Sunday, October 24, 2010

October 24: Awake and on the road


Our final view outside the RMH front door...


I always thought this was a bush at RMH till it turned this brilliant color!

Heaveno!

Hahaha, I just read last night's post myself. Wow, you'd think that I would know what I was talking about or at least what I was trying to say. Nope. Pretty interesting. I should get a dream analyst to read those lines and tell me the meaning of my life.

Anyhow, I'm all here tonight and posting early.

We are on the road.

This morning, my amazing sister Tracy returned home to Madrid, Spain to her husband, two boys, and two dogs. What a God-send she was. Like Nanny and Grandma, Tracy put in HOURS of cleaning, laundry, and packing for us. Plus, it was so much fun watching her play with Ali.

Also this morning, Logan volunteered to pick up Ali and give her a play date with Owen and Ellery while we finished packing. This was the key to us getting out of RMH today. We were really close to finishing by this morning, so we figured out that this would be the best chance to finally close up shop. Bella's nurse Renee called also to see if she and her fiance, Jeremy, could come by and help pack or clean. Renee said cleaning is one of her favorite things to do. Jeremy is one lucky man. So with Renee and Jeremy cleaning, Ang and I got everything packed up and I got it all loaded into the car.


Ali with daddy's earphones for her DVD player... YES!

It was weird leaving RMH today. It became our home under the most intense emotional pressure of our lives, so there are powerful bonds connected to it. I'm going to miss it. When you walk by other families, you smile and make eye contact and know that each other is "in the deep end" with one of your kids. The camaraderie and respect and support is wonderful. It'll be weird walking around my condo complex; walking by people who have no idea my daughter died in Minnesota. People wrapped up in their own significant worlds, worrying about who knows what. All I know is that before this, I spent A LOT of time worrying about meaningless things.

(Uh oh. I am taking typing breaks and holding my head up with my hand while my eyes find themselves closing. I better keep moving here!)

So, we hit the road to our friends Lonni and Jay's house in Woodbury. They are the family that lost their little girl Sarah in the same EB clinical BMT trial. They are the ones who founded PUCK, and if you haven't donated yet to PUCK in Bella's memory, would you please do that now?

I am going to stop typing now so you can click on the button and go make a donation - not only in Bella and Sarah's memory, but because it is National EB Awareness Week beginning today.

Go ahead.

Do

It

NOW.


Please?




Why are you scrolling? CLICK HERE




Okay, enough badgering. Seriously, though, if this blog has provided you with ANY value at all in your own life, if Bella's LIFE and DEATH have at all inspired you once while coming here to read, if you have had the thought, "Oh, I wish there was something I could DO for them,"

Well, now's your chance. Please, return the favor. Thank you.

CLICK HERE to make a donation. I'll wait right here while you do. :)

Now back to our program (What is this, a telethon?)...

So, we came here today because we wanted to spend one more moment in time with Lonni and Jay, now that we are in this most intimate club of 3... those parents who have lost their EB children to this BMT study. I don't know and have never met (though I have always wanted to) Theresa Liao, the pioneering, powerful crusader of a mom that got this whole thing rolling here at the U who lost one of her boys, so, that just leaves Lonni and Jay.


Ali, Janie and Aaron putting on some plays for all of us tonight...

That is not to say that we can't talk to plenty of others who have lost a loved one. Pain is pain, and suffering is suffering. One thing I have noticed and been guilty of myself is that people seek others who have been through the same exact diagnosis to relate to. This is very valuable for information and best practices sharing, but at the level of human BEING, we all relate at the same level. AND... (I know you aren't supposed to begin a sentence with AND but who cares) to walk and talk down the road together while in grief, it somehow lessons the burden. In the New Testament of the Bible, there is a story about 2 men walking from Jerusalem to the little town of Emmaus after Jesus was crucified. Jesus appeared along side them, but hid himself from their view so they didn't recognize him while the three walked and talked. What is important to me about this parable is that you don't hear about a single guy walking to Emmaus, and how his thoughts joined him for a nice internal dialogue. TWO guys start out together, and are joined by a third.

There is power in groups. The two men's pain and suffering was alleviated by their mutual company. And so it is in grief. Know someone grieving? Go BE with them. You don't even have to DO anything. Who CARES what you are DOING... this is back to my point about human doings versus human beings. If I'm doing something with you, but you are BEING cold, distant, bored, etc, I feel worse than if I was just by myself! If I'm doing something with you, and you are BEING loving, connected, of service, generous, nurturing, understanding, patient, etc. do you think I feel better or worse?

Are you starting to see my point in all this? We are called human BEINGS for a reason. BEING is where it's at, folks. So, stop trying to DO so much and start to BE so much. Chew on THAT for while.

For example, Jay invited me to the football game yesterday. The U got creamed by Penn State, and I know that makes all the Gopher fans out there sad. However, while I sat there feeling exhausted and numb, Jay just shot the breeze with me about whatever and it was better than being alone. Now, tonight, just getting to be together, the two sets of parents and the two sets of kids, it was good for everyone.

(Okay, now I am holding my head with BOTH hands. It's time for bed.)

Goodbye, Minnesota, tomorrow we leave you. When will we return?

In February.

Renee and Jeremy just invited us to her wedding! We needed an excuse to come back in the dead of winter to taste that bitter cold everyone hyped up to us, and, well, now we have one!

P.S. Last thing we did in our room at RMH before leaving?

Prayed hand in hand with Jeremy and Renee.

Now THAT is the way to begin THIS road trip.

God night.


Ali chillin' in her little fort in the closet! It's nice to have closets so big your kid can sleep in them!

And for your viewing pleasure, these pictures were taken last night at Dayna's party, courtesy again of Erin Spector. Sorry, Erin, that I didn't get these up last night!


Look for Ali's right foot... hence the expression...


Our friends Dayna and Brent...


Carrying my princess to safety...


Ellery, Ali, and Owen... the three musketeers!


I think THAT guy should be on a dollar bill! LAME (Laughing At Myself Energetically)

25 comments:

  1. I know you have mixed emotions about leaving and heading (albeit in a round about way) back home. Praying for you guys as you sort through all of this and literally take this healing road. :) Hey, when you get a chance will you direct folks to my blog entry about the get together or copy and paste the post so your readers get the word too. Many who have said they're coming on here haven't contacted me, so I just want to make sure it gets to everyone. Type A, Type A, Type A. Love you guys! :)

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  2. I hope you guys have a WONDERFUL road trip that will lift your spirits. According to your itinerary, it seems as though you guys are in for a real treat. That will be nice to get to see friends and surrounded by love.

    Ali, I love your little fort in the closet. I wish I had a closet that big!

    Praying that you have a safe and fun filled road trip back home to CA.

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

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  3. Prayers to your and your family:
    That your travels are safe, healing, and revitalizing;
    That the love you feel for your entire family, Bella included, helps your family as you create a new life as a family.

    And Thank you for sharing and reminding me what is really important in this life(okay, now I started a sentence with 'and').

    Another Human who needs to "be' more, not 'do' more.

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  4. Safe travels to you tomorrow. Enjoy your trip around the country to home. Minnesota will miss you!

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  5. "It'll be weird walking around my condo complex; walking by people who have no idea my daughter died in Minnesota. People wrapped up in their own significant worlds, worrying about who knows what. All I know is that before this, I spent A LOT of time worrying about meaningless things."

    This reminded me of a local psych professor I once met who lost her toddler to croup. She started Ben's Bells in his memory (https://www.bensbells.org/). She told me that when she was grieving, the smallest acts of kindness meant so much to her, thus the mission of Ben's Bells:
    Our mission is to inspire, educate and motivate each other to realize the impact of intentional kindness and to empower individuals to act according to that awareness, thereby changing our world.

    Just wanted to share that, thought you would appreciate her efforts. Safe travels to you all!

    Best,
    Cara

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  6. Tim, Ang, Ali and Bella,

    I think this road trip will do wonders. It gives you the chance to exhale and breathe again before you finally set yourselves on your road back to California.

    By the time the final stage comes into view on the horizon, you'll have met so many old/new friends (those cyber buddies who will finally stand there in front of you and make you know how much you are all cherished) and you'll have forwarded the cause of EB by virtue of the fact that you blog so edifyingly and you share so generously. This 'reunion', of people who have never met before, makes me glad the internet exists.

    As I said the other day, travel with hope and with joy on your new road home. There are so many people who want to greet you for the first time, and as many people, I am sure, who want to light your way home as your journey ends in California.

    I celebrate your and Bella's circuitous and wonderful journey back to the place of her first memories and of your first memories of her. Ang, Ali, Bella, Tim, be safe and enjoy the road and the horizons,

    Fondly,

    Jane

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  7. Thank you for giving those extra nudges in your blog about donating to PUCK! I am honored to donate in Bella's name.

    Thank you for the laugh with the caption of your first picture towards the bottom of your page. I have enjoyed your strong sense of humor through this journey of yours. I am happy to see that you still have it in the midst of your suffering and grief.

    Last week someone in our church in the religious life committed suicide. Because of that event, our pastor's homily (message) was about that particular topic. I am saying this so that you will please keep the person who committed suicide in your prayers, his family, our pastor, as well as our entire church parish. One things Fr. John mentioned tonight was HOPE. We have Hope because of our faith. My hope is that one day there will be a cure to this disease. I have to continue to have the Faith that it can and will happen.

    So after the homily, while the collection was being taken up, our choir sang, "Praise you in this Storm". All of a sudden I am crying and can't stop. My heart was so heavy. All I could think of was your family as well as many other families that are affected by these horrible diseases. Especially the ones with no cure. So I gained my composure after that song.

    Then on the way back to from communion, they played, "Cry out to Jesus". The thought, " Come on now, what are ya'll trying to do to me" crossed my mind. It reminded me though.. that in all life's struggles, tribulations, trials, sorrows, etc.. all I need to do is continue to cry out to him. He does hear our prayers. You are living proof of that. I have been telling people of you and Ang's strength as well as the strength I have seen from other EB parents via their blogs. I know that strength, as you have said in previous blogs, is contributed from the prayers that have come your way.

    Goodnight!
    Love in Christ,
    Sharee Wells
    Ponchatoula

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  8. I have only posted a couple of times, but just saw that you will be stopping in Phoenix. I am assuming/hoping that the EB getogethers are open and would love to come. Would you please post info about it as the time gets closer?
    I am the father of an EB daughter who was due on May 27, 2009 (but was born 2 weeks early). We have talked quite a bit about Bella around here and how she, and your whole family, have inspired us to do more. Thanks for everything and be safe.

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  9. it's weird, the most random things make me sad about Bella.. I saw the image of Ally in the backseat of your car and thought, "no wonder he doesn't want to leave.. they came with two children and now they are leaving with only one." I wouldn't want to go either. Or when reading Rafi's Dad's blog, he mentioned Bella as a casualty in the BMT numbers, that hit me hard. Why that and not you singing to her as she dying? Heavens only knows, but that last image makes me smile. I mean, really, you sang to her on her way into and out of this world. That's magical. And your road trip will be, too. Godspeed.
    love,
    Emily
    Ft Lauderdale

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  10. Happy, safe travels Ali, Angelique, and Tim! I am going to miss you so much as will Stefan, but Chloe will really miss Ali, I have something to share with you when we next talk. We have been honored to walk beside you through part of yours and Bella's journey with EB and BMT and we will always be there for you if you need us or want to see us.
    Love, Becky

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  11. Good morning, sweet family. Praying God's mercy on you for safe travels. Looking forward to finally getting to meet you on Friday. Be blessed, Ringgolds!

    With affection,

    Susan
    A friend in NC

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  12. Two days ago I posted asking what I can do for you? My heart has been so heavy and I've been so sad. I really, really wanted to be able to DO something for your family.

    Well, I hear your answer loud and clear.
    * if you have had the thought, "Oh, I wish there was something I could DO for them,"*
    Okay, it's done. I did it once, so now it's done twice. I'll do it a third, fourth and fifth.

    But, I also heard this message:
    * stop trying to DO so much and start to BE so much* and I'm "chewing" on it.

    Your sister did, your mothers did, Renee did, your MN friends did. I hear what you're saying about "being", but I think sometimes "doing" helps people through the grieving process. As with everything else in life balance comes into play.

    Right now, I'm content to donate and be.

    Safe and happy travels Ringgolds! May be there be many rainbows on your roadtrip.

    Suze

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  13. Safe travels Ringgold's! Praying for all 4 of you!
    Tina

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  14. Tim, Ang, and Ali!! It was fun being with you all yesterday!! And yes, it was even fun cleaning, ha!! ;) It really is one of my favorite things to do. If I wasn't a nurse.....ah, I would clean houses for a living FOR SURE!

    I hope you enjoy this amazing cross country adventure! I have no doubt you will be blessed wherever you go, but more importantly that you will continue to be a blessing to others. God says to Abraham in Genesis "you are blessed to be a blessing". I see that in you all, and it makes my heart smile! You were all chosen to show Gods love in such a unique way, and look at how many lives you have already touched. Wow. Seriously, Amazing.

    Jeremy and I will continue to lift you all up in our prayers.
    We will SEE you again soon ;)

    Renee and Jeremy

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  15. Praying for safe travel for your family and may God Bless your journey with peace and comfort. Thanks for reminding us all to visit PUCK. Today I donated in memory of Bella and my own EB angels.

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  16. Dear Ringgold family,

    Have a safe roadtrip back home. So glad you found a way to get back to Minnesota, especially to such a moment of joy. I can just see Ali as a flower-girl. And Bella will also be sending flowers from heaven.

    Wrapping you all in my prayers.

    Carla, from Portugal

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  17. Have a safe fun and love filled trip! How awesome to be able to do this as a family! You guys will have a blast! Can't wait to see you guys when you return home to CA.
    Praying for safe travels.
    Love,
    The Vanderbooms
    P.S. Sooo glad you decided to buy that guitar. I know it will bring you and many others so much joy!

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  18. Hi Ringgold Family: Please have a safe trip. I am sure you will have so much fun meeting these other EB families. Sure wish I could go to North Carolina. I would love to meet Jonah, Patrice, Matt and especially you guys.
    I will be there in spirit.
    Please take care and enjoy the view of our beautiful country. Love you guys. Love and Peace. Leah's Nana

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  19. Listened to the beautiful roll of the thunder here this morning. Now the sun is attempting to peek around the clouds.
    I thought I'd check in and see how your family is doing today.
    I am sure those moments of loading the car were hard ones.
    I wish you well.

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  20. Sarah Hickman in ColoradoOctober 25, 2010 at 12:30 PM

    Travel safe! I donated to PUCK last week =0) And I will again! My thoughts and prayers are with you and your family!!

    all my love,
    Sarah in Colorado

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  21. Safe travels! I've looked up your route and it appears you will be going through Montgomery, AL. Wish is it was Dothan, I would offer to cook you a meal, or show you around the peanut capital!! Praying for your peace! The further South you come the more butterflies you will see, think of Bella, I know everytime I see one that is what I think of... Sweet Bella..

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  22. Wishing you a safe trip full of love and blessings.
    Take time to recover physically as well.
    I love all the pictures. How nice to come back to MN in February for the wedding.
    Love,
    Mariana,Uk

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  23. Hopefully tonight at work I'll have some time to work on the EB protocol for my NICU. Was too busy last night to get anything done on that. The little guy I'm taking care of right now is having a really rough go of things right now, and I know that he's being watched over by some very special angels.

    Have fun on the road trip and travel safely! And I can't wait to see / read about your travels! (I just had to start a sentence with "and"!!!)

    Jess
    Chicago, IL

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  24. Just wanted to drop in to let you precious Ringgold's know that we are thinking about you! And mostly importantly, praying for safe travels! My Mom is leaving back to North Carolina tomorrow...she is going to try and meet up where ever it is you may land, in that beautiful green state! God be with you and IS with you!
    with all our love,
    nicole b & family

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  25. So...you are coming home with a teenager? Geez. Ali looks like so grown up!

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