Monday, November 15, 2010

November 15: An end and a beginning


Well, yesterday was just about as good as it could have been. Thanks again to all who participated in the day. Your presence, whether it be in person, in spirit, over the internet, it all contributed so much to the beauty of the day. Three wonderful photographers captured the event all in their own way, and over the next three posts, I'm going to share how they saw the event. Today, enjoy pictures from Ang's step-dad, Rodger. I know that the pictures won't be congruent with the text they surround, but we'll all survive. I just didn't feel like doing a slide show.

Today was not quite so hot for me. The walls of grief hit early and often and HARD. I sprung up at 6:00 am after a good 8 hours of sleep (I went to bed uncharacteristically early yesterday), but realized how early it was, and treated myself to a little extra rest. This was a bad idea. 4 hours later, I was still in bed. I didn't bring Ali to daycare today as I could tell she was needing some mommy and daddy time. Daycare just isn't stimulating enough for her anymore; we need to find a new school out here for her and fast!

The house is a disaster, and it's driving Ang nuts, so I tried to pull Ali-detail and free up Ang to work, but this was much easier said than done. See, last winter and spring, I watched the girls 4 days a week, and they went to daycare only one day a week. We are saving up a down payment on a new home, and me staying home with the girls helped a ton in that category. Anyway, while Ali and I played around the house today, I couldn't handle the GIANT ABSENCE OF BELLA. The grief was just beating me over the head all day. Remember that 'cement helmet' I described a while back? Well, that was the sensation I had throughout the day. It was so bad that Ang had to drive to her brother's for dinner tonight while I sat in the passenger seat.

I broke down crying a couple of times in front of Ali today, and she really wasn't that into talking or even listening to what was going on for me. That's okay; I'm just trying to show that it's okay to cry in grief if that is what you need to do. Later, when it was time to go to bed, she asked mommy to read her the two books on losing a sibling that were given to her by the hospital. She works things out in her own way and in her own time.

We had a lovely dinner with my mom and step dad, and my aunt and uncle who were in town for the service, along with Ang's brother Steve and his 2 kids at his house. Ang's mom and step-dad came by to visit as well. It was our big outing as we had stayed home all day.

Now what?

This is the question anyone who has lost a loved one, whether it be parent, spouse, or child, has to wrestle with. What is our "new normal?" Where is our "new normal?" To serve God's divine plan sometimes means doing things you don't want to do. "Ad maiorem Dei gloriam" is a challenging philosophy to really live. It requires one to put the ego on the back burner and live from a place of humble service, and this is not our western way at all. Our western way is to exhault the holy ego for the betterment of one's self, regardless of the ripples this lifestyle causes. It is critical to develop and honor the self insofar as it expands its ability to help others, but that second piece of the previous sentence seems to get forgotten too often along the way.

I find that my brain is the most serene, most focused, and most confident when I am concentrating on two things only: how to serve God, and how to serve my fellow man. What is opening up for Ang and me right now is that we have a tremendous opportunity to share our wisdom from this journey with the world. We also know in our hearts that we can raise the money the researchers in Minnesota need to isolate the stem cell that is responsible for this amazing process of bone marrow transplant. In doing so, they will be able to more accurately apply chemotherapy and hopefully with less collateral damage. It seems easy to us to raise the money; we want the doctors utilizing their unique ability which is to be in the lab and the clinic, not at a million charity events and fundraisers, and not at their desks writing grants. It takes 6 weeks at minimum to write grants, one of the docs in MN explained, given their complex nature.

Would you want one of your employees out of work for 6 weeks trying to find money to pay themselves? Not an efficient use of their time or expertise.

Look, what do I know about making a lot of money or raising a lot of money? I'm still staring at giant student loans and a tiny retirement account, but my heart tells me that money is a product of value creation, and it's not "hard" to make. It just requires a recipe that heretofore I haven't properly followed. Well, enough of that. Time to really cook with gas. I have met some real dimwitted, uncharismatic buffoons in my day who are RAKING in money in their respective industry despite themselves. If they can do it, I can do it!

Lastly, the whole money conversation is so meaningless without a context. No matter how much we make or raise, we can't ever experience the joy of how challenging it was to care for Anabella. So, since we can't have that, why not make the world a better place instead?

Theresa Liao, one of the other EB BMT moms who lost her son in the trial said something similar to the following, and now I get it. Before Bella died, I didn't get the urgency, but now I do.

RDEB took Bella's future away, so we're going to take RDEB's future away.

This is now our life's work. Seems worth it to me.

Do you know what your life's work is?

How are you going to leave the earth when you die? The way you found it?

Why not either do a few upgrades around the place yourself, or maybe help out with someone else's project. Just don't leave it the way you found it, okay? That's too easy, and as my wife said in her eulogy, "Where is the reward in doing what's easy?"

God night.


  1. Hey Ringgolds,

    My heart is bleeding for you all. Crying is healing so it is "A" ok to CRY so cry as much as you like I am crying writeing this and I am at work going into a meeting in 10min I really miss Bella so much and I have never met her in person.

    Bella is and will always be special to allot of people around the world Bella's story has changed my life for ever and for the best thank you Bella and family.

    Know that I am praying for your family all day and everyday. I dont always post a comment but I never miss your posts!!!

    God bless you all and I love you all so very much thank you for sharing.

    Love Donné Sunny "Rainy" South Africa

  2. Beautiful pictures.
    How could we help you with your cement helmet? Would time just help? Of course you were going to feel like that ... but you will recover. God will help you and guide you.
    what do we do to make this world better? I haven't done much I'm afraid. I now have that opportunity to help a charity in Argentina and I still haven't done anything ... Keep postponing, too busy, don't know how to get the money, I'm not good at that .... And I feel bad about that ...I need a push and your post make me reflect again about how important is to help and try to make a difference.
    Thanks Tim again.
    Praying for you and Ang to be comfort and strong.

  3. Man oh Man Tim even in the depths of grief your brain and heart are working and making us all work, heal, think, and plan alongside you! That is GOOD stuff! Bella is affecting a change and a passion and a cause in many.

    "Do you know what your life's work is?" Like Angelique said, "Where is the reward in doing what's easy?"

    I continue to examine myself and try to move forward into a better self. For that I THANK Bella and you all!

    Love all the pictures - especically today's pic of Miss Bella!

  4. As a researcher, I thank you for your is a huge part of what I do, and lack of money slows things down. Minnesota and every other academic health center in the country is hurting when it comes to funding. I hate the way that money talk takes away the humanity from the situation but it is a necessary discussion. I am astounded by your motivation in the midst of such grief. It takes an amazing person to do what you do. Thank you.

  5. Again, I have no words of wisdom here except to tell you that I'm praying for you, Ang and Ali. I cannot imagine how overwhelming your grief is, and I'm praying that God will bring you peace and encouragement, and that your grief won't consume you.

    I get the thing about staying in bed too long. My grandmother battled depression (among other mental illnesses) for most of her life, and when things were at their darkest, she would just want to go to bed. She lived with us for a while when this was going on, and my dad would fight her every step of the way to keep her out of bed! So I'll pray that you'll have the strength to rest, but not over-rest (if that makes any sense!)

    Thanks again for being so willing to share all of the ups and downs with us!

    Laura (for the Team)

  6. Tim-you and your family really are an inspiration and i love the way you have us questions our own lives and the gifts or garbage we leave behind. Because of bella-i have a sudden renewal in faith and I am consciously trying to "not sweat the small stuff". Until your story, i feel as if i was just going right along in a selfish way and now i am really listening and re-connecting with the greater good! god bless you all!!!

  7. Mornin, Tim,

    I think it is normal to be experiencing a "slowdown" now after all you have done and so intensely. We have to always re-establish balance after any intense experience, sad or even happy. Be as caring to yourself as you were to Bella. You're sort of "at recess" now gearing up for regular life again. I have total faith in you to get back on track. Now that life has changed AGAIN, as I said before, "Look out world, here come the Ringgolds". Greenie

  8. Finally watched the memorial. It was not easy for me. I especially sob when you sing.

    Man! Not only do you write, but you speak too! What a gift you are.

    I really feel like I knew Bella personally. Sometimes I think I've interacted with her; even done dressing changes on her. I care for an EB child, so when I look at Bella; I don't know. Just seems like I know her. It is most likely through your writing.

    Thanks for your gift and sharing the gift of Bella.

    Ann in IN

  9. Sending you all so much love.
    Love from Lolly.

  10. Sending you love and strength. I wish there was a way to help lessen the load of that cement helmet! Most cannot even begin to understand what it is like to lose a child, but most of us (your online family) would do anything to try to help you all cope. Please don't ever hestitate to ask for help. You have given us, and so has Bella, more than we can ever return to you. Please don't forget that.
    We all love you and lift you and the fam up daily.
    Stay strong.
    Love always,
    The Vanderbooms

  11. Hi Tim,

    Beautiful post as always. I really appreciate all you said about raising funds so that researchers can get back to what they do best - finding cures. My husband is working on his PhD in Neurobiology and Behavior, focusing on Alzheimer's Disease. I think one of the reasons he chose this particular research field was because of the loss of his grandmother to the disease. She was only 50 when she was diagnosed and passed away 8 years later. Having witnessed all he goes through applying for grants and helping his PIs apply for their grants, I can honestly tell you that so much time goes into writing these things. Money is only money...but its so necessary for research. Sometimes they can do experiments and such things for a cheaper price, but then they have to spend tons of time preparing things that they could easily buy (and again, this gets them back to spending their time curing EB)

    Thank you for seeing an often unrealized need and helping our researchers get back to what they do best. I have faith that many wonderful things will come from all you are doing. May God bless you every day.


  12. Hi Tim,

    I just wanted to send you, Ang and Ali a big hug!!! Please know we are still following your blog and continue to think and pray for you guys. Thank you for remaining honest and open. Your writings made/make me think about things that I never took the time to put effort into. You, Ang, Ali and Bella continue to teach me each day!!! THANK YOU!!!!!!!!!!!
    and some xtra xxoo,
    The Davidson's (Braeden's Mom)

  13. "Perhaps they are not the stars but rather openings in Heaven where the love of our lost ones shines down to let us know they are with us."

    What a beautiful sentiment and one I've never heard before. When you've loved someone so deeply, you can't help but see them all around you when they're gone. Hopefully with time that brings more comfort than pain.

    Sorry that you're struggling so much right now and praying you can find comfort and solace in the love of family and friends who care so much about you. And most of all, that you know the peace that comes only from God.

    Take care, sweet family. It's a joy to continue following your journey. Thank you for including us!

    A friend in NC

  14. Thank you (and your family) for sharing your journey and challenging us all to reach for the best within us.

    I am praying for all of you as you seek to define your new normal - I can't imagine a tougher position to be in.

  15. I'm so sorry that yesterday was such hard day emotionally. I don't even want to imagine losing one of my children so I can't even begin to understand your grief. But, I do want to thank you for sharing with us honestly how you feel day to day. I do know that sharing an experience that causes us pain, does help to alleviate that pain in some ways. I just wish there was more I could do...

    Thank you for posting another GREAT picture of Bella. It looks like she had quite the comfy carseat!! Looks so plush.

    I am continuing my prayers of comfort for your family. May God answer my prayers...

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

  16. Tim,

    I hope today was a better day for you. I admire that Ang can step into the driver's seat (literally) when you need her to, and that you can let her, and vice versa. I'm happy the two of you are so good at being there for one another.

    I want to echo Tina and say that thanks to Bella and your words, I am continuing to try to improve myself and my marriage and give back to my community. I am continually amazed that I came across a seemingly random blog that has had such an impact on my life and my inner self. This blog - so therefore Bella - really has changed my life for the better! I won't get into too many details but I did want to mention it once again. :) Thank you!

    Cara in Tucson

  17. I am sorry that the grief has hit you hard again. It amazes me that you are still so insightful in your blog even when grief is grabbing hold. I hope today was better and that the good days continue to outweigh the bad.

    I know exactly what my lifes work is...I found it not so long ago. I was looking for a purpose...looking for a way to make a difference not just in the world but in the lives of others. Because of Clara...because of a little boy, Caleb, that touched our lives briefly and because of so many children and families that are impacted by "rare diseases"...and now because of Bella...I want to raise awareness. For those unheard of childhood diseases. I also want to touch lives individually. Offering a bit of assistance with photo editing to someone that has lost a child. Doing a scrapbook of the life of someone that means so much but is gone too soon. Collecting pop tops for RMH. Donating stuffed animals to "Claras hospital". These little things ...these I can and will do. Making a difference doesnt have to be big...doing a little bit at a time makes a huge impact too. Ripples.

    Which this just popped into my head and I must share. I love this "story". This isnt exactly the way I remember it but the message is the same.

    The Starfish Story

    adapted from The Star Thrower
    by Loren Eiseley
    1907 - 1977

    Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

    One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

    As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

    He came closer still and called out "Good morning! May I ask what it is that you are doing?"

    The young man paused, looked up, and replied "Throwing starfish into the ocean."

    "I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

    To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

    Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

    At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "I made a difference to that one!"

    If there is any way that I can ever help with your mission...all you have to do is ask.

    Sending you all my love and sweet kisses for Ali.

    Denise WI

  18. I read your entry this morning, and continued to think about you all throughout the day. May God hear our prayers, and comfort are an amazing family and I can invision God smiling and saying 'Well Done' to you Tim, Ang, Ali and Bella Doll. My heart aches with yours; however, I may not know the depth of your ache...but it aches. Please know that there is a slew of us out there praying and thinking of you all NON stop...I hope this helps a teeny tiny bit.
    always thinking and praying for your precious family,
    nicole b

  19. ps...keep the pictures that carseat! :)))

  20. No words to say, only a big hug.

    Carla, Luxembourg

  21. I just had to skip everything else after "time heals all wounds." I few weeks ago during a flood of grief I posted, "Time heals all wounds is a crock of sh*t!" I've heard that phrase so much I used to put my hope on that, before I lost someone real close to me. I realize it isn't so true at all. I miss my Uncle more and more everyday as time goes on. Time is what really makes it sink in on me that he is gone, and he is not coming back:( :( Hurts. :,<
    I love and miss him so much! More so today than yesterday, or the day before, or the days before that.

    I miss Bella too...even though I haven't been around before she went home. I miss her for you, her mom, her sister, and her family.

    Before I go back and finish reading, which helps me btw, I want to share a quote from Moulin Rouge...."The greatest thing you will ever learn is to love and to be loved in return."

    Thanks for sharing your grief, your heart & mind, your family, and what it means to have lived life with Bella.