Thursday, November 18, 2010

November 18: On the road again!


Greetings from Cleveland, OH! Well, I should say in the air technically for the title since I flew. I tell ya, if I could get across the country remotely as fast in a car, I'd do it every time. Flying (coach) is such an exercise in misery! LOL. I had so much more fun driving cross country, but time is money they say. The irony is that it cost me waaaay more to save that time, so I wonder, did I save anything by flying since I'm not working too much right now?

Anyway, THANK YOU all you lurkers for coming out of the woodwork today! It absolutely put a giant smile on my face when I saw how many of you shared - many for the first time! Really, I have to reiterate just how much of a difference it is to see your comments on the blog. Otherwise, I kind of feel like I'm just talking to myself. Thank you thank you THANK YOU! :)

I am in Cleveland to present at the national conference for the American Music Therapy Association. I also serve as a regional board member, so we have thrice-a-year meetings where we do most of our business. In my position, I run the regional conferences that we host every spring, and I've been really out of the loop due to our time in MN, so I really wanted to get plugged back in. Also, I made a promise to myself when I became a new professional music therapist that I would attend all conferences, regardless of location. As a music therapist, I have very low overhead; conference is my biggest annual expenditure, and that's only a couple of thousand dollars. If I can't pay that off over the rest of the year, I really need to examine my commitment to my career. I just told myself right out of the gate that I always make conference, and I work the circumstances out regardless. Lastly, this is my professional community that has really supported us over the past 18 months, and I really wanted to give some hugs, and I know many of my colleagues want to do the same.

We are an awesomely supportive community in music therapy. Just yesterday, a package arrived for Ali from the executive director of the AMTA. It had gotten lost in snail mail limbo with our mail getting forwarded to MN then back, but it finally arrived. It was halloween maracas, dolls, and other small trinkets. How cool is that? In addition, the president of the AMTA made a donation on behalf of the association to PUCK!

We are blessed to be among so many who live to give.

Do you live to give, or live to get?

The flights were murder today from an emotional standpoint. Hours with nothing "to do." I got my work done early in the first leg, so there was nothing to focus on. I brought several books on mp3, but I usually listen to them while driving, and there was something weird about staring at the back of another seat, just sitting there and listening. It would have been better to have a book, because I found that without my eyes engaged (remember... visual kinesthetic learner over here), I was bored by the text. I really had a lot of pain and sadness throughout both flights. Not enough distractions. Woof. Not gonna lie, it was rough today. Once I got here and could engage with others, it got better. That's the key: stay engaged.

Ang's first day went well. Her boss got her flowers! So nice. Really, the team at Verizon Wireless has just been amazing. Ang noticed how some people acknowledged Bella' death and others didn't. We figured that it's probably all just a level of projection; those who would like others to acknowledge the situation, say something, those who wouldn't, don't. Our favorite is the one, "Well I didn't want to bring it up and remind you." Trust us, we haven't forgotten! We think about Bella all day every day. There is nothing you could say or do that would 'remind us' anymore than we already are. IT's all good. We understand we don't do death and grief very well in the country; perhaps that is one thing Bella and God would like us to teach?

Last, here is the cognitive disturbance story of the day!

The conference is at the Renaissance Hotel in downtown Cleveland, however, I couldn't afford the room rates, so I booked a room on hotwire. I THOUGHT I was staying at the double tree. It is not a short walk to the double tree from the renaissance, and it is not exactly warm here. I get there, and the guy says, "Um, do you have a reservation with us?" That's when I realize that I'm not at the Embassy Sweets that I'm really supposed to be at! I walked to the wrong hotel! Man, I laughed! SO, I walk the three blocks now to the Embassy Suites, and IT ALL HAPPENS AGAIN! "Um, do you have a reservation with us?" I really thought I did! Turns out, it's at the Crown Plaza! This time I am a little more than embarrassed at my C.D. (cognitive disturbance). The guy gets a cab for me cuz he doesn't want me walking any more tonight. The cabbie was a little confused, but overall gracious, as was the clerk here at the Crown Plaza as I gushed the whole story.

My presentation should be interesting tomorrow!

God night.


  1. Still here in NC reading daily &praying for strength & peace to surround you, Ang, & Ali. Love the pictures of Bella.

    Wanda Wilkinson

  2. Hope today goes well for you!!! Love the picture of Bella and the guitar!

  3. Hello Ringgolds!! Yes, "stay engaged"...that will be my mantra today...thanks! And yes, people don't always know what to say so say NO-Thing!! Better to say SOME-Thing and BE engaged, but until you have been through it you may not know that and that is ok too. You are in my prayers daily. Donna in NJ

  4. Nothing much to say today except best wishes for your presentation and Ang's 2nd day of work.

  5. Good luck with your presentation! I'm completely with you in terms of being a "visual kinesthetic learner". I like to listen to podcasts while I crochet/knit. I can't just sit there and listen, it does nothing for me.

  6. Good luck with your presentation today Tim. We Ohioans are pretty easy to get along with!

    Carol in Miamisburg

  7. Tim, best of luck on your presentation. I'm sure it will be great --- I know that Brianna is really looking forward to it. I'm only a couple hundred miles away in Cincinnati but I, too, wish I could be there.

    Also this - I read your blog every morning to start my day. I literally don't miss a day. Thank you for always providing such stimulating things to think about. I've learned a lot --- I appreciate your continued honesty and thank you for the influence your story has had on helping me reevaluate the most important things in my life.

    I'm inspired and you, Ang, Ali, and Bella are responsible for that.
    Thank you.

  8. Welcome to Ohio. It is pretty chilly up there on the Lake. Quite a bit warmer here in the southern part.
    Good luck with your conference. Flying does leave you with lots of time to think. I love to fly, and just look out the window. It makes you realize just how tiny we are compared to the view down below. A little of God's view.
    Me? I like to give. I like the feeling that it leaves me with.
    Sorry, this note probably doesn't make much sense. I'm kind of tired and sleepy so rambling. Have a good day.
    Thoughts and prayers
    Carla Spradlin

  9. Just watched yesterday's slide show. Thank you Sarah, for capturing the photos and Tim, for including them in your post.

    I watched the CA memorial a few days ago and after seeing the still pictures of the event today, something struck me. Anegelique, you oftentimes had a beautiful smile on your face. So many photos until these showed concern, sad and I'm sure, a gammet of emotions, none of which made you smile. You are beautiful. The service is beautiful. Your daughters are beautiful. Ali made me cry in the last photo...with her butterfly. I was just overcome with emotion. Anyway, the Ringgold family is awesome!

    You are such a gifted family. I believe you are Bella's parents so you could share your gifts you have. You, through Bella, have made so many people stop and think. People have put their lives in perspective because of your words.

    I am just in love with your entire family. I am in awe of you and your focus, drive and ability to touch lives. You don't just think it, or talk about it, you DO it.

    Thank you.

    Regarding EB, cures and $$$$; I am wondering if what you think about going to Johnson and Johnson, Gerber, Heinz, Abbott, Baby's R Us, Target, Limited Brands, etc to get involvement. I'm happy to send letters or whatever to get attention. Tim, as you go to these events about $$, let us know what you find out, or if there is something you want help with. Or maybe something that the power of numbers would benefit.

    Angelique, congratulations on your return to work. You are undoubtedly treated so well by Verizon because you are so valuable to them!

    How is Ali doing? Still clipping along?

    I'm off today, but have to go get into my "day off" routine. Tim, hope you have some ideas on how to make your flight home more bearable. If nothing else, maybe you can nap. :-)

    Have a great day!


  10. Thank YOU for putting your thoughts on this blog for all the world to see. What an inspiration you are to so many. I stumbled across your blog about a month ago and have been following your journey ever since. I must say both of your girls are beautiful. It's something about their eyes that are so engaging. I also now have a new appreciation for butterflies :) Thank you again for taking the time to share your deepest thoughts with so many. Sending you warm smiles from Decatur, IL.
    God's Peace ~ Jennifer Dahn

  11. The reason I don't comment at work when someone has had a loss is because if it were me and I was doing pretty well at work (ie: not crying) all it would take is for someone to say something and I'd lose it. So those who don't acknowledge your loss, while no doubt aware you are grieving, also know you are trying to cope and get through the day. And maybe just want to keep things as level as possible. Maybe...? Work can be a helpful distraction. There are myriad reasons most likely - that's just my take for what it's worth. :) Heaveno, sometimes after I post I later think I should just keep my keys quiet. (translates to keep my mouth shut!)

    Anyway, intentions are always good...Love, Terri
    PS - have a safe trip - don't try to get into the wrong hotel room!!

  12. I can not imagine what your family is going through with the loss of your sweet little Bella. I know that she will live forever in your hearts. Thank you for posting a daily blog so we can have a glimpse into your daily lives. I don't know you but have learned a lot from you and your strength as you deal with grief and loss of a loved one.

  13. Your right - many of us have such a funny sense of personal space especially associated with death & grieving. I wanted all day to email Ang just to say I was thinking about her on that 1st day back to the new routine, but figured 1) she will be in email jail and probably will not see it, 2)I really did not know what to say, 3) I was sure everyone at her office would be looking after her.

    I had told Ang back in August that maybe this was going to be the winter of miracles - so the way things have happened was not really what I meant but then again miracles will still happen with Bella guiding us all.

    Tina in NJ

  14. I just read about anton, the orphaned baby from russia with eb. one of the comments yesterday gave the link my heart is breaking for that child and all the pain he will have to endure. My family and I have made a pledge to help this child this christmas and hopefully beyond. This is all because of Bella and you. Thank you for opening our hearts and educating our minds on eb.

    Love and Prayers,
    Kim and family

  15. Welcome to Cleveland!

    I hope your stay is pleasant and that our city treats you well. I look forward to reading your blog everyday. Bella's story, and all the other EB angels are so inspiring. Wishing you peace this holiday season!

    Lots of love from Akron, OH

    Meagan and family

  16. Tim, try to walk on over to the Rock and Roll Hall of Fame and Museum while you're in Cleveland. If you're a Springsteen fan, there is an awesome temporary exhibit of his stuff there right now. My husband and I took a weekend trip up there a few weeks ago, and it got us sucked into a Springsteen kick that we're still on.

    Ang, we're all so glad to have you back here at work. I didn't reach out to you yesterday, because I just wanted to stay out of your way and let you get your email sorted out and all of that kind of stuff. If there's anything I can do to make your return smoother, just let me know.

    Angela Ulrich
    Dublin, Ohio

  17. We hope you had a good trip and that your presentation went well. It gets cold in OH. My husband is from Akron OH. been many years since we have been back there. Glad to hear that Ang had a good day at work and that she works for such a nice Company. That helps alot.
    When we lost our daughter @ 13 days old, it was the hardest thing we have ever faced. It takes a long time of greiving and really appreciateing the other things you have in life. But what a blessing to have a child that is so loved and loved by God that he takes his special children back to be with him and to inspire and help the rest of us cope and do the things that need to be done to be able to be with our loved ones again. You are all such a beautiful family and your wife Ang, Ali and Bella are so beautiful. You are one lucky man to have them in your life. Bella has inspired so many of us and made us realize the beutiful things in life and death. Thanks for sharing with us. We are praying for your family to have the comfort, strength and love to carry on and ask that God will bless each of you with the things you are in need of at this time. Miracles will happen with Bella guiding and watching over all of us. I know she is smiling that beautiful smile and there is such love in her heart. Take Care. You are in our thoughts and prayers.

    Myrna & Dwight CA

  18. Tim,
    Just catching up on a few posts, and I got both goosebumps and tears reading about Spencer in the McD's. It's almost eery how Bella "shows" herself. Really.... WOW.

    Following your journey and what you share about pain and suffering has helped me understand how to reach out to others who suffer a loss (use of "suffer" intentional). It also has made me realize that while the initial pain and shock of Caroline's EB diagnosis is long behind me (she's 5), there are moments almost every day when we/I suffer from EB. Mostly when there are simple things she wants to do but can't (and she's almost always so accepting about not being able to do them), or when her older brother and sister are hurt by others' unkind stares and questions. (So far, Caroline herself is not too bothered by it. She just looks back and says, "HI, I'm Caroline!")

    Hope Ang is surviving this first step back into the work world. While a difficult transition, I hope she finds some release in focusing (at least partially) on other things for some hours in the day.

    Take care,
    Adrienne Provost
    Palatine, IL

  19. It seems that you all "keep moving" in your family and that's good. And that you are always with nice people around you; you attract them.
    Hope everything goes well in your conference.

  20. Welcome to Ohio!!! You most likely flew right over my house, as I live in a suburb right by Hopkins Airport! I read your blog everyday... not sure how I came across it originally... but you and your family inspire me on a daily basis. Thank you for sharing your life with all of us.

    Berea, Ohio

  21. Good luck with your presentation, your awesome! keep up the good work.

  22. Ang -- sending you special support as you work back into work. You are loved.

  23. Good luck with your presentation Tim! You will be great!! Is that the guitar you guys bought in Kauai?!?! Love the pic of Bella! Please let Ang know we are sending her strenght as she eases back into work :)
    Love you guys,
    The Vanderbooms

  24. I can't believe you are here in my own backyard. I would have taken you out for a meal and maybe a tour of downtown...although I am guessing you got quite the foot tour last night.

    Good luck with the presentation and if you are in Cleveland again...send me a note on my blog.

  25. I was born in Cleveland, Ohio! Good luck on your presentation today,Tim. And I pray for continued love and success for Ang as she continues to transition back at work. Off to get another Happy Meal for Salvatore and I to split and another donation will be made! Sal likes me to write, "Salvatore loves Bella" on the little paper they give us!

  26. I'm sure you're bound to have more "C-D" moments. To be truthful they come more often the older you get. Encouraging, huh?

    Love, love the picture of Bella with the guitar. She is/was SOOO very adorable!

  27. Thank you Tim, again, for getting me thinking about what I'm doing to "change the world." I love the question that you ask..."Do you live to give or live to get?" I want to be remembered as a person who gave my all, like Bella did!

    Today is +1 of my goal to commenting every day!

    This picture of Bella and her guitar is priceless! I love it!

    Nothing more to say, except I hope all of the Ringgolds are having a great day!

    Megan from WV

  28. Look at us Ohioans! We should have been more vocal before the roadtrip. :-) Obviously, we're much smaller than Tx. Can get anywhere within a reasonable amount of time.

    Anyway, not asking for another memorial; but I enjoyed your speaking and singing so much, I look forward to (hopefully) hearing you again.

    Angelique, hope you had a great few days back at work. I really miss your baby girl.

    Ali, are you having fun with your friends? I bet you missed them bunches and I'm sure they missed you bunches, too. I'm very proud of you for being such a trooper on a very big road trip lots of grown ups would have trouble with! Your daddy puts up lots of pictures for us to see and I LOVE the picture of you sending off your butterfly. It was so special. I hope you have an extra special weekend!

    Love from Ohio

  29. Wow - what an adventure! Hope the conference goes well (or went well - I'm posting this on Friday afternoon so you're likely already done!) So glad that Ang's first day back went well - will pray for the transition back to keep going smoothly.

    Hope you have a safe trip back home...and will pray that the cognitive disturbances don't land you on the wrong flight! :)

    Love from TX,
    Laura (for Team A)

  30. Tim and Ang,
    I have commented a couple of times before. I don't a way with words like you do! :) However, I am still here, reading your blog each and every morning. I often think of Bella. You have touched my life and you and your family are in my daily prayers.

    You are a great advocate for EB.

    ~Christina- In Tucson

  31. I'm a lurker. I don't ever feel like I have anything meaningfull to say. Here's something meaningfull-Thank You. Thank You for showing me strength and faith in the face of tragedy.

    I agree with the person who said: "The reason I don't comment at work when someone has had a loss is because if it were me and I was doing pretty well at work (ie: not crying) all it would take is for someone to say something and I'd lose it."

    I am that person. I swallow everything and all it takes is someone to say "are you OK" to make me lose it completely and show the ugly cry (not a tear coming down, or eyes welling up but the full on scrunched up face, I may never stop crying with the heavy sobs that don't let you speak normally for hours)! Don't think those people callous, they are doing what they think is best-maybe they are afraid they will start the "ugly cry".

    Just another lurker in No. CA

  32. Ang,

    I'm so glad to hear your first day back at work was good. I know that it must be hard but, also at least you have something to keep you busy and distracted.


    I'm sorry your travels to Ohio weren't pleasant. Your hotel issues are funny though, but I'm sorry they happened. I really hope your day today went much better.

    I read the blog yesterday morning and had every intention of commenting but, my kids had other ideas and I just never made it back to the computer. As it is, I am just now getting to read your blog from last night. I hope all is well, and I can't wait to hear how great things went today.

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

  33. Well, Tim you asked for those of us who haven't come out of lurkdom, to do so.

    First and foremost, I want to express my sincere condolences to your entire family.

    As a parent of a now "young adult" (pretty much an oxymoron at this point) EB child, I have somewhat of an idea of what your life was like before you entered the BMT program. After your entry, I cannot even imagine your daily life.

    I am curious if there are any children who have survived this protocol, and no longer suffer from EB?

    When my child was born with EB over 20 yrs ago, there were no DNA tests, very minimal genetic counseling, no patient care conferences, DebRA was very young, and not nearly as staffed as it is now. There were only 5 regional EB centers in the US.

    My husband and I were similar to pioneers. We were taught some very rudimentary bandaging techniques, and pretty much sent home from the hospital with an article entitled "Thin Skinned Kids" (a very good article written by a man in the UK who was born with eb), a bunch of bandaging supplies and a baby who wouldn't drink a bottle. Breastfeading was not an option.

    We lived life one day at a time, and to a point, still do.

    I have to say that much of the reason I haven't participated here is that my child is physically grown. There is an element of feeling guilty when your child is much healthier than your friends' child suffering with EB.

    I think it is great that you have been able to share in such depth, your daily experiences. I have to tell you the truth, I would not have had your energy when my baby was Bella's age. I was very involved in just living each day as fully as possible, and getting through a full day's presentation of trials. By the end of each day, there was no extra energy. Running on empty was pretty much the norm for me most evenings. No way that I would have had the inclination to blog. Also, blogging wasn't as "in vogue" as it has now become. It may have been cathartic, but not at all practical to put yet another task on my daily calendar. Selfishly perhaps, but at the end of the day, I wanted to sleep, as I had to conserve and get as much sleep as humanly possible in order to face the next day. Start over each and every day. My memory of that time in our lives, is that I was totally physically and emotionally exhausted by nightfall.

    You are an inspiration to all EB parents, particularly those who are newly navigating such uncharted waters.

    Another roadblock for me in participating here being my feelings about religion. God, specifically, are a bit different than yours. When my baby was born, I was so angry with my God, the God that I was raised to believe in. I felt that no God that I had been raised to believe in would ever allow an innocent child, as well as her parents, family, close and extended, friends and acquaintances suffer watching what was "life" for us at that time. I have managed to put my anger in a place that I can deal with (or not would be the better description). I will never have the same type of relationship with any "God". So, I really have a bit of a hard time with your posts about how good your God is. I am happy for you and your family that you still can believe. What I read is that your belief in your God is comforting to you, and for that, I am thankful that you have made peace with your God.

    I will continue to keep your family as well as all of the families of the children suffering daily from EB in my thoughts.

    Thank you again for sharing your journey.

  34. I loved the McDonald story from yesterday. There is just nothing better than to have moments like that and you can just feel our angels working. Maybe Bella and Lauren are working together :) That makes me smile.

    Louisville, KY

  35. First time commenter, short time lurker. I,too, came to know of your blog through Patrice. I actually wasn't aware of it until the day Bella passed away. Since then I have backtracked to become more familiar with her and her story. She is truly a special and beautiful little girl. Of course, you already know that. :)She has touched my heart and I am so glad I have gotten a chance to know her (well as much as you can know someone you have never met). Never has a person I have never met affected me in the way that she has. I have cried for her and for your family more than once. I have told my family about EB and how it's something that just should not be. Especially since it affects the most innocent of us all. I have prayed many times for a cure and I believe in my heart there will be one day. I admire you and your wife. I admire the fact that you are making a conscience decision to not let this hurt your marriage and to face your grief. As a mom to two small children, I don't know if I could be so strong. Thank you for your words of wisdom and sharing your story. May God continue to lead you and your family through this difficult journey.

  36. I love todays picture of Bella...there is just something about it that gets me and makes me SMILE. Love it.

    I just had to go back and make sure I didnt already comment 2 of my migraine. Then I saw the Liconas comment about MCD and RMH and what they write "Salvatore loves Bella". So....very....sweet. I love it. :)

    I love that Angelique has such an amazing job...she is so lucky to have it as they are to have her. I get the avoidance of the offering of sympathy. Until just recently it has been for me more of the bringing of that grief to the surface not that I would think that it is gone or the grief forgotten. I have learned within the past 6 months that even though it may be hard to mention the name of a deceased loved one it can be harder for the person suffering the loss not to hear their loved ones name.

    Sending all of you my love and sweet kisses to Ali.

    Denise WI

  37. Welcome to Ohio, Tim! Great pictures of some of our downtown buildings! I hope your conference went well today, I'm sure it did. I read your blog every morning, but I haven't posted in a long while. I just wanted you to know that you, Ang, Ali and Bella are in my daily thoughts and prayers. I am amazed by your words and the strength you all possess. The memorials for Bella were beautiful. Thank you for allowing so many of us to watch and be there in spirit! I sent a tiny little gift to Ali (via our friend Sara Cooper who visits us each summer in Wickliffe/Cleveland!). Ali is just adorable, and I love her spunk! Have a safe trip home to your family. God Bless!