valley, CA

    ReplyDelete
  18. Bella,

    I'm sorry I did not write you last night. It wasn't a banner day for me and I did not want to come to you with that. Tonight I feel almost the same, but I wanted to tell you that I am proud of you for believing in all of us, for trusting our words and our prayers. Thank you, Bella.

    And when I got to the picture of your Daddy reading to you, I lost it. I started crying and whispered out, "Beautiful Bella..." I have no idea why I lost it, but I did. For the pain, beauty, trials, battles won, battles lost, happiness, spirit; for God, and again, for the beauty that you are, Bella.

    Tonight I pray that God continues to answer our prayers, and that He's not quite done with Bella's story on this Earth with us. I pray that Bella's pressures continue to hold and all of the nasty medicines that they have her on will go down fast. But Lord, I also pray for the doctors that come upon Bella's journey, that You please give them the wisdom but especially the faith to treat our Bella. In God's name, Amen.

    I can't wait to watch you grow up. It's going to be amazing.

    Love,

    Mel

    ReplyDelete
  19. Continuing to Pray for Bella and the family.Someone sent this to be as an encouragement and wanted to share this with you. "Nothing, absolutely NOTHING, enters my life that isn't caused by or allowed by God so that I mught become more like Christ. I am tested and refined by the fires. And so I praise Him, no matter what." (R. Hatcher) So, my friend, keep praising and enjoy watching God work! Blessings on you all..........Deb

    ReplyDelete
  20. Heaveno Bella! This is now an inside greeting for all of your blog readers and if anyone ever greets you with this phrase you'll know that they were a part of your "online family". I hope that you are doing well today and are able to get rid of a little more of that excess fluid. I was thinking of you yesterday when my husband Thomas and my daughter Anna and I went for a walk in the rain and saw a beautiful double rainbow. I can't wait for you to get well and to see your smiling face. Lots of love from Germany. Laura Valetutto

    ReplyDelete
  21. Vamos Bella!!! As we say in Spanish. Wonderful news and a beautiful blog Tim. Thanks for sharing all what you think and feel with us.
    I love the idea of the wall and I'll put my children to work as soon they come back from school.
    Praying for many good days to come.
    Mariana,UK
    PS I bought the book here through Lulu.

    ReplyDelete
  22. Yay Bella!
    Keep on fighting- I'm still praying.

    ReplyDelete
  23. Go Bella!!! Keep fighting little one - be strong you are teaching so many people around the world what it really means to be brave, strong, and fight!

    Love in Boston!

    Tamar

    ReplyDelete
  24. PS Bella, I forgot to put this in my comment,

    In hebrew your name Anabella means favored grace and beautiful and darling that you are!

    Tamar in Boston!

    ReplyDelete
  25. God is good! He is! And he will see to your healing. Oh precious little girl! You are such a marvel to us all, keep fighting sweet one.

    DOn't give up, because you are loved.Always in my prayers

    karen from arizona.

    ReplyDelete
  26. Hello,

    I have been reading for about 20 days now and have just worked up the courge to comment. I am a shy commenter. I came across your blog on another one I read.

    My husband and I are struggling to get pregnant because of PCOS. So far, we are still on fire to beat this and fulfill our dreams of a family... but we have moments of despair.

    When I saw your blog on a blogroll, something made me click on it. It was partly because the name "Anabella" sounded so beautiful to me and partly because I just had to. Since I have been reading, I have been praying and rooting for Bella and your family. I think of you daily and check in as often as I can, sometimes more than once a day, just to make sure I haven't missed anything.

    Bella is a fighter and she inspires me. I admire you and your family, and Bella, for sharing your story. Thank you.

    I will be following and praying.

    ReplyDelete
  27. Keep up the good work Bella! Your strength inspires all of us everyday. We are saying all the prayers, but you are doing all the work to get better. You are a fighter for sure! Look for our butterflies coming soon! We can't wait to work on them.

    ReplyDelete
  28. Bella,
    Its Amanda again... I just want to tell you that today I will pray extra hard ALLLL day for those blood pressures to STAY UP!!! I don't want you to have to start that new medication... you can do it on your own, I know you can! God Bless Bella today!!!!!

    Love, Amanda Schauer

    ReplyDelete
  29. Dear Bella,

    What a feeling I am sensing these last few days, when reading your daddy’s words. Such a comfort and peace, that I cannot translate it into words.

    You are a God’s instrument, playing a melody of faith and strength to all over the world. Praise be God for allowing me to cross your journey.

    Through your Dad’s entries I am learning so much. I am learning to be humble, to be persistent, to have faith no matter what, and to just “give UP”. By just “watching” your journey I have become a better person. Thank you and your beautiful family for that.

    Continuing our most sincere prayers for you and your family,

    Carla, from Portugal.

    ReplyDelete
  30. God is good, all the time! All the time, God is good!! Praising God again that He alone knows what is going on inside Bella, her mommy, her daddy, etc. He alone has all the answers! I praise Him for hospitals, doctors, nurses, etc and how He uses them to perform His miracles. I now am including Bella's daddy in her miracle.

    I'm continuing to pray for Bella! Wouldn't it be great if God just healed her kidneys and she began to pee again and get rid of the fluids herself. We serve a great God and He is not limited!

    Praying from Waterford, Mi

    ReplyDelete
  31. Sweet Bella - there are no words to describe how happy I am with the progress you are making. You are such a strong little girl! You are making your mommy, daddy, and sissy so happy. (Your Grandpa, your uncles and I used to call your mommy "sissy" when she was a little girl!) Pretty soon Ali will be able to play with you again. What a special bond the two of you will have for the rest of your lives. You are part of each other forever.

    Now listen up little one. You know what's coming in less than three months? Yes, Santa!!! And he knows you and your sister's address to be Orange, California. He has his route for his reindeer and sleigh all entered into his GPS, so get better and take mommy, daddy and Ali home! (He will find you no matter where you are, sweet one, but Christmas at home would be such a gift). Oh and maybe your mom and dad would decorate your Christmas tree with the comments from everyone. It would take lots of trees to hang them all on, but what a sight that would be!

    I pray for you day in and day out sweet Bella. Keep on keeping on the way you have been the past few days. You are making so many people so happy. You love to hear your daddy and mommy's voice, don't you. Have you heard "Bella's Song" lately? Bella, Bella, your name means beauty....
    (I think I have the words right, if not your daddy will fill them in!)

    Love you so much, Terri

    ReplyDelete
  32. Hi Bella: So happy with the news about no surgery. You did it baby girl, you showed those doctors again who exactly is in charge.
    You are so amazing, I guess you get that from your parents, and we are all so proud of you. Hang in there beautiful Bella, you CAN do this, and kick this EB in the butt.
    Love and lots of hugs. Love Leah's Nana

    ReplyDelete
  33. Good morning, sweet Bella. I just adore your new comment wall. It is SO cute. I can't wait for your eyes to be open and alert so you can see all the pretty colors and shapes.

    I don't know if your daddy knows the words to a song called "My Tribute", but part of the chorus says: "To God be the glory, To God be the glory, To God be the glory, Great things He hath done." Perhaps he could sing this to you because, indeed, great things He has done and will continue to do. We have faith!

    Wishing you a wonderful day, precious girl!

    Praying for healing,

    Susan
    A friend in NC

    ReplyDelete
  34. Bella,

    I'm so proud of you! Your fight and spirit amaze me every day. I know you will be well and you will show all of the doctors and the world Who is in charge.

    Your Daddy's words are so energizing to me, and I am so fortunate to be a part of this online community. Thank you for enriching my life. Work hard on getting better today! I'll check on you tomorrow!

    ReplyDelete
  35. Soooooooo glad that Bella had a good day! Little Bella, I'm praying for you everyday that you keep up your strength and spirit. You are a blessed little girl who God has chosen to show so many His love and to look to Him. In your short life He has shown us through you and your daddy the power of letting go and letting Him take control. You have bound together a community of people from all over the world that love you and give prayer and thanksgiving to God everyday for your life and His miracles we have seen through you. Sweet Bella, keep up the fight as His angels watch over you. Whether the day is a "good day" or a "could be better day", the love and lessons that God has revealed through you will always be there, encouraging, uplifting, and humbling others. We love you and are your prayer warriors!! Go Bella!

    Dayna

    ReplyDelete
  36. Well Bella the Dr's might have given up on you days ago BUT we NEVER WILL! Neither will your family! You keep fighting to get well in your cacoon and when its time for you to wake..you will show all your beautiful butterfly wings! You keep fighting baby girl..
    Mia from Illinois

    ReplyDelete
  37. Little Bella,
    One day, when your daddy is old,
    Again, the story will be told.
    Hands of angels, prayers of strangers
    together keeping out the fear and cold.

    ReplyDelete
  38. Caleb is loving that picture of Ali! He keeps saying, "Ali! Ali!"
    Anyway, I'm glad to hear that things are still moving forward. I can't wait until you guys are back at the RMH with Bella so she and Daylon can play together! It'll be here before you know it! We'll all rooting (and praying) for her! Love, Jennifer

    ReplyDelete
  39. Love love love love love love love.

    ReplyDelete
  40. I've been following your blog for weeks now, but am commenting for the first time. I love the idea of reading all the comments to Bella, and am so pleased that it seems to be helping! I check this blog every day, and frequently think of Bella and send positive thoughts her way. May she continue to improve and become happy and healthy once more!

    ReplyDelete
  41. WAY TO GO BELLA: Way to go Baby Girl!!
    What great news these past 4 days. We read Daddy's blog and then go to Grandma
    Carolyn for the "Nightly News" after she talks to your Mommy.
    We wear our "Bella Bracelets" each day and pray for you and your daddy, mommy and Ali.
    CAN'T WAIT TIL YOU COME HOME. GOD IS GOOD ALL THE TIME.

    Ali....I gave LUCY a hug from you OXOXO

    Adrienne and Lee
    Huntington Beach, CA

    ReplyDelete
  42. Hi Bella!
    W are so proud of what a good job you are doing fighting. You are a special little girl with extraordinary abilities.let's do another visualization, how about this time we picture you going to disney with your family! spending time with ali, taking pictures with mickey and minnie, going on fun rides, laughing until your belly hurts. you are free to run and play, all your boo boos have gotten better and you feel amazing. Can you picture it bella? Can you feel it? You will soon...love you bella...you are almost there you little miracle!

    ReplyDelete
  43. Thoughts and prays are with you guys every day!!!!

    ReplyDelete
  44. Hi Ringgold Family!

    I have been following Bella's journey for awhile now and I look forward to catching up every morning about the prior day!

    Bella - you have such strength and determination, it's truely an inspiration! It's only a matter of time before you show those docs who is right! I know it!

    Tim - You are the most amazing Dad and blogger, the way you lay everything out for Bella's online family is truely incredible! I admire your entire family's dedication and perserverance!

    I'm a mom to a wonderful 16 month old boy, Jack, and if you all for any reason ever come to Southeast Kansas (because we all know what a vacation hot spot it is), you let me know and we'll have a BBQ at our house! ;-)

    Darci Spear
    Pittsburg, KS
    www.chrisanddarci.blogspot.com

    ReplyDelete
  45. Bella and Family,
    I love this quote and it popped into my head reading up on your progress today:
    "What lies behind us and what lies before us are small matters compared to what lies within us. And when we bring what is within us out into the world, miracles happen." ~Ralph Waldo Emerson

    Keep up the fight! Keep the M.D.s practicing their medicine! Because PRACTICE MAKES PERFECT!
    ~Sarina, Salt Lake City, UT

    ReplyDelete
  46. You are amazing Bella! You keep fighting and the prayers will keep coming! You daddy is orchestrating something wonderful here with you at the very center and I feel so blessed to be able to watch it happen. Praying for God to continue to work His miracles.

    ReplyDelete
  47. Tim, you were lamenting that the doctors stopped doing anything to Bella for two days. Perhaps that is one of your Providences, a blessing in disguise. Without them chasing drugs and probing into her, just maybe, that gave her the rest she needed to jump start on her own. Things happen for a reason.

    Bella, you are the toughest little girl I know, I am looking forward to seeing that crooked little smile of yours and hearing that hearty, deep belly laugh you do.

    I love and miss you,
    Grandpa Rodger

    ReplyDelete
  48. Hello Bella, Tim, Ang and cute big sis,
    My name is Bonnie and I am from Louisiana. I have never commented before for several reasons.....but here I go. I am a friend of Tripp, who also has EB and is having his own struggles these days.
    First let me say that I am OVERWHELMED at the outpouring of honesty, love, faith and stories from complete stangers around the world!! It has brought me to tears over the past few days. I come here because of HOPE.
    Bella your story/recovery gives me hope nad Mr Tim, you give me hope. I have never commented because you seemed to have it all together...from Bella, to the doctors, to your amazing ongoing spirit. Well, its apparent that "we lurkers" have something to add and I am humbled yet proud to be apart of this "silent army of supporters" and to be witness to this.......miracle.
    Mr Tim, you make me want to be a better parent, a better believer and your stories have brought me to my knees in thanksgiving with regards to my life and family. Your endless drive on Bella's behalf and tire-less tenacitiy is ASTOUNDING!!!! Bella, your parents are great. ("Great" seems like such a wimpy word right now.)
    I wish my words could be as powerful as the effect of the last 200 comments FROM STRANGERS have had on my heart/spirit.
    I read your blog everyday, sometimes twice. I look forward to being a witness in your complete recovery. I hope to meet you one day. Mr Tim....keep reading, your doing a great job and we will keep praying/commenting.
    Love from Louisiana
    Bonnie, mother of Grace 4yrs and Cooper 2yrs.

    ReplyDelete
  49. Bella- I love your "wall". Look at all of those comments just for you. Do you know how loved you are? Loved so very, very much. Feel it baby girl and draw so much strength from that love. Praying for you still and always throughout my day. XOXOXOX

    Tim- I hope you realize that you will be blogging for years...well that is until Bella can take over for you. No pressure. :) I love that you sat there reading to Bella and ignored those docs. You definetly had more "pressing" things to attend to....sweet Bella and her messages of love and hope.

    Hey docs...if you are listening. Dont you dare give up on Bella. We havent and God hasnt!


    Denise WI

    ReplyDelete
  50. Dear Bella
    My name is Sandra and I live in Portugal.
    I have two princess, one have 5 years and another 9 months.
    I came here every day to see how you are ... I believe in you ... I belive in God's hand ... you are special.
    I know you can do it, keep fighting, don't give up.
    I am praying every day for you, and your family.

    See you tomorow
    Sandra, Lisbon, Portugal

    ReplyDelete
  51. Had to add a hello to big sis...Ali. I love your pictures that daddy puts of you on the blog. They always bring a smile to my face.

    xoxoxox
    Denise, WI

    ReplyDelete
  52. Hello, Sweet baby Bella, I am so thrilled that there were no major issues with the clot that could've lead to surgery. Praise God!! I am still down here in Troy, AL praying and thinking about you and your wonderful family constantly. I work in accounting for a trucking company and I wonder every time I see one of the drivers took a trip through MN if it was possible they drove by the hospital you are at. Sounds crazy, I know, but it kinda makes me feel a little closer to you, even though I have no relations other than working with the drivers and knowing it was one of our trucks. Sorry for babbling, I just wanted to tell you how I feel even though I have never met you in person. I think of you just about every single time I look at my one year old little boy. His name is Ty and he turned one on 9/11 this year.

    I don't know if I have told you before, but I want you to know that your spirit, strength and braveness has lead me to admire you so much that I can hardly sleep at night without hearing from your daddy about you, Ali, Mommy and Daddy. I cannot wait to see you and Ali playing just like Daylon and his brothers and sisters!

    Also, I need you to tell mommy and daddy that if my typing is off or a little crazy that I bought a new phone last week(that I am using for comments and not quiet used to), and its a Droid II from Verizon and I always brag to everyone about how nice the customer service people are and how great the service is (then read your mommy works there). Needless to say I thought that was really cool. It made me smile and wonder if I've ever talked to her and didn't know it,(just a thought). I've been with Verizon for a little over 2 years now, so its possible depending on what dept she works in.

    Also, Mom or Dad if you do not mind telling Grandma Carolyn Hello, and that she is very, very welcome, however, she doesn't have to thank me, I was just doing what I felt I needed to. I am usually very content and ignore those sort of anonymous people,(as to not add fuel to the fire, you know), but I just could not because whoever that was made my blood boil. I am not usually that easily aggrevated.

    Okay, I'll stop now. Sorry for the long post. We love you baby girl!! You stay strong and keep showing those docs up. I love the butterfly wall and my daughter is going to be thrilled to draw for Baby Bella!!

    Thinking of you ALWAYS !!!
    Love,
    Susan H, Jeremy, Emily (7), and Ty(1), Troy, AL

    ReplyDelete
  53. Hi Bella! It's just past noon and I'm praying you're having another wonderful day. I'm so glad that you don't have to have surgery! It's funny how the simplest things, like changing your posture, can create a whole new outlook on the day!

    Is there still a possibility of using the drug you mentioned a few days back Tim? Or is this turnaround enough to warrant not using it?

    ReplyDelete
  54. Hi Bella,
    Happy Monday Sweet Bella girl. Thinking of you and praying as always. We are so honored to be part of your team...GO TEAM BELLA! To be involved and witness your miracle is awesome. I show Braeden your pics and he says, "Where is Ali and Bella?" My response, "Bella is getting better," Braeden's reply..."Good Mommy, Bella is getting better."
    We miss you and Ali!!! Sending you hugs and kisses from your daycare family!
    xxoo,
    The Davidson's

    ReplyDelete
  55. Hi Bella, Tim, Ang & Ali, I didn't see your post the other day asking why I read Bella's blog but I saw it today so I'm answering now. My grandson also has EB, although his is simplex, and so far we haven't had nearly any problems (other than blisters, of course!). I didn't know a thing about EB until he was born with it and I must say I was in tears reading about it on the internet and seeing the children that suffer from it! I came to your blog from my daughter's blog and I find much inspiration and hope from Bella and from your family and friends. I know that if Bella can get through all she has been through that our little Jackson can get through whatever lies in the future. I think of Bella often and pray for her and your entire family. God bless! Karen - St. Louis, MO

    ReplyDelete
  56. Oh, and we will print and sign a butterfly for you Bella so you know we are praying for you and thinking of you daily! Karen, St. Louis, MO

    ReplyDelete
  57. Dear Bella,
    We are so excited here in NJ to see your improvements day by day and to know you are fighting so hard! We know you can do it because you are such a good little fighter and have such a strong family and God holding you in his hand! Team Bella is behind you too! You WILL BE WELL!

    Miss Ali my daughter Olivia say "Awesome choice -Mac & Cheese!"

    Nonstop prayers from NJ (Tina, Mike, Rebecca & Olivia)

    ReplyDelete
  58. Yeah for Bella! I wait all day to read your blog when I get home from work. It's wonderful to feel the power of God working such a miracle with your little girl.

    Stay strong, get rest when you can and thank you so much for letting us into your family.

    Holly in ND

    ReplyDelete
  59. The morning cold and raining,
    dark before the dawn could come
    How long in twilight waiting
    longing for the rising sun
    ohoh ohoh Oh ooh

    You came like crashing thunder
    breaking through these walls of stone
    You came with wide eyed wonder
    into all this great unknown
    ohoh ohoh Ohoooh Oohh

    Hush now don't you be afraid
    I promise you I'll always stay
    I'll never be that far away
    I'm right here with you

    [Chorus]
    You're so amazing you shine like the stars
    You're so amazing the beauty you are
    You came blazing right into my heart
    You're so amazing you are...
    You are

    You came from heaven shining
    Breath of God still flows from fresh on you
    The beating heart inside me
    Crumbled at this one so new
    ohoh ohoh Oooh ooohhh

    No matter where or how far you wander
    For a thousand years or longer
    I will always be there for you
    Right here with you

    [Chorus]
    You're so amazing you shine like the stars
    You're so amazing the beauty you are
    You came blazing right into my heart
    You're so amazing you are...

    I hope your tears are few and fast
    I hope your dreams come true at last
    I hope you find love that goes on and on and on and on and on
    I hope you wish on every star
    I hope you never fall too far
    I hope this world can see how wonderful you are

    [Chorus]
    You're so amazing you shine like the stars
    You're so amazing the beauty you are
    You came blazing right into my heart
    You're so amazing...

    You're so amazing you shine like the stars
    You're so amazing the beauty you are
    You came blazing right into my heart
    You're so amazing you are...
    You are
    ooooooo

    http://www.youtube.com/watch?v=W-xmLD85M8o

    This is a sweet song that I love, and every time I hear it I think of Bella (specifically the chorus and last few verses). And to make it even better this song is played in the "Twilight" movies which I know mom loves ;)

    On my knees praying for this family more than you know.

    "My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever". Psalm 73:26

    - RN

    ReplyDelete
  60. YAY Bella! I knew you and God could do it! I am praising God and giving thanks today! Stay strong!

    ReplyDelete
  61. Go Bella! You strong, brave girl! I was so happy to read that the clot cleared!

    I called my Mum last night to share your story. She lives more in your neck of the woods (home that is), down in Del Mar. I asked her to add you to her church's prayer list -- we're praying in force for you!

    I told her about the amazing battle you're waging and the miracle of the last few days. I said something like..."and the medicine can't really explain it" to which she replied, "we know who took care of her -- God is good!" She then asked for your name and I stumbled to remember your last name. It finally came to me but she said they didn't need it because "God knows." :) Of course He does. You're His special warrior.

    I just gave my little guy, Reid, a kiss goodnight. He looked back at me with his big blue eyes and I couldn't help but think of you. I know there will come the time (not too far off) when your Daddy and Mommy will see your beautiful blue eyes peering up at them. I've only seen pictures of you though this blog but even in pictures your eyes have such light and laughter and love in them.

    Dream good dreams with the angels tonight. Have them tell you some wonderful bedtime stories. And tell them to give you a big squeeze hug from me.

    We'll keep sending mega-prayers your way, darling one.

    Love and hugs,
    Kelly in Tampa, FL

    ReplyDelete
  62. Beautiful Bella, I posted a couple days ago and missed yesterday. However, you were still thought of and prayed for. In fact little girl, I added you to our prayer chain at church so a whole bunch of prayers are coming your way! Hugs to you and your family. Tim - God bless you.
    KD, Minnesota

    ReplyDelete
  63. There is a new phrase that has started here...YAY GOD! And this is truly a YAY GOD moment!!! May God continue to hold you in the palm of His hand and surround you with peace!

    ReplyDelete
  64. Bella,
    This is your friend from Cairo,Georgia again. I am sitting at my computer crying happy tears as I read your Daddy's words. My baby boy is 17 years old. He is asleep in his bed tonight, probably dreaming of college applications, SAT scores and his girlfriend.;) I love him with the same fierce love that your parents have for you. You have so much to look forward to, Bella. Your parents will do whatever it takes to make you better. Fight on,YOU CAN DO THIS!

    SH
    Your southern friend!

    ReplyDelete
  65. T,A,A,&B
    We love and miss you.
    S,D,W&M

    ReplyDelete