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On Being Authentic

“Hi, I’m Barb. I’ve been married 45 years to Bob. We have 4 kids, one of them’s a doctor, and 7 grandkids. The youngest one is starting 1st grade this year.”

“I’m Sarah. I’ve been married 25 years to Mark. We have 2 kids. The youngest one started college this year, and we’re so excited!”

And so it went around the room. All 18 women, in their 50’s to their 80’s, introduced themselves in this same manner. I was stunned. I now know about their husbands, including some of their names and professions, their kids, and their grandkids, along with various details about names, ages, accomplishments and milestones. What I don’t know is anything about any of these women. I don’t know if they’ve had careers, hobbies, or accomplishments. I don’t know what they like or what they don’t like. I know nothing about them as human beings, except that they are wives and mothers.

As I sat and listened I realize this is not a phenomenon unique to this group of women. I think these roles are so overwhelming and all encompassing that it’s natural, at least to a certain extent. However, I don’t want to be that. I don’t want my friends to be that. In the topical discussion that followed the introductions, I learned little things here and there about some of the other women,  including two of them that have careers. I only learned that because they had to leave as soon as the meeting was done to go to work. What??? Why did you not say that before? What do you do? Are you a doctor? Do you sell Avon? Are you writing the next great American novel? Why do I not know this???

What if we all decided to draw a line in the sand? To stand up and say, “As of today, I’m me. I have accomplishments and dreams. They include a marriage [or not, as the case may be], and great kids and grandkids, but they also include…” Do you think we might have less loneliness? Do you think we might have less depression? Do you think the church might start looking more like The Church? I do. If I knew how, I’d start a campaign. A campaign to help people see themselves as more than their relationships, more than the accomplishments of their family. A campaign to help people reclaim their own identity and accomplishments.

What do you think? Are you brave enough to stick your neck out and introduce yourself as you really are? As who you really are? I think it’s time you try.


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What the Chronically Ill Really Need from You

As a person with a chronic illness, daily life can be a lot to handle. One of the more difficult things, in all honesty, is well-meaning people. I know it’s hard for you to know what to say or do: really I do. To help us both out, here are a few examples from my life just this week.

Problematic response to finding out I’m ill #1: “I know just how you feel! I lifted something wrong and had a backache for almost two weeks! It was awful!” You had pain for two weeks, I’ve had pain for almost 30 years. That’s not the same thing, and no, you don’t know what it’s like. Comparing your temporary condition with my lifelong one isn’t helpful. You want to sympathize, and I appreciate that, but to equate a temporary, short term condition to a constant day-in, day-out, decade-after-decade condition only shows that you DON’T know what it’s like.

Problematic response #2: “Have you tried essential oils/chiropractics/canned nutrition/a different doctor/a voodoo witch doctor?” These are usually paired with anecdotes of someone you know or heard of that tried said solution and was miraculously healed. Once again, I appreciate your heart in this, but yes, I’ve tried it all (except the voodoo witch doctor), usually more than once. It didn’t help, or I’d still be doing it and I’d be well. I realize you have no way of knowing that, so I will have grace with you, but don’t continue to push. You can say it once, but then let it go. Please. Just let it go. If you don’t, I might have to start singing that song at you, and nobody wants that!

Problematic response #3: “Has your doctor done test X on you?” This is a generalized response which includes “Why hasn’t your doctor…” and “Why doesn’t your doctor…”, and “You should make your doctor…” and is the bane of my personal existence. I don’t know why my doctor hasn’t done those things, and no, I’m probably not going to argue with him about it next time I see him. I may ask him about it, but every time I’ve done this he is fully aware that such a test or procedure exists and has valid reasons why he hasn’t used them on me. Please remember my doctor has more experience with my disease than you and I together do, so he generally knows what he’s doing.

Problematic response #4: “You need to try praying X amount a day/X scriptures X times a day/ speaking to the disease in the name of Jesus and declaring it cast into hell/ repenting of hidden sins/ attend the meetings being held by Brother Miraculous in Iowa/ or getting the deacons to anoint you with oil.” This is really just another version of response #2, but in a way it’s more painful because at the root of it you’re telling me if I was more spiritual/holy I wouldn’t be sick. My illness is not my fault, and it’s not because I’m lacking in my relationship with God. We live in a fallen, decaying world, and sometimes illness happens.

So what do we really need from you, the healthy ones? We need compassion and understanding. What about saying “That must be really hard to deal with. I’m sorry to hear you’re going through that.” And STOP. We also need you to not assume we can or cannot participate in something you are going to be doing. If you are concerned we might not be up to it, ask anyway, thus allowing us the dignity of getting to control our own lives and schedules. If you assume we can, be prepared we may need to say we can’t and accept our decline with grace.

If we know you well, and you know about our journey and happen to hear something that might be new to us that might help it’s OK to tell us about it, but say it once, then stop. Most of us are open to new possibilities for relief, but most of what you hear about is not going to be new to us, because we try everything. I’m blessed to have a very patient specialist who takes all my questions respectfully because he deals with chronically ill people all the time, and he knows we search for any straw to grasp at.

Every single friend I have that is chronically ill has had the experience of being made to feel as though they are letting other people down by not getting well. People give advice, or the religious ones pray, then look to us expectantly hoping to see us jump up and yell hallelujah and run around the room. When it doesn’t happen they are crestfallen, and most of us feel bad about you guys feeling sad. Does that mean we don’t want prayers for healing? No, but we need you to keep your emotions about the outcome to yourself. That sounds harsh, but we really do need that. If you’re disappointed, how do you think we feel? Pray with hope and expectation, but with understanding that you’re not the first one to pray for us, and so far that hasn’t been the answer for us.

Personally I pray for the day that all that accumulated prayer bursts forth in glory and I will walk pain free and full of energy, a walking testimony to the goodness of God, but for now I limp through life, learning to lean on God in the midst of my pain. While it’s not what I would choose, God is using it to grow my faith and strength in my relationship with him. I have learned a lot about faith, God, living with priorities, and walking in mercy, and I’m at peace about my circumstances. If God has allowed this, I can survive this. And you can, too.

Following is a quote from Misty Edwards that really sums up how I live my life. If my illness makes you uncomfortable or sad, maybe it will help you, too.

Because life, life is but a vapor
But its brevity is what makes it a treasure
So feel it all like a love letter
To the One you’ll live with forever.

                       –Misty Edwards, “Little Bird”


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How to Save a Country

As we are being daily bombarded with the latest antics of people who think they are qualified to be our next president, I’ve about had enough. It’s months before anyone gets a chance to cast a vote, and I’m over it already. This has led me to consider how we could improve the whole system, making it less tedious to live through and possibly even give us a better president in the end.

I propose we hold our politicians (and politician wanna-bes) to the same standards to which we hold our children. Get caught name calling? Go to time out. When you think you understand what you did wrong, come tell us about it and we’ll give you another chance. Continue the behavior and the consequences will get worse, ultimately ending with you being expelled from the group. Get caught passing notes when you’re supposed to be doing your work? Go to time out. When you think you understand what you did wrong, come tell us and you may get another chance. Lie about not having passed notes, or blaming others for the notes? Sorry, you’re in time out for a very long time, and will probably get expelled. Blame others for things you have done? Time out. Lying about what you have said or done? Time out. Tell the truth and act in a civilized manner? You get a gold star and possibly our vote.

I think this might work. What do you think?

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More Kisses

Last week started with a personal disappointment. Not life altering, but still… However, less than 24 hours later God sent me yet another kiss.

A couple years ago my son got me hooked on soccer. I have two favorite teams: Sporting KC and Chelsea. (I’m allowed to favorites because they are in different leagues. I’m sure that’s an official rule!) The afternoon after the disappointment I got a call from Brian. He asked if we had plans for the next evening, and I said, “No, why?” He said, “You wanna see some futbol?” I said, “Well, I guess so…” No, I tell a lie. I believe I said “Heck yeah!” Then he told me it was the International Champions Cup, being played in DC between Barcelona and Chelsea. Double heck yeah! I asked how much it was going to cost us, and he said, “Nothing.” Someone had bought some tickets for the game then decided not to use them, so they were giving them away. Hot dog!

The fun magnified when I found out where the seats were. I took a couple pictures. This is the section we were sitting in: 


Yep. The  seats were so good they are in the “Dream Seats” section. Here’s a pic of how great the seats were:

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So, yeah. The week started with a disappointment, and God turned it around. Did we have to see a match? No. Did we have to see Chelsea? Nope. Did we want to? Oh, yeah… And God knew. It was a whisper in my heart, that I never spoke out loud, because what’s the realistic chance of me getting to see an English soccer team play? With God, all things are possible. Thanks for the kisses, Lord. And if it’s OK to ask, keep ’em comin’!

A bonus photo: this is how I felt the whole night.

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Kisses from God- Part 2, in which I am reminded He loves me

Brian wasn’t the only one that got Kisses from God while we were in Alaska. I got several, as well. (You can read about Brian’s here if you missed it.)

In order to understand my kisses from God, you have to know a little about me. I’m a photographer.  It’s about more than having a camera and knowing how to use it; it’s about experiencing life in pictures, to the point of thinking in pictures at times. While most people are distracted and pulled out of an event when they taking pictures, I am actually more immersed. I’m watching for that one, defining moment among everything that’s happening. Where is that one vignette in the midst of all the activity that best captures the feel of the moment? When is that one split second when something happens that captures the glory, fun, or whatever, of what is going on around me? I take photographs not just to record, but to remember and to communicate to others that aren’t there to experience it all first hand. This matters to my story, because without knowing this what happened to me won’t sound like much. It may not anyway, but trust me; to my heart, these moments were huge.

The first kiss from God came while we were at Hubbard Glacier. The cruise ship pulled into Disenchantment Bay and pulled as close as it safely could to the glacier and parked for a while so everyone had a chance to stare in amazement at the splendor. And stare we did. I of course stared mostly through my camera lens. I had mentioned to God that I’d love to see the glacier calve, something we didn’t see on our last trip. This time I was looking through my camera’s viewfinder, clicking like a crazy person, when all of a sudden, right there through my lens, I saw movement. A huge chunk of ice, about 250 feet tall, broke free and tumbled into the bay! I clicked like an even crazier person and managed to capture five or six photos of the event. During our short time there, we saw the glacier calve repeatedly in several different places, and I was able to capture a couple different sequences with my camera. My little photographer heart was soaring!

The next day we were in Juneau, and I got to fulfill a lifelong dream: to stand on the blue ice of a glacier. It was a three hour expedition that included several short helicopter flights, a dog sled adventure, and a walkabout on the icy surface of Herbert Glacier. My photographer heart was concerned because we weren’t allowed to take any bags with us. That means I had to strategically stuff extra batteries and cards, along with my wallet and other necessities in my pockets and hope for the best. Changing batteries and cards is not a big deal, except in the cold, with cold fingers, while whizzing across the snow on a dog sled, digging things out of your pockets, or wedged into a tiny helicopter… Yeah, could be interesting. In spite of my usual clicking like a crazy person (see above), both battery and card made it through the expedition. We had just returned to the airport and were waiting for the shuttle to take us back to the dock, and I started reviewing my photos on the back of my camera. I had only looked at about 10 images when my camera went dead. I started to cry. My battery lasted.  As in, there was JUST ENOUGH power to get me through. If it had died on the glacier, or in the helicopter, meh, it happens. It’s a pain, but it happens. But God kept that little battery running, making my expedition simple and carefree. For me. Because He loves me. That my friends, is a kiss.

The final kiss (at least that I’m going to write about here) happened in Hoonah, Alaska, the site of our whale expedition. As usual, I was (say it all together now!) clicking like a crazy person. I got photos of sea lions, sea otters, bald eagles, and whales, whales, whales. For three hours I clicked. The captain announced we had to return to the dock soon, so we would wait just a couple more minutes to see one final surfacing of the whales. This was the closest encounter we had yet with the beasts; they were close enough we could see the scratches and scars on their skin. Then, with a flick of their tail they disappeared for the final time and the captain returned to the wheel to head back to the marina. I looked down at my camera, and saw a flashing message on the LCD screen: CF CARD FULL. Yep. The card held exactly the number of photos I took of the wildlife! The EXACT number! A coincidence? Meh. I say a kiss from God.

So what do I believe God was saying through these kisses? These little things that I could have lived without: things that wouldn’t have destroyed the trip had they not happened? “I love you, daughter. I enjoy they way you experience My creation through your art. Go for it!” My heart is singing, and I still get a big goofy grin every time I think about all this. Little things that mean so much. He loves me. He really loves me.

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Happy Birthday, Mattie Sam

Four years ago today I had one of those milestone birthdays generally celebrated in a big way, making big memories. I don’t remember what presents I got, or what my birthday dinner was. I only remember one thing: the phone call saying Matthias Samuel was about to enter the world. I spent the rest of the day checking my phone every five minutes to see if he had arrived. Much to my disappointment, he waited two hours past midnight to make his appearance, but I decided to claim him as my birthday buddy anyway.

Mattie was born with Down syndrome, which we knew he would be, but he also had a heart condition, as well as some other physical complications. He got an infection when he was four days old which almost took his life, and that was just the beginning. We almost lost him so many times during his first year that I lost track. Through it all, Mattie was busy being Mattie. This boy had a smile that melted the hardest of hearts. You know at the end of How the Grinch Stole Christmas when the Grinch’s heart grew three times its size? That’s what Mattie did for us. Two months ago, on August 21, 2014, Mattie Sam met Jesus face to face. It was sudden, and it was a shock. We are still reeling from it, in fact.

There are those who say Mattie should not have been born because he was sick. Did he suffer? Yes. But guess what? He also loved. He loved and was loved. He had joy, he gave joy. He learned, he teased, he grew, he inspired. Through social media thousands saw the pictures Mattie’s mom posted of him daily and grew to love him. I’ve heard many people say when they had a bad day they’d log on to Facebook just to look through pictures of Mattie until they felt better. That was our little Miracle Mattie. Through it all, he was a trooper.

His parents are also troopers. Life with Mattie was hard: really hard. But if you ask them they will say that yes, it was worth it. Yes, if they had to choose, they would choose to do it all again, a million times over. His siblings, ranging from the age of 7 to 23 also say it was worth it. HE was worth it. Yes, life with Mattie was hard, but life with Mattie was also beautiful.

We all wish we had more time with Mattie, but we are grateful for the time we did have. Just like Mattie, we learned, we loved, we grew. We’ll see him again someday when it’s our turn to meet Jesus face to face. Until then, we remember, and we celebrate. Happy birthday, Mattie Sam!


(The above photo is Mattie at the age of two. His mom wrote a beautiful book explaining tracheotomies to help the many children who were following Mattie’s life understand what that thing on his neck was. The book has been used to inform and prepare many families across the country)

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It’s Adam Week!!!

In case the photo didn’t give it away, this week Adam graduated from International House of Prayer University. To celebrate his achievement, I have declared this week Adam Week. All week I’ll be sharing memories of him as he grew from a 7 lb 10 1/2 oz baby to the tall, strong man he is.

A logical place to start is with his basic personality. He would be the first to tell you he’s “quirky”, and proud of it. He has always been one of a kind: a true color outside the box kind of guy. When he was little, I’d ask him “Do you want peanut butter, or grilled cheese” and his answer would be, “Bologna!” You have to understand, it wasn’t because he loved bologna that much, but rather, he wanted to make a decision outside the boundaries given. While that could be frustrating as his mom, it has proven to serve him well as he charts his course through life. It also makes it ironic, or maybe totally predictable, that he was a member of the one and only class that will ever graduate from the Social Justice Program at the school. (Several months ago it was decided this particular curriculum would be folded into another program.) Leave it to Adam to choose a study program that no one else (outside of his 9 classmates) will ever be able to take!

And while we’re at it, here’s Adam as that adorable 7 lb. 10 1/2 oz. baby boy:

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