Monday, December 6, 2010

December 5: Good start

My office today... not too shabby!


Well, I've said it before:  One day at a time just may be too much to bite off at once when times are really tough.  I had another rough time of it getting into gear today, and when I walked into the house after dropping Ali off at daycare, I felt tired and just wanted to crawl back into bed and forget the day... except that's what I did last Monday.  Oh, and I scheduled myself to work at the hospital today (I am working two hour shifts at the hospital for just about every day I'm in town for the rest of the month).  I told myself I just gotta do something different today, otherwise I won't be going anywhere.  I know that it would be okay, but I just wanted to challenge myself and see if I could kick it up just a notch.  So, I grabbed my iPod and got outside and went for a run.  It was GREAT.  Angelique recently read that exercise is particularly good for treating grief.  It's also awesome for depression.  The catch with exercise is that when I hear myself say I don't wanna... it's the grief talking, and I know it's EXACTLY what I need.

Sure enough, as I strode back in the house 23 sweaty minutes later, I felt completely different.  I was in gear, and ready to take on the day.  As I ran, I just focused on carving great turns in the snow all day long in Colorado. The harder I push right now, the longer I'll ski well and enjoy my day with my family.  After all, it's been 19 YEARS (holy C-R-A-P I can't believe it's been that long!!!!!) since I hit the slopes.  Just writing that kind of scares me a little.  I need to remember I'm not 19 anymore, and so I can't just tear through the hills like I used to.  Also, my legs have not been athletic so much for the better part of 2 years, so slow and steady is going to call the shots.  Today, each stride (ESPECIALLY up the steep hill I picked) where my legs burned, I pictured my legs getting stronger and stronger.

This has really been a great thing for me because I have spent many years on a treadmill.  Playing pick up soccer, the stakes haven't been too high.  Now, training for skiing Purgatory, I have to really take this a little more seriously since I could really get myself in a pickle bouncing down the mountain!  Plus, I can SEE myself going down that mountain full of joy and wonder, and I can tell my legs and butt aren't as strong as they need to be to really enjoy that experience free from feelin' the burn right outta the gate!

Tonight, we had kids eat free with Nicole and Sara, two of Bella's biggest supporters.  Turns out we all live about 10 minutes apart from each other, so can you spell play date?  It was great for us all to get to know each other a little more in a context that wasn't all about Bella.  We had a blast!

Work was good. I feel like yesterday was somewhat of a watershed for me.  I sobbed in church yesterday the hardest I have since I cried over Bella as momma held her as she took her last breath.  I walked this road with God at my side throughout the journey.  To be back in his house for the first time without her... really powerful moment.  At first, I felt like I would be embarrassed to walk in without Bella after praying SO HARD and SO PUBLICLY for her before and during the journey to MN.  What I realized was that walking back in that door represented the ultimate act of humility and faith.  It meant that after all the signs God sent us to go to MN only to take Bella from us,  I was saying by my presence that I STILL BELIEVE.  I STILL HAVE FAITH.

Honestly?  Did I?

Through the first half of the service, I could sing the notes of the hymns, but the words were meaningless.  Meaningless to me.  MEANINGLESS.  la la la la la.  When the scripture was read, I could barely contain my contempt.  Utter nonsense.  Non - sense, meaning, yup: without sense.  When the new interim pastor stood up to give her sermon, I walked out.  I went to the restroom, walked out and looked at the park across the street for a few minutes, and after a couple of minutes, told myself to get my ass back in my chair.  I prayed for the willingness to let the pastor's words penetrate through the wall of suppressed anger, pain, and sadness so that I could actually 'hear her,' and not my judgements of her and of the text.

Know what?

Ever so slowly, my furrowed brow released.  My frown turned neutral, and at one point, I even mustered a half smile (probably more like 10% smile, but it felt like a half - it took a lot just to get that far!).  I began hearing the pastor, and she seemed to be making sense, so I kept listening.  When she finished her sermon, I realized it was pretty good after all, and she was pretty good after all.

Sometimes a day is just too much to take in one serving.   You asking me how was my day is like me asking you how was your month.

Day by day, the pain goes away, but only by getting worse first.  I know that each day the pain grows is a day closer to the pain lessening.  It's going to get worse before it gets better, and I reluctantly rejoice in that worsening, for it brings me closer to the other side of the typhoon.  I have to tell myself this over and over, and over and over, and over and over, all day, every day.  Otherwise I would be crushed alive by the weight of this current pain.

Hey lurkers, drop a line of support.  There are no right words to say.  Just say SOMETHING, please.  It would be nice to hear from you right about now.  Thanks.

God night.


  1. Thinking of you, you do great! Thanks for the pretty pictures. Beauty usually heals my soul.

  2. I think about Bella daily - and though I have only known her and your family in the context of this blog, I feel incredibly sad when I think about her and your loss. I cannot even begin to imagine the depth of your sorrow because it takes my breath away to just briefly VISIT that thought with my own children in mind. I don't comment anymore because I feel as if anything I say is just SO LITTLE, so insufficient, so stupid in the face of such the hugeness of the grief you are feeling.
    Im sorry for not supporting you when you need it the most.
    I miss Bella too.

    Kirstin in CA

  3. 10 minute raidus of each other is great! I'm really looking forward to the many play dates that are in store for the kiddies! Dinner was fantastic tonight. Seeing Ali interact with Brooklyn melted my heart and for a second, I invisioned Brooklyn to be Bella. Even in that one second, my heart smiled, but as I type this, the tears are falling. She was so stinkin' cute and I miss that little girl so much. Bella's legacy is GRAND...she is grand...I am so grateful to have crossed paths with her and to have gained such great friends.
    What a great day at the office...the pictures are beautiful. I pray that God give you the strength you need day in and day out. We are always thinking and praying for you guys.

    ps...the pizza on yesterday's entry looks soooo good! Is that homemade? Also, Ali is always welcomed to our house to play and hangout! Let us know if you ever need a sitter...we are here with a house full of toys!


  4. today's picture of bella is so beautiful! she's just looking right through the computer as if to say - I see you!
    thanks for continuing to share your journey and being brave enough to ask for what you need tim, i admire it.

  5. Still thinking of you and sending prayers your way on a daily basis. I recently signed up for PUCK on igive. I was excited to see a $3 donation. I hope the $5 donation for first use was also received. I know it's not much, but I am a firm believer that it's the little things that can make a big difference.

    Ali is looking super cute in your pictures. She reminds me a lot of my Amelia who is five. Anyways, please remember that although we don't always comment, you and your family remain close to our hearts!
    God bless.

    Sarah and family
    Chino Hills, Ca

  6. Words just seem so insufficient, so little to give in the face of your pain. I'm thinking of you, Angie and Ali, and I'm praying for healing. Thank you for sharing your journey with us.
    Great job on the workouts, by the way! You will be back in awesome shape in no time. Do you know how to swim? Somehow I think you'd enjoy doing a triathlon. I'm just sayin' :)

    in Germany

  7. Thank you so much for being so frank about how you feel and how you are trying to live while grieving so deeply for Bella. I pray for you all daily! Your girls are beautiful and bring a smile to my face and heart when I see them!!! God Bless you All!

    Portales, NM

  8. Hi Tim, there is $5 in the jar now! wish i had a magic wand, i would give it to you x x thinking of you all, ps keep up the running! Bee

  9. As a mum of an EB angel who passed almost a year ago, I am really surprised by your comment " It was great for us all to get to know each other a little more in a context that wasn't all about Bella" Everything that I do and everything that I talk about involves my beautiful baby.

    Also I read your blog every single day, however it was not to read about you, it was all about Bella, she was the piece of the blog that I wanted to hear about, to see how she was doing and hopefully to hear about her getting better.

    We followed her progress every single day and we still think about her and Elle all the time. We follow all of the EB blogs to read about how everyone is doing as the subject is so very close to our hearts

  10. Hey Tim, hang in there, I can imagine the pain your in but that wouldn't come close to the actuality of it. I've never really experienced the grieving process for myself, so by you putting yourself basically naked on your blog every day to us really gives insight into this process. Barring a sudden illness or accident, in the upcoming years I too will experience the pain of losing a loved one.

    I hope you find yourself healed of your pain from your grief and find comfort in Gods arms.

    Houston, tx

  11. Hi,
    Still here, still thinking of you guys all the time, every time I read what you have to say to myself...I don't know how I would be right now if that was me... you guys are amazing.
    My brother and sister inlaw live near you, we have been to that little skating rink at the Irvine Center. It was a great time for my kids when they were little. We haven't been back to California for a few years, but your pictures reminded me to take my kids there again the next time we visit.
    I love all the pictures of Bella, they always make me smile.

    Long Island

  12. Sorry for not commenting more... you are right, I don't seem to know what words to write. I appreciate your willingness to show the blog world the reality of grief. While enduring some loss, I have not lost a child. You show us that it is real and difficult but the earth does keep turning. Hang in there and know that I pray for your family, your grief, and your hearts healing.
    Michelle - Texas

  13. Heaveno,
    My work day begins with the reading of your post.

    This is where I get inspiration for my day is always better than my previous day.

    In times when I think of my daughters, I think of Bella and Ali ... and it's hard not to drop tears and feel a tightness in my chest whenever I think of you guys.

    Just yesterday I reread some posts from Dec 2009 ... to "kill" the longing for Bella ... that's how I fill my heart with her.

    I'm struggling to accept her departure ... I imagine you guys.

    To me all children are pure concentrated energy in a body, that is where we charge our batteries for life ... Bella and you guys are the energy for many many people, and I am one of them.

    Admittedly, I drop tears when I read your feelings in writing but also leave out smiles, to see Ali, you and Ang in the photos with a smile powerful, beautiful ...

    Good to see you with strength ...
    Good to see and know that you guys look to the future with the 3 F.

    I love all pictures of Bella, but this is special, the harmony between you two passes to us.

    Kisses with love for all
    Sandra Afonso from Portugal

  14. Hi Tim,
    I'm reading a book, the practical neuroscience of the buddhas brain. Its not about buddhism rather about how the brain is impacted by thought patterns that are practiced in buddhism, thinks like meditation. It talks about the systems of the brain and sort of serves as an owners manual with instruction on how to activate certain parts of the brain and how to rewire the brain. Not dating you need this of course, I admire and respect you deeply as I see your perspective as very healthy in the face of difficulty. I just find it incredibly interesting. The book suggests touching your lips gently to activate a calming effect in the brain, maybe this trick will help you when the pain feels to much to beat. I wish I could make it better for you.

    You know I was talking with someone at work yesterday about it being the end of my chemo and a new difficulty I'm faced with, and I realized that these things, these challenges, are what I am here for. They are the bricks that pave my journey and in acceptance of what is, I realized I wouldn't trade the pain and I'm going to move through it all with peace inside and fill my lifes purpose, despite. I see you doing this... I'm proud of you. My heart is with you.
    Peace be with you today.
    Angela o.

  15. Tim I am glad you had fun meeting people not just because of Bella. You are SO much stronger than you give yourself credit for!! I read some where that grief is like the ocean, it comes in waves. Some are small and hardly even register with us and others knock us flat on our rears. I can see that is very true. Just know we are all here for you at least in our thoughts and hearts.
    Tiffany -near Houston

    As for the Mum of an EB angel...first please don't judge others for how they grieve. I hope no one is doing that to you. Grief is a VERY personal thing. Tim is simply sharing his experience here with us. I hope you are finding ways to work through the things you are going through. Please don't bottle it up and let it hurt you even more. I am sure there are people around you that love you and want you to feel better. Please find some one to share with or some outlet that lets you begin to heal. I am no expert but I want you to be okay. I don't know if I can help in any way but I would be glad to at least listen to you.

  16. I'm still following you each day, I am encouraged by your faith. I have older children, with older children problems. My oldest is 25 and has high functioning autism. It has a huge affect on his and our lives. He is living at home and struggling to put life together. It has been years of struggle and will be more, but he is a wonderful gentle person.

    I seem to miss Bella and find it bittersweet to see her pictures, yet I would much rather see her pictures than not. She was and is such a beautiful bright presence. I can only imagine what you are going through to not have her physically in your life. But I also know you were blessed to have her. :-) I hope this helps in some tiny way.

    Susan -Arkansas

  17. Yay for kids eat free!!!
    We had a great time, too. (And Molly was pretty good...nothing broken, spilled, etc!!!) Looking forward to Disney together. It was nice to chat, like you said, and not having it be all about Bella. But it was. She was there, in my heart, in our hearts, the whole time.

  18. I'm also still here - lurking away :-)

  19. I think of Bella and your family daily. May you continue to find comfort in your faith during this difficult time. Your poignant words are my daily reminder to hug my children a little longer and be appreciative of the glorious gifts that God has entrusted to me here in this life. I will continue to hold you and your family in my prayers.

    Kansas City, MO

  20. Oh gosh that picture of you and Bella is wonderful! My heart is aching for all of you, but also knows you have to go through this all to be able to come out on the other side and help Bella finish her mission!

    The other pictures you posted today, were also so lovely!

    Know that the 4 of you are thought about daily at our house in NJ. I told my girls to round up the stuff they have that they don't want for a garage sale. My 12yr old said "A garage sale in DECEMBER???" I told her I was not so sure December was the best time, but that early Spring would be great and we had money to raise. She asked what are we going to buy? I told her we were going to help find a cure for EB in Bella's name - all she said was "OK I'll go see what I have to sell." Keep on moving and Bella will keep on working in many hearts!

  21. Hi Tim,
    Yep, I've been a lurker since Bella passed. I am so angry at EB. I have been trying to focus that anger into action - trying to spread the word about EB. I've even been thinking maybe I need a career change. I live in Cincinnati, so I could work for RMH or somehow get access to the EB Clinic at Children's Hospital. I just can't do "NOTHING". Does that make sense? I want to honor Bella and Elle's lives - and every other child that has EB. I'll figure out something. Keep up the running - exercising can be so healing! Hug Ang and Ali for us!
    Beth Franzosa & family

  22. Hey Tim,
    I am a "Lurker" I post sometimes but not too often. But, I read every morning. I pray for you all every night. At this time we are not able to give a money amount donation to help you but, we are giving you and everyone our prayer support. Many, many prayers going out to you and the family.

  23. Hey Tim - Kinda off topic, but I wanted you to know that I thought about Bella (and Daylon, and Tripp, and Jonah, and all the other EB babies) last night. As I was taking supper out of the oven, I accidently bumped one of the racks with the back of my finger...just an instant, but it burned. An hour later, I had a tiny (microscopic) mark/blister on my finger...and it hurt. Then an hour later I got in the shower and as the water went over my hand, instantly my finger hurt and I pulled it back and thought "Ouch! That water burns on that blister!" Then it hit me...this is only a tiny, tiny amount of the pain that Bella, Daylon, Tripp, Jonah, Sam, Rafi, Leah, and all the other affected by EB feel each and every day. How DARE I even think about the pain I felt when these precious babies suffer day in and day out with amounts of pain that I can't even dare I complain that my finger hurts? I stood in the shower and held my hand in the water and as I felt that little sting of pain I prayed for each of these children and prayed that God would ease their pain. That He would heal these children. That he would bless them and the loving parents that so tenderly care for them day in and day out. And Tim, I don't know if this appropriate to say or not, but I couldn't help but thank God for taking sweet Bella and Elle, and Leah away from their pain and suffering and for bringing them back home to live with him. I can't imagine the amount of suffering these precious angels endured.

    All because I slipped while taking supper out of the oven...all because parents like you share your daily trials and the pain of your children...I am much more aware of our health and much more Thankful for it.

    I pray for peace for you, Ang, and Ali.

    Dana in MS

  24. Still here, just spending more time in bed than not right not, just caught up.
    Beautiful pictures! Here it got dark almost two hours ago... but the snow can be beautiful.

    Thinking of you and your family, and thank you for sharing your journey with us!


  25. I wanted to share this article with you about this little boy going for a stem cell transplant in Minn. I was curious if this was the same place you took Bella?

  26. Yes, I'm a "lurker" and I've been following your journey since Bella received her angel wings. To be honest, I don't even remember who shared your link but I look forward to your daily messages. May God continue to hold you in His arms.
    West Virginia

  27. As I have followed your family's journey, I have been amazed by your strength and your faith. I am so sorry that Bella didn't make it. She has made a difference in my life, and I am so thankful that you shared her story with us.

  28. The picture of Bella with you is another one of my favorites. You with your eyes closed like you are taking in the moment...cherishing it and beautiful Bella with those eyes. Great picture.

    I dont remember if I told you but Bella has a butterfly on my christmas tree. I smile when I look at it and think of her. It is one of few ornaments Clara doesnt touch.

    Sending my love to all and sweet kisses to Ali.

    Denise WI

  29. Bella and her story inspires me. Thank you so much for sharing your life. I know without a doubt that I am a better Mom because of it.

    Greenville, NC

  30. I am respectful of your ability to recognize in yourself the desire to retreat to bed, and your choice to push yourself into the world instead. The urge to walk away and your choice to return, remain, listen, and be open to messages of hope and clarity.
    I wish you peace.

  31. Hey Tim Awesome--I LOVE the first paragraph of this blog entry. You know that I am rooting for you and this exercise thing....seriously, it is the best therapy that I have ever had. Sunday was the White Rock Marathon and Half 18th half marathon and 11th for the year. The White Rock is one of my favorites because it is my hometown marathon, but also because the beneficiary is Scottish Rite Hospital for Children in Dallas. SRHC is an amazing place---all of the children there receive care for FREE. It is great to know that my running (something that I do for me) is benefitting something larger and more valuable. There were 22,000 runners and so many of them running for a many stories. I always walk away from that race inspired.

    Hang in there!
    Michelle K.
    The Colony, Tx
    (tune in to my blog later this week for a full race report)

  32. Saw this article online this morning. Another EB kid on his way to MN....God be with that family!

  33. Love your office! And LOVE the pic of you and Bella. It is such a sweet and peacful picture. I sure do miss her. Let's get together soon friends! Miss you guys :)
    Praying for peace for your soul.
    The Vanderbooms

  34. Excersise and dark chocolate with release feel good hormones in your brain and those hormones will help you feel a little happy when you need it.
    You and your family are always in my thoughts and prayers.

  35. I am a lurker coming forward to say that you are such a strong person. I found your blog while Bella was in the hospital right after the transplant. You always had so much faith. You always wrote just how things were. Didn't sugar coat it to much. I pray for you.. I pray for your family.. as I prayed for Bella. I don't know how you do it. How you still have so much faith. Your an inspiration to all who read your blog. Thank you for continuing to share. God Bless you and your family!!!

  36. Hi again,its just me the lurker...I pray for your family daily. Here is a prayer I say often, you can borrow it sometime if you need... :)
    Dear Lord,
    Hear me as I cry out in confusion, help me to think clearly and calm my soul.

    A little country town called
    Ragley, La.

  37. Hi you're still thought of and prayed for here, even if I don't have the time to comment every day. :)

    Mary in PA

  38. First time commenter, log time reader. You asked for it so it's about time I wrote at least a few words. I keep coming back everyday to read how your family is adjusting. The strength I see is just wonderful. The healing process will continue on forever. Continue to share so that we all learn something from Bella...


  39. Mornin Tim

    Really good sharing and commenting today. There is SO much love in the world. You are teaching us all how to grieve. Sometimes it's hard to accept a happy feeling just for a moment, without feeling guilty. Hooray for Colorado coming up. Outdoors and exercise works well for the grieving heart.

    I have had a book called "Breakthrough" for many years. It is from Unity and it fills me with faith when things aren't going well. I commend you for spelling out your grief. I cut out a little saying by Henry Wadsworth Longfellow. It reads "Believe me, everyman has his secret sorrows which the world knows not" and sometimes we call a man cold when he is really only sad". I still keep Proust in mind. He said happiness is beneficial to the body, but grief develops the powers of the soul". Every day in every way, you are getting better and better. Love, Greenie

  40. I'm a lurker just wanting you guys to know that I pray for ya everyday! :)


  41. De lurking to agree that grief sucks. Hope things get better for you every day.

  42. Hi Tim, I follow ALL EB kid up on 5D , and have, ever sense Daylon, ( my nephew) went to have his BMT in May 2010. After Bella passed away , then Elle, I had to stop reading for a while because I found myself feeling helpless :(. Well, I'm back now , and just thought I would drop you a line, and let you know, and your family, never left my mind, or my heart and never will. Maybe someday we will meet, as I too live in CA , not to far from you. (LA county ). keep your head up and keep working out because that helps a lot. love, xoxoxoxox

  43. Kristyn Felix ( Daylons auntie ) :)

  44. Tim:

    Just to let you know you still have all the support of your readers. You ability to put thoughts onto paper is incredible. I hope the Colorado trip brings you all much joy and hope. An angelic mountain slope and the cold crisp air should do much to clear your mind and appreciate all that surrounds you in nature (you seem to already, but it will probably be more powerful in that environment).

    I just bought my daughter butterfly appliques for her room (peel of decorations-like stickers). I look at them and see Bella. I think Ali should have some too. My daughter loves them.

    (If you want to share an address, I will find some to send to Ali. If you prefer to remain ANON in that regard, I understand).

    Thinking of Bella and butterflies.


  45. I think about Bella and pray for your family daily. I just cannot imagine the pain you must be in, even knowing that Bella is without pain. Enjoy Ali in this Christmas season.
    blessings. from louisiana


  46. Hey Tim, Ang, and Ali,
    You guys are in my thoughts daily. Thanks for posting all the beautiful pictures, especially the one of you and Bella.
    :) Kim in Durham, NC

  47. HI Tim,

    It was great to see you in passing at Joanie's last night. Can't wait for the kids to all get together on Sunday and enjoy the magic of the Holidays. Thinking of you all and sending our love.

    Peace & love,

    The Davidson's

  48. Dawn in Canberra still storming Heavens for you all and all EB families. great strength Tim in getting out of bed sitting on that pew in the Church,but hey I am not surprised by your strength-- you are your mothers son.I dont know that the pain ever eases I just think we learn to live with it.Go easy on you.

  49. Hello, Ringgolds! Tim, I'm so proud of you for getting yourself up to exercise - way to go!

    I'm always at a loss for good words, it seems. But I want you, Ang and Ali to know that we are all still praying for you. The waves of grief must be really tough to take, and I'm praying that through it the Lord will provide you with peace. I know I've said this to you before, but know that it's from the heart.

    Just a little something to make you smile...Byron (my littlest of the Team) was in here the other night when I was reading your post and he saw the pic of Bella's book over on the side bar. He got really excited and said "MOM! That's OUR book!" I thought it was neat that he remembered us buying and reading it!

    Anyway, I leave you with John 14:1. "Do not let your hearts be troubled. Believe in God, believe also in me."

    Love from TX!
    Laura (for Team A)

  50. hi tim,

    love the pictures, its funny that i live 10 minutes from you and drive similar routes to the hospital that i work at as a therapist and it's nice to see pictures. reality check! :)

    i wanted to share with you that I just finished up a grief and loss class for my msw degree and i shared bella's story with my classmates. I happened to still have the butterfly seed paper in my purse and showed it to everyone as we were talking about grief rituals and they were so touched and inspired to see that.

    we're thinking about you and praying for you and your girls, let us know if you want to take up our offer to babysit ali some night :)

    kristen and james

  51. Love that picture... the love between you two is so strong I can feel it through the screen. Thank you for sharing that with us.

  52. The words aren't coming to me but I'm typing anyway. Still here, still reading. :)

    We saw the ENT today who recommended that we have tubes put in Ari's ears. Still undecided about it but trying to think of what is best for him regardless of what I'm scared of. This last round of antibiotics really kicked our butts, he is resistant to the more gentle meds now and the next med "up" as it were, does terrible things to his tummy.

    I'm doing my little bit of fundraising although I don't think I ever sent you an email. I have posted a few places online about donations and the link for donating to PUCK is also at the top of my Amazon wish list for the holidays. And of course 5% of my sales this month...

    Hope Monday and Tuesday were gentler to you than Sunday.

    Cara in Tucson

  53. Dear Tim,
    It's enough just to breathe today. I'm praying that the mystery of the incarnation, of emmanuel, would go deeper and deeper and deeper into every recess, every crack, every crevice, every place of holding on to your way, every pain, every sorrow, every joy and burden. That when the silence falls, you'd know you aren't falling alone. We love you. Hang on.

    I saw The Secret Garden at the Chance Theater in Anaheim last weekend. They emphasized the theme of grief throughout the musical. It was a gorgeous allegory of death and new life.

    This is a song from the musical that made me cry. Disclaimer, part of the musical was about letting go. I am not advice giving through these lyrics. The theme of "hold on" just struck me and I wanted to share. Much love.

    "Hold On"
    What you've got to do is
    Finish what you have begun,
    I don't know just how,
    But it's not over 'til you've won!

    When you see the storm is coming,
    See the lightning part the skies,
    It's too late to run-
    There's terror in your eyes!
    What you do then is remember
    This old thing you heard me say:
    "It's the storm, not you,
    That's bound to blow away."

    Hold on,
    Hold on to someone standing by.
    Hold on.
    Don't even ask how long or why!
    Child, hold on to what you know is true,
    Hold on 'til you get through.
    Child, oh child!
    Hold on!

    When you feel your heart is poundin',
    Fear a devil's at your door.
    There's no place to hide-
    You're frozen to the floor!
    What you do then is you force yourself
    To wake up, and you say:
    "It's this dream, not me,
    that's bound to go away."

    Hold on,
    Hold on, the night will soon be by.
    Hold on,
    Until there's nothing left to try.
    Child, hold on, There's angels on their way!
    Hold on and hear them say,
    "Child, oh child!"

    And it doesn't even matter
    If the danger and the doom
    Come from up above or down below,
    Or just come flying
    At you from across the room!

    When you see a man who's raging,
    And he's jealous and he fears
    That you've walked through walls
    He's hid behind for years.
    What you do then is you tell yourself to wait it out
    And say it's this day, not me,
    That's bound to go away.

    Child, oh hold on.
    It's this day, not you,
    That's bound to go away!
    Also this song came to me just now

    've had questions, without answers
    I've known sorrow, i have known pain
    but theres one thing, that i'll cling to
    you are faithful, Jesus your true

    when hope is lost, i'll call you saviour
    when pain surrounds, i'll call you healer
    when silence falls, you'll be the song within my heart

    in the lone hour, of my sorrow
    through the darkest night of my soul
    you surround me, and sustain me
    my defender, forever more

    when hope is lost, i'll call you saviour
    when pain surrounds, i'll call you healer
    when silence falls, you'll be the song within my heart

    I will praise you, i will praise you
    when the tears fall, still i will sing to you
    i will praise you, Jesus praise you
    Through the suffereing still i will sing

    when hope is lost, i'll call you saviour
    when pain surrounds, i'll call you healer
    when silence falls, you'll be the song within my heart

    I've had questions, without answers
    I've known sorrow, i have known pain
    but theres one thing, that i'll cling to
    you are faithful, Jesus your true

    when hope is lost, i'll call you saviour
    when pain surrounds, i'll call you healer
    when silence falls, you'll be the song within my heart

  54. A lurker here...just congratulating you on your run. Keep your eye on the prize (cheesy, yes) and keep thinking of your trip!

  55. Thinking of you and your family. :)

  56. Hi Ringgolds~
    I am a semi lurker, seldomly commenting, reading daily. I pray everyday for you, Elle, Daylon, Jonah, Tripp etc. You are showing amazing strength on this journey of grief. You also inspire me to not "take the day off" from exercising for my mental health. Crazy how a few situps and a "wog" can clear your head and keep you focused. God Bless you everyday but especially during the Christmas season. I miss your daughter, I can't imagine the size of your grief and longing. I do picture her as one of the Baby Angels this season. If you get a chance look for that book "Baby Angels" it is truly gorgeous art & story that Ali might enjoy. We have one for our niece that passed away. I am rambling, sorry. Hugs, peace and love from ND. Holly

  57. A lurker here just letting you know I'm here and have been very touched by your journey. Bella lived a life way beyond her years and you are lucky to have been there to share it with her.

  58. Another lurker... I have been following and thinking, thinking and following. Today I changed it ip a bit following and feeling, feeling and following. Small change in perspective big change in response.

  59. Been reading, thinking, and praying for ya'll daily! Just take a deep breath and face things one day at a time. And sometimes, when you really need it, it's perfectly okay to take life just a minute at a time! Remember there is no time on healing! I'm so incredibly sorry that you have to know this pain. What a blessing your family is, Tim! God Bless all of you. You are SO loved!

  60. Looking at that BEAUTIFUL PICTURE of you and Bella brings me to tears. Oh my goodness, such a gorgeous picture. My heart aches right now for the pain you feel on a daily basis. I can't imagine how you and Ang hold it together everyday. When I read your post every night/day, I immeadiately go to my children and hug them and kiss them and thank God for them. Not only did Bella inspire me to become a better person, you and Ang have as well. Thank you for that.

    Keep up the good work on the exercise front!! I need to get some inspiration under my butt as well. LOL I just can't get up the energy to workout every day even though I really need to. We have gone walking the lake near our house everyday. Well, yesterday and today. But we are going to make it an everyday thing. Hopefully from there I will be able to get the energy to start working out on the eliptical again. We have one in the garage that just sits there. What a waste huh?

    The pictures from your "office" today were beautiful. Where were you?

    Stay Strong!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(11 mos.)
    The McLaughlin Family
    Moreno Valley, CA

  61. My thoughts and prayers are with you all for strength and joy. May the love of the Christ child surround you and continue to guide you.

    I'm definitely a lurker, and check daily to see what you are generous enough to share. Thank you from the bottom of my heart.

  62. Hello Tim,

    I'm still here, reading everyday. I'm sorry I've not commented more. It just seems there are not enough hours in the day lately. Trying to make this time of year magical for my little ones is exhausting. The older I get, the more respect I have for my parents. They made it magical EVERY year for three kids!

    I noticed some have commented on the 4 year old little Wisconsin boy going for BMT in MN. I followed up on the FB post Angelique made a few days ago about little Charlie. Talk about unexpected emotions! Wow! As I read about his story, I just sobbed. What if this treatment kills another EB baby? Can I continue to support this research? Or, what if he survives and his life is improved? Why not for Bella? What if she had been a little older? Either way, I feel like I'll be crushed, but I know I can't look away now. I also know this is where faith comes in and cognitively, I get it, but what a test for sure. I understand why you walked out on Sunday, and I'm so proud of you for going back in. I imagine there will be so many more moments like that, but the way you're able to be present in those moments, is inspiring.

    Looking forward to hearing about your Colorado trip. I'm from Montana and grew up skiing. It will be so good for you to get out there and just let GO! I hope Ang and Ali will get to ski as well.

    Thanks for hanging in here. This is such a great blog community!

    (Oh, and I'm up to $15.70 for PUCK on just by searching and shopping! Way cool!)

    Be well, sweet family!

    Elk Grove, CA

  63. Hello Ringgolds,

    I'm a lurker - I never know what to say because there are no words that can make the pain you must be feeling any better... I can't fix things or make it all ok...

    I read the blog daily and often find myself thinking about Bella and what a brave little girl she was.

    I especially love seeing your 'Bella pic of the day' - it is a way for us to get to know her a little more :) Thank you for sharing Bella's story with us - it means so very much.

    Lots of love to you all,
    Allie (from Australia)

  64. Hey, just wanted to let you know I think of Bella, and you every day. I can't imagine the pain.

  65. Hi Tim and Angi~

    I just came across your blog today and haven't had the chance to get to know Bella and your beautiful family yet, only two posts in and I'm weeping with you. I'm so sorry for the pain of your loss and so grateful for the faith you have in our Lord and Saviour. Though I haven't lost a child, I am currently in the mourning process myself and your faith is encouraging me to keep visitng that pain knowing that "as I plunge into the darkness I will find the sunrise." (a quote I recently read in "Choosing to SEE")

    Thank you for encouraging me today to keep seeking my Lord and Saviour.

    Praying for you and your family,

    Beka Joy (AZ)

  66. Just wanted to stop by and say hi and let you know I am praying for you! Blessings!