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The Courage to Become

 

The Courage to Become | Ginger King Birnbaum

The Courage to Become | Ginger King Birnbaum

This is going to sound ridiculously oversimplified, but I just want to make things better.  There is a childlike wonder in that-it comes off in an idyllic sense.  But there really is no other way to put it.  I have, and have always had, an inner drive to make things better.

I have always been drawn to the greater good.  In fact, the thing that scares me the most is that I would leave this Earth without making a difference.  Some people have a bucket list full of grand adventures, but mine is mostly full of making a difference and leading others to do the same.

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When my second child, King, was born we found out that he would be living with cystic fibrosis, a chronic progressive disease that can lead to respiratory failure.  You can only imagine that for a person who just wants to make things better it was deeply devastating, at first.

Even with my first child, Emma Virginia, who was born perfectly healthy, I had fallen into a deep postpartum depression.  Just in case you need a visual: me, a glider, a large box of graham crackers, and one very nervous husband + a (beautiful, precious, amazing;) crying baby.  My husband attempted to remove the box of graham crackers (perhaps to motivate me to leave the room!) and I cried, “please don’t take them-they’re all that I have.”  We laugh about it now, but it was clear that I needed some real help to overcome my depression!

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Fast forward 3 years, and I was very worried that I would wind up in the same place.  It was like I had to stare myself down to move past the sadness of my child’s diagnosis.

I remember clearly finding a shift in my lens that clarified it all, and I do mean all.  None of us knows what the next minute or day or year holds. My biggest fear was that I was going to lose my child, and I just couldn’t see past that.  I came to realize that death is inevitable, after all.  None of us will escape it, none of us will capture it, and we certainly won’t be invited to design it. If we live in an absolute, obsessive cycle of trying to control everything then we won’t be present for all the parts that constitute a life. 

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I will always be grateful that I was presented with the opportunity to understand that so early in life.  The lesson came with plenty of heartbreak, but it also forced me to live my life in color. I also think, I hope, that it made me a better mother to both of my children.

Now, I already told you that I thrive on making things better. 

Cystic Fibrosis is a disease that lives and breathes and changes at the knee of modern medicine. Drugs have been made available that change the disease at the cellular level!  Over 50% of people living with CF are over the age of 18.  That’s like out.of.this.world amazing!  As I learned more about the advances in research the gloves came off, and I went to work.  While I was fearful for my child, I also felt incredibly lucky that our family was being given this tremendous opportunity to plug into the Cystic Fibrosis Foundation community and make a difference.

Fundraising, advocating, event planning, hiking, walking, leading, sharing, crying, laughing, meeting, connecting…if you are picturing a roller coaster then you’ve read correctly!  That’s what our family does to make a long-term difference…for all people living with CF.

Pills, feeding tubes, medications, machines, calories, crying, laughing, planning, hospitalizations, surgeries, doctor visits, researching…our own personal roller coaster.  That’s what our family does to sustain King’s health.

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For the longest time sustaining King’s health was the cycle that moved me day in and day out. It became my reality.  I knew that if I kept him well, and worked furiously toward a cure at the same time, a positive parallel might well emerge.  The fear and sadness that I experienced upon his diagnosis was becoming more of a distant memory.

What I was not prepared for was the threat of our access to affordable and adequate health care being terminated.  Our family benefits from the Affordable Care Act since we purchase our insurance on the exchange.  Through the ACA we pay a whopping $40,000 a year, unsubsidized.  A deal it is not, but to go without insurance as a whole would be financially devastating and would be a roadblock to sustaining King’s health.

The more that I learned about the ACA and the health care industry in general, the more I committed myself to ensuring that all Americans have access to affordable and adequate health care.  It is unconscionable to me that anyone would consider pulling at the very fabric of someone else’s life. 

There is no federal budget important enough to send families into bankruptcy for purchasing life-saving medications.  There is no federal budget important enough to cause a child to go without their parent because their family couldn’t afford chemotherapy.  There is no federal budget important enough to cause those with a disability to go without benefits.

And so I set out to tell anyone and everyone that would listen about the importance of health care.  Some lawmakers did not want to listen to me.  Some friends misunderstood me. 

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Here’s the good news: Many friends understood me.  Many others spoke out.  Many lawmakers do listen. 

Humanity is too important, too precious to ignore.  As the mother of a child with a chronic illness it is my duty to shine a light on this issue.  I won’t be enough though, and I know that. 

Once again, faced with the potential darkness at the end of the road, I’ve learned a really important lesson.  The more I try to shine my light, the more I come to love and appreciate those around me.

I take comfort in knowing that I have traversed some scary valleys before and come out on the other side to a life lived in full color.  A smart woman taught me that lesson once.

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Guys, I know you want to know more...because I did!! So I asked Ginger a few extra questions. Here's what she had to say. 

What job did you have before advocacy?

So you know this isn't really a job for me, right?  Nothing I do gets me paid.  I'm 100% volunteer advocate, event planner, and fundraiser.  You could say that I am a professional volunteer:)  I think I will go back to work eventually, but the conundrum of child care + work has not made sense yet.

The Cystic Fibrosis Foundation is not the only group I volunteer with.  After Emma Virginia was born, I knew that I wanted to spend my time giving back to my community and connecting with my community.  I had to give some of that "work" up once King was diagnosed and I knew I needed to focus mostly on CF.

Currently, I have leadership roles and do volunteer work with the Center for Mindful Living, Junior League of Chattanooga, Lookout Mountain School (PTA President this year because girrrrrl clearly I don't have enough going on:), and local and national roles with the Cystic Fibrosis Foundation.

CFF roles-Other than Advocacy, I am the local Board President, Chair of Three Blind Wines (local fundraiser), Founder of Kenneth King's Believers National Family Team, National Family Team Program Co-Chair, Great Strides Leadership Council Chair, and I just Co-Chaired the National Volunteer Leadership Conference (which was AWEsome!).

I really started focusing a lot on Advocacy because I had no choice + I enjoy it.  For several years, I have joined a large group of CF Advocates for the CFF sponsored March on the Hill where we share our stories with Congress and Senate.  With the repeal of the ACA I knew that I needed to be more involved year-round.  Literally, if these bills go through I don't know what we will do for King.

What does a normal day look like?

A normal day in our house is anything but!  King requires hours of respiratory therapy which include 3 inhaled medications and a vest that shakes him to get the mucus to loosen in his lungs.  He also has to be hooked up to a feeding tube every night.  It has become our normal, but it certainly colors the way that we go about our day.  This year he and Emma Virginia are both at Lookout Mountain School in Kindergarten and third grade.  It has definitely changed the flow of schedule with them being out of the house for so many hours.  I have been spending a lot of time at the school since I am PTA President this year-it's been tons of fun!  Some people say that they will never do things like that, but I always knew that I would want to give of my time in that capacity.  It's so special to be a part of the school community.

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And how did you get through PPD? 

By the grace of God, a supportive family, the right medication, meditation and yoga, and sometimes I'm not sure that it really is over.  I literally had to learn to breathe again after King was diagnosed.  That sounds crazy, but it is 100% true.  That is one of the main reasons that I agreed to join the Board at the Center for Mindful Living.  It saved me in a lot of ways.  Pausing sounds like it is such a simple thing to do, but it is not.  I think the whole world could benefit from pausing and breathing and just slowing down in general.  I go 90 miles a minute, but I also try hard to listen to my body and mind.

 


Oh my gosh. Isn't Ginger a force?!!!!!!!!!!!!!! You can contribute to Cystic Fibrosis or learn more here and you can jump on the support train for Kenneth, Ginger's son here on Facebook. 


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