Tag Archives: Inspiration

Spreading the Hope of Youth Rally!

Remember your teenage years? Wanting the right hair and clothes, having a crush on that special someone – who didn’t know you existed? Recall feeling awkward and out of place…all alone? Remember trying to fit in? Now imagine that you had a chronic illness that required surgery to save your life. What if on top of all the “normal” adolescent issues, you used the bathroom through a pouch on your side, because your diseased intes­tine had to be removed. How’d you like to miss your birthday party, the big game, even prom, because you were in the hospital- AGAIN! Sounds like a bad dream, doesn’t it?

For thousands of teens across the nation, THIS IS REALITY.

A reality that I was all too familiar with. Diagnosed with Crohn’s disease at age 9, I spent much of my childhood in the hospital. When I was 15, I had my diseased large intestine removed, leaving me with a condition called an ileostomy. The ileostomy is a surgically created opening in the abdomen through which doctors bring a portion of the small intestine. I now wear a prosthetic (called a pouch) on my abdomen that my waste is collected in. There are other types of ostomies,too, depending upon the type of bowel or bladder diversion the person is in need of.

When I was 17, I attended my first Youth Rally. It was there that I met young people from all over the country who shared my very same experiences. For the first time, I didn’t feel alone, and the support and camaraderie I received through Youth Rally shaped my life’s work.

I’ve gone on to be a Rally counselor over 12 times, helped to start a support network for young adults with ostomies and diversions, and have  led the ostomy community in the U.S as the president of United Ostomy Associations of America. I now work for an amazing company that makes undergarments for people that have had ostomy surgery, helping them regain their confidence and active lifestyle.

My passion is to let others know that no matter the trauma a person has been through, there is always a purpose for the suffering, and a light at the end of the darkness. I want others to recognize that they too can rise from the ashes of disease and live life to it’s fullest, something I have been doing since 1993 when I first attended Youth Rally as a camper. Rally taught me that I was not alone, and that is what made all the difference.

By returning to Youth Rally as a counselor, I have the opportunity to use my experiences (with Crohn’s Disease and 14 subsequent surgeries and as a leader in the ostomy community) to bring a message of hope to other young ostomates who may not see the light at the end of the tunnel.

Would you consider making a donation to help me share the hope of Youth Rally with teens from across the country?

Thank you in advance for your support!

*** To make a donation, you can click on the Sponsor Me link on the right side of this page, or navigate to my Youth Rally Fundraising page ***

For more information about Youth Rally, see their website located here

Me & former camper turned CIT counselor Kristen K. Two KK's = twice the shenanigans!

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When a Curse Becomes a Blessing

A couple weeks ago, I was asked if I would consider being the editor for the newsletter published by our women’s ministry at church. It was a no-brainer to say yes. I enjoy writing, I’m a stickler about grammar and spelling, and I’m pretty computer proficient. Sounds like a good fit right?

Then, once I’d committed, Kristen – the director of the women’s ministry said, “One of the things I’d like to implement is an article in each newsletter that highlights one of the ladies in our church. We all see each other, week in and week out, but never really get to know things about each other that are below the surface. Since you’re putting together the newsletter, why don’t you be the first woman we feature? “.  How could I say no? So I agreed. Simple enough.

Except that I hate writing that kind of thing. Or maybe it’s not that I hate it, but really that I don’t want to sound boastful when writing about my successes and accomplishments. I don’t think I’m one to toot my own horn, and I struggle to share about all I’ve been through in my short 35 years because the glory is all God’s. When I share with anyone about where my life has come from, how it’s been changed, and why I hold the hope that I do, I never want people to think that it’s at all because I think I’m such a strong, talented person. Truth is my past (and even some moments in the present) is littered with hardships that without the love and grace of Jesus Christ, I never would have overcome.

I’ve been incredibly blessed that He’s taken what at the time seemed to be a curse, and turned it around into the greatest blessing imaginable. From my sickness and suffering, I’ve been able to find my ultimate purpose.

 

Anyway – many people have asked if I ever finished the article. I did – and here it is in it’s entirety. Maybe I’ll write my memoir one day afterall…

 

Remember your teenage years? Wanting the right hair and clothes, having a crush on that special someone – who didn’t know you existed? Recall feeling awkward and out of place…all alone? Remember trying to fit in? Now imagine that you had a chronic illness that required surgery to save your life. What if on top of all the “normal” adolescent issues, you used the bathroom through a pouch on your side, because your diseased intes­tine had to be removed. How’d you like to miss your birthday party, the big game, even prom, because you were in the hospital- AGAIN! Sounds like a bad dream, doesn’t it?

Unfortunately for Kristin Knipp, this was a reality. Diagnosed with Crohn’s disease at age 9, Kristin spent much of her childhood in the hospital. When she was 15, she had her diseased large intestine removed, leaving her with a condition called an ostomy. The ostomy is a surgically created opening in the abdomen through which doctors bring a portion of the bowel and the person then wears  a prosthetic ( called a pouch) that waste is collected in.

“My teenage years were trying, for sure. There’s a certain stigma attached to going to the bathroom ‘differently’, and when you’re a young person, that stigma seems magnified. It’s very isolating”, says Kristin. “For many years I asked ‘why me?’. I didn’t know Jesus back then, so no real answer ever came. In fact, the lack of answers, coupled with recurrent surgeries and medical trials, led to one very bitter young lady. I was mad- mad at my body, mad at my circumstances, and mad at God for allowing it. It wasn’t until I was 17 that things slowly began to fall into place.”

At 17, Kristin attended a summer camp for teens that had ostomies and other bowel and bladder diversions. For the first time, she met other kids that had experienced illness, surgery, and the same struggles she’d been facing. Finally, she didn’t feel alone. This camp, called Youth Rally, was ultimately the vehicle through which Kristin was introduced to Jesus.

“My second year as a camper, I met a young man who was also a Crohn’s patient and an ostomate. We were drawn to each other – initially because of teenage hormones and young love, but after camp ended and we returned to our respective homes, we maintained our friendship and I began to realize that we had a special relationship. Every time we talked, he offered me hope regarding whatever circumstances I was facing, and assured me after every conversation we had that he was praying for me. It wasn’t long before I realized that the thing that drew me to him most was his relationship with the Lord. In 1997, I visited him and his family in Tennesse, and it was there that I attended my first ever church service, and gave my heart to Jesus.”

It didn’t take long after welcoming Jesus into her life for Kristin to recognize how God had placed His hand on her  long before that moment, and had been weaving a tapestry that on the under side appeared messy and disheveled. But now that she could see it clearly, through spiritual eyes from God’s perspective, she began to see the answer to her “why me?” questions.

Kristin has returned to Youth Rally for the past 12 years to volunteer as a counselor and offer hope to teens facing life with an ostomy.  Volunteering with Youth Rally brought to Kristin’s attention the lack of support and resources for young people living with ostomy surgery, especially young adults, and in 2005 she founded YODAA (Young Ostomate & Diversion Alliance of America) a national network for young adults living with ostomy or diversionary surgery. Eventually the organization joined the United Ostomy Associations of America(UOAA) as an affiliated support group, and YODAA is still growing strong today.

In 2006, serving while serving UOAA as National Conference Planning Chair, Kristin was approached by the organization’s president about running for a national board of directors position. Kristin knew that it was something she was called to do.

“My life had come full circle”, she says. “At 15, receiving an ostomy had felt like a life sentence. Now, I was in a position to share my experience with an ostomy with others and let them know that it is indeed a LIFE sentence. Life is the key word. An ostomy gave me back my life, and this was my opportunity to use my experiences to change the course for others facing the same road. This was a significant answer to my WHY from so many years ago.”

 

Kristin threw her hat in the ring for the election, and was installed as the President-elect of UOAA in 2007. She served in that capacity for 3 years, and in January 2010, began her term as President of the organization.

“ While serving UOAA as president, I had the opportunity to travel the United States and abroad and use my God-given talents to work to improve the lives of ostomates around the world.  I’ve lobbied on Capitol Hill for legislation important to those living with an ostomy, I’ve been to Mexico and seen the plight of ostomates in foreign countries who have little or no access to specialized care and ostomy supplies. I’ve been honored to serve on a selection committee that extends scholarships and awards to people who’ve made a ‘great comeback’ from ostomy surgery, and have been blessed to be a spokesperson for several campaigns aimed at eliminating the stigma that is attached to ostomy surgery. God has granted me the influence to affect change and the responsibility to help others along their journey”.

Kristin now works for a company that makes specialized undergarments for people that have had ostomy surgery, and feels incredibly lucky to be able to combine her vocation with her avocation.

“Every day, I have the opportunity to minister to someone who’s in need of a little hope. It’s not traditional ministry – I don’t work at a church and I don’t have a title, but I have the love and grace of Jesus Christ in my heart, and I’m able to share it every day in the form of knowledge and encouragement to help others along their journey. My WHY has been answered, and no longer is Crohn’s disease or an ostomy a curse. It’s been my biggest blessing.”

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems

“Every Christmas you always hear people saying what they want and what they bought. Well this is what I want. I want people who are sick with no cure to be able to be cured. I want children with no families to be adopted. I want people to never have to worry about food and shelter & heat.”

 

This is a status update making its rounds through Facebook land. And yes, it’s a wonderful message and wouldn’t it be great if all these things could come to pass. We read it, think “Yes, I want that too”, re-post, and then go about our merry way.

 

So here’s my challenge:

 

If you want sick people with no cure to be able to be cured – did YOU donate any money to research this year? There are countless non-profit organizations and research institutes  that are doing amazing work to find cures for what ails us. Pick the one that’s closest to your heart and send them a check.

 

If you want children with no families to be adopted – are YOU willing to bring an orphaned child into your home, care for it and support it like it was your own? Call the Dept of Family Services or a private adoption organization and see how you can help.

 

If you want people to never have to worry about food, shelter and heat – are YOU willing to donate, time or money, to an organization that can help individuals and families  through this type of a crisis?



 

It’s one thing to make a charitable Facebook post – it’s quite another thing to live it out, isn’t it?

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. -Mahatma Gandhi

Writing Love on My Arm…

Today I wore my heart on my sleeve. Well, my arm really. At 8am this morning I wrote LOVE on my arm in red lipstick and left my forearm exposed for all to see.

Why, you ask? For Dave.

I met Dave in 2006 at a conference I planned. Like the rest of us in attendance, Dave had medical challenges that he dealt with everyday. This was the first time Dave had the opportunity to interact with others living with similar conditions, and when I met him for the first time in the hotel elevator, he was full of life, thanking me for putting the conference together. Because I was busy with event management “stuff”, I didn’t get the chance to know Dave as well as many of the other attendees, but everytime I saw him through out the week he had a 100 watt smile on his face and a twinkle in his eye.

I would have never guessed that inside, Dave was broken and hurting and had even previously tried to take his own life. Dave and I talked by email a few times after the conference and I tried to keep tabs on him through other friends that had gotten to know him well and had kept in touch following the conference. Then this past June, I awoke to an email the hit me like a freight train. Dave had finally succeeded in ending his own pain.

So today, through the prompting of an event called Love is the Movement, and inspired by an organization called To Write Love on Her Arm, I wrote LOVE on my arm in honor and support of Dave and all of my other friends from throughout the years that have struggled with depression, self-injury, addiction and suicidal thoughts.

Dave, I miss you even now. You left a mark on my heart and a smile in my memory and inspired me to write love on my arm.

For more on Love is the Movement : http://www.facebook.com/event.php?eid=7693997482

For more about To Write Love on Her Arm: http://www.twloha.com/the_story.php

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Tears and inspiration from a survivor and friend

I’m exhausted. I returned from Chicago today after wrapping up the UOAA Strategic Planning meeting. More about that later. But I wanted to share an email that was shared with me this weekend that absolutely touched my soul.

Those of you that know me well know of my admiration for Tony Snow, former White House press secretary. I had the pleasure of meeting Tony in February 2007 (you can read about it HERE). Tony is a colon cancer survivor, former IBD patient and an honorary Great Comebacks award winner. His cancer returned this past year just weeks after I met him at the Great Comebacks awards ceremony. I’ve not only followed Tony’s journey with cancer because of the IBD and ostomy connection, but also because of his strong faith and the spiritual journey his disease has taken him on.

At the meeting this weekend, a fellow board member and past Great Comebacks award winner shared with me an email from Rolf Beinerschke, former San Diego Charger kicker and founder of the Great Comebacks program.

Tony Snow may be losing his battle with cancer, but the grace and humility he has shown in his journey, and the lives of those he touches along the way will leave a legacy that reaches far beyond the grip of death.

Dear Great Comebacks family,

Earlier this year we had the privilege of meeting Tony Snow and his family at the National Great Comebacks Award celebration in Washington DC when we presented him with the 2007 Honorary Great Comebacks Award for overcoming the challenges he faced as a result of colon cancer. As we’re sure you will all agree, it was a very powerful evening. Ironically, however, ten days following the celebration Tony learned that the cancer had returned and he again had to endure the difficult chemotherapy treatments. Rolf just received a copy of Tony’s testimony and asked me to send it to all of you who had the opportunity to meet him. It is tremendously articulate and well written and a powerful reminder for all of us of what is really important. Please keep Tony and his family in your thoughts and prayers.

Warm regards,

Barb on behalf of Rolf

 

This is an outstanding testimony from Tony Snow, President Bush’s Press Secretary, and his fight with cancer. Commentator and broadcaster Tony Snow announced that he had colon cancer in 2005. Following surgery and chemo-therapy, Snow joined the Bush Administration in April 2006 as press secretary.

Unfortunately, on March 23, 2007 , Snow, 51, a husband and father of three, announced the cancer had recurred, with tumors found in his abdomen,- leading to surgery in April, followed by more chemotherapy. Snow went back to work in the White House Briefing Room on May 30, but has resigned since, “for economic reasons,” and to pursue ” other interests.”

It needs little intro… it speaks for itself.

———————————————————————

“Blessings arrive in unexpected packages, – in my case, cancer. Those of us with potentially fatal diseases – and there are millions in America today – find ourselves in the odd position of coping with our mortality while trying to fathom God’s will. Although it would be the height of presumption to declare with confidence “What It All Means,” Scripture provides powerful hints and consolations.

The first is that we shouldn’t spend too much time trying to answer the “why” questions: Why me? Why must people suffer? Why can’t someone else get sick? We can’t answer such things, and the questions themselves often are designed more to express our anguish than to solicit an answer.

I don’t know why I have cancer, and I don’t much care. It is what it is, a plain and indisputable fact. Yet even while staring into a mirror darkly, great and stunning truths begin to take shape. Our maladies define a central feature of our existence: We are fallen. We are imperfect. Our bodies give out.

But despite this, – or because of it, – God offers the possibility of salvation and grace. We don’t know how the narrative of our lives will end, but we get to choose how to use the interval between now and the moment we meet our Creator face-to-face.

Second, we need to get past the anxiety. The mere thought of dying can send adrenaline flooding through your system. A dizzy, unfocused panic seizes you. Your heart thumps; your head swims. You think of nothingness and swoon. You fear partings; you worry about the impact on family and friends. You fidget and get nowhere.

To regain footing, remember that we were born not into death, but into life,- and that the journey continues after we have finished our days on this earth. We accept this on faith, but that faith is nourished by a conviction that stirs even within many non believing hearts – an intuition that the gift of life, once given, cannot be taken away. Those who have been stricken enjoy the special privilege of being able to fight with their might, main, and faith to live fully, richly, exuberantly – no matter how their days may be numbered.

Third, we can open our eyes and hearts. God relishes surprise. We want lives of simple, predictable ease,- smooth, even trails as far as the eye can see, – but God likes to go off-road. He provokes us with twists and turns. He places us in predicaments that seem to defy our endurance; and comprehension – and yet don’t. By His love and grace, we persevere. The challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise.

‘You Have Been Called’. Picture yourself in a hospital bed. The fog of anesthesia has begun to wear away. A doctor stands at your feet, a loved one holds your hand at the side. “It’s cancer,” the healer announces.

The natural reaction is to turn to God and ask him to serve as a cosmic Santa. “Dear God, make it all go away. Make everything simpler.” But another voice whispers: “You have been called.” Your quandary has drawn you closer to God, closer to those you love, closer to the issues that matter,- and has dragged into insignificance the banal concerns that occupy our “normal time.”

There’s another kind of response, although usually short-lived an inexplicable shudder of excitement, as if a clarifying moment of calamity has swept away everything trivial and tiny, and placed before us the challenge of important questions.

The moment you enter the Valley of the Shadow of Death, things change. You discover that Christianity is not something doughy, passive, pious, and soft. Faith may be the substance of things hoped for, the evidence of things not seen. But it also draws you into a world shorn of fearful caution. The life of belief teems with thrills, boldness, danger, shocks, reversals, triumphs, and epiphanies. Think of Paul, traipsing through the known world and contemplating trips to what must have seemed the antipodes ( Spain ), shaking the dust from his sandals, worrying not about the morrow, but only about the moment.

There’s nothing wilder than a life of humble virtue, – for it is through selflessness and service that God wrings from our bodies and spirits the most we ever could give, the most we ever could offer, and the most we ever could do.

Finally, we can let love change everything. When Jesus was faced with the prospect of crucifixion, he grieved not for himself, but for us. He cried for Jerusalem before entering the holy city. From the Cross, he took on the cumulative burden of human sin and weakness, and begged for forgiveness on our behalf.

We get repeated chances to learn that life is not about us, that we acquire purpose and satisfaction by sharing in God’s love for others. Sickness gets us part way there. It reminds us of our limitations and dependence. But it also gives us a chance to serve the healthy. A minister friend of mine observes that people suffering grave afflictions often acquire the faith of two people, while loved ones accept the burden of two peoples’ worries and fears.

‘Learning How to Live’. Most of us have watched friends as they drifted toward God’s arms, not with resignation, but with peace and hope. In so doing, they have taught us not how to die, but how to live. They have emulated Christ by transmitting the power and authority of love.

I sat by my best friend’s bedside a few years ago as a wasting cancer took him away. He kept at his table a worn Bible and a 1928 edition of the Book of Common Prayer. A shattering grief disabled his family, many of his old friends, and at least one priest. Here was an humble and very good guy, someone who apologized when he winced with pain because he thought it made his guest uncomfortable. He retained his equanimity and good humor literally until his last conscious moment. “I’m going to try to beat [this cancer],” he told me several months before he died. “But if I don’t, I’ll see you on the other side.”

His gift was to remind everyone around him that even though God doesn’t promise us tomorrow, he does promise us eternity, – filled with life and love we cannot comprehend, – and that one can in the throes of sickness point the rest of us toward timeless truths that will help us weather future storms.

Through such trials, God bids us to choose: Do we believe, or do we not? Will we be bold enough to love, daring enough to serve, humble enough to submit, and strong enough to acknowledge our limitations? Can we surrender our concern in things that don’t matter so that we might devote our remaining days to things that do?

When our faith flags, he throws reminders in our way. Think of the prayer warriors in our midst. They change things, and those of us who have been on the receiving end of their petitions and intercessions know it. It is hard to describe, but there are times when suddenly the hairs on the back of your neck stand up, and you feel a surge of the Spirit. Somehow you just know: Others have chosen, when talking to the Author of all creation, to lift us up, – to speak of us!

This is love of a very special order. But so is the ability to sit back and appreciate the wonder of every created thing. The mere thought of death somehow makes every blessing vivid, every happiness more luminous and intense. We may not know how our contest with sickness will end, but we have felt the ineluctable touch of God.

What is man that Thou art mindful of him? We don’t know much, but we know this: No matter where we are, no matter what we do, no matter how bleak or frightening our prospects, each and every one of us who believe, each and every day, lies in the same safe and impregnable place, in the hollow of God’s hand.” T. Snow

My Symphony


I love how God know’s exactly when you need some encouragement!

A good friend just sent these words to me…and I immediately received them in my spirit. Just what I needed for this moment!

“To live content with small means; to seek elegance rather than luxury; and refinement rather than fashion; to be worthy, not respectable; and wealthy, not rich; to study hard, think quietly, talk gently, act frankly; to listen to stars and birds, to babes and sages, with open heart; to bear all cheerfully, do all bravely, await occasion, hurry never; in a word, to let the spiritual, unbidden and unconscious grow up through the common. This is to be my symphony.”William Ellery Channing

I love it!

Not just for graduates..


Below is a commencement speech given by Jim Wallis of Sojourners at Georgetown University.

Very timely…and certainly thoughts for all of us to meditate on…

Each new generation has a chance to alter two very basic definitions of reality in our world – what is acceptable and what is possible.

First, what is acceptable?

There are always great inhumanities that we inflict upon one another in this world, great injustices that cry out to God for redress, and great gaps in our moral recognition of them. When the really big offenses are finally corrected, finally changed, it is always and only because something has happened to change our perception of the moral issues at stake. The moral contradiction we have long lived with is no longer acceptable to us. What we accepted, or ignored, or denied, finally gets our attention and we decide that we just cannot, and will not, live with it any longer. But until that happens, the injustice and misery continue.

It often takes a new generation to make that decision – that something that people have long tolerated just won’t be tolerated any more.

So the question to you as graduates, as ambassadors for a new generation, is this: what are you going to no longer accept in our world, what will you refuse to tolerate now that you will be making the decisions that matter?

Will it be acceptable to you that 3 billion people in our world today – half of God’s children – live on less that $2 per day, that more than 1 billion live on less than $1 per day, that the gap between the life expectancy in the rich places and the poor places in the world is now 40 years, and that 30,000 children globally will die today – on the day of your graduation – from needless, senseless, and utterly preventable poverty and disease? It’s what Bono calls “stupid poverty.”

Many people don’t really know that, or sort of do but have never really focused on the reality or given it a second thought. And that’s the way it usually is. We don’t know, or we have the easy explanations about why poverty or some other calamity exists and why it can’t really be changed – all of which makes us feel better about ourselves – or we are just more concerned with lots of other things. We really don’t have to care. So we tolerate it and keep looking the other way.

But then something changes. Something gets our attention, something goes deeper than it has before and hooks us in the places we call the heart, the soul, the spirit. And once we’ve crossed over into really seeing, hearing, touching, smelling, and tasting the injustice we can never really look back again. It is now unacceptable to us.

What we see now offends us, offends our understanding of the sanctity and dignity of life, offends our notions of fairness and justice, offends our most basic values; violates our idea of the common good, and starts to tug at our deepest places. We cross the line of unacceptability. We become intolerant of the injustice.

But just changing our notion of what is unacceptable isn’t enough, however. We must also change our perception of what is possible.

In that regard, I would encourage each of you to think about your vocation more than just your career. And there is a difference. From the outside, those two tracks may look very much alike, but asking the vocational question rather than just considering the career options will take you much deeper. The key is to ask why you might take one path instead of another – the real reasons you would do something, more than just because you can. The key is to ask who you really are and what you want to become. It is to ask what you believe you are supposed to do.

You do have great potential, but that potential will be most fulfilled if you follow the leanings of conscience and the language of the heart more than just the dictates of the market, whether economic or political. They want smart people like you to just manage the systems of the world. But rather than managing or merely fitting into systems, ask how you can change them. You’re both smart enough and talented enough to do that. That’s your greatest potential.

Ask where your gifts intersect with the groaning needs of the world – there is your vocation.

The antidote to cynicism is not optimism but action. And action is finally born out of hope. Try to remember that. At college, you often believe you can think your way into a new way of living, but that’s actually not the way it works. Out in the world, it’s more likely that you will live your way into a new way of thinking.

The key is to believe that the world can be changed, because it is only that belief that ever changes the world. And if not us, who will believe? If not you, who?