Wednesday, October 27, 2010

October 27: From Louisville, KY to Asheville, NC

Early in the day in Kentucky...


Well, as I sit here and type to "y'all," it is snowing back in Minneapolis, and we are sleeping here in Asheville, NC with the windows open. Crazy. We were mad to hear that news because we were looking forward to snow. Ali got so upset when she realized she is missing out on snowman and snowangel making. Tough to argue with that (remember, a 4.5 year old knows nothing of "commuting" or shoveling... snow is pure fun).

The drive today was beautiful again. We slept in, got breakfast in the lobby, and headed out of Louisville around 11am. These first few legs are short on purpose so we break Ali into road trips, and don't burn our selves out before we even get going. We stopped for lunch and let Ali play in the giant kidz play zone for a while to burn off some steam and be a kid for a while. That was a good thing. I got into the mix and before you knew it, two other little girls and Ali were attacking me, chasing me, me attacking and chasing them... the whole bit. When it was time to split, I gave the other mom and grandma the signal for "Team Leave," and they picked up on it right away, and before you knew it, the girls all had their shoes on and were waving goodbye to each other.

The Driver...

The Co-Pilot...

And... The Princess... check out the new pink headphones...

Ali pretending she's on a roller coaster going up and down the mountains...

We had a lot of fun going over (and through) the Great Smoky Mountains from Knoxville, TN to Asheville, NC. It was awesome! The colors on the trees were great, but we also drove into some low cloud cover and were actually IN the clouds for a while! When we came out the other side, the sun was starting to shine in the early evening and we were greeted in Asheville by a big fat rainbow. That was pretty cool.

The wonderful nurses that are running the EB race for Daylon, Bella, Tripp, and Jonah on Saturday here in Asheville put us up in this beautiful, quaint Bed and Breakfast called The Sweet Biscuit Inn. How can you go wrong staying at a place called The Sweet Bisuit Inn??? It is BEAUTIFUL. Turn of the century home with the swing on the front porch, old creaky wood floors, a grand staircase, and EASILY twelve foot ceilings in our bedroom and bathroom. Oh, and the cutest claw foot tub in the bathroom you ever saw! Ali LOVED her bath in it tonight!

What service! Seriously, those little shower heads are GREAT for kids' baths!

Tomorrow morning after breakfast, we will head to the Biltmore Estate for some goal setting (LOL), then some wandering around in town before we head off to my sister Mary's home in Winston-Salem, which is only a couple of hours from here! P.S. If anyone who is coming on Friday has a small P.A. or a two channel amp with a guitar chord and mic, mic chord, and boom, would you bring it? Patrice has gotten 50 RSVPs turns out (30 adults and 20 kids) and I've received 14, so it would be great to have sound amplified. Thanks!

Thank you all for your wonderful responses on the comments yesterday. They really made me feel better. Today, I asked Angelique to read them to me as I drove. It was nice, because it made me feel as I imagined Bella felt when I read to her your words just a few short weeks ago.
It was nice to be contributed to.

Do you let others contribute to you?

One of the conversations on the blog I want to address is the worry that some people won't know what to say, either on here or in person. Don't worry about that. There are no words to say, just feelings to convey. If you don't know what to say, SAY THAT! In that moment of authenticity, humility, and vulnerability, we will be connected, and THAT is the point of words, really: to connect each other to each other.

Here's the thing: it is not the words that matter. It's the sentiment behind them that counts.

I'll say it again; It's not the words that matter, it's the sentiment behind them that counts.

Here is an example: If I say "THANKS" in a condescending way to someone for giving me poor service, is it the same as when I say "THANKS" to someone who just let me stay/eat in their home? Of course not. But, hey, I used the same word, didn't I?

I know this is a quick and dirty example, but the point remains. If you walk up to me, look me in the eye, and say, "I am so sorry for your loss, I just don't know what to say," and you mean it, you just gave me all you needed to give.

Here is another important piece of the puzzle (and by the way, this stuff goes for any person - not just us - that is grieving): don't project what you think we are feeling onto us. We are not the same, and each person grieves in their own way. If you would be devastated, that may be true for you, but it may not be the experience someone else is having.

Here are 4 reasons why I am not devasted by the death of our daughter Bella:

1) My faith. I believe that she is in heaven with Ang's and my dad happy and free, waiting for us to join them with great anticipation. In my heart I can see her smiling that giant grin in heaven, LIGHTING it up even brighter with her addition to the chorus of joy that exists there. True? Who knows, but it sure makes ME feel better believing this truth, so I do.

2) Bella is never going to cry in pain from EB again. That makes me feel very calm.

3) We've known that Bella could die at any time since the night she was born. There was no expectation for a happy and long life for Bella. That is why we went to Minnesota in the first place. With EB things start bad, and just get worse. Not every case of EB is that way, but Bella had one of the two rarest and most fatal versions of the disease, and not a day went by where it it didn't significantly impact her and our lives.

4) We began to grieve for her loss in the end of July/early August. Let's face it, we lost that little spark plug the day she was intubated. I never heard her speak again, I never saw her big smile, and what I did see of her eyes was a washed out, medicated shell of what I once gazed at. She lost all her hair, grew to an unrecognizable size, changed color, and even grew in different color eyebrows. All the while that I knew the spirit Bella was still there, that fun, angelic, smiling, laughing cherub was gone. July, August, September, 11 days into October. 99 days. My friends, the grief had already begun for Angelique and me long before Bella's heart stopped.

So, I share all of this to give you an insight into two things:

1) It's not what you do (say), it's who you are being (how you say it)
2) It is not as raw for us as you may think, so you can bring it up, you can break down and cry in front of us, it's okay. We've done it, too.

Finally, I think there is a pressure to feel like we have to be strong and support someone who is grieving. Like they need our help and assistance somehow. When we ourselves are grieving the same loss, and we find ourselves weak, how could we possibly support the person who lost their child?

These gatherings we are holding are not for you to come comfort us.

They are for us all to come together to comfort each other.

One level playing field.

Yes, we may be at the center of the field, but we are all on it (and in it) together. After all, is there a quantitative measurement for love? If you loved Bella, you loved Bella. Who cares from how far or for how long or in what capacity that love was borne? My point is once you have loved someone, when you lose them it will hurt. That is the price of love, and I for one am HAPPY to pay the fee every time, for the beauty of love always triumphs over the pain of loss.

Alright alright, enough for tonight.

Keep those comments coming, I don't care what you write about, I just care THAT you write at all.

God night.

This one is for you, Nicole!

P.S. If you haven't RSVP'd for NC, TX, or AZ, please do so!

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  1. Hi Ringgold family prayers, love and blessings from Dawn in Canberra AuStralia.Departing next Fri for quick trip to New York,to visit daughter so will be thinking of you from not quiet so far away!

  2. Hi Tim, Ang and Ali,

    I often go to write you a comment but never know quite what to say - anything I can say seems really inadequate considering that you've just lost your beautiful, precious little girl.

    I think of you often and check the blog every day to see how you are doing. You are an amazing family and your love for each other shines in every post that you write. Thank you so much for sharing your life with us.

    Lots of love from Allie

  3. Tim,
    Well said! Moved me to tears.. thank you for acknowledging everyone's love (be small or large) for Bella!
    Enjoy your trip.. hope to see you guys when you get back to California..
    Central California

  4. Oh! So sincerely said. I appreciated reading #4 because I'm a bit surprised at the difference in her appearance in September when I joined the community supporting and praying for Bella and the photos before BMT.

    It is overwhelming to think of what her little body went through. Her strength is well.....miraculous! And humbling.

    What a spirit little Bella had and what a great gift that this blog is a testament to that.

    Interesting thing happened this week....I have a five year old (where does the time go) and I have never taken his life for granted, always known he is a GIFT. He rarely had pain or was hurt during his first five years. This week, he took a nasty fall at the playground. For 21,845 hours he didn't move (in reality it was about 5 seconds). During that short time, my world turned black and icy cold. T/A - it ended up just a really nasty big fat lip and lots of tears.

    When I say I CANNOT imagine the life of a parent who has a child with EB, I now one can imagine it unless they live it. I thought of Bella that night (and Tripp/Daylon/Elle/Jonah) and their daily pain. Tell you what, my donation to PUCK is coming next week as I planned and I will be finding more money to contribute.

    NO child should suffer like that. NO parent should have to out live their child.

    There are times I want to start ignoring the blogs and these children. It's hard. It's sad. It's painful. But the joy and the love and the faith....nope, I'm in it for the long haul.

    I have Faith that in my lifetime, there will be a little baby with EB that will live that long and happy life. I believe there will be a cure. I believe that I fell upon Jonah's journey for a reason.

    It's going to be ok....
    Kim from CA

  5. Yipppeeeeee!!! First reaction: gasp and mouth if I just saw a loved one that I hadn't seen in years exit the jetway. Second reaction: flooded eyeballs...with happy tears!!! I smiled so big that my lips literally hurt & cracked...HA...(TMI)...Santa Ana's are here in full effect, and I should have leaned on chapstick today, for sure! Well, thank you so much for pulling through with my request, and posting a picture with Bella Doll in her carseat...yay! (omgosh...Ali looks so little here, compared to the recent pics!)

    While reading tonights entry, I can completely feel/hear the peace and calmness in the tone of your writing (voice). Man oh man- you Ringgold's- your crown(s) is/are going to be a mighty fine. Glory be to God. I thank him for keeping you close to him and for continuing to pour out his love and peace over you. It clearly can be seen and felt.

    Isn't NC beautiful? My Mom lives in Raleigh- and has become a major Duke fan. Which is hysterical- my mom is Romanian born and can't follow sports to save her life. Her neighbors have 'tagged' her and she loves the ambiance of the school spirit. I would love to eventually live there. I know...a major change of pace- but it is beautiful and the people are just so super down to earth, and nice. My Mom has some pretty significant plans out there; just to skim the surface- the plans consist of an orphange (with an abundance full of cuddlers), women's center/hospital and a school for the will be amazing. Our family has been helping the poor in Romania for the past 15yrs. We have built 24 churchs and homes (lost count). In one of the extremely poverished villages- we purchased a small home and converted it to ONE big kitchen. Although only our family (workers) are allowed inside; we have a window where we give out staple foods such as: corn meal, flour, beans, etc. It's pretty cool. I go rambling again! :)
    Your Inn sounds quiet adorable and quaint! So do you get bed in breakfast coming morning time? Ok, last question: what jersey are you wearing? Definitely not & white? hmmmmm

    with all our love, always!
    nicole b & family

  6. Tim & Family- I still keep following your story and the blog on a daily basis. I feel blessed to have "known" Bella and I believe she is now an angel looking out for us all. I just purchased Bella's book and it came in the mail yesterday. I can't wait to start reading it in the next few days. Hope you have a safe trip as your travels lead you across our great country. Love & Prayers from Mary in Montana

  7. I have not commented yet on the mood swings of little girls. When you wrote about the scanning of the new pink headphones I swear you were talking about my child. Amelia is five, is in kindergarten, and from what we are told is so well behaved. I cannot help but ask her teacher if she has my child confused with someone else's. Just tonight though she was with her grandparents and was telling them how excited she was to be sitting at a new desk in school. Everything was going great you would say she hit the wall. And her newest learned behavior from school is growling.

    It is refreshing to hear that Amelia is not the only one.

    Please continue to post the great pictures of your family and your journey. I have only been reading your blog for a few weeks, but feel I have been a part of your journey for a long time.

    Safe travels to you and yours.

    Sarah and family
    Chino Hills, Ca

  8. Thank you for another insightful post! I hope that your road trip helps your healing process. I think about you often. God bless!

  9. Tim and Ang,Yes I will have to admit I am one of those people that don't know what to say, And when it comes to talk about Bella there are really no words only feelings that come to me I just feel very sad everytime I think about not seeing her again, At the same time reading your #1,2 and 3 reasons (why you are not devastated) that makes me feel a little better also knowing that you are at peace. Also I feel very lucky and blessed to had the chance to hold her a couple of times and look at her beautiful blue eyes, I could have hold her for hours and just stare at her, Thank you for letting me have that time with her I will tresure those moments that will stay with me forever. I can't wait to see you all back in CA...Love, Maria McGovern

  10. To all Bellas family, I can feel your pain, I lost my beautiful baby with EB in December last year and the journey through grief still continues. Every day without him is a stuggle and I miss him terribly. I hope that they are together looking down and flying around with their new butterfly wings xx I have to beleive that they came to us for a reason that we were chosen to care for them. I have read about Bella since January this year and will always think of her x

  11. One thought from the "actions not words" girl..
    This week, a decision was my made to bring my grandfather home with a hospice program in place. Geez, I hate that word.
    But...I was thinking a lot about your journey with Bella, and suddenly, I found myself making My own list, and being thankful. Mostly for still having a grandparent for myself, but also a great one for My kids...
    I love these old memory pictures at the end of your little project has because I've gotten to see them all.
    Ali was definitely still a little girl when you started your adventure. I see her withher headphones and she looks 5 years older! (Ready for a teenager????)
    I took Bella's Blessings to work for EB Week. A coworker came back the NEXT day, needing to know more, As she Had finished reading. It was nice to talk about Bella's journey.
    Love from home ( I commented on patrices blog, asking her to high you all for me!)

  12. I first came to your blog many months ago, but I stopped reading because I felt like I was intruding. I didn't feel like it was my place as a stranger to read about your family and things so personal. I wasn't sure if I'd want strangers looking into my life if tables were turned. But for some reason I came back about a month ago, and I am so grateful that I did. Your view of life and your appreciation for everything is so refreshing and, in truth, awe-inspiring. If you, in the midst of such sorrow and heartbreak, can find hope and profound joy, then surely the rest of us in our "ordinary" lives can as well. Thank you for that.

    The strength and poise that you and your wife have shown is remarkable. I am honoured to have shared, albeit in a very small way, in your journey. I think of you and your girls often, and though I loved my children always, I am now conscious of that love at all times - even when encountered with poopy hands and those colossal meltdowns. That is something that I owe to you, and I guess, ultimately, to Bella. Thank you so much for allowing us into your lives. I no longer feel like an intruder, but welcomed.

    Thank you for telling us all about your beautiful girl. I don't know how you do what you do, but I'm glad you do it. We are still essentially strangers. We've never met and likely never will, but know that someone way out here on the East Coast of Canada is thinking of you all.

    May you carry peace and joy with you always.

    With such appreciation,
    Heather, Newfoundland, Canada

  13. Tim, Ang and Ali,

    The pictures from your travels are just beautiful. Hopefully it's making you feel God's presence all around you, and the rays of sunshine remind you that it is Bella's light in Heaven falling down around you to warm us all. Praying for safe travels for you as you continue your journey.

    I absolutely love seeing the early pictures of Bella. She's so beautiful that you just can't help but smile at the sight of her.

    Keeping you all in my prayers.

    Milton, PA

  14. Tim, Ang and Ali,

    You are all so strong and amazing. I am struggeling with your loss I just cant seem to get over it as it was going very well even the day before she passed it was so sudden. I know Bella was in allot of pain and that all of it is no longer. I am happy for Bella but I sure miss seeing her everyday and knowing how she is doing and progressing.

    God bless love you all so very much

    A Better Place

    She’s in a better place right now
    Than she’s ever been before;
    All pain is gone; she’s now at rest;
    Nothing troubles her anymore.

    It’s we who feel the burden of
    Our sadness and our grief;.
    We have to cry, to mourn our loss,
    Before we get relief.

    We know we’ll reconnect with her
    At the end of each life’s road;
    We’ll see her cherished face again
    When we release our earthly load.

  15. WOW Tim you always say what you feel in the most amazing way - I was in tears reading today.

    You are so right - everyone greives in different ways and people need to respect each other for that. I see so many people cutting each other doiwn, versus supporting each other. That is one thing I have taken away from you. We need to support each other through life to make it worth living! Thanks

    I am happy you all made it East and know your family will have a wonderful time sharing Bella's story!

    Thank you for posting and keeping us involved in the journey!

  16. I wanted to do something to help with EB awareness week so I shared your blog on my facebook page. I'm sorry we can't meet up in AZ, but I keep you and your family in my prayers and hope the best for you all!

  17. Hi Tim: Sure hope you are enjoying the scenery of our beautiful country. The pictures you are taking are awesome.
    I am so sad that I can't make it tomorrow to meet you guys. I just know that someday we will meet. I am postitive that you are going to be so involved in EB research and awareness that we will meet at one of those functions someday. I will always be involved in EB too.
    I could relate to so much of your blog today. The reasons for not being devastated especially. Leah is gone but pain free too. I would give anything for Leah to be with us right now, but if she were to be in pain, why would I want that. The last time I saw Leah (Christmas Day) she was hurting so much it just broke my heart. Seeing her again, the day she passed, she had such a sweet little smile on her face. No more pain for my precious granddaughter. Thank you God for that.
    Love you guys. Take care and drive carefully. Love and Peace Leah's Nana

  18. Wow- aren't those Blue Ridge Mountains spectacular!!!! I hope and pray they are bringing you all some much needed joy. For culinary joy, check out Salsa restaurant in downtown Asheville. I used to live there, and it is absolutely incredible. Yummy Mexican/Caribbean/South American fusion and very casual and reasonable. Still wishing with all my heart that I could make it to Winston Salem. If I could I would give you all a big hug and simply tell you how truly and deeply sorry I am for the loss of Annabella, and I would also tell you that you are my heroes! You have helped so many other eb families. Bella has helped the doctors learn, and will continue to do so as they can refer back to what did and didn't work for her. The gift she gave is priceless. Thank you so much for that.

    While you are in Winston-Salem, try to check out Old Salem and get some Moravian sugar cake! Ali will love it! (Heat in the oven, and it is even better...yum.)

    Safe travels. Can't wait to see the posting from the W-S gathering.


  19. Sweet travels - The Builtmore is FANTASTIC - Y'all wil LOVE it!

  20. Tonight Punch had "Dead Pizzas" where you can get a pizza version they don't make anymore for $3. While I was waiting for my pizza (the place was packed!) I instinctively looked for you guys. When I remember that you are on the road, I remember Bella, and get a little sad.

    Travel safe!

  21. glad the travel is going well. your way with words is such a gift. you always seem to know what to say..i love the pic of ali and bella

  22. Good Morning! I wish I could make it to a gathering. My Mom lives in NC near WS but I can not make it this week! I just thought I would let you know that as you travel from Atlanta to New Orleans you will probably be on I85 through Alabama. 2 hours out of Atlanta you will pass through Lee County in AL. I will be in Opelika right off the interstate. You will no doubt pass through many small towns on your journey that have been sending prayers as you shared your precious daughter with us! I continue to pray for your safe travels. Lynn PS- my hubby works for the Sherrif's Office -keep under the speed limit and wear seat belts- if you have any problems on the way call Lee County SO!

  23. Thank you Tim, Ang and Ali for sharing this journey with me. Your pictures are beautiful! I love those Rocky Mountains! I wish I was able to attend one of your gatherings but I'm stuck way down here in Louisiana. Oh well, I'll be there in spirit! I continue to pray for y'all.
    I know what you mean when you say you've been grieving before Bella was actually gone. I helped take care of my dad when he was dying of cancer. It is like a process of letting go. When you come to realize they are better off in the next life than in this one. I think it was my selfishness that wanted him to hang on longer. He was so tired and in such pain. How could I ask God to let him stay with me? At the end I asked God to let his passing be peaceful and painless. God did say yes to that prayer and we were able to be with him when he started living his new life. There was grief and sadness, but also relief. I always say at funerals that I don't cry for the deceased, I cry for the ones left behind.
    I hope this road trip brings you lots of laughter and fun!
    Lots of Love,

  24. Tim and family, Glad to see you are enjoying your travels, wish I lived closer to one of your stopping places.
    After all that you and Ang have been thru, you need some family time with Alli to re-group and re-boot.
    Be safe in your travels, I know Bella is watching over you.
    Your friend in Portsmouth, Oh, Carla Spradlin

  25. Hi beautiful family, I haven't commented in a while. Tim, you hit the nail on the head, I didn't know what to say. I still tear up thinking about little Bella and how much your family will miss her.

    I'm happy you are having such a beautiful drive. The pictures are wonderful. It is cold here in MN. My kids are so excited for the snow. You will get to experience it when you come back in Feb. In fact, it is usually the coldest month of the Winter so you will have to bundle up:).
    Safe travels. KD, MN

  26. Your words about grief and how people grieve differently are so very true, thank you for sharing.

    The photos are gorgeous, it looks like you are visiting some really beautiful places. And I wish I could stay somewhere called the Sweet Biscuit Inn!! I hope you continue to have positive and enriching experiences on your trip.

    I am in the middle of a huge and stressful wholesale order for my online jewelry store, and my son is sick, and we are all just tired and already wanting this week to be over. But reading your blog still brings me new perspective and appreciation for my life, and for that I thank you.

    Cara in Tucson

  27. I wish I could join you guys in Phx, but I'm in Flagstaff and right now just don't have the means to make it down there. I do hope that many people come and you have a great time though!! Looks like your trip so far has been great! I lived in TN for about two years and it is beautiful, especially in the fall :)

    Bonnie in Arizona

  28. Well, now listen to you, Mr. Tim - rockin' that southern "y'all" thing. You better get your ears tuned and ready to hear that sweet drawl! When I was in high school (back when dinosaurs roamed the earth), I had the opportunity to spend a summer in Mexico. My American roommate was a gal from Long Island, NY. Talk about contrasting accents! When she went back home, people asked her if she had been to Texas because she had picked up my southern accent. HeHeHe!

    Loved your comments on how to respond to folks who are grieving. Perfect advice. Me? I just cry...and I do it well. Most people don't want to hear lofty platitudes. Just a simple "I'm sorry" speaks volumes.

    Now, completely off topic - Remember Donna Summer from the '80s - a disco diva? Well, yesterday was a "She Works Hard for the Money" kind of day for me. I told you about the violent weather here in NC and the possibility of tornadoes. Imagine spending 50 minutes with high schoolers in lockdown/tornado drill positions because of tornado warnings in our area. Not my idea of a good all! Thankfully it was just precautionary and today the sun is shining. But I don't want any more of those good times ever again!

    Safe travels today as you head to W-S, and I am so excited about tomorrow night and getting to meet y'all!

    With affection,

    A friend in NC

  29. Well now, you tell miss Ali that there wasn't near enough snow here in MN for snowmen or snow angels just yet. It melted right away (the ground is still just too warm). We did all just about blow away from the wind though and many of us had no power which made for a cold and dark evening. We'll do our best to get a nice 8" snowfall to come through just before she comes back in February.

    I still check on you guys every day - Bella is just never far from my mind. I'm sure that's true for so many. What a special girl who was so very blessed to be born into an extraordinary family.

    Safe travels on your journey - may God be at your side and Bella's spirit overhead.

  30. Wow...what a powerful message. Every..single...bit. It is hard not to think of how hard this must be for you, Ang and Ali. I know I do it. I hope I havent projected what I think you are going through on you. I know that "grief is as individual as the individual going through it". So even what I think it must be like is not the reality. Thank you for reminding me of that.

    Before Bella died I prayed every night...faithfully. If I forgot...I would wake up the next morning and instantly know it and I would pray. But since Bella passed I cant say the same. I dont know why it is because she isnt the only one I have been praying for. Everyone I pray for matters to me...Tripp, Jonah, Daylon and now Elle are on my list. Instead of thinking I need to pray when I climb in bed my thoughts are of Bella and I fall asleep thinking of her. I want to climb in bed and pray first but I dont. I guess at this point it is still hard not to pray with all the hope I had for Bella.

    Ahhh, Ali. She is a girl after my heart. I love making snow angels!

    I am thrilled at the turn out that you will be having. Even though I went to the memorial I wish I could be with you all at each of the gatherings. I would love to meet all of the wonderful people that share my love for Bella. Thinking of continued safe travels.

    All of my love to you all and sweet kisses and bunches of hugs for Ali.

    Denise WI

  31. Okay your post made me cry for like the 93rd time at work since we met you guys. You are so honest and open with your feelings. I will need to go back and re-read your post again, but wanted to share with you that you have and continue to have a profound affect on the way I see and experience my world.

    By the way, I am not at all surprised that you and Ali attracted two other girls at the kids play area. I would expect nothing less! :)

  32. Dear, dear Tim, Ang and Ali,

    I am so sorry for your loss. You all are such an inspiration to me. I think of you all daily and your faith is such comfort.

    This trip sounds like the perfect way to transition back to CA.

    Much love,


  33. Tim,

    I sometimes wonder how many lives you must have already led to be so amazingly WISE! I spend my days in a haze of ill-formed thoughts and the odd moment of clarity. But you seem so precise in your thoughts and in the ways you transmit those thoughts.

    Coming to the blog most days, I always learn how to see things afresh. Your photos aren't the only stunning visuals on your blog; those words of yours, and the feelings they describe, are such a gift to us.

    Miserable rainy gloomy morning here today. Am being assailed by small cat and trying to avoid large pile of washing and sorting of endless small, odd kids' sport socks by being here instead! Socks are only fabulous when they are attached to little feet - in twos.

    Hoping for sunshine for you all today,


  34. Tim,
    I've said it twice (I think) before... you really need to turn these posts into your next book. Not only the riveting journey that Bella took and all the inspiration she brought to this world, but your journey now. Your writings touch so many issues that are core to how we choose to live our lives, not just the grieving process. They make me THINK. Several times over the last few days, I've reminded myself about your comments on human BEING, not human DOING, as I am guilty of tilting toward the over-doing end as I guide my family through our busy life. I wish that we lived close enough to attend one of the memorials (you blew past us on Day 1 (Chicago suburbs))!! But I will be with you and all those gathered in W-S in spirit tomorrow. I've often lamented not living close enough to hug Patrice in person (her Jonah's EB has been very similar to my Caroline's experience).

    Ang, since we "hear" Tim speaking to us, I think of you as the "silent hero." I'm also a working (part-time) mom with 2 healthy children and one with EB. I empathize with what it takes to provide for your family in so many critical ways.

    You all continue to be in our thoughts and prayers. I'm loving being a fly on your windshield, enjoying the pictures of your cross-country trip and experiences. What a wonderful way to make your way home. Just like Bella's journey, it is not a straight line, but one that curves and dips and is infinitely more enriching.

    Take care,
    Adrienne Provost
    Palatine, IL

  35. You're not missing out on the snow angels just yet! The snow melted within a minute of hitting the ground. What you're missing is chilling wind. It feels like icecicles are being thrown at your face. No fun, yet. :) Actually, we had gusts up to 60 miles and hour and Daylon's stroller collapsed...with him in it! Just picture Keira and I standing in the middle of the street, screaming and yanking on the stroller. Good stuff. LOL! We miss you guys! Great pictures!

  36. You four are simply amazing.

    Ang you are one strong woman. I can't even imagine how I would be able to come to terms with the death of my baby. When my son was born early with an array of struggles I had a difficult time even functioning. Here you are continuing to hello other family's with EB through awareness.

    Tim, your words are so heart felt, strong and warm. I hate reading and for some reason I am drawn to your words. You have went beyond means to help Bella and did everything in your power to help that angel. You are an inspiration to man out there that are going through touch times. You leave no doors unopened and you keep chugging right along.

    Ali you are the sweetest big sister out there. you are smart, beautiful and loving. Bella is so lucky to have you for a big sister. Keep smiling princess. You will do great things in life as you have great teachers.

    Bella, she was such a fighter. that Girl had more fight in her them any adult I know. She was only hear for a short while but in that time she made some major impact on a lot people around the globe. Now she is up in heaven watching over all of you. Love you sweet Bella.

    It is with great regrets that I am not able to come to one of the gathering because i sure would love to but please know that i will be here in Canada thinking of you all.

    Woodstock, Ontario

  37. just wanted to drop in and let you know that I'm thinking about you 4 today! It has become such a habit to come back and check for the most recent comments...kinda like checking FB for peoples updated status...haha. I'm hooked on the comments! God be with you today and everyday!
    love always,
    nicole b

  38. Whoa! To be greeted by such beauty as you travel. And the rainbow! How sweet?!

    Tim, thanks for addressing concerns over what to "say" or not say. I'm in a location that doesn't allow me to visit with you at a Bella Gathering, but I certainly relate to your words and will have use for your insights.

    I tend to be a blabbermouth. I let things flow out of my mouth and they aren't always appropriate, or I could say they don't come out the way I intend. I have a really hard time communicating effectively, but I'm almost compulsive about the words flowing out of my mouth. Honestly, I think I would be much better off if I just said nothing sometimes, instead of trying to say something and it comes out all botched up. I already knew this, but again, reading your words just bats it home. I absolutely adore your thoughts and writings. Before Bella came along, did you know you had this gift? I'm just curious.

    Well, enjoy N.C. I know I've always enjoyed when I travel through. VA and NC are beautiful! Ali is such a trooper! When I know an awesome kid, I always let the parents know what a great job they've done. The kids are a product of their parenting. She is so, so lucky to have you two!

    Okay, enjoy! Have a blast at your gathering!


  39. I wanted to let you know not a day goes by that i don't think of you, Ang, Ali & of course Miss Bella. Last week my family & I were vacationiing on Hilton Head Island, SC & EVERYWHERE we went we seen butterflies :) I asked about them & was told they are attracted to a certain bush that is common in SC. Then while strolling through the shops every single store had some sort of butterfly on display (magnets, windchimes, etc). From that moment on my heart felt so at peace & I knew Bella was exactly where she belonged letting us know she is OK & of course EB free :)

  40. I am ready for tomorrow to come, so I can say I love you..that is all that needs to be said or just a big hug..that will say it all.

    See you in WS

  41. Hello, from Asheville. This post showed up on a Google alert that I get every day on the word "Asheville". I went back and read some of your previous entries. I too have driven the road from Louisville to Asheville. And it is absolutely gorgeous here right now. For the last few years, I have been dealing with my mother's dementia and diminishment. I started a Caringbridge site for her when I moved her here to Asheville several months ago. I just want to say how much I appreciate your beautiful and thoughtful writing about your journey with your daughter.

  42. You have such a way with words. What a gift.
    Thinking of you and your family often, safe travels!

  43. Welcome to our fait state. I hope you enjoy your visit. I live in between Asheville and Winston, so you will be passing through the big city of Hickory while you are on I-40. I have to work tonight, tomorrow night, and Saturday. (I work when my hubby can be home and vice-versa.) So I am sad to say that we could not make it to the gathering tomorrow. Thank you for sharing your sweet Bella with us blog readers. May God give you His peace and grace throughout your journey.

  44. Hi Ringgold family
    My family is in Knoxville Tenn and have driven through the Great Smokeys many times as a child and adult and have fond memories of it. I'm glad you are enjoying your drive be safe and can't wait til your back in Cali for that hug. vicki

  45. Bella touched many lives but I think it must be genetic. :) Your words are always so gentle, comforting and peaceful. That is such a gift. Thank you for being open, inviting, generous and caring. You too touch many lives.

  46. Hello! Hope you are all having a wonderful day. I saw these poems and thought of you guys and wanted to share it...

    "Daddy please don't look so sad, momma please don't cry.
    Cause I'm in the arms of Jesus, and he sings me lullabies.
    Please try not to question God, don't think he is unkind.
    Don't think he sent me to you and then changed his mind.
    You see I'm a special child, I am needed up above.
    I'm the special gift you gave Him, a product of your love.
    I'll always be there with you, so watch the sky at night.
    Look for the brightest star and know that's my halo's brilliant light.
    You'll see me in the morning frost that mists your window pane.
    That's me in the summer showers, I'll be dancing in the rain.
    When you feel a gentle breeze from a gentle wind that blows.
    Know that it's me planting a kiss upon your nose.
    When you see a child playing and your heart feels a tug,
    Don't be sad mommy, that's just me giving your heart a hug.
    So daddy don't looks so sad and momma please don't cry.
    I'm in the arms of Jesus and he sings me lullabies!


    To Mother and Father

    There's a corner up in heaven
    Where the little babies play,
    And our Blessed Mother watches
    All throughout the live long day.
    They're a happy lot, these babies
    Sure the reason's very plain
    For they've missed the world's contagion,
    Came unscathed, without it's pain.
    "Tis an angel band they call them
    And you both should happy be
    You're the parents of an angel
    'Cause your baby's there you see.
    Yes, and smiling down upon you
    With an innocent sublime:
    Waiting: watching for the parents
    He will meet again in time.
    You should never be rebellious
    Rather thank a loving God
    For your little guardian angel
    As along life's way you plod,
    With a faith that never falters
    Clasping each the other's hand
    Pledge yourselves to meet your baby
    In that better happy land.
    ~Author Unknow

    All my love,
    Sarah in Colorado

  47. Glad the trip is going well so far! I wished that I lived close to one of the gathering places so that I could join in. (you should have stopped here in Chicago!)

    My little guy at work is doing a little better. He's made some improvements on his ventilation settings, and may even switch back to the regular ventilator soon (he's been on an oscillator the past week or so).

    I'm glad that you have gotten through some of the mountain driving safely! I have some vivid memories of family driving vacations as a kid from Chicago to Florida. Driving down the mountains through heavy, heavy fog / clouds. Cool as a kid, but not so cool for my Dad who was driving!

    Chicago, IL

  48. I read about you on Jonah's site. I am so sorry for your loss. I looked back at your pictures of Bela and she is a beautiful baby. I am sorry that she lived a life of pain and I am sorry that she didn't get a fair chance at life. I am heartbroken over her whole little short life. God Bless your family. You are wonderful people and you are in my prayers.

    With Love

    Toni Clark
    Birmingham, AL

  49. Still following along on your journey home to CA! Loving all of the beautiful pictures. Im so glad you guys are taking your time to enjoy all of the places!.....Still praying for you guys as always!

    Sacramento, CA

  50. 'That is the price of love, and I for one am HAPPY to pay the fee every time, for the beauty of love always triumphs over the pain of loss.'

    You are so right, I've never thought of it that way before! I never think to turn things on their head and see them in this way. I learn so much from you, Tim! It reminds me of the quote (which I had forgotten about), 'It's better to have loved and lost than never to have loved at all.'

    Loved the photos of your journey through the mountains and of the Sweet Biscuit Inn. Sounds like a great place!

    You both are so amazing to be so selfless in your grief. I have actually experienced somebody before who was grieving the loss of their child, and they were angry because someone spoke to them about how they had lost their uncle, and they felt like it was no comparison to be made to their child. As you say, everyones grief is different. But it all comes down to the same thing, losing someone you love... And this person was basically told they said the wrong thing. It upset me because that person was only trying to connect with the lady who had lost her child, it's hard to know what to say, and her intent was heartfelt.

    Anyway, sorry for rambling. Hope you enjoy the gathering tomorrow (or is it today now?)


  51. Tim & Family:

    I read about you on Sam's Caringbridge. I'm so sorry for your loss.

    While I was reading Sam's caringbridge following her BMT journey for almost a year now. I think there was a link to your blog one time and I visited it back then. I remember thinking about the name Anabella. It's such a beautiful name. I read your story and it made me feel admiration for your family. Then I didn't visit the blog again until I read in Sam's caringbridge that Bella had passed away. I remember that just by them mention of the name Anabella, I already knew that it was your Bella. I'm so sorry for your loss.

    For the past weeks I've been reading every single of your post. I feel as if I knew you guys, I feel you so close. Even though I don't know anybody with EB, ever since my hich school anatomy teacher made us research EB, I haven't been able to let it go. I think about Bella, Sam, Rafi and many more children like them every time I say: "I want to be a doctor."

    Thank you very much for sharing your story with us.

  52. Good Afternoon to you all!

    I just LOVE the breathtaking pictures! I have never been able to take pics that look that awesome, so thank you for sharing!! Also, I had to chuckle at the y'all you let drop...I am a Native New Yorker, transplanted to So Cal for 30 years, and now a happy resident of rural West I also have the So Cal version of Y'all! My west coast family thinks its ridiculous, hehe! I even caught myself saying "bless his heart" the other day. LOL!

    I wanted to tell you that I can relate to the "limbo" that you find yourself in sometimes. After my dad passed away unexpectedly 5 years ago, I felt the same way. I did not grow up knowing him...we only got to know each other after I relocated to WV with my husband and kids. I had three years of getting to know the man my father was...and I loved him as though it was 30. It was so exciting planning trips to get together, as he lived a couple of hours away. When he passed, I just didn't know what to do with myself for a while. All my plans seemed to disintegrate. I lost my motivation to seek out anything new. I feel a little like that now, after losing Bella...she was a very big motivator the last few months. She made me want to be a better person, every day...and I really miss that feeling. Your words are helping, though
    ...every day...thank you for that.

    Although I'm not able to get to any of the gatherings, I will be at them all in spirit, and reaching out with a big group hug, not only to you and Angi and Ali, but to ALL of my blog family, as we mourn and remember our beautiful baby girl Bella. Blessings, as always, and safe travels.

  53. I already wrote a bunch of stuff for this comment and my daughter Malorie is sitting next to me and she hit ONE LITTLE BUTTON on my computer and it VANISHED!!! Ugh...I want to be mad at her but she's so cute and just wants to be next to me so I'm gonna hold my tongue and try and remember what I was saying...

    Thank you Tim for another beautifully worded post. You have me crying again. :0) Thank you for being so candid once again with your feelings. It really is very hard losing Bella and having such a love for her and your family from so far away. Thank you so much for your strength.

    Ugh...there was so much more I wanted to say but I can't remember it well. Maybe I'll remember it later and write again. LOL

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(9mos)
    The McLaughlin Family
    Moreno Valley, CA

  54. Tim, I have been one of those lurking in the woods followers. I am a nurse in a NICU and we recently had and lost an infant with EB. One of our doctors directed us to your site. I had never heard of the disease before and I have been a NICU nurse for 21 years. THe first post I read you were going head to head with the PICU staff about Bella's treatment. I was in awe of your knowledge and cheered you on as you tried to battle for your daughter. You are AMAZING!!! Your family is beautiful!! I am so sorry and sad for you. Bella was and still is beautiful. Your blogs have me addicted. I love Bella and also follow and love Tripp. THese babies choose the right families to be born into. Please have a safe trip home. At least this is a beautiful time to be traveling across the country. Just wanted to finally write something. Take care.

  55. Do you have a link at all for Samanthas caring bridge site? I can't find it... : (

    Becky (again...)

  56. My heart is grieving with yours over the loss of Bella. Our God is mighty to save and I'm thankful we serve a mighty God. Wishing our family could join yours in NC. Prayers for a blessed time of honoring Bella!

  57. Thanks for the updates on your journey. I am still reading and still praying. Mary Chinn, Valparaiso

  58. Ringgold Family,
    Just a quick note to let you know that I am still here. I've been quiet lately as I take time to finish up a little business and take care of some of those not so fun details so that I can spend more time doing the stuff I really care about.

    Piper in Phoenix

  59. This is my first time commenting but I want to share how deeply inspirational Bella's sweet life was for me. She had so much strength that mirrors that of her families!

    I am sorry for your lose and can't wait to see Bella someday pain free from EB! Heaveno!

    **Please tell Ali, that she didn't miss too much snow here in the Twin Cities (it was only flurries that melted once they hit the ground)

  60. I don't know what to say, but I'm gonna say it haha. I've been reading your blog here and there ever since I saw on Courtney's Blog that your precious Bella recieved her wings.

    I'm sorry I just can't say anymore right now, and I have a lot to say, but I'm gonna cry and I'm just too tired to cry. I do want to say I know you miss that precious baby and I think of you and your family everyday.

    Love really does conquer all things!