Thursday, June 2, 2011

June 2, 2011: Deja Vu


Tomorrow morning, I get in my minivan at roughly the same hour, and drive the exact same route on almost the same day as last year when I embarked for Minnesota.  I think it was June 8 last year.  The first day, I drove to Salt Lake City and stayed at the Red Lion Downtown.  I'm driving there again tomorrow.  This time, I'm picking up two of my colleagues along the way, but I am choosing to drive in order to experience the beauty of Utah just one more time.  Next spring's regional music therapy conference is in SLC, so last year, I combined a site visit with my trip to MN to kill two birds with one stone!  This year, we have are annual mid-year meeting at the location of the next conference, so here we go again to SLC!  The drive up I-15 from St. George, UT is just beautiful.  It's just blazing through the rest of the desert of CA, NV, and AZ to get there that one has to get through first!

Today, I have been feeling some pangs of regret, like wishing it were this time last year and somehow, some way, things could have gone differently.  I miss Bella so much, it just kills me sometimes. Usually about once a day.  I just look at her pictures and just apologize.  "I know, I know," I tell myself, "You made the best decision you could, given all the information you had at the time..."  Sometimes, that line just feels like BS.  Sometimes, I don't want to be strong.  Sometimes, I don't want to do the requisite cognitive reframing in the moment.  Sometimes, I just want to feel BAD about the whole thing.

As Julian approaches 28 weeks tomorrow, I know that when he arrives, so much will change yet again, and the presence of a baby will snap us into the present on a moment by moment basis.  Still, I am afraid to leave Bella behind in the bustle.

One other thing that is really wrenching at me is my photo collection of Bella.  At the end of each post, I put up a picture from roughly the same time last year, just to keep the memory alive.  This was really the "sweet spot" of Bella in her development.  She was just so serene and sweet this time last year.  Come the end of this month, I will be out of pictures of her living and smiling and connecting with those eyes.  In my iPhoto program, I can filter my pics by "Last 12 months" and I usually pick the best picture of Bella from that time.  This habit has been very therapeutic for me with this blog since she died.  I feel like I'm about to lose her all over again, in just another little way.

In other news...

I had the honor and privilege of being interviewed yesterday on Deborah Wilson's blogtalk radio show "Angels and Prosperity." I gotta learn to tell stories with a little more brevity!  LOL.  I really went deep with some of my stories, because Deborah left the flow really open, so off we went!  It felt so great getting to share how music has been the net that has held first me, then others, then finally Bella, throughout some of the toughest of life and death moments.  I am so grateful to receive music and to give music; it is such an amazing gift.  Deborah really encouraged me to share how that thread of music has woven throughout my adult life to guide me to the best version of me I can be.  Thank you, Deborah!  Click on the link above to listen!

I have to go now.  I still have to pack, it's 10:15, and I have to be up at 4.

Two quick things...

I'm going to start posting on Sun Tue Thur again.

Also, I re-opened the commenting to anyone.  What made this blog worth valuable to Ang and me was the connection BACK from you all through the comments.  I failed to maintain my own self control on my own blog a couple of months back and lashed out at a blog follower.  I never should have done that.  Ever.  If that person is still reading my blog,  I apologize.  Please forgive me.  I learned a valuable lesson.  I may write this blog, but Angelique also reads it daily and we both are truly touched by all of your wonderful thoughts, wishes, and comments as we seek to honor Bella by making the path for all other kids with EB (and their parents) easier through funding research that hopefully leads to a cure.  By recoiling and building up walls to protect my ego and my feelings, I pushed all of you away.  I am sorry for doing that.

Please, if you haven't in a while, drop us a line and let us know how YOU are doing and WHERE you are.  That contributed SO MUCH to us knowing you and where you play this game called life.

Much love and respect,

God night.


  1. I usually just lurk. But thought I would comment tonight. I always read. Have for about a year. You guys are truly amazing. Really.
    Have a safe drive. And if you get some free time on your SLC adventure(I lived here), I would love to connect with you, Bellas story has really touched my life. *Gabby

  2. Thanks for opening the comment box for anonymous users like myself. While I haven't left any comments in months, I continue to read blog on a regular basis.


  3. Oh Tim and Angelique - love you guys so much. Your thoughts about Bella and decisions made, etc. really brought tears to my eyes. Still wiping them away. The decisions you made were for her to have as pain free and as normal a life a possible, that just wasn't God's plan. You did the absolute best for her that any parent ever could. And with grace and courage.

    Please don't be so hard on yourself (regarding the blog) - we are all human. And I'm so glad you've decided to open up to "anonymous" again. There are probably lots of "anonymous" people who haven't gone away but at just too old to figure out how to post otherwise! Love, Terri

  4. Good morning, Ringgolds!

    I also appreciate your allowing the anonymous comments again. I did register so I could comment - and did so a few times - but I didn't do it often enough to remember my sign on and password. Yeah, I know, I should have written it down. will be much easier this way for me to stay in touch!

    I haven't missed a post and continue to be blessed by your journey. My heart still aches for sweet Bella and your loss. But I am always energized by the pictures and stories of Miss Ali. And I can't wait to meet Julian!

    It is sweltering here in NC, and I'm trying valiantly to get to June 14 which is our last day of school. I can hear summer calling to me so I keep forging ahead.

    Take care and be blessed, sweet family!

    A friend in NC

  5. Kelly in Tampa, FL soon to be Seattle, WAJune 3, 2011 at 7:13 AM

    Hi Tim, Angelique and Ali,

    I am so glad you opened up the comments. I have missed communicating with you all!

    First off, congratulations on Julian!! What a blessing he will be. Bella is always present in him as they are both miracles (as is beautiful Ali). Julian will always have two wonderful big sisters. One here on earth to play with and learn from and one in heaven always present and protecting and loving.

    I see Bella everywhere and think of her often. There isn't a day that goes by when I "see" her.

    I thought of your family recently when we landed in the PICU for a few days with my 22 month old. He had a severe event of DKA (he was diagnosed with Type 1 diabetes at that point) and was in a coma for a few days. I remember thinking as I was "living" in that hospital room that you endured that with Bella for 100 days. The level of stress, helplessness and sadness is so intense. That you were able to keep it together and champion for Bella speaks to the power of your love for Bella.

    Safe travels!

    Love and hugs,

    Kelly in Tampa, FL

    (I won't be able to comment again for a while as we're moving to Seattle next week -- 2 adults, 2 kids, 2 cats, a black lab and a whole lotta stuff across the country -- wish us luck!)

  6. Have a safe trip. I usually lurk, but have commented a couple of times. I have been reading the blog for about a year and am in constant amazement by your family's strength.
    Reading the blog this past year has helped me during struggles in my own life, oddly enough. Each night as I was nursing my youngest son to sleep, I would read your blog and quietly reflect on all you wrote.
    Thank you for helping me grow with my own faith.

    Shanna in Mobile, AL

  7. Dearest Tim, Ang, Ali, Bella and Julian!

    I can't tell you how delighted I was to see that anon comments were being accepted again. It's Jane. From the Rooftops. When you removed the anon category, I panicked because I am pathetically non-technical (it's a wonder I don't send you my comments written on vellum with a quill pen and delivered by pony express) and I had no idea about IDs and passwords. In my defence, I once had some hacker messing about with accounts on an old PC. Once bitten, I suppose. Glad to see Terri and Susan, Laura and Gabby (in the comments) shared my diffidence. With all of them, I bet there will be many more anons popping up from all over the place. Though (one hopes) only the decent ones.

    Anyway, now that you're letting me ramble on again, I am much relieved. It was a torment to find out the wonderful news about Julian's non-EB status but not to be able to congratulate you. And it remained a torment not to be able to just add a few words here and there on days when you were looking back as well as forward, and feeling Bella's loss. I so sympathise with what you say about Bella's photos being finite. I try to imagine the sadness of that - only you know how it really feels. Still, I think of her in your hat on the plane and I always smile. Such a quizzical face she had...

    My rooftop is awash with moss. I have never known such rain as we've had since the start of the year. Still, I'll risk a major injury just to get out there and shout out loud that I am thrilled to be back!

    Love to all 5 of you,


  8. We are here! Always! Have a safe road trip :)
    Love you all,
    The Vanderbooms

  9. Hey!!! I'm a lurker and because I'm not a blogger, I don't comment but have sent you emails to your email address.

    Halfway through this entry, I was thinking = wow I need to email Tim ...damn that I can't post a comment. I really need to figure out how to "join" so I can post.

    Then I saw you reopened it. Good for you. It's not a small thing. You are opening yourself to growth and you know you are in it for the right reasons.

    Look dude -I don't know you personally but I have seen that you are human, open, honest and real in this blog. Do I like it all, who would? It's tough. Tough subjects. Tough to join in the pain of a little girl whose life ended way too early....

    So I was going to email you to say that your second, third and fourth paragraph are so "wow"....thank you for sharing because I would be feeling the same way.

    Bella had the best family she could have. She did. Every single thing you and Ang have done was the right thing. Period. You know that, Bella knows that, God knows that. Those of us who are "blog friends" know that. Period.

    As for Julian, of course that is going to be your focus. He is a new life that deserves all the love and attention that Ally and Bella have received.

    You'll see the EB thing to the end. You'll be there when there is a ROOM full of families whose children lived because of your contributions. It's a marathon, not a sprint.

    Congratulations to you and your family. Kudos for apologizing when many of us would not. The bigger your heart is, the more love and blessings it can receive.

    Listen, just start those photos over again. I love seeing them.

    If you are ever up in Silicon Valley, I hope to meet you and your family.

    Blessings on all of you,

  10. Ooooo....after posting mine, I read the ones above. I wasn't alone in reading and being anonymous and wanting to comment!

    PS....Bella's bash looked amazing....

  11. Hope you have a safe and lovely trip!

    We are still here, still reading. It's summer time and I'm loving it. Ari is learning to use the potty! Only a little over a month until he turns 2 - he will have a fire truck theme birthday (pool) party. :) I'm even going to try my hand at making a fire truck birthday cake!

    I hope Ang is feeling good!


  12. Blessings on all of you!
    I'm still missing Bella too.

  13. I'm still here too. I have not missed any entry either.

    so glad to hear about Julian. And loved hearing about and looking at pictures from Bella's bash.

    You are both so inspiring, and I am looking foward to reading every day.

    Long Island

  14. Hi Tim and Ang.
    Although we were in touch with Team Bella, I'm so happy this way of communication is back!! And to know that I was not the only one with technology problems!
    Always reading and thinking of you,
    Mariana, UK

  15. YAHHHHH!!!! I was wondering why I couldn't post a comment anymore. Still reading, I am still here (-: Since I have not got a chance to call you guys, I wanted to make sure to THANK YOU for allowing me to particpate in Bella's Birthday Bash. I want to be included every year (-: It was such a beautiful day that I will treasure. Hope you all are doing well, especially Little Juilan.

  16. I'm glad to hear you've opened up comments. There have been a few times I've wanted to comment lately but have been unable. Thank you. I hope you have an amazing journey up to SLC. Safe travels.

  17. I have always enjoyed Bella's pics at the end of each post. Very cool that they correlated with the time of year. I'm very sorry about those twinges of grief. I want to say something like, "you will work through it, it will get better", but that sounds so cliche. So I will say, I hear you and I'm thinking of you and sending you + thoughts and wishes.

    Oh, and here recently, I really see Ang in Bella. I used to think the girls look like you, Tim, but my oh my! About two weeks ago you posted one that was Ang all the way. (and every one since then)

    The Bash...I remember you had to come up with a location because the original didn't work out. The Butterfly Garden had to be perfect! What a beautiful way to honor Bella's birthday.

    Yesterday I was saddened to find out a friend of mine has a brother with a newborn diagnosed with EB. I cried for them. I cried for their crushed dreams. I cried for their new normal. I am exposed to EB every day of the week and it just crushes parents. Thank you for going for the gold and helping ensure there is a cure out there. Which, BTW, some of these more recent BMT's look really good! I know it's not an easy road, but Dr's Wagner and Tolar are on it! It is very exciting to see these successes and I can only imagine how wonderful you must feel knowing you have contributed and dear, sweet Bella contributed to their successful journeys.

    Have a safe trip. So glad the pregnancy is going well. Will continue to check in daily as I always have.


  18. We're out here reading along, just like at home!
    Much love, The Edlings

  19. Tim & Ang,
    I've been out of touch for a few weeks. We transferred to South Carolina with my husbands job, but I'm back.
    I really enjoy the pictures of Bella, and was thinking about what you just wrote. I will never forget Bella, as will no one else. Maybe, the time has come to stop the pictures, as you are coming full circle. Bella's job on earth is done. She will forever be working her magic from above. She is watching over her earth family & getting the newest member of her family to live a healthy, happy life with his Mommy, Daddy, & big sister.

  20. So glad to be able to comment on your blog again. I've never quit following your blog, and your heartfelt comments regarding Bella, Ali, Ang and Julian continue to touch me in so many ways. Please know that there are still people out here that are thinking of you and praying for you.

    Kansas City, MO

  21. Hi Tim, Angelique & Ali,
    Always read you blog, just don't always comment. Hard to believe Ang is 28 weeks along already. Wow! That time seems like it went fast (probably not for Ang though). I look forward to watching your family grow through the pictures you share!
    St. Peter, MN

  22. Hi Tim. I've continued to read but haven't posted in a while. My mom went through a transplant a month before Bella and during the process I related a lot with you. Unfortunately after a rough year she had some complications and we lost her a couple of weeks ago. The pain is still very raw. I went back to the states and brought my kids back to Spain with me to spend the summer with my dad. I know very little about grief, but I'm hoping us being here will help some. Are there any books about the grief process you could recommend? I would really appreciate.

    Pati :)
    Madrid, Spain

  23. My heart hurts that your heart is hurting. Always thinking of you all.

    A quick story...for my new job I needed to pass a physical therapy "test" and a physical. At my physical therapy test my BP was sky high...the highest I have ever seen it. As I was called back for my physical I noticed the nurse had a butterfly clip holding her hair back (at first I thought nothing of it). I was sitting there stressing and then I noticed the second nurse had butterflies (in lavender and pink) all over her top. Then I smiled. I took it as a message from Bella...telling me to stop stressing it all was going to work out. It has...I passed both and start Monday. Most would say it was coincidence. For was a message from above. Agreeing with a comment from above...I will NEVER forget Bella.

    Sending you all love and the sweetest of kisses for Ali. Belly rubs for Julian!

    Trouble posting tonight...oh and safe travels.

    Denise WI

  24. First time to comment, long time follower.

    My heart hurts for you during your days of struggle, and my heart smiles when you smile.

    Please be safe in your travels, I know it will be difficult, and I pray for your strength!
    I enjoy your pics of bella, I only wish you put a brief description with them. Just a thought!

    Peace, Love & Belly Rubs
    Jennifer, NC

  25. Hi Ringgolds! Sorry for not commenting in a while - I've been reading but it seems as though that's all I've had time to do lately. Will make better efforts to leave comments!

    It is blazing hot here in Texas - SLC sounds like a wonderful place right about now! Praying you will be safe and that this will be a good trip for you.

    Love seeing those pics of sweet Bella too, and I cannot imagine how much you miss her. Praying that God will give you peace and comfort each day.

    Tell Ang and Ali hello - hope Ang is feeling great!

    Love from TX,
    Laura (for Team A)

  26. An avid follower and always amazed by your familiy's strength! What an amazing blessing Julian will be. Safe travels on your trip and know Bella is watching over you and your family!