• Posted on January 26, 2015
the pond.JPG

Fear is a liar

In November, I was asked to write an article for the Loeys-Dietz Syndrome Foundation’s newsletter.  I thought I would share it with you too, because it’s been such a theme in my life for the past 2 years.  Overcoming Fear.  It grips all of us in different ways.  This article may be written toward a specific audience, but the theme is universal.  Whatever your fear is,  identify it, and kick it to the curb.

For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline. – 2 Timothy 1:7

So, here’s the article, but with more pictures (insert winky face emoji that I refuse to actually use because I am not a 12 year old girl):

New Year’s Eve


As a parent with a child that lives with Loeys-Dietz syndrome,  please allow me to write to you from that perspective and filter. I think we are in a select group of human beings that know a deeper meaning of being thankful. Think about it, we have kids that are eligible for ‘Make-a-Wish’. I know most of us have navigated through some very intense medical situations on a daily basis that no parent wants for their child. EVER. Scout’s road so far medically has been a rough one. I’m sure you can relate. Like really, I’m sure you can.

I’ll be honest with you, I can’t read a lot of other people’s LDS stories for too long. It gets me snuggling up in a blanket next to my good frenemy, Fear. And then we stay up all night just thinking about the future. The “what ifs”, the “that will happen to Scout because that happened to (insert yourself or loved one here)”. Now, don’t get me wrong, I care deeply for every single LDS warrior and the people that fight right beside them daily. We are one of those families that are consumed by this specific mutation and how it affects our child. We as a community need to communicate to solve these mysteries together, like the stuff doctors don’t have answers for. We run into a lot of those puzzles. It’s the LDS families that have helped us try to get answers. But guys, let’s be real. Sometimes you have to shut down the internet. Shut.It.Down! Along with what we all struggle with on a daily basis medically and emotionally, there’s the daily news(mostly all bad), politics(yikes), entertainment news(voyeurism), and then there is the Pintresty stuff about what a horrible parent you are because you didn’t use mason jars, bunting, and vintage candy at your child’s birthday party. I’m just over here thinking, “I’m thankful my kid is having another birthday!” Anyway, one more time and then I’ll leave it alone. Shut it on down! Oh, and stay off of WebMD.

If you want to know about Scout and her medical bullet points here they are:

  • Born with bilateral club foot, cleft-palate, interesting looking heart, blue sclera, the fingers, the chin, the eyes, the chest, the stretchyness, the skin, and absolutely the most beautiful soul I have ever known.
  • PDA ligation at 1 month old after congestive heart failure
  • Officially diagnosed with LDS at 1 month old (Thank God for a good hospital and staff with awareness).
  • Numerous procedures and hospitalizations for various fixes or illnesses throughout her life
  • Aortic root replacement at 2 years old at Johns Hopkins performed by the great Dr. Cameron and Dr. Vricella

OK, now that that is out of the way, here’s the other part of Scout’s story: She’s 5, and she has a huge love of lions. Right now, Disney’s Animal Kingdom lodge is her heaven on earth. Her imagination is enchanting and so is her little voice. I’m not sure that a day goes by that she doesn’t tell me that she loves me at least 30 times. She avoids conflict and she is a dawdler. When her father or me tell her to wait for us to help her with a task, she usually doesn’t listen, and then when we get on to her about it, she’ll say, “I’m sorry, I just get so excited”. Her favorite food is refried beans from El Ranchero, and is learning how to compliment her food with various other foods (an idea she picked up from the movie ‘Ratatouille’). If someone else gets hurt, she genuinely wants to know if they are ok. She doesn’t want me to sing to her because she “cries happy tears”. She has a little brother that was born a year to the day she got out of Johns Hopkins for her aortic root replacement. He is ALL boy. She will randomly come up beside me, kiss me on the cheek, and tell me to “Smile all the time”. She is strong, she is courageous, she is brave, and her smile could end wars. Her hugs are pretty magical too.

For us as parents, especially me, something we had to start fighting was fear. Our daughter has fiercely fought for her life on more occasions than anyone, let alone any child should have to. Fear can keep us from letting her live it. If I listened to fear, I would stay in a 10 mile radius of Vanderbilt Children’s Hospital at all times and never sleep. I have to tell fear to get behind me on a regular basis. But let me tell you what happened when I started realizing something about fear. Fear is a liar. Fear wants you to stay home and put bubble wrap on your medically fragile kid and watch ‘Calliou’ on Netflix all day. And NOBODY wants to watch ‘Calliou’ all day. Am I right, ladies?

So here’s some of the things I want to tell you that we have gotten to experience as a family since we started kicking fear in the proverbial crotch. Give Scout a sibling/friend for life, take a trip out west where Scout got to fish for trout, wake up in a cabin surrounded by mountains, watch buffalo cross the road right in front of our car, see wolves, and bears, and go on the tippy tops of the highest mountains. We Moved 50 minutes away from Vanderbilt to a farm where we get to wake up to cows, and eat eggs from our own chickens that Scout and her brother got to raise. She has a cat, and a dog, and a pond, rocks to throw in that pond, and a giant rock to stand on so she can roar like a lion. We see sunrises and sunsets and can actually see stars at night. She has good kids around her that don’t understand everything she goes through, but they are kind, and careful. This is just the beginning. We will continue to fight fear and give our family the most abundant life we can and make memories that don’t involve hospitals and doctors’ offices.

When we were at the Loeys-Dietz Foundation conference this summer, I observed something very beautiful. I saw relationships being nurtured and people that were invested in the human experience. I saw people that were present in the moment because they know how precious each moment is. I saw a group of people that truly need each other. Through our circumstances we have become a community.

You know how preachers sometimes say, “This lesson is for me”? Well, this one totally is…for me. Allow me to leave you with these last thoughts. If fear comes knocking, look fear in the face and tell it that it is not welcome in your life. You or your loved ones have fought much too hard for that life. Go out and live it. Happy Thanksgiving. I’m thankful for you, the life you are living, the people that are working to make a better life for those with LDS, and the community we get to be a part of. Peace.

on the tippy top of a mountain in Montana 

very first time fishing (in a stream in Montana…nothing was caught, but it was peaceful and beautiful)

a built in BFF

a view from the front porch at the farm house, and the chickens

pulling Ash up onto Pride Rock (pride rock differs depending on what rock is available at the time)

almost literally loving this cat to death

fall on the farm

Just one of the incredible sunsets we get to witness every night. Sorry that that pink vest overpowers what is in the background.

Scout with some lovely girls at the Loeys-Dietz conference this summer.  This was the first time all of these girls got to hang out with other kids that actually understand each other’s day to day.

snow from this saturday morning

one more sunset for your enjoyment






  • Posted on July 30, 2014

Mother’s first 911 call, or, A very Long Account of How a Special Needs Mother Handles an Emergency



I can’t tell you how it happened, but I saw it all take place right before my eyes.  Scout’s chair tipped back and the back of her head hit the corner of bricks on the hearth of the fireplace.  She’s such a careful kid.  She wasn’t doing anything I saw to warrant such a reaction out of that chair.  But it happened.  In slow motion. Her body going back with the chair tipping, her head hitting the brick, her neck being forced forward because of the blow.  I was sitting right there.  I saw it all.  I went to grab her, but she rolled over and put her body in a curled up sitting position before I reached her, when I saw the blood.  In those split seconds, your instincts kick in.  And as a mom with a kid with LDS you rehearse these situations in your head thousands of times, not for fun,  but because they are a very real threat.  Because just about everything that may be just kid stuff for just kids is on a whole other level of emergent for a kid like Scout.

I knew this was an ambulance worthy ride when I saw the blood.  There was a lot of it and it was coming quick.  within seconds, I called 911, and held Scout.

“911 what’s your emergency?”

“My daughter fell and is bleeding a lot. Send an ambulance now.  She probably needs stitches. She has an aneurism disease, is a heart patient, and has C1/C2 instability.”

(Dispatch got our address and told me the ambulance was on it’s way)

“Put pressure on her head and don’t let go.  If it bleeds through, keep it on.  Keep pressure on it.  Don’t let her go to sleep.”

“Is it really on the way?  Where is it?  Do you need to send a medi-vac?”

“Why would I need to send medi-vac?”

“Because we live far out here.  And an ambulance takes a while sometimes”.

“It’s on it’s way.”

(In a sing songy kind of, I don’t really believe you voice)


I look at the clock 3:07pm

“What is her disease?”

“Loeys-Dietz Syndrome.  It’s a connective tissue disorder”

“Can you tell me more plainly what that means?”

“She’s 5 years old, is at risk for aneurisms, has heart issues, and has neck issues”.

(I can hear in her voice that she knows that I mean business)


“I need to call my husband”

“We can call for you”

(I can hear her getting another dispatcher to do that while she stays on the phone with me)

Meanwhile the tea kettle starts screaming on the stove because I had started to make a pot right before all of this happened.  I decide to leave Scout for a brief second to turn that off because that is not a calming noise to add to the stress of the situation and a little girl that is obviously scared.  I go back to holding a wash cloth on the back of her head while holding her in my arms. She just keeps looking at me and telling me  over and over that she wants to go to sleep and that she loves me.  I tell her I love her too, and to not go to sleep. At this point we had shifted into the bathroom.  I grab the ipad that appeared out of nowhere and turn on a movie to keep her distracted.


“What is she saying?”

“She’s telling me she’s tired and she loves me”

At that point I wonder if it’s because she either knows she’s about to die, thinks she’s about to die, or she’s just tired and loves me.


“Honey, you are going to be fine.  You just hit your head hard and it’s bleeding”

Scout, crying with the thought that she will need a band-aid:

“I don’t want a band-aid”


“Oh well, that’s the cool thing about it,  you probably won’t get a band-aid.  They’ll have something cooler to put the boo-boo back together.”

(I always feel guilty when I try to make all of these medical scary things sound totally rad).


“We couldn’t get your husband”


“Where is the ambulance?  Do you know where it is?”


“No, I don’t but it’s on it’s way”

Meanwhile,  my 2 year old knows there is a serious situation amidst this chaos.  He kisses Scout on the head, sits down next to us in the bathroom floor and watches whatever movie I put on the ipad.  I start thinking of all of the things that are going to need to happen before we leave in the ambulance.  I’m dressed. Good.  Scout’s dressed, but bloody.  Ash is in a diaper and only a diaper. What am I going to do with Ash?  I know they won’t let him ride in the ambulance.


“I need to call my husband”


“OK, you can call me back if you need to.  The ambulance is on it’s way”


Call Gabe. No answer.

Call friend that lives kind of close by, No answer.

Call Gabe. No answer.

text Gabe: “911. Call Me!!!”

Call friend that lives kind of close by, No answer.


I have no idea what I’m going to do about my 2 year old.

Gabe calls:


“Scout fell and an ambulance is on it’s way.  She’s probably going to need stitches,  I think the bleeding has slowed down.  I need you to come home and get Ash.  I can’t get a hold of anyone”.

The neighbors we did know all were either out of town or at work.  There’s Edna, but I don’t want to scare her.

3 Paramedics arrive.  I forgot to look at my phone to see how long it took. This has been a very real concern for me , but I still don’t know the response time.  I’ll just say it was quick enough. Rght behind the paramedics, Edna, our 70 something neighbor runs, RUNS in right behind them.  She’s out of breath and looks terrified. Sits down in the chair next to the offending one to catch her breath. I have no idea how she got here so fast.  We live on a farm and our houses are farther away than suburb houses.  I don’t even know how she saw the ambulance, or how she knew. I will speak to her in a minute.  She will wait with Ash until relief arrives.

I ask all of the Paramedics their names so I can introduce them to Scout.  One’s name is Alex (She loves Alex the lion from Madagascar). Everything is coming to a calm now. I repeat everything I told the 911 operator.  They take a look at her head. At this point, I hadn’t even been able to see the wound because of her blood and hair in the way.


“She’s going to need stitches.”

My phone rings,  it’s the one person I thought could possibly come get Ash.

I look at Edna,

“Will you watch Ash until Jen gets here?”

Edna nods. I hadn’t even asked Jen yet.  I pick up the phone.

“Jen, what are you doing?”

“I’m scraping paint, why, what’s up?”

“We have a little emergency, Scout fell and  I need to take her to the hospital.  Can you come get Ash until Gabe gets here? Edna will be here with him until then”

“I’m on my way”

My phone dies. The paramedics are patiently watching all of this unfold.  I look back at them and say,

“Are we ready?”


“Yes. Maury Regional”?



Given everything I had told them, they knew they needed to take more precautions than usual. One of the paramedics took her in their arms and secured her in the ambulance, while I  got her milk, my water, the ipad, chargers, my shoes, and her backpack that I take everywhere for those just in case occasions.  I leave the lunch on the table we were just finishing up when the fall happened.  I Look at Edna and say “Thank You” and walk out to the ambulance.

They told me they were going to have to give her some braces, so when I walked in the ambulance, she was laying on the stretcher, she had on a neck brace and some kind of head bracing as well.



Scout’s bracing in the ambulance 

Here’s the thing.  This is her third ambulance ride. This year.  I am not proud to tell you that she’s getting to be a pro at this. She was calm and didn’t talk.  I always have to answer questions that I don’t really want to to whatever paramedic rides in the back with us (i.e. Now what’s Loeys-Dietz, again?, What’s the life expectancy?, Are there mental issues?…) but I always answer the questions, because who else can?

I wondered why they didn’t turn the lights on so we could get through traffic.  It’s a 45 minute ride now that we moved to the country. I tell Scout that they have TV so maybe we can find ‘My Little Pony’ or something and they have internet so she can watch PBS kids.  We don’t have TV or internet at home so I say this to now hopefully soften the blow of her hospital visit.

We finally arrive. They take us to a room.  When you first arrive in an ambulance at an ER, the whole team comes in to meet the new patient.  I go through the script again.

Starting with the most important at hand before they touch her.

“She has C1/C2 instability, has had an aortic root replacement, She has Loeys-Dietz syndrome”  I look for understanding eyes. None. “Which is similar to Marfan, her cardiologist is Markham, her Ortho is Mencio”

The only thing I heard the paramedics say was that she fell from a chair onto a hearth and that the mother denied her ever loosing consciousness.

Here’s where something occurs to me.  I am not the same person I was 5 years ago.  I wouldn’t understand a word I just said.  I would look at this future me and think, “Wow, she sure does think she’s like some kind of doctor or something and being all assertive with these medical peoples.  And why isn’t she wearing socks?

They took a look at the wound, took her temp, BP, and sats,  ask me more questions about her and not much about the actual incident.  They decide to do a CT scan, just in case.  I told them she had been limping for over two weeks from a fall just in case they wanted to do an xray of that.  They didn’t. I wondered how long it would take and if they would have to put her under for the scan.  They didn’t think they would have to.

Gabe arrives at the hospital.  He worked out to have Ash stay with our friends so he could be at the hospital as long as it took.  God Bless them.  They are good ones.

Scout was happy to see her Daddy.  At this point we were in the 5:00pm hour.

When she went to get the CT scan, they told her they were going to take some pictures.  She said she would smile for the camera.  We told her to stay really still.  She did. I found a ‘Fluttershy’ sticker for her in the scan room, and the radiologist gave her some kind of miniature stuffed leopard backpacky concoction. They said it would take 20 minutes for the results.


Scout smiling for the CT scan picture



We went back to the room to wait for results, play a free ‘Strawberry Shortcake’ smoothie game I downloaded on the ipad (because we had internet at the hospital), and went to the movie cabinet to find something Scout would like.  Two movies with lion characters, and ‘Horton Hears a Who’  which she recently just saw for the first time at the LDSF conference movie night and loved.  She picked ‘Horton’.



The annoying, yet precautionary neck brace



In the 7:00pm hour the resident doctor came to ask me if anyone had come back to tell me the results of the CT scan. I said softly “Really”?  because I really actually thought he was kidding.  He saw I was weary and Scout was too. All of the sudden, very quickly, after waiting a very long time, he came in with the doctor in charge with the results. The CT scan looked fine.  Scout was finally relieved of her neck brace. The doctors would be back to numb the head wound.

The head doctor explained to Scout about the magic gel that he would apply.  It would help her not feel much when he put the magic thread in, it would just feel like a little tug like when someone tugs on your hair.  He told her that if anything hurts that she could punch him in the stomach as many times as it hurt. They applied the magic gel.  It would take 45 minutes for it to take effect.



After the neck brace was removed and the magic gel took effect (sparing you the blood from the back view)


I asked Gabe to go get some dinner and bring something back that Scout will like.  None of the hospital food is good or good for you, so he walks to Hillsboro Village on such occasions.  He got Sushi for us and Chicken Skewers for Scout.  She ate one bite.

The doctors came back to stitch her up and cleaned the wound.  Gabe took pictures, of course.  I won’t show you, but it was a pretty big gash. I called our friends to tell them we would hopefully be home by 10:00.  They had taken Ash to all of their kid’s baseball games.  It had never occurred to me that they had plans for the night.

Scout gave the doctor 6 punches to the gut.  The resident told Scout he deserved some of those.  I think he wanted to get punched too.  She didn’t do it.

We carried her to the car.  Gabe had a booster seat in his car, which he never usually has in there.  I sat in the back with her.  She said she was just really tired. She wouldn’t lean back because she was afraid to hurt her stitches.  I Moved over so she could lean on me. As we were approaching our exit home, Scout had that all too familiar feeling of nausea.  She threw up.  I caught the second round of vomit in my water cup.  But her stuffed lion, Alex   and her Nala and Simba shirt caught the first round.  I immediately blamed the neck brace for this one in my mind, but told Scout that it was ok and we were almost home.  Gabe asked what he should do, I told him to keep driving, take her home,  and go back out and pick up Ash.

Gabe left to get Ash at the meeting point of the McDonald’s off of the exit, I got Scout in the tub to wash her off, and tried peroxide on Scout’s shirt to wash out all of the blood.  I had already sent a text to my sister to start looking for a new one.  Gabe had asked me in the hospital why I was so worried about that shirt.  I told him because it was the only one that had Nala on it (I’m sure he has no idea how hard it is to find a shirt with Nala on it. It’s not the ’90’s anymore).

When I got her out of the tub, she said “I just want to lay in bed with you and watch a little movie”.  I put her in bed with me and she immediately fell asleep.  Ash and Gabe soon arrived home where Gabe moved Scout to her room.  We agreed that he should sleep with Scout all night just to keep an eye on her.  He did, but let’s be honest,  I woke up every hour or so to check her temp and if she was breathing too.  She was.  Ash slept well from his big day too.


In Conclusion

I know This isn’t a post for everyone.  Maybe it’s just for me. Maybe I’m putting it out here for those one or two parents that can relate and to let them know they’re not alone. Maybe, I just needed to get it out of my brain and put it down.  But then there’s that side of me that wants everybody to know what Scout goes through. The further we go on this journey as parents,  the more we know how people very close to us still don’t get it even though we want them too. But how can they? Old me would totally not get it. I guess until you have a child like Scout,  you may never fully grasp how consuming this syndrome is.  A fall that requires stitches is a bigger deal than it should be. There are plenty of medical professionals that we’ve dealt with that don’t get it…yet.  But we have hope in the future.  We have hope in the doctors that are working daily to bring a better quality of life for our kids.

I’d like to close with a quote from my friend, Kate who wrote about her experiences with her daughter, Mo and her first 17 years of life. There’s a lot more hope than there was in 2005 when LDS was first described. This is from a chapter in the book where they meet Dr. Dietz for the first time and he is explaining some things to Mo and Kate. This is before Loeys-Dietz even had a name.


“Mo, when we first started studying this disease process, the story didn’t have a very happy ending most of the time.  But now we’re finding so many people with so many different degrees of this syndrome that with early and vigilant care people are living long and fulfilling lives.  I want you to go home to Wisconsin thinking about going to high school and college and walking down the aisle when you get married some day.”

Mo is about to start her second year of college in nursing school.

Please keep praying for Scout, Mo,  and all of her fellow LDS warriors.  Please keep praying for complete healing. Please pray for a cure that my human mind seems to think is impossible,  but my faith tells me it’s not.   Thank you for your love.  We love you.





  • Posted on February 23, 2014

Almost out of the Woods

Things are looking a little more like our normal here in our house. Scout is on the mend from all of the things that hit her the past three weeks. It’s been a challenging few weeks, but we are starting to see a healthier, happier Scout. She still has some residual things that need to clear out of her body from the pneumonia and stomach virus, but she’s looking so much better. Thank you for helping us. Thank you for praying, words of encouragement, hospital visits, food, cards, gifts, love. It takes a village and the farther we continue on our journey, the more I understand that. I have many stories of the acts of love that we received these past weeks. You know who you are, and we thank God for you. He takes care of us through you. I know it, I’ve seen it too many times to deny it.


Still on the couch, but sitting up, talking, smiling, drinking OJ and eating cheese sticks.

  • Posted on February 20, 2014

Same couch, different spot

I think Scout is moving in the right direction. She didn’t throw up last night and most of today. Which also means she slept and kept her meds in.
She still doesn’t have much energy, but is talking a little more,  and just asked for food. She hasn’t eaten much in the past two weeks. So, we’ll see how that goes. On the pneumonia side of things, her breathing is MUCH better. So all in all, today was a good day.

Things start going a lot better when you all rally around her with your love and prayers. But I know for that to happen, we have to ask for help, which is still something we are still working on, believe it or not. Thank you for caring and praying and loving. We need you more than you could ever know.


  • Posted on February 19, 2014

Keep it going


Scout got out of the hospital yesterday. She was looking and acting better than she had in days (even singing “Eye of the Tiger” to herself on the way home). And then the clock struck 9:23 in the pm. And some new awfulness struck. Scout vomited off and on through the night.
We went to the doctor this afternoon. We’re all in agreement that this is a new virus she picked up in her health care happenings this past week. We are all as a team, trying to keep her out of the hospital, but she really can’t keep anything in right now (including the meds she’s taking to get rid of the pneumonia). Please keep praying for Scout. She’s had a rough handful of days and her body is already so weak.  Pray that she has a significantly better night tonight and that this virus is over tonight.  This kid needs a break.


  • Posted on February 15, 2014

Love in the time of Pnuemonia

As you may know, Scout has been hospitalized for pneumonia.  On Monday, I took her to the doctor because her cough was concerning to us.  That visit ended with an ambulance ride to the Vanderbilt Children’s Hospital E.R. They actually sent us home from the ER that day because her oxygen levels looked good(ish) and her X-ray looked not too bad, but still she was being treated for pnuemonia although it wasn’t too concerning.  We had a follow-up Tuesday with Scout’s pediatrician.  At this point, we all were still hopeful she could lick this thing at home, but she would be followed closely.  Thursday, we had another follow-up at the pediatrician and at this point, another ambulance ride was in order, and Scout’s doctor said,  “I’m not letting you leave the hospital this time”.  Scout’s body is just so tired from trying to fight the infection that she needs more help than we can give her at home.  Her spirits were very low on Thursday when she was admitted.  She isn’t talking much.  She has no will to eat or drink, and doesn’t want to get out of the bed, let alone play.  We ask of you, if you will, to pray for not only the destruction of this infection and pneumonia, but also her spirit to be renewed.  She’s showing some tiny improvement this morning,  but it is going to be a very slow process of recovery for a little body with weak connective tissue.  Thank you, friends.  We love you.


Ambulance ride #1


Ambulance Ride #2


FaceTime with Dad and Ash from the ER

20140215-114555.jpgValentines day at Hotel Vanderbilt

  • Posted on January 10, 2014

Field Report

In these days of polished blogs that read things like “5 Reasons Why You Should Feel Bad About Everything You’re Doing”, this is not one of them.  This is a place for us to give you more info on Scout and our goal is plain: We want you to pray for her. I am not a writer. So, I hope that you can understand what I’m trying to convey here even though these thoughts are scattered, please stay with me..

We’re back home and so happy to be here, but had a wonderful time in Baltimore visiting the Children’s House, some dear friends, and my mama.

With Scout, there is never a short answer to any question asked. If you ask, “How is Scout doing?” , the short answer would be “She’s doing really good right now”. But there are so many variables within that answer that we know to the common question asker, we should just stick with that answer. But in a deeper conversation, when somebody really wants to know, and has the time, and we can handle it,  we may give a more detailed response.


It’s still Christmas in the Children’s House


Consider it Pure Joy:

2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 7 That person should not expect to receive anything from the Lord. 8 Such a person is double-minded and unstable in all they do. 9 Believers in humble circumstances ought to take pride in their high position. 10 But the rich should take pride in their humiliation—since they will pass away like a wild flower. 11 For the sun rises with scorching heat and withers the plant; its blossom falls and its beauty is destroyed. In the same way, the rich will fade away even while they go about their business. 12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.13 When tempted, no one should say, “God is tempting me.” For God cannot be tempted by evil, nor does he tempt anyone; 14 but each person is tempted when they are dragged away by their own evil desire and enticed.15 Then, after desire has conceived, it gives birth to sin; and sin, when it is full-grown, gives birth to death.  James 1:2-15

 Medically speaking, there is no cure. Scout was born with a syndrome that one can only address each individual problem and hope to improve it and her quality of life. We are not naive. We live with this reality and are reminded of it daily and consistently. Sometimes, it can be polarizing.  But with that being said, I think I speak for both of us when I say, WE CHOOSE JOY.  And lately, I’ve been praying with more boldness for something that in our human terms seems impossible:  A cure.  Not a portion of a cure, but a complete healing.  Why?  Because.

I cannot even begin to tell you the blessings, kindness, love, light, and goodness our eyes have been opened to since the arrival of Scout.  From family and friends, to complete strangers,  we get to witness so much of the greatest side of one of God’s great creations: His People.


The new Children’s Hospital at John’s Hopkins has sparkly floors


Notes from the Baltimore trip.

Although, most of my conversations with people involve something about Scout in some way, I still don’t think a majority of people actually understand.  That is because of our walking that line of trying to be honest, but not trying to sound like we are trying to get sympathy, or 1 upping a ‘my kid was so sick’ conversation.  I am saying this because I’m trying to be frank with you.  Scout endures much unpleasantness which in turn is unpleasant for us.  But if you can’t find the small victories every day, I’m not sure, as a parent, you can survive.  Well, maybe you can survive, but your house may not be a very bright one.  Anyway, what I’m trying to say is, focus on the positive without ignoring the reality of it all.  I’m preaching to myself.


Scout after the IV stick waiting to go into the CT scan room.  With plenty of stickers that she cared zero about getting even though they kept giving her more and more.

That’s what being brave is

So, Scout had a full body CT scan on Monday. Historically,  she is injected with a dye and strapped down so she won’t move while they run her through a large machine. Gabe and I had some anxiety over this as we anticipated her fear of the whole process.  Lately, she has had varied degrees of the meltdown type in getting a haircut, the singing of  the “Happy Birthday” song, and of all things, a trial trick-or-treating (another story for another time, but we wouldn’t even dream of taking her to a real one after that).  So when it came time for the injection I was prepared to do what I had to do to restrain while comforting her.  And then, an angel of the Lord walked in.  I’m not sure how angels and all of that work really, but if I had to guess,  I would say, Phil the I.V. man, works for the Lord.  I have never seen anyone put a needle in a child with such talent.  Scout was scared when he presented the needle as she balled up in my lap, but Phil reasoned with her, and talked her through the whole thing with a soft, comforting voice that somehow, got her through it.  She cried as she told us all how she didn’t want the shot.  I told her how brave she was.  She said through her tears, “I’m not brave because I’m just so scared. I don’t want to do this”.  Then Phil said “But that’s what being brave is all about,  doing the things that are hard even though you may not want to”. I’m paraphrasing a little, because I couldn’t stop right then and write it down.

She was then taken to a room with a big machine that scans her body.  She was scared, but they didn’t even strap her down this time.  She cried as her little brave body trembled while she shut her eyes as tight as she could and tried to stay as still as she could so they could get the pictures.  She was so brave.  So brave.

She needs to have these scans regularly because in LDS (not the morman kind), arteries grow fast.  And with that can come aneurysms anywhere in the body.  Scout has been on a medicine that she takes twice daily since she was 1 month old, to try to slow that growth.  Of interest right now is her carotid artery.  It or they, I don’t know how to say that, but Scout’s carotid artery (arteries? I’m not going to take the time to look up the proper way to say that) are tortuous.  So, this is something that we all need to keep an eye on.  The scan this week showed that there was no sign of new aneurysms and that her carotid artery has not changed since her previous scan in February of 2012.  Thank you God!!!


Scout being so brave through her scan.  I usually don’t take pictures of my child in unpleasant moments, but I do feel the need to show not only a small amount of what she goes through,  but to document her journey for her. So hopefully, one day, she can see how far she has come.  She is a pioneer.  There aren’t many like her.  When she was born in 2009, there where only 108 diagnosed cases in the world.


The wiz

One Tuesday,  we met with Dr. Dietz about the results of that scan, and our other concerns.  Our recent concerns with Scout are that she has difficulty eating (she’s in therapy for that), she complains of neck pain almost daily, and that she has nausea or just plain vomits for reasons we still can’t exactly figure out.  We have tried to find a pattern, and I have new theories weekly, but really, we just don’t know.  Dr. Dietz looked Scout over with tender care, he looked at her spine and saw that maybe there was a small curve that we need to get looked at.  He even looked at her scalp.  While he was looking I said “She has this cradle cap we still can’t get rid of”.  He said that could be indicative of an allergy.  So along with the nausea and vomiting, and then the cradle cap stuff, he recommends Scout have some formal food allergy testing.  So we shall do what the wizard of Loeys-Dietz requests.  We are seeing her orthopedic doctor next week, and I will be scheduling an allergy test sometime very soon.

As we said our goodbyes, I said “thank you” to Dr. Dietz as he hugged all of us individually.  He said, “No. Thank YOU”.  At that point, I needed to tell him that we pray for him. I don’t know how God works, and I’m not even going to try to figure that one out either, but maybe that cure that we want so desperately and that seems medically impossible will come through Dr. Dietz and his team.  My job isn’t to know how it all comes to fruition,  but I know I can ask for things that I think are humanly impossible. “ …I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible“.(Matthew 17:20)


Dr. Dietz checking out those sweet piggies




So when you ask us “did you have a good trip?” or “How is Scout doing?” the answer is “Good”.  But the long answer today is in this blog post.

Continually we thank all of you for supporting our family and specifically Scout. Including, but not limited to some anonymous people that sent my mother up to Baltimore to watch Ash so we could fully concentrate on Scout’s needs during her appointments. Your love and the way you show it gets us through so many things.  We know that God takes care of us through you in the craziest most incredible ways (I have stories). Thank you for being love, for God IS Love.


We came home to a clean house, cards, a few groceries, and soup.  Love, I tell you.  Love.











  • Posted on January 07, 2014

iPads are our friend in waiting rooms

We are waiting to go back for Scout’s CT scan right now. Please pray for Scout to be brave through the process and that the results are that her body is stronger and healthier than any of us could have ever imagined. Thank You. All to the glory of God.


  • Posted on January 05, 2014

Time for your checkup (McStuffins fans know what I’m talkin’ about)


Friends, we are taking our brave little lion to Baltimore tomorrow to have some check-ups. Please pray for her. Pray that she is healing better than anyone could ever imagine, that she has NO fear during the procedures, and that this is all to the glory of God. We love you all. Hopefully, we’ll get to keep you updated on the trip.

Mandy, Gabe, Scout, and Ash

  • Posted on June 12, 2013

The summer of her life

We celebrated our 13th wedding anniversary yesterday. In this previous post, you can see what was happening during the past 4 of those. But really here’s what I want to tell you about before my children wake up…hold on…one just woke up.

I’m back, but I’ll try to make this quick. First let me tell you why I don’t update much these days…hold again…

Day 2 of attempting a post.

Rejoice with us. 2 years ago today this happened:

One year ago today, this happened:

Big Sister

We thank God for these awesome blessings. We thank you all for your continued prayers and support for Scout.

This is the first summer in her life that she isn’t in the hospital or recovering from a procedure or hospitalization. So we are taking that blessing and determined to give her the summer of her life (so far).

I started an Instagram account if you’d like to follow her adventures and day to day. It’s easier for me to post pics than to make a blog post these days.

Here’s the link:


It’s private, so you’ll have  to ask to follow her and then I’ll add you.


Now excuse us while we celebrate life, love, and a little boy’s first birthday.



  • Posted on February 25, 2013


As I say often, we try to take advantage of the good days as much as possible.  While I’m putting this post together, Scout is sitting by me on the couch, with a fever, watching ‘Wonder Pets’.  She won’t admit she doesn’t feel good,  but a high fever is kind of a good indicator that she’s not up to par.  She’s fine,  I’m just telling you that to say that days like last weekend’s are cherished even more so.

Let me tell you about one of the most magical places on earth. It’s called The Center for Courageous Kids. It’s a camp facility that was created specifically for critically ill and chronically ill kids so they can get a break from their medical schedule to just get to be a kid for a while. It’s free to all families that attend, and really, no words can describe how wonderful this place is.

Gabe first heard about CCK a year and a half ago when he was asked to make a video for the facility. He came home that night and told me that we HAD to bring Scout there. And so we did. And it was good. I think the best way to give you an idea of this place is to just show you the video.

Serendipitously, the orthopedic nurse interviewed in the video casted Scout’s legs every week for the first six months of her life (This is from the first casting). She just happened to be volunteering at camp the weekend the video was shot.

This was our second year to bring her, and I’m tellin’ you, it’s hard not to get a lump in your throat when you look around at these kids having themselves a big ol’ time. I really have trouble describing how awesome it is. All I know is that Scout isn’t in therapy, and she’s not at a doctor or a hospital. She’s just a little girl having fun.  I submit to you this evidence:



Observant Bro

Bowling Champ

Sleeping bro




Lunchroom/’Captain America Pops

Dance Party

(she had three counselors surrounding her so she could dance and not get knocked over by anyone. These terribly lit pictures are the ones that get to me the most.)

Just a happy little girl

Lastly, this video was shot the night Scout came back from camp while we were staying over at her Grandparents’ house for the night.  The structure of programming at camp apparently made an impact on her.








  • Posted on January 02, 2013

Happy 2013

Behind the Scenes

McCauley New Years 2013 from lilDRAGON on Vimeo.

  • Posted on December 03, 2012



So, lets talk about teeth for a sec. One of the procedures done during Scout’s surgery in September was a tooth extraction. The dentist wouldn’t know exactly what she was dealing with until she was able to really get inside of Scout’s mouth and get x-rays and all of that good stuff. So Gabe and I were definitely expecting some teeth to be pulled. Scout complained daily about her teeth hurting.

I got a call during Scout’s surgery from the phone in the waiting room from her dentist. She said something like, “It looks like I can only save two teeth. Do you want to keep them, or do you want me to pull those too?” I was all like, “(calmly)…all but two.” For some reason this was still kind of a shock to me that THAT many teeth were bad. Of course when that call came, Gabe had left the area to do something at the time, maybe a potty break, helping with Ash, make a phone call or something, I don’t remember, all I know is that I had to make a decision quickly and without him. And so I had another question for the doctor- Well, it was more like an answer question, “…Keep theemmm? I don’t know, what do you think?” Doctor Alex answered quickly, “I think it would be better to keep them, but I want you to think or be prepared about how she will look.” I could answer more concisely knowing it was a cosmetic thing “Keep them”.

So when Gabe returned to the room I took him aside to tell him. Like most things that happen with Scout, it all needs to soak in for a minute before we react and we bring ourselves back to the proper perspective. Our friend Scott had very recently just lost his leg in a construction accident, and another dear friend had a sudden heart-attack at the age of 34 leaving a wife (also dear to us) and two little girls, there was an 8 month old little boy named Andrew, in that very hospital who hadn’t seen the outside world because he was waiting and then recovering from a heart transplant, and our friend Erin and her kids are facing a new life they had never expected. Once we thought about that, it was so easy to say. “It’s just teeth.”

After Dr. Alex was done with her part of the procedure, she had a conference with us to tell us how it all went. Of course Gabe, being Gabe second guessed the decision of keeping the two teeth. Dr. Alex said teeth is bone and she would like to keep that bone there if it’s salvageable. I wondered how Scout would eat, and if there were dentures or something she could wear. Dr. Alex said that there would have to be something to root the dentures to, so no, she will just manage with these two teeth until her adult teeth come in. We talked about some more things, and then she gave us a small manilla envelope that contained the extracted teeth.

Fast forward a few days later. Scout had been released from the hospital. Gabe had looked, but I finally had the emotional strength to look at the teeth in said envelope. He showed me one by one. It.Was.Remarkable. The pain that she must have been in. I cried thinking of how she went through so much pain and how well she handled it. I don’t know how she functioned. Think about when you have a bad cavity and how much it hurts. Now think about just about every tooth in your mouth being absolutely rotton. Some of those teeth decayed all the way down to the root.

Let me tell you. She doesn’t eat candy or chocolate (she likes the idea of them, but won’t really eat them), we brush her teeth (but she would cry when we did because of the pain), and she’s not doing meth.

How does this happen? You may ask. Well I’m not sure, but our guess is that her body just doesn’t make the tooth enamel it needs to protect her teeth. Plus, maybe the daily meds she’s on contribute to that as well. What about her adult teeth? Well, we’ll just have to find out. Of course there is nothing else I know what to do except pray that they are stronger when/if they come in and of course the normal dental hygiene stuff).

It didn’t take long for us to get used to her new smile. It makes me teary-smile back at her most of the time. In my opinion, it’s pretty adorable. We had to figure out how we were going to explain to her why she didn’t have any teeth anymore. She was pretty cool with, “Remember how much your teeth hurt? Do they  feel better now? ” I’m not too big on making a big thing about Santa, and the tooth-fairy and whatnot, but that tooth-fairy came to our rescue in this instance. Scout had been watching the Yo-Gabba-Gabba episode about the tooth fairy ALOT before the procedure (on her own mind you). Her understanding on what happens is that the tooth-fairy comes, takes your tooth, she gives you two gold coins, and a kangaroo.

So, the tooth-fairy came. Her cousin, on his own accord, wrote the above letter explaining Scout’s situation to the fairy of teeth. She’s only visited once so far. We don’t want to overwhelm Scout like, ‘here is a mouthful of your teeth, and here’s a million dollars’. Plus she’s three. The only way she would expect lots of money and presents is if we made her think that she should expect lots of money and presents. Don’t get me wrong, Scout deserves the best. And we try to give her the best, but in other ways.

Since her surgery, her speech has improved. I can tell she has more confidence in herself in many ways. And she’s sillier and plays much, much more. My theory is that she was in so much pain before, that she didn’t know what feeling good actually felt like.

Thank you all for your continued support and prayers for our girl and our family. We have a big surprise in the coming weeks for Scout and once we let her know about it, then we’ll keep you up to date on that adventure. So mums the word with Scout if you know, K?
Peace, love and light to you all. We are grateful for you. And we are prayerfully thankful for the ways that you all are in our lives and the ways you help Scout.



  • Posted on October 09, 2012

Bubbles and Rasberries

Scout is healing up pretty well here at home. I think I’ll have to do a separate post sometime about Scout’s teeth, but I wanted to share some nice moments and let you know she is doing well.  There is so much hurt and negativity that this world has to offer, that in order for us to not be sucked into that vortex, we try to focus on the small victories and blessings of the day.  There is a lot of good happening too, we just don’t hear about it as much because it doesn’t get ratings or sell papers.  I offer you some light for the day, and a video of one kid’s discovery of a simple pleasure that this life has to offer.


Her eyes are healing up and looking much straighter.  No more daily eyepatch wearing for now.



Scout has been talking non-stop about visiting the Animal Kingdom.  Here she is pretending her bed is the bus that takes you there. She insisted her brother join her and that we all wear hats.  She has even made up a song with the lyrics “I was born in the Animal Kingdom, I was born in the lions den, I was born in the circle of life



Camping in the backyard


Since her cleft palate repair, Scout has discovered two very important things in childhood -blowing rasberries and bubbles


And finally, This



  • Posted on September 26, 2012

recovering at home

Getting home from the hospital is just one of the steps in the healing process. We are just so glad that Scout did well enough to come home so soon (in Scout terms). She’s having very grumpy/moody times but we are also seeing that smile too. She needs a lot of extra hugs and snuggles right now. Gabe’s mom and my sister have been here all week to help with Ash, Scout’s bro. I cannot even fathom how we could function right now without their help. Gabe had to go back to work immediately, so I would have been left to try to handle a little girl in a lot of pain, and a 3 month old all by my lonesome. So we are very grateful for their presence. Scout still has a ways to go with her body healing, and then she has some new challenges ahead of her. She will have to re-learn how to speak and eat. She has two teeth and that hole in her mouth is hopefully closed up for good.


Scout and Aun-T. Not sure why there are 900,000 electronics out all at once,  but whatever keeps her content right now is fine with me.