Saturday, November 6, 2010

November 5: The Phoenix EB Gathering


Before I begin, I need to share with you that baby Elle passed away last night just two doors down from where Bella died. We are so sad for her family but happy for her, as she is now floating up there with Bella and Sarah and all the other EB babies and kids in Heaven. Please take a minute to visit the Pop's blog and send them your condolences. Thank you for doing that.

Well, we had our final Gathering on the road today in beautiful Paradise Valley, AZ. The Franciscan Renewal Center is truly Holy Ground. It has been my spiritual home since 1997 when we had my dad's funeral there. Since then, my mom got remarried there, I went to counseling there, we had my step-dad's mom's memorial service there, and now Bella's gathering as well. In addition to all this, I used to sing in the choir there in 2003, and since 2007, I co-lead a twice a year retreat on grief and loss.

It was incredibly funny seeing the posters for our upcoming retreat in December on the grounds as I was setting up to do some grieving of my own! I will not be leading the December retreat as I am in the middle of my own grief right now, so it wouldn't be appropriate for me to try and facilitate at this time. Imagine how much more useful I will be on that retreat now having gone through this. I have lost people in my life that were in the generation above me (dad), my generation (my 5 best friends all at once), and the generation below me (Bella).

Anyhow, today was just wonderful. We saw friends and family, and met a few of you blog readers as well! Once again it was great to now place faces with names. There was another EB family from Phoenix that came out, the Hendricksons, and they have a 4.5 year old daughter, and an 18 month daughter with EB simplex. She was born two weeks before Bella, so our families have traveled a very similar timeline of growth. It has been so helpful meeting these other EB kids and their families along the way home. They bring us such joy, as Bella did. EB kids are unusually strong, and they are just GREAT to be around. I miss being around Bella and witnessing her strength. She made me so much stronger just be virtue of trying to keep up with her strength!

There was a hilarious moment when Katie, the big sister to the child with EB said to Ali, "Bella died because she had too many boo boo's," to which Ali pointed her finger at Katie, blinked an eye, and replied, "R-R-R-Right." It was so matter-of-fact and concrete, just like kids at that age. Rob, Katie's dad, was mortified at Katie's frankness, but Ang assured him that it was just fine. That's how 4.5 year olds talk about life and death. There is no story yet, no drama, just the facts. There's still a lot of heaven left in them, so I don't know if it even is the same experience for them at all. They have lived a shorter amount of time, therefore they are not as susceptible to the myth of permanence.

With each event, our hearts heal a little. With each event, I feel like I am becoming more and more... me. Tonight, several of our old friends took the opportunity to speak in front of everyone about how this whole journey has impacted them. In addition to speaking of this, it was really neat to hear what a difference they now witness in us. Ang and I lived in Phoenix from 2000 to 2004, so it has been a while since we had seen quite a few of of our friends. To hear what a difference in transformation and growth they have seen was very inspiring. You cannot observe your Self in the same way others can, since you can never detach yourself from yourself. So, no matter how much reflection one might do, there is an element of blindness in self reflection. There is a view that others have of you that is distinct from your own, and to hear what that view looks like from people who know us now, but also knew us then... well, it really made me feel like we've come a long way, baby!

So, tomorrow we complete the last leg of this journey home. I am not looking forward to it at all. This journey has been a wonderful buffer from the cold hard reality of a home without one of your children in it. The car seat was a tough one to deal with in MN, but think of the things that await... the crib, the high chair, the wound care supplies under the vanity, the bottles, the medicine box, the clothes, etc. So, as much as we are happy to get Ali back to a normal schedule and life, well, right now, home feels like it's going to hurt more than heal.

Now, I know there will be instant thoughts and reactions to the above paragraph that will run the gamut, but while we've been on this journey across America, I haven't been able to notice Bella's absence since we never did a road trip with Bella before. When we go home, all my activities of daily living will be done inside of that thinking that goes, "The last time I did X, Bella was right there." I think Tom Hanks' character in Sleepless in Seattle articulated this very well when he said something to the effect of, "Every time I turn the corner, I see her, because we did something together at that location." (I know I butchered that, but I think I got the spirit of it) Bella's absence will be more noticeable, that's all I'm trying to say.

Lastly, I don't want to stop preaching and bringing people together. I know that this blog allows me the opportunity to preach my 2 cents to countless people, but there is an element of shouting into the darkness with the blog that face to face interaction doesn't have. I don't know how this desire will express itself going forward after the CA memorial, but it needs to.

Alright. Need sleep. Some day, I'll read all this and laugh since I usually write as the last activity of the day. I know that I have no idea what I wrote 2 nights ago. Sometimes, I can remember what I wrote the night before, but often times, if I go read an older post, it's like I'm reading it for the first time!

Here is a slide show of yesterday's journey. The footprints are one of my favorites, as is Ali doing mommy makeup. The egg happens to be from a free range farm, and the farm's initials are EB, and they are currently doing something for the Susan G. Komen Foundation, hence the pink ribbon. I just couldn't believe it! You can imagine my surprise when I opened the box and saw A DOZEN eggs like that!

God night.


  1. In my heart, I've been dreading the moment you arrive home. Not because I don't want you home ;) but because of all the reasons you mentioned. I wanted to.figure out a way to get into your house, leave a meal in the fridge, and make all of the "reminders" go away. But, realistically, I didn't think that could happen (your neighbors may turn me in). I don't know what to tell you...I imagine walking in the door as 3, will be so hard...but, together, you will get through it, will be stronger because of it.
    (Ali will probably love the reunuion with all her toys). I think of all the happy memories made in your home Bella...she still there with you.
    Lots of love from home. Enjoy the familiarity of your last leg home. What an amazing race you've had....

  2. I was so sad to read about baby Elle today. These beautiful girls, I wish we could have kept them here amongst us a little bit longer. Beautiful Bella and beautiful Elle.

    I keep thinking about you and carefully reading your blog every day. I have been thinking lots about the post you wrote some time ago where you talked about how people can sometimes tell YOU what YOU are feeling having lost Bella. I hope I haven't in any of my comments. If I have I think it is because it is hard to grasp the complexity of your feelings when I have not suffered such a loss yourself. When I read what you wrote it made perfect sense but before that I just didn't reflect about all the different aspects and how they all together impact on how you feel about Bella's death.

    I can imagine coming home will be very hard. Your trip has in a way been a break from the reality that Bella is gone since you have never done that trip with her. While coming home means moving on with life where Bella used to be a major part.

    You are in my thoughts every day and again, I hope I haven't said something in any of my posts to upset you. Your grief is yours, no one knows it better than you and there are of course no right or wrong in grieving.

    ALexandra in Australia

  3. Good morning, sweet family...

    Oh, the heartache of being in a home without the person who helped to make the home what it is. I well understand that pain. When I go into my dad's house, I still walk over to the recliner - where he spent most of his last years - and just run my hands over it, as if he were still there and as if I could still touch him. At those times that void in my heart and life becomes palpable. Please know I will be covering you all in prayer as you face your own reunion.

    The pictures from Arizona are very different from from the landscape here in the East.

    Wishing you well on this last leg of your journey (that word - journey - certainly is rife with meaning, isn't it?). Be safe as you travel. I'll channel my inner Willie Nelson and sing as I close - "On the road again..."

    With prayers and affection,

    A friend in NC

  4. Good Morning!

    I will be thinking of you often today as you make your way back to California. As hard as it may be I would imagine it will be very healing as well. And besides that how awesome to sleep in your own bed tonight after, what, 5 months?

    Always thinking of you and admire your strength as a family!

    St. Peter, MN

  5. I think you again wrote the pure unedited truth " home feels like it's going to hurt more than heal". I am praying for comfort and grace for all of you because it will be so hard to be home without the physical Bella. She will be all around you in spirit and memories and I hope you, Angelique, and Ali find comfort in that.

    So glad the AZ gathering was so nice. Ang now you have gotten to meet 4 of us (Darcie,Jenn, Michele & me)- looks like sweet Bella & your family have really touched so many lives.

    Safe travels.
    Tina in NJ

  6. Once again, I am in awe at how open your are in sharing your heart with us, the countless people worldwide, that read and follow your blog. You are all an amazing family. Continued prayers as you finish the last, hardest leg of this journey, and head home. May you continue to lean on the Everlasting Arms of God and find peace.

    Michelle in KCMO

  7. Take notice in one of the pictures...there is one in particular where you are at the microphone and there are no lights
    behind you, yet there is a light, "orb", whatever you want to call it, that appears at the end of your guitar. It's brighter than most "orbs" I have ever seen in a picture before. Bella is definitely still with you and she still shines bright!

    Thank you for allowing us to meet you face to face and for sharing your journey with us. I am glad I was able to meet you both and make the connection with you and your family more real.

    I am saddened by the thoughts of all the memories that home will bring and how difficult the greif process will be. You are in my thoughts and prayers. I wish you peace.

    Michele AZ

  8. I am so sad to hear about baby Elle, "dolly". I didn't get as close to baby Elle as I have to Bella and Daylon but, I have read her blog a few times and it just breaks my heart to hear she has passed on...thank you for telling us.

    I am glad to hear you guys had a good time at the AZ gathering. That must've been really nice to have a lot of your old friends there as support. That would have been fun to hear all of their great stories. The pictures are great. Of course I LOVE, LOVE, LOVE the picture of Bella. That has become one of my favorite parts of your blog, getting to see a picture of Bella pre BMT. It makes me happy to see her smiling face.

    I hope your drive home today is peaceful and at least a nice scenic drive. I will say a little prayer for you today that once you get home that you will have the strength to at least look around and observe your home again. I will pray for peace and comfort. I know the coming days, weeks, months are going to be difficult but don't stop telling us about it and we won't stop supporting you!! ;0)

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(10 mos.)
    The McLaughlin Family
    Moreno Valley, CA

  9. I've thought a lot about you guys coming home and I'm sending you strength to get through the door. I can only imagine how difficult it will be. If you want to delay it, you are welcome to keep driving to CM and have dinner here, or it could be Wahoo's take out...I know my cooking can be scary.

  10. Hi Tim,

    I just wanted to share this pendant that I found while looking on this site for wedding things. I thought it was a perfect fit for you, and your journey. Have a safe trip home.,269&GEN1=Jewelry&T1=J63325&dispRow=0&srccode=

  11. I'm so sorry reading that baby Elle passed away.

    I hope that you will find a way to deal with all the feelings when you're at home.

    Love seeing the photos of litle Bella.

    Carla, Luxembourg

  12. Thanks so much for organizing the gathering yesterday. As painfully shy as I am, and yes, and as uncomfortable as it made me, I am really glad I got to meet all of you face to face, give you hugs, hear your voices. I'm only sorry I forgot to bring money for a signed copy of the book! Oh, well, I will order online. :)

    After you greeted me, later on the evening, I mentally kicked myself for not saying the appropriate, "I'm sorry for your loss." Because of course I am. But the more I thought about it, I realized it wasn't in the forefront in my mind when I first met you for a reason. You have not focused on the sadness and the negativity about losing Bella in this blog; yes, you've discussed it, but not focused on it. So I haven't focused on it. Instead I said I was glad to meet you, because gladness most appropriately expressed how I was feeling. Glad to finally see you in person, glad that you have shared Bella's journey with us as well as your own.

    I hope you have a safe journey home and I hope the process of returning to your house and daily life will be less painful and more healing than you anticipate! I understand how you must be dreading it though. I will still be here in AZ reading and supporting as best I can through the internet!

    Cara in Tucson

  13. I started writing something yesterday but I wanted to wait until today to actually post it. I was filled with hurt and anger when I wrote last night and I didnt want my comment to be view in a way I dont intend it to. Before I go on I must make sure you know I am not talking about you. The one I became so mad at last night was God. Mad he took Bella. Mad he took Elle too. Hurt that he didnt make them better and that he took my hope away. I didnt want to "put this on your doorstep" in the way I wrote it last night but it still makes me wonder. How is your faith so strong? How do you still believe "God is good"? I know it isnt just you... I have seen it many times on blogs where a child is sick or has gone too soon. In my search for a way to help...I noticed this common thread. It amazes me. My faith is relatively new and wish it were at the same level as yours. You dont have to answer my head and heart are just trying to understand.

    I will be thinking of you all as you return home.

    Sending you all my love and sweet kisses for Ali.

    Denise WI

  14. Dear Ringgold Family,
    Be gentle with yourselves, know that you are so very strong and that healing is very individual. Thank you for sharing all that you have with so many. It was a lovely celebration of life, and very nice to see you and Angelique and to meet Ali. Our intense prayers continue and a little extra for healing rather than hurt as you arrive home.
    Love, Michael, Robin, Mason and Maxwell Setto

  15. I will never, ever get tired of seeing sweet Bella's precious smile. I am sad for Elle's family but it warms my heart to think of Elle and Bella enjoying being pain-free.

  16. Good afternoon, Ringgolds! I'm SO sorry to hear about Elle and will certainly pray for her family. I'm also praying for you all as you edge closer to home, and you're faced with the "empty things" that Bella once filled. May God give you special strength and peace as you continue to grieve.

    We love you very much - from TX!
    Laura (and Team A)

  17. Thank you for telling us about Elle. I usually go over and check on everyone everyday, but I hadn't got that far yet.
    I left her family a note. These babies have changed my life, made me closer to God. I tell people about EB every chance I get. It's sad to see so many families suffer thru these trials, but I know that their lives will one day make a cure possible. I guess that goes for all things in life. We all learn from our mistakes, just as in the medical field, researchers learn from their trials.
    I'm thinking and praying for you all as you get closer to home. I'm sure it will be different. Take time to remember. I'm like you, you have to let yourself feel the pain in order to heal. Thoughts and prayers, Carla Spradlin, Portsmouth, Ohio

  18. Tim,

    By now, you are probably either very close to home or already through that door.

    I agree, having to see all of the things that belong to Bella in your home will be so very tough. But I think any alternative - such as having somebody clear things away before you got back - would be even more distressing but for different reasons. Like she'd never been there at all....

    People often say that the things they dread turn out not to be as awful when they actually occur. I truly hope that this is the case for you today though I have no doubt that there will be a heavy weight of sadness. Perhaps there will be some moments of bittersweet pleasure - in memories that are brought to mind. Perhaps even some smiles and laughs at thoughts of quirky things your girl did when she was at home with you in CA.

    Thinking of you all (and of the Pops - I mentioned in a message to them that I love the way Bella and Elle's names seem to intertwine).

    Hoping this day passes peacefully. Congratulations too on successfully completing your amazing journey. It was quite a feat - and you did a brilliant job. You chose your Halloween costumes well, superman, wonderwoman and supergirl...


  19. Hello Tim, Ang, and Ali!

    So I have to share with you that your dear friend Lynne, is also a childhood friend of mine. We've recently reconnected through facebook which is how I've come to know you all. I am so grateful to her and to you for being amazingly open in sharing your lives. As I shared with her, I now look at, interact with, and hold my babies with a whole new perspective because of Bella. I have always been grateful for my two heathly boys as they have come to me in my 40's (wasn't sure I'd get to have them at all), but because of Bella's Blog, that gratitude has certainly deepened. I just wanted you to know that there is yet another person in this world that now knows of EB and is spreading the word, and yet another life has been touched by your beautiful girl through you.

    I am praying that you will find more peace and healing than pain as you return to your home in CA. I think back to one of your earlier posts where you talked about choice, and am wondering if a person can choose peace and healing over pain. I don't know. It seems like pain has to be a part of the process, as much as I wish and pray for you to be spared.

    Man, I miss that little girl!

    Be well!

    Elk Grove, CA
    (via, Montana)

  20. I should never write when there are so many distractions in the house. That time is limited. I had more to say about your making the last part of this journey and facing your home with Bellas items there but where her absence will be more noticeable. I cant imagine what that would even begin to feel like and wont even try. I just want you to know that I am thinking of you all as you face those emotions. I wish that going home didnt have to be so bittersweet.

    I will pray for your peace and strength.

    Denise WI

  21. Tim,

    I'm back again...

    Question: Do you still have the delightful little canine who sometimes appears on early photos of you and Ang, Ali and Bella?

    If you do (I have a vague recollection of reading that the pooch was being cosseted by a family member in CA while you were in MN, or did I make that up...?), I bet she will add such doggy joy to your return to CA.

    As several other people have stated, none of us can have any true idea of the way you feel tonight. But I think we all wish we could somehow shoulder a bit of that burden for you, tonight and in the days to come.

    Baby steps, I suppose...


  22. Tim,

    First, I am so sad to hear about Elle. I have been checking on her daily, but saw the news here before I went to her blog. Like Bella, I thought she'd just keep going.... It is very hard to wrap my human mind around all of this.

    Secondly, I have been following your journey home and thinking of you all often, but I haven't commented in a while. I know you said it was OK to say, "I don't know what to say," but I think I missed the part about actually saying it! So, I didn't know what to say and I guess I still don't.

    I do know one thing, though. In my mind, it seems like you have been uniquely prepared to be I only know you through your blog, and I haven't read all of it, but most humans never get the "training" you have received. From your comments, you have experienced immense grief in the past, continued in that, and helped others BECAUSE of it. And then, you were given Bella, and given this incredible voice to share her with the world. You showed us what it feels like to give all of yourself to someone, and in the greatest pain, to lose that person too.

    My good friend talks about "Godincidence" instead of coincidence. From my vantage point, I imagine your journey to the retreat center in Arizona was exactly that. A safe place to grieve just a little, after being there before in different times and places in your life. Were those past visits part of God's plan, so you'd have a way home, now?

    And I venture to guess that your unique training has a greater purpose, not just to see you through this. There must be thousands of blogs out there, with sick sick kids enduring really tough battles, but we all read YOURS. I still wish every day that Bella were still here. And every day I still come back.

    I hope I haven't said any of the wrong things, because I am not as well-versed in this grief thing as you are. I just wanted to tell you all that I still pray for you, still care for you, still wish I could make it all better. So if my words are wrong, please just take the good intentions and run with it!

    My prayers are with you all as you make it home.

    Karen Steiner
    Denver, CO

  23. To the Ringgolds --

    We soooooo enjoyed finally meeting you last night. Once again, you brought us into your world and thanked us for being there, even though it was us who should have been thanking you.

    Katie already wants to make plans so that she can see Ali again -- the pictures of the two of them playing and posing were priceless.

    My wife Kristin and I have been discussing last night and your family since we left. We continue to be amazed at the strength, grace and character of all of you. As devastating as your loss is, all of us EB families are proud to have you carrying the flag for us. As we discussed last night, there is a cure coming for this awful disease, and Bella and the rest of your family are going to be part of the reason the cure is found.

    Thank you again for hosting the Gathering. I'm glad to hear that it was an aid to you. We will remember it always.

    Rob Hendrickson (and Kristin, Katie - 4 1/2, and Lizzy, 18 months, EBS)

  24. It was soooooo great hugging you both! You are truly and inspiration and I am so honored to have had a little piece of Bella's life in mine. You might not have noticed, I gave Bella a kiss as I departed the courtyard last night, right on top of the urn. When I picked out the butterfly that Ali turned into a necklace, I felt like someone was assisting me in the selection....the original intent was to get Ang something and then I was guided to finding a momentum for Ali instead. Hmmmm.... btw, did you see all the orbs in the photo slideshow? Wow! especially the one with you/Tim sitting on the half wall - that one (orb) is huge right next to you!!!! So so cool. I love you.