Thursday, October 27, 2011

Thursday, October 27, 2011: EB Awareness Week Part 3...


I had a profound coaching call (as the coachee) yesterday that reminded me of some pretty amazing things about this game called life, and I want to touch on one or two of them tonight.

The first one is this.

The impact of a child with special needs (in this case EB) on a marriage is crushing.  The statistics are like only 1 in 20 marriages survive.  Said another way, 95% end in divorce or separation.  This was revealed to Ang and I shortly after Bella was born by a loving, concerned fellow church member who sat us down with our pastor to ask how the marriage was doing.  I knew the statistics were bad, but I didn't realize they were that bad.

In that conversation, Angelique and I made a decision that we were part of that 5%.  However, it is easy to see why the numbers are the way they are:


EB moves into your home and takes over.

There is the medicine cabinet on the kitchen counter for the half dozen to dozen medications and supplements that must be added to the child's diet.

There is the treatment table, whatever that ends up being, where dressing changes take place.  Dressing changes could be required daily or every other day,  and they can take from 2-8 hours.

The bathtub turns into a torture chamber.  Period.  Even if the child can tolerate a bath, the smell of bleach or vinegar added to the bath to attempt to kill off bacteria permeates everything.

The cases of wound care items turn some part of the house into a medical storage facility.  

The child's toys all have to be soft.

The child's clothes can't have any applique, embroidery, zippers, or anything hard, scratchy, rough, or sharp.

I remember one of the first nights Bella came home from the NICU, I got up in the middle of the night to go to the bathroom.  As I walked half asleep, all dazed, to the bathroom, a single blue night light emanated a dim, blue haze across Ang's vanity, which was COVERED in medicines and bandages.  In that half asleep moment, I thought I was in a MASH unit from the army hospital.

All social outings must be considered from a medical safety lens, and fun and recreation take a back seat to safety and security.

Then, EB moves into your heart and takes over.

You grieve the loss of the future you thought your child had, and the future you thought you had with your child.

You learn to turn off your heart and objectify your child when doing bandage changes.  You must become a wound care EXPERT to keep infections at bay, so when your baby is on the dressings changing table (not the diaper changing table), your heart is blindfolded so all you see is a hand, an elbow, a foot, a knee, a fingernail (or lack there of) until you literally put your child back together again with bandages that can cost $10,000.00 a month - EVERY MONTH - to supply if insurance won't cover them... and they often only cover a FRACTION of what's needed.

You learn to ignore all the stares, and dumb comments you get every.single.time. you walk in public with your child.

You try to forgive yourself for being short, frustrated, or annoyed with your "other kid(s)" when their comparatively trivial problems cause them to whine (appropriately) about them.

You try to remember your spouse is the love of your life, and not your medical colleague.

You try not to blame yourself for your child having EB.  You invent any and every positive, inspiring, enlightened, faithful context you can to keep you from thinking you did this to your kid... unintentional and unknowingly aside.


Now, having said all that, there are the 5% that withstand the tide of circumstance and soldier on together, despite the odds.  Why?  What are the key ingredients present in the 5% that are missing in the 95%?  It's not that the 95% are doing something wrong and the 5% are doing something right.  I think it is that the 5% are doing several things that the 95% aren't, the presence of which would change the game for them.  You all know by now that we have a couple of equations for living in this house, like E+R=O,  and the 3 F's (Friends, Family, and Faith), but I am curious.  What do you see?  As an outsider, what elements are present here that are missing in families you know that have split?  A dear friend of mine, and phenomenal Traditional Chinese Medicine practitioner, Cristo D'Arcy and I want to begin to serve this community, and the first thing we though of was sharing/teaching the elements of a tragedy-proof family.  However, in order to teach it, we have to articulate the big/crucial elements first.

This is where you can help.

Please comment on what you see as being the biggest elements present in our marriage (holy cow this is vulnerable) that would benefit struggling couples.  This feedback will help us tremendously as Ang and I are in the middle of this whole thing.  There is a limit to our ability to reflect and observe ourselves objectively.  Thank you for your help.  Please be respectful on this; we're not fishing for compliments or critiques.  We are looking for something very specific here.  What elements are present that you observe that seem to allow us to withstand breaking apart from the enormous stress our family has been through over the past 2 and a half years?

Said another way, what would you teach a struggling couple based on what you've observed us practicing/being/implementing?

Thanks for being our partners in eventually moving the number from 5% to 6%, then 7%, then 10%, etc.


I said there were a couple, but I feel like I went on for too long to talk about anything else tonight.  I do want to close by thanking all of you that posted my poster on your fb pages! Thank you to all of you that have dug in again and texted BELLA (or TRIPP) to 50555 this week.  Collectively, we've raised just about $3,000 THIS WEEK ... ten bucks at a time!  THAT is cool, because it shows just how many people are getting involved in taking action for a cure for EB!  There are so many ways to take action, and each and every way is VITAL.  I highlight SIX WAYS you can be a part of the cure on the PUCK website HERE.  Feel free to check it out and pick one (two, or four;)) way that most resonates with you!

If you haven't yet, in honor of EB Awareness Week, would you be willing to share my photo above on your facebook page with the following caption?  (or feel free to write your own)

"Meet Tim Ringgold.  I read his blog.  He lost his daughter Bella to perhaps the worst disease you've never heard of: Epidermolysis Bullosa, or EB.  In honor of International EB Awareness Week, I'm doing my part to help be a part of the cure.  Please go to to learn more about how you can, too.  Thank you."

To download the photo, if you're on a PC, just right click on it (I think that's what you do), if you're on a mac, hit CTRL+CLICK and you can download it wherever you want on your computer, then upload it on your wall and tag me.  (P.S. If you live outside the U.S. the texting won't work, so just ask people to go to the site and they can donate $10 on the website if they are so moved.)


Despite ALL the circumstances, we remain blessed.

God night.


  1. This is a really tough one Tim.Following your blog has shown me very little of Ang. clearly she is a lady of great strength and courage.I pray often for this brave mother.Your love and respect for Ang are clear,and you have said often how lucky you are to have a wife who understands your hyperactivity.I do think its a mystery why some marriages make it while others dont. every single person reacts differently to tragedy/sadness/illnes etc. One could argue that your marriage is still very young. On the other hand as a couple you are going through the toughest pain of all. I have the greatest admiration for you both.Whatever it is you are doing keep it up

  2. maybe its the teamwork that it sounds like you share

  3. Attitude. Positive attitude. Hugs, Terri

  4. Powerful post! When you started by committing to staying together, you took the constant option of leaving the marriage out. You pulled together. Obviously for anyone in a marriage, we know there had to be times it was tough.

    God, love and respects. You must have just stuck with it. Taking the option of growing apart out of the situation, being two devoted parents to Ally.

    Remember, you were the super hero family at Halloween! That said it all.

  5. Communication. It seems like you two communicate beautifully but I have seen others falter during times of stress and sorrow due to a lack of communication with their spouse or significant other. Blessings!


  6. Tim and Angelique, I believe it's your trust in God that has kept you together. Through your belief in God's will, you were able to accept/trust what we given you and therefore, neither of you blamed the other.

    I recall reading your blog just after Bella's death and how you described her last moments and what everyone's part was after her passing. I wondered how, through your raw grief, that you were able to write that post. It's because you saw the entire journey as God's will and as Bella's purpose. It's this same belief/trust in GOd that is leading you to campaign (if you will) to find a cure for EB.

    As I did last year, I will be participating in 2 craft shows this year and am pledging 10% from my sales to P.U.C.K. Last year I was able to give $125.00. Again, my God given talent is helping in this fight for a cure.

    Love to you all,

  7. Tim and Ang,

    If I could add another element that's personally tough for me, and I hope people don't see this as inappropriate, is sexual intimacy. For me, having an EB child not only wears me out physically and emotionally, but has placed a guilt on me that is hard to explain. It's hard for me to enjoy the feel of soft skin or the intimacy of a sexual experience, knowing that Jonah may never know that. Maybe no one will ever tell him what soft, beautiful skin he has? Maybe girls will think he's ugly or gross? Maybe he'll never have a girlfriend, wife, sex or children? I don't know. Maybe it's too personal to be sharing, but I just think it's something I wouldn't have thought about until I was in the situation. It's a constant struggle for me (Matt, not so much (wink)).

    I think one huge thing is thinking about marriage in terms of Christ's covenant with his church. No matter how crappy we are as the body of Christ and how many times we screw up, Jesus will never ever ever leave us nor forsake his church. His covenant is binding.

    So when things get hard and the feelings of love fade (they come back but it's certainly ebb and flow) and the stress seems all consuming, Matt and I think of our marriage as a covenant. Christ will never divorce his church. We will never divorce each other. Maybe, marriage is less about love and more about covenant. I don't know. Just thoughts.

    I do love him, though. Just in case you were wondering. :)

  8. I know I don't know you guys very well, but one thing I see is in hard times you turn towards each other instead of away from each other.

  9. I had the same thought as the first poster, which is that I don't feel I know nearly as much about Ang or her point of view to draw conclusions about the relationship you two have. Based on what you've shared, it seems as though you make an effort to appreciate each other and not take each other for granted, and to have patience with each other. You also both seem like incredibly determined and motivated people, so just to have those personality traits combined with having made that pact to each other seems to go a long way.

    I don't know if my marriage could last through what you've been through, but I hope it could! You guys are amazing.


  10. Hi Tim! I think first and foremost, yours/Ang's relationship is centered around Christ- it's your foundation. I also think you two have a really good understanding of each other's strengths and weaknesses, and you can pick each other up when one is struggling.

    I echo the other posters - I wish we got to see more of Ang on here (any chance she'd do a guest post every now and then?) The few moments I got to meet her were enough to know that she's an amazing lady!

    Praying for God to continue to strengthen your marriage, and for peace and encouragement for your family.

    Love from TX!
    Laura (for Team A)

  11. I haven't commented on your blog in quite some time, but I've been following you along this journey for a while. I have to agree with some of the other people who have said that they have better insight into you than into Ang, seeing as how you are the author of the blog.

    I used to work in Child Life at a major children's hospital, working with families whose children had cancer. My boss worked with the parents and she would always tell them that it was important to thank each other every day for something they did that was not related to caring for their sick child. No "thank you for helping me with chemo or meds", but instead "thank you for letting me take a nap" "thank you for making dinner". She said that if you only saw the other person as a medical caretaker or let your child's illness define who you were as a married couple, you would have nothing left to hold onto when the illness was over.

    I think this is something you have done very well. One of the things that I have been touched by though is the way that you praise her or recognize the good in her even in the middle of a horribly difficult time. For example, even if you were having a terrible day during transplant, you would still take time in a post to thank your wife for something she did to support you or talk about what a great mom she was that day or praise her strength etc. I could imagine that it would be easy to fall into the routine of caring for a child and, like you said, seeing your spouse as just a medical caregiver. You take the time to thank her in a very public way for being your love, your friend and your partner.

  12. I think your relationship has had an awareness of choices and what I mean by that is you both seem to be aware that you do have choices of how to feel or how to think even if you are thinking or feeling another realize better or more positive choices can be found in any situation. I think your relationship is also interdependent...both of you help each other, and you both seem to be supportive of the other. The love/warmth and open honest communication just sums up the attitude of the relationship. Your relationship seems to have a great attitude and lots of creativity.

  13. I see Ang let you be you and you let Ang be Ang.

    And you also see yourselves as a team. Of equal power. Different strengths but equal power.

    My mother and father in law have survived the loss of my husband's youngest sister unexpectedly when she was 14. Their marriage is intact and doing well. It is never really easy to see though, into anyone's marriage, I mean. Some couples share lots and others are quite private.

    It does all take TWO, though. My dad didn't want the divorce that my mother did. Leaves two people a statistic that only one wanted. Who knows how some of those marriages would have turned out in time without the situation of a sick child.

    Maybe, just like in sports, sometimes tragedy can build character and other times tragedy can reveal character.

  14. Off the top of my head... I see that you both have great communication. When one is talking the other never disagrees and usually agrees and almost "knows" what the other will say. That shows that you must confide in each other FIRST. You also trust each other and seem to respect each other so much. And I see that you put in the effort that it takes that some maybe put aside and you take care of each other...

    See you next week!