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

Heaveno!

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 www.puckfund.org 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.)


Thanks!


Despite ALL the circumstances, we remain blessed.

God night.