Let your light shine

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.

Yes, exactly.

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.

Philippians 2:15-16