Thursday, February 23, 2012


Noun:            1. The ability to do something that frightens one.
                      2. Strength in the face of pain or grief.

A few weeks ago Madison had an appointment with Hematology at Children’s to discuss options for treating her anemia, and while the appointment was a bit of a bust, one aspect of our morning there was very good.

As we sat in the small room doing Madison’s vitals she noticed a poster on the wall and was intently studying it, trying to figure out what it was about.  Before I even realized what was happening, the nurse asked her if she was a part of the “Beads of Courage” program and upon realizing that Madi wasn’t, she insisted we needed to get her “hooked up”.  We left the little room with what I think is going to be the start of something pretty awesome.

I had heard of the program, and thought it sounded neat, but didn’t fully grasp what it was about or, more importantly, the impact it might have on my children and I. 

It is sometimes the simplest of things that make me stop and think….really think.

Every bead tells a story of strength, honor and hope.

What is the Beads of Courage Program?

The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Telling the story…..tangibly!!  This, in and of itself, is an amazing concept, no matter the age of the child.  We talk about “owning” what our lives are around here all the time, as in that the kids have to own their treatment plans for them to work….they have to “buy in” if its going to have a chance to be successful….and while this was easier in some ways when they were little and much less involved, it is at the same time easier now that they can play such an active role.  This concept extends to all areas of our lives, but the truth is, “owning” something is easier when there is something tangible to attach it to.  So this part of the concept of Beads of Courage (BOC) feels really good to me.

The bigger revelation though, for me, was the idea of honoring, piece by piece, the kids strength, honor and hope.  RECOGNIZING all the things they do and get through, and not taking for granted that they will, or just should.

I am SO guilty of this….

After hundreds of blood draws, I expect them to just deal….It’s “just” a blood draw after all.  After so many doctor appointments, I expect them to handle what’s being talked about (with as much forewarning as I can give them) and “keep it together”.  After so many times being put under, going through a procedure, having their g-tube changed, etc., I just expect them to get through it unscathed. 

I realize that, in part, this is how I cope with putting them through it all.  Allowing myself to recognize how these things truly could affect them was too heart breaking and other than telling them I am proud of all they get through, there isn’t much more I can offer.  When they were little I could “reward” them for getting through some of these things, and in those early days, a Beanie Baby from the hospital gift shop was the ticket.  As they got older and endured even more, the “little” things like getting through an appointment with good behavior was no longer something I acknowledged, just expected. It needed to be something more, like a blood draw or anesthesia for them to be tangibly rewarded.  At some point, even those things were so commonplace that they were no longer considered significant, and besides, as the kids got older, the things that once gave them a goal to work towards (getting something), no longer held much worth to them either.  Oh sure, the promise of cash helped some, but the reality is/was, rewarding them had lost its charm and really wasn’t needed anymore.  They were giving their best just because, and I have grown to expect that.

I love that the idea behind this program is not to “reward” them doing something the way we want them to, but to ACKNOWLEDGE that they got through something….that they were courageous in facing their challenges that day, that they are strong each and every time they are enduring these things, and that we HONOR that courage and quit taking it for granted.

For me, it goes even further in allowing me to RECOGNIZE that courage. That its tangible, something we can put our hands on and see, that those in their care can SEE their story, and that they have the chance to tell their story fully, well….I think it has amazing potential.

The simple concept behind this program has changed me.

It has made me realize that I wish I could go back on some things and handle them differently….and not in a guilt inducing way, but rather, in a way that instills in me the desire to remember and make different choices next time.

I wish I could go back and deal with Madison giving herself a shot weekly differently.  It HAD to happen, and while it broke my heart to see her scared and upset about it, especially after handling it for so long without a peep, I wish I had stopped and acknowledged more how courageous she was to get through it each and every time.  I won’t ever take her composure for granted again, and I will acknowledge her bravery in the face of something like this.

I wish I could go back and handle Abby’s emotions in the midst of doctors appointments differently.  The good news is, I did this last week when we had a GI appointment.  Instead of asking her to “keep it together” till after the appointment and then we could discuss it, I shared with her that we all want her to express how she is feeling about potential treatments and that her emotions are legitimate, but the calmer she could be while talking to the doctor, the more her feelings could be expressed and considered.  She was AMAZING in that appointment…her precious voice cracked as she started talking, but she took a deep breath and finished strong, and the doctor listened!!  She will always be the one wearing her emotions on her sleeve, but she will also be an incredible advocate for herself when this is all said and done.

I don’t want to hang on to the things they have to get through daily, but I DO want to meaningfully acknowledge their courage in the face of the exceptional life we lead, and I think we have found a way to do that with this program…..and I am grateful!!!

A little more about the program….while it started as an oncology program, it has now grown to include several different diseases, as well as most recently, Chronic Disease, which is where we fall for the purposes of the program.  And while it is hosted by only a couple of handfuls of hospitals in the country, they have created a “Distance program” for those that are not affiliated with, or don’t fall under the auspices of their program locally.  While all of the hospitals we have affiliations with are involved, we haven’t had the chance to be included just because we didn’t quite fall into their criteria, so the distance program is ideal.

Finally, YOU have a chance to be involved…..

If you’re a family dealing with illness, I encourage you to look into the program.  I am seeing the impact it’s having on my “big” kids, and have seen others with smaller children that really get something out of this also.  Even if you choose not to participate, I hope sharing my story will help others take the time to acknowledge ALL these kids face daily, and not take their amazing courage for granted.

If you’re an artist, there is a role for you also, making beads for these amazing children.  There is more information at the website if your interested in participating in this way.

If you would just like to contribute monetarily to the program, that option exists also.

And finally, even if all you do is share this with a few people, there are families out there that could be so incredibly blessed to know the program exists.

Thanks for letting me share my excitement over this perspective changing program!!!

I promise an update soon.  Things are busy and kind of crazy here, as usual.  As I prepare for us to see our local Epileptologist we haven’t seen for a year, I suspect what all has changed will become even clearer to me, and this may not be pretty.  We are okay though….getting through each day and living by the mantra of taking things one day at a time and making it the best it can be.
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