Posted on April 24, 2015
I hope you love yellow because you’re about to be blinded by it! SOOOO much light and hope and love and joy are going to pour out of your screen and into your heart.
This past Sunday, a thoroughly amazing flood of support swept through the Brazoria County Fairgrounds auditorium as hundreds (thousands?!) showed up to share their time, talents and treasure with Demi’s Difference. First a wave of volunteers arrived, ready to serve wherever needed.
There were balloons to fill, arches to create, posters of Demi to hang, lanterns to light, and kid activities to set up.
There was a serving line to prepare, drinks to mix, and fish to fry.
Before long every detail was ready, thanks to professional-level planning and teamwork. It all paid off as the yellow tide began to rise.
At one point people were sitting on the floor! Seating had been set up for “only” 500, so more tables and chairs were brought in.
Everyone seemed to enjoy the meal, and only a small handful of tickets remained from the last-minute “just in case” set printed.
T-shirts and bracelets were gobbled up as well. At last count, nearly 1600 of us were sporting Demi’s Difference shirts.
Smile after smile lit up the room as families gathered and friends reconnected.
When it was time for the auction to begin, the lights were dimmed for a prayer and Demi’s sisters and cousins led the crowd in the Pledge of Allegiance.
One special item was presented to Demi’s parents before bidding got underway.
And then the master of ceremonies introduced the auctioneers, including Demi’s daddy and grandpa.
The array of auction items (and item holders) was truly impressive …
… the auction assistants worked the bidders masterfully …
… the auctioneers were unstoppable …
… and the enthusiastic crowd brought their deep pockets and came prepared for a good time.
The younger set enjoyed their entertainment too! Well, the ones who like clowns did anyway.
Finally the auditorium door burst open and light flooded out into the parking lot then up into the sky. Demi’s light was surely shining brightly and making a difference for all to see.
This family is blessed to be loved and supported by so many, and now they will be passing along those blessings to others who need a ray of light in their own dark moment. What a job they have before them! What resources they’ve been given to share!
Shine on, Smith family! Thank you for so generously sharing your Demi with us. She is already changing the world and so are you.
If your gift is serving others, serve them well.
If you are a teacher, teach well.
If your gift is to encourage others, be encouraging.
If it is giving, give generously.
If God has given you leadership ability, take the responsibility seriously.
And if you have a gift for showing kindness to others, do it gladly.
Posted on April 15, 2015
Some people make a difference just by coming into the room, like sunlight or a sweet breeze streaming through a window. It seems Demi Lynn Smith made that sort of difference wherever she went, and she only needed three years to change every person who crossed her path.
Demi was born with a rare chromosonal disorder and passed away suddenly this past December. Her parents, Hayley and Jarrod Smith of Danbury, are in the process of setting up Demi’s Difference, a non-profit organization in her honor. They hope to make a difference in the lives of other families who find themselves unexpectedly in need of emotional and financial support, starting with the families of children treated at Texas Children’s Hospital.
A fundraising fish fry, auction and raffle will be held on Sunday, April 19 beginning at noon at the Brazoria County Fairgrounds. More than 70 volunteers have already signed up to help with what they expect to be their first annual event. Visit the Demi’s Difference website and Facebook page to find out more details about their plans for the funds being raised.
photos courtesy of Smith family
Like many people in Brazoria County, I’ve been following Demi’s story for the past few years, although I’m sorry to say I never got the chance to meet her. Still, her smiling face and determined spirit in facing a seemingly endless string of challenges help me feel as if I do know her, so much so that I’m confident I’ll recognize her when we meet one day on the other side.
Hayley graciously sat down for a long conversation about her sweet girl, the acts of kindness Demi continues to inspire, and how she and Jarrod along with their seven-year-old twins Hannah and Maddie are dealing with their loss. Here are excerpts from our visit:
LAURIE: There’s been an amazing response to Demi’s Difference. So many people love you and have been watching how you’ve been dealing with Demi from the very beginning. You’re well-known but not in a self-seeking way.
HAYLEY: It’s happy tears and it’s a sad story, of course, but I want to turn it into something positive. Yes, we’re honoring Demi, but it’s not all about Demi. As much as we’d been up at the hospital, we always saw people who had it worse. We always said we want to do something but we don’t know what. I think that was the beginning of the spark, and now I feel like it would be a disservice to her not to do anything.
Seeing how people have responded to Demi’s Difference says something about their character but also about their love for you. Where do you think that comes from?
I don’t know! I think it comes just from Demi when she was here: her personality and everything she went through. She always was giggling, and just her laugh in general drew people to her. We recognized that when she was here. There was something about her that drew people to her, even strangers at the hospital or in the store. We were conscious of that, so you kind of think about every decision you make and every Facebook post you make. When we came out with Demi’s Difference, we knew people would latch onto it but not like this. I mean it’s crazy! We did an in lieu of flowers thing at the funeral but we didn’t know what we were going to do. To see people respond when they didn’t even know what we were going to do – they were like, “Here, we trust you to do something great with it.”
In your wildest dreams, where do you hope this leads?
I haven’t even gone there yet. Right now my wildest dream is that we get established at Texas Children’s where if a family comes into the hospital unexpectedly, they know they can go to the Demi’s Difference fund for resources to help them. There are a lot of organizations that already do things there, but I want to be there and have them know they can count on us for parking cards or whatever. Parking is $12/day. We would go every week (for physical therapy and feeding therapy visits) for 2 hours and it was $10, and then the gas to get there. Then when you’re in the hospital, I’m up there, Jarrod’s up there, and then we’re switching out. And then grandmas and aunts and everybody comes up so it adds up. Those costs aren’t always a financial hardship, but the parking cards are a tangible reminder that somebody thought of you and cared for you.
My short-term vision is to go up maybe monthly and go to the different floors handing out 5-day parking cards. Maybe we’ll start with the physical therapy floor because it serves everybody, all ages. Maybe we’ll go monthly, maybe it’ll turn into weekly, I don’t know. I can’t physically do it all by myself, so maybe we’ll have enough people to get that in the works. The 10-day parking cards, the social workers are able to identify families that are right above the Medicaid line and don’t get any other services, and we can kick in there. So that’s something they would hand out.
Receiving something like a parking card or a gift card connects you and creates a community that lets you know you’re supported.
You feel alone when you’re at the hospital for that long, and (as a parent) you’re a patient at the hospital yourself. You’re in sickness mode and talking about all this medical stuff, and you’re alone with your thoughts. To have someone come by and to know they were thinking of you means a lot.
It’s like a bright spot!
Yeah! Exactly. Something bright and positive to think about and get your mind off all the medical stuff.
A lot of times when you’re hit with tragedy, you can get yourself busy with things that keep your mind off of it. But this (Demi’s Difference) is constantly bringing it to the forefront and helping you turn it to a positive. So Demi’s not forgotten, you’re not NOT dealing with grief …
Right, we’re channeling our energy in a better way. You’re broken-hearted but these little things are putting your heart back together. It’s a healing thing for us. I don’t know what I’d do if I didn’t have all this going on right now. I don’t know where I’d be.
When Demi was with you, had you thought of doing something like this eventually although you didn’t know what that might be?
Yeah, I didn’t know if it would be something like going to volunteer there. I talked to her physical therapist and asked what do other families do? Because if you need a reality check, you just go up to the waiting room at the ICU or the genetics department. Then you’ll wonder, “What am I over here complaining about?” She said we have some people who bring cupcakes to whatever floor they choose. So no, we didn’t think we’d do something this big, like a 501c3 organization. We didn’t know what it was but we knew we wanted to do something.
(Demi’s Difference uses Matthew 5:16 as its theme verse printed on the back of their bright yellow T-shirts: “In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.”)
When we first started thinking about this, I wanted to bring God into the story. I wanted everything tied back to a scripture to let people know that we have faith in the Source of how we’re getting up and getting out of bed every day. I don’t remember whether the scripture or the name Demi’s Difference came up first, but we found the scripture “let your light shine before others” and we had already grabbed onto the yellow because her room was decorated in yellow. I’m thinking light, yellow, and it all just came together perfectly.
It’s an important message for people to hear when our tendency is to wonder why bad things happen to good people.
This is why. You know? This is why, to turn ashes into beauty, to bring beauty from ashes.
It’s a challenge for people to even want to move out of grief and think about anything positive. It’s easier and at first you think it even feels better and it’s helping you more just to …
… just to lay down and stay in that state.
Some of that you do have to do.
Oh yeah! I have those days still and I will forever, but hopefully I’ll have more of the other kind of days.
How are the girls doing?
They’re good. They express their grief in different ways. They write and they draw a lot. They’re constantly writing her name and things about her and drawing pictures. They’re kids so they’re kind of blunt sometimes, which is ok too, but they say things adults wouldn’t normally say that take you aback. They’re excited about seeing what we’re doing with all of this. I take them with me to do acts of kindness, and I tell them why we’re doing it. They get that.
They’re doing good overall. It was hard at first and they didn’t fully grasp it. The nights are hardest because we’re alone with our thoughts. Maddie had trouble falling asleep a few nights ago because she couldn’t hear Demi’s loud breathing. I sat and talked to her about it and told her I feel the same way. I try to tell them, “Your feelings are ok, I totally feel the same way. It will get maybe not better but different, and we’ll adjust. We’ll think of her more in happy ways than sad.”
And that is true. That will happen.
They talk about her all the time and laugh about her and remember stuff she did. Through all of this I’ve had so many people come to me and tell me their story. So many of them went through the experience when they were seven, so it’s been nice to be able to go to them for advice for ways to answer the girls’ questions. Until it happens to you, you don’t realize how common it is and you hear a story and think, “Oh my gosh, I can’t imagine what I would do.” And then here you are and now what?
Have you found that this has driven you closer to God?
Yes. Absolutely. You hear that you get closer to God when you’re in the midst of turmoil, and it’s true. I see God’s hand in everything. Like every detail. It’s really cool to see that and be able to recognize it and then tell other people. We did the “what ifs” and we still do, it still comes up. But we try to make the choice to not. I can’t live like that. You can go back to that place – What if I’d gotten the nurse faster? What if it had been a different doctor? What if I’d pushed more? You can do that all day long, but we are choosing overall to give that up. Especially now because it’s not going to change anything. I can’t imagine going through this without having God and knowing that it was out of our control and even out of the doctor’s control. It sounds cheesy but everything happened for a reason.
You know He’s got her.
We know the truth that He has her best in mind. It’s amazing to be surrounded by family and friends who trust God and trust us to do the right thing with Demi’s Difference. We haven’t even done anything yet! I can’t wait to get started after the fundraiser.
So at this point there aren’t many firm plans but lots of willingness and excitement.
Because you’d already had the past three years to seek out and accept help for Demi, she already had a built-in fan club.
Right! We have young girls who work in the nursery in church who asked to be trained to feed Demi and work her G-tube. I think back to myself at that age and there’s no way. I would have been so scared of that. Even when I was a teacher and went in to sit with the Living Skills class, it always intimidated me so I would kind of shy away from that. But now I would totally embrace it. It’s amazing to see these teenage girls whose way of seeing things has been changed.
So many people told us they came away inspired from Demi’s funeral. They thought it was going to be so horrible and sad, but they came away from it maybe not happy but uplifted. Afterwards somebody came up to Jarrod to tell him they’d come in with one view of people with handicaps, “but now I just want to go find a kid with a disability and give ‘em a big hug!” That’s what it’s about!
I had never really been around a kid with a genetic disorder like that, and everyone around her embraced her. They would ask questions about her care and ask to be taught to deal with her G-tube. We all learned a lot, not just about working the feeding tube but about accepting those who maybe have a feeding tube or are different in some way.
I think it’s going to be cool to see that keep going. And our girls too – they were four when Demi was born and helped out a lot from the very beginning. They changed her feeding tube bags and put her foot braces on, and they’d get on to her too when she was pulling her hearing aid out. It’s going to be cool to watch them grow up and see what they’re going to do, what they’re going to become. They already have compassion and recognize when someone’s different or have something going on medically. They’re not scared of that. I think it’s really changed us all in that way. Demi the Difference-Maker. That’s who you are, little sister. I’m so glad to know more about you and your wonderfully made family and have the privilege of watching you continue to light up the world!
Live clean, innocent lives as children of God, shining like bright lights in a dark world.
Hold firmly to the word of life.
Posted on April 14, 2015
I don’t have much of a story to tell you today, but I wanted to share some of the details I spotted at the Lady Bird Johnson Wildflower Center in Austin. Just pretend you’re strolling slowly along the trails with my mom, dad and me.
Ahhhhhhhhhhhh. Thank you, Lady Bird!
Has anyone by fussing in front of the mirror ever gotten taller by so much as an inch? All this time and money wasted on fashion—do you think it makes that much difference? Instead of looking at the fashions, walk out into the fields and look at the wildflowers. They never primp or shop, but have you ever seen color and design quite like it? The ten best-dressed men and women in the country look shabby alongside them. – Matthew 6:27-29
Posted on March 11, 2015
Some very special kids enjoyed a celebration in their honor this past Saturday morning.
The 34th annual BACH Roll ‘n Stroll brought together VIPs from all around Brazoria County:
BACH ECI staff and volunteers …
and a friendly cow with questionable spelling skills.
Roll ‘n Stroll teams took their positions …
… and the Danbury High School band led the parade around and around Brazos Mall.
Costumed rollers and strollers of all ages were in on the party …
… but only the quickest ones got to collect gum and candy scattered along the parade route.
Former BACH kids mingled with parents, grandparents and enthusiastic supporters.
Finally it was time for the Big Event: running to attain their personal best. With some last-minute coaching and lots of cheering, they were off!
From the starting line to the turn-around and back to the finish line, each completed race was a heroic accomplishment.
A hug before send-off, a focused run, and a congratulatory kiss at the end.
Some cheerleaders found creative methods of getting their runners to the finish line …
… while some races called for a team approach to achieve victory.
There were some real characters in the crowd …
… including these four colorful ones.
It all added up to a reward better than any gold medal: lots of beaming, beautiful BACH faces.
Well done, everyone! See you next year!
Therefore, since we are surrounded by such a great cloud of witnesses,
let us throw off everything that hinders and the sin that so easily entangles.
And let us run with perseverance the race marked out for us.
Posted on February 16, 2015
Today is my mama’s birthday!
Looking through the earliest boxes of slides taken by my grandmother Lydia (my mom’s mother-in-law), I’ve been thrilled to find lots of great shots of young Jane. Here are a couple of my favorites. Isn’t she just the loveliest girl?!
My parents met at Southwestern University, where my dad’s next-younger sister was also a student. Here they are in the lobby of the girls’ dorm: Mom, Aunt Sarah, Daddy and Granddaddy Edwin. (Any SU friends out there recognize LK? I’m pretty sure that couch was still gracing the sitting area while we were there. Maybe still today!)
I know Mom was madly in love with Daddy here based on one simple fact: despite her fear of water, she was on a boat. LAUGHING.
And it’s clear Grandmother Lydia approved of this girl who was crazy about her beloved son. Lydia seems to have kept her camera focused on Jane at least as much as David. Here they are on their college graduation day.
Within the next several months, lovely Jane’s life began to turn completely upside down. First came wedding showers …
… then her wedding day, joined by her parents (my Maggie and Papa), her bestest girlfriends, and that handsome boy.
But that’s not all! Jane and David moved to a brand new town, began brand new teaching careers, AND discovered that a brand new baby was on the way. Notice how they both look a bit stunned here?
I love that Lydia caught so many shots of my parents’ first year as grownups.
And even more, I love seeing the progression of that growing up process — including glimpses of their first home, visits to their parents’ homes, and Mom’s growing tummy.
Nope, this baby isn’t me. This shot was taken just a few months before my arrival, but already I see the nice lady who gravitates toward babies, brings a great sense of humor to any situation, and lights up every room with her smile.
I love you, Mama. Seeing these photos now makes me realize how very young you were — I feel surprisingly Mama Bearish toward you! I’d like to sit down with you, put my arm around you and tell you how marvelous you are. I’m so glad you were born on this day!
Posted on January 9, 2015
I recently inherited 15 large boxes containing an estimated 23,000 slides. Many were taken by my great-grandfather, Frank K. Stevens, but the vast majority were taken by my grandmother, Lydia Stevens Shepherd. My plan is to work through the boxes in chronological order and share some of my favorites here as I go.
These photos were included in my grandmother’s first box but were actually taken by her cousin, Frances Herrick. Angleton TX, April or May 1944
Nearly 71 years ago, my daddy looked like this:
That’s his youngest sister, Anne, and his cousin, Pat, hugging their Bubba. Here’s Daddy’s other sister, Sarah:
Daddy (Edwin Jr./David/Bubba/Bub) was surrounded by girls during his growing up years. With two sisters plus three (and later four) girl cousins just down the road, they were all raised practically as siblings and he was the lone boy.
It doesn’t seem to have scarred him. Much.
And just like today’s family portrait sessions involving lots of kids, these little ones displayed unique personalities from the get-go.
In this particular set of sibling-cousin stairsteps, Daddy was second in line: Betty A, David S, Nancy A, Sarah S, Anne S and Pat A. He was about 6-1/2 when these shots were taken in 1944.
I like seeing the brown shoes I’ve heard Daddy tell stories about — the ones he grudgingly put on when leaving for school in the mornings, but then tucked up into a tree along his way there. I like seeing his stick-straight hair combed down neatly, much like it still looks today only with a little gray mixed in. I like seeing the tilt of his head, those big dark eyes, and that mischievous grin. Seeing him at this age makes me think maybe his mom was right to say he was the most wonderful, most beautiful, most gifted boy in all the world.
I have found a treasure trove.
Posted on January 1, 2015
2014 ruined me for normal life. I guess traveling around the country with folk rock stars will do that to you. (If by some strange chance you don’t know which folk rock stars I’m talking about, ask me and I’ll be happy to fill you in.)
You can look at the scarcity of posts on this blog to see that my head just has not been in the game. My body may have been here (sometimes), but my mind has been lalalaaaa …
… and my heart has been pulled away toward an unmarked path.
I’ve tried taking it easy to see if that might help me regain focus …
… but I just long to be OUT THERE. Doing what? I can’t rightly say. It is one great big mystery.
I feel like God is beckoning to me, calling, “Come! There is more! See what new thing I would like to do in and through you!”
I think perhaps He wants me to engage with people more and help them come to know how very wonderful He is.
There are so many details of His Creation that I have yet to see and ponder — surely that’s part of the tug as well.
But where to begin? When to take a deep breath and try? What to do exactly? HOW, LORD?
Surely daybreak is coming soon and I will have enough Light to see by.
For I am about to do something new. See, I have already begun!
Do you not see it?
I will make a pathway through the wilderness. I will create rivers in the dry wasteland.
Isaiah 43:19 NLT
Posted on April 26, 2014
This scamp …
… took my picture today! I was maroon-faced, sweat-soaked, hair slicked back, worn out after 5 hours of photographing lots of tiny dancers — none of that mattered when McKamey reached for my camera and said “PICTURE!”
She’s a fellow photographer, after all, and had been busy with her mom’s phone camera while waiting on me to get to her. Horses? McKamey loves ’em to pieces and dragged me by the hand to the fence so they could be in her pictures too.
This is why I do what I do. You have blessed me greatly, Lord, and I am thankful.
Be thankful in all circumstances,
for this is God’s will for you who belong to Christ Jesus.
1 Thessalonians 5:18
Posted on April 20, 2014
Is every sunrise this breathtakingly gorgeous?
I wouldn’t know because I typically sleep right through them. Today I was up, though. I was with my Friends at Surfside Beach, remembering that the tomb is empty and giving thanks for the great love of the Father.
Taking photos had not been part of the plan so my camera was left at home. Who knew THIS would be waiting for me? Thank goodness for the iPhone in my pocket.
Not a lot of words were spoken. Not many were needed. The message was heard loud and clear throughout Creation.
Jesus is risen! He is risen indeed!
One of our very youngest Friends had decided that this was the day he would join the Church through baptism.
What a day for a life commitment!
What a memorable day to begin a journey of faith!
They were filled with joy when they saw the Lord!
Again He said, “Peace be with you. As the Father has sent Me, so I am sending you.”
Then He breathed on them and said, “Receive the Holy Spirit.”
Posted on March 26, 2014
Each day tells a new story in the book that is your life. Some of the stories are joyous, some are bittersweet, and some are comfortingly uneventful.
Do you keep mental snapshots of those days? Would you like to also have photographs that document your stories?
One Wonderfully Made Day is a different kind of portrait session – one that aims to observe and capture the unique characters and true storyline of one day in your life. Images are caught rather than posed. Interactions are candid rather than orchestrated. Ideally, the camera is ignored and the action simply unfolds.
You might want to use this session to have me capture treasured images of:
… a baby’s first trip to the beach
… a great-grandmother reading with your children
… a bedroom blanket fort-building adventure
… a hospital visit with a beloved family member or friend
… a dad teaching his son to change a carburetor
… a daughter’s pre-game ritual through after-game celebration
… a 90-year-old’s birthday gathering
… a marriage proposal extravaganza
… a farewell for someone heading into military service
… a quiet day at home, from breakfast preparations to bedtime tucking-in routine
What story can I transcribe for you with the help of my camera? I can’t wait to find out!
One Wonderfully Made Day session pricing begins at $975 and includes an 8×8 image storybook. Please contact me to discuss ideas and options.