February – Apples and Oranges.

***Blog Repost from February 2014***

Apples and oranges.

People say all the time when you are comparing things that are so different that you “can’t compare apples to oranges.”

And that is supposed to make the argument just.

February is Heart Month.

Congenital Heart Disease Awareness month.

The month where you may see hearts about with zig zags through them to signify a broken heart…and a saying about to “Ask for a pulse ox!” or “Ask at your 18 week anatomy scan if there are 4 chambers seen in the heart, if the stomach is on the correct side of the body, if the doctor is able to see the great vessels!”

You may get inundated with these little reminders and then see the pink cheeked kid along with the reminder and think, “CHDs can’t be that bad.  Look at that kid.  He’s doing great.  At least it’s not like cancer.  Now that is bad.”

Apples and Oranges.

I hate – yes HATE – when people say that CHDs aren’t as bad as cancer because the kids can do relatively well.

I hate when people say childhood cancer is not as bad a CHD because at least there is a cure for it.

I hate when the statistic about how funding is 10 times less for CHD than childhood cancer or vice versa is thrown around.

I hate when I hear that CHD occurs in 1 in a 100 lives births (that is a generous saying because well – some never make it to birth).

I’m all for awareness.

I don’t like when we have to compare CHD to childhood cancer to get our point across.

The point being that CHD is a lost illness.  It’s lost in the media, it’s lost in the funding, it’s lost in the conversations of those things that are devastating.

Because it’s apples and oranges, right?


There is a common denominator with these two things – childhood cancer and congenital heart disease – our children.

Our children are suffering.  Our children are fighting battles in hospital beds.  Our children are going through risky and dangerous surgeries.  Our children are taking experimental medications. Our children are dying.

Our children.

I speak so much about CHD because I do not think people are as aware of it as they need to be.  I think the problem is that we may be making people aware of what a CHD  and how it affects me but the muscles behind our stance is weak.

You – my dear blog readers – aren’t truly connected to it like us in the Heartland.

I bet you know someone or you know someone who knows someone that battled cancer or is fighting cancer – maybe an adult or maybe a child.

But, it’s that six degrees of separation that make you connected to the awfulness that is cancer.

And, welp, there is a good chance the first time you heard about a congenital heart defect is when you started following Evan’s story.

And you “know” me – but not really.

You “know” our story – but may not feel the connection to CHD as you do cancer because it’s not a part of your reality.

That’s where we come in.

The Heartland.

That’s where we step in and turn awareness into action.

This is our time to blow up news feeds on Facebook, pin boards on Pinterest, write blogs about their fight – so maybe – just maybe – more of the 1 in 100 – decide to speak up about the #1 childhood killer in the world.

Maybe – a neighbor or a friend or a student in your child’s class – will feel confidence in letting their scar peak out from behind their shirt.  A scar that may not have been shared due to shame, due to fear of judgement, due to lack of education.

Maybe you’ll share our blogs, our status updates, our conversation – and you’ll tell your friend or your kin that is about to welcome Baby to the world – and you casually remind them to “ask them to do a pulse ox” and perhaps it may save a life.

We desperately want to connect with you.

We want our stories to make an impact in your world.

We don’t want to compare our child’s plight to another child fighting cancer because we feel like maybe this is the way our point will come across.

Because cancer is awful.  It takes lives.  It takes spirits. Kids don’t make it.

That’s the truth.

When you see our rosy cheeked children run and play, don’t think that their fights aren’t as awful.  Don’t think that their spirits haven’t been beaten.  Don’t think that their lives may be spared.

Because Congenital Heart Disease is awful.  It takes lives.  It takes spirits. Kids don’t make it.

Apples and Oranges.

Let’s not compare the two any more.

Let one be a reminder to another – that behind the statistics, behind the awareness, behind all the points we want to get across to you – that there is a common thread between the two.

Our children.

Our babies.

And when it comes to that, their fights have no comparison.



My Warrior

 Evan – February 2015

Response to Amy Glass

My response to an article that made my blood boil and heart sad.


Are you by any chance related to George Glass.

You know..the one from “The Brady Bunch?”

Because, I didn’t think people like you existed in this world…much like the elusive George Glass.

I’m naive though. And dumb.  I’m just  stay at home mom to my two kids.

Never mind one is medically fragile.

But, I’m sure you consider my medically fragile kid as a wart on this society. At least the society you long to be a part of…one where beautiful women do nothing but travel, have high powered jobs, and live for themselves.

Because, well, that is success.

I saw your profile picture…you ai-ght.

You probably have lots of dates but none of the men are good enough for you…I’m glad you don’t entertain the thought of marriage.

Because, in your book, that is a failure right?  It’s a woman’s way of saying, “Rescue me, oh dear prince!”

Funny thing is…marriage has been the hardest thing I’ve done to date (next to raise my sickly kid).

I have to choose every single day to make it work.  It requires more than clocking in at 8am and making deadlines.  This isn’t a commitment, it’s a covenant.

I do, however, lack the excitement you probably get with your revolving door of dates.

I kiss the same face everyday…as I have done for 10 years and probably will do for the next 70, 80, hopefully 90 years (I plan to live be as old as Mr. Burns).

My hero.

At the end of an exhausted day, my husband comes home to a woman that will listen to him, crack open a beer, and serve him a home cooked meal.

Every night he holds me and tells me he loves me…and means it.

When life gets hard…I don’t look for someone to help carry the load of the burdens because we share those burdens equally as we have done for the many moons we have shared.


I love this part of your blog.

“Do people really think that a stay at home mom is really on equal footing with a woman who works and takes care of herself? There’s no way those two things are the same. It’s hard for me to believe it’s not just verbally placating these people so they don’t get in trouble with the mommy bloggers.”

Dang girl.

Get it.

You are absolutely spot on.

I am not on equal footing with a woman that works and takes care of herself.

Because most days…I can’t even stand up on my own two feet from exhaustion.

I don’t just take care of me…I have to take care of my kids (or you would you prefer for me to refer to them as “life failures” – you just let me know what suits you best).

What if I told you I chose to leave medicine to raise my children?

What if I told you I left a self started business to care for my medically fragile son?

Is that weakness?

Is that not good enough as sitting in a conference room looking at a power point presentation or looking a computer screen filled with spread sheets and those fancy other applications – like Word Perfect or Office Live?

I get that my yoga pants aren’t as stylish as a fitted suit from NY and Co.

I get that my morning routine of coffee, breakfast, and Dora is not as exciting as an espresso withe NY Times.

But, it doesn’t mean what I’m doing isn’t work.

It also doesn’t mean that what my everyday looks like isn’t as challenging and mentally stimulating as someone who deals with TPS reports.

Excuse me while I toot my own horn (this, though, you should feel comfortable with…you do this well).

I have been told my some of the best minds in medicine that I have an understanding of the human body that rivals some of their colleagues.

I can discuss journal articles on medical advancements in the pediatric cardiology field as well as any physician out there.

Want to discuss the feeding difficulties of a child who has had countless intubations along with craniofacial reconstructions?

I got it.

What about how how the FDA regulates food and how bacteria growth in different temperatures effects how large grocers choose new product lines for their stores?

Or business plans for a restaurant?

Or business plans for a retail line?

Or business plans for a medical clinic?

Or the ins and outs of private insurance companies vs state funded medical plans?

And I can do all that while watching “Sesame Street,” stick a fresh, organic meal in the crock pot, iron my husband’s shirts, and wipe the noses of my 4 and 2 year old.

******I am flippin’ AWESOME!!!!*****

Here’s another little nugget I love…

“I hear women talk about how “hard” it is to raise kids and manage a household all the time. I never hear men talk about this. It’s because women secretly like to talk about how hard managing a household is so they don’t have to explain their lack of real accomplishments. Men don’t care to “manage a household.” They aren’t conditioned to think stupid things like that are “important.”

Damn girl.

You are so spot on.

We – the ignorant women folk who choose to have kids and a husband – choose not to explain our “lack of real accomplishments” is because quite frankly…we feel like we are failing every day.


We feel like the decisions we make from the mundane ones- like to what to pack in their lunch to the life altering ones like what open heart surgery should my son have next -are going to result in the wrong result. Thus failing.

Because, unlike the decisions you get to make everyday, “Espresso or capuccino,” “Brazillian wax or au natural,” “Pinot noir or pinot gris” – these decisions matter.

Our decisions matter.

Men…well…I’ve been married to one for awhile now…aren’t conditioned to “think stupid things” because often these decisions are made by the woman.

The mother (or in your language – the idiots).

The one who researches, and agonizes, and thinks and over thinks.  I’m not saying that all men are like this…but in my small, sad existence..it’s what I have experienced.

Because he trusts me.  We are a partnership.  Equals.

And honestly, I have a man that has said me to me, “You are better at this.”

The this being the decisions that matter.  Because our decisions cause a ripple effect in our children’s lives.

And he knows that his high powered job that his decisions may have major repercussions…but not life altering ones like the ones I have to make.

I am one of the fallen, Ms. Glass.

One of the ones who drank the Kool Aid in thinking that marriage and children are the next best thing.

But, know this…

I have stood on the steps of Big Ben and heard the chimes of its enormous clock.

I have strolled the streets of Paris and eaten delicious foods in her cafes.

I have “partaken” in the offering of Amsterdam and been shocked by the Red Light District.

I have worn parkas in the Alps.

I have laid my hands in prayer of those suffering in Asia.

I have taken temperatures, kissed boo boos, of the ill and downtrodden of those in the Philippines.

I have danced in the streets of the Caribbean and broken bread of those living in huts.

I have climbed mountains and seen sunsets in different time zones all over the world.

I have driven from California to Florida…and back again.

I have seen Broadway plays, walked the Five Points.

I have stood in front of our nation’s capital.

I have made deadlines.

I have stared at computer screens.

I have  listened to heart beats and made diagnoses.

I have lived.

Despite what you may say, ”

“The dominate cultural voice will tell you these are things you can do with a husband and kids, but as I’ve written before, that’s a lie. It’s just not reality.

You will never have the time, energy, freedom or mobility to be exceptional if you have a husband and kids.”

I did those things when I had kids…and a husband.

That’s reality.

I don’t have the time, energy or freedom or mobility to live the life you think is “exceptional.”

Because in your world..I need to be absent of the two things that make my life extraordinary.

My husband and my children.

You are right, though.

“Women will be equal with men when we stop demanding that it be considered equally important to do housework and real work. They are not equal. Doing laundry will never be as important as being a doctor or an engineer or building a business.”

Women will never be as good as a man if we continue to look at our place in the home as equal. Wives and mothers alike – and our responsibilities at home – are not the same as being a doctor or engineer or building a business.

Truth be told…our jobs – women who choose family over big business – are not even in the same league.

We are the doctor.

We are the engineer.

We are managing businesses.

You just don’t see it that way.

Because you haven’t been asked to take on the responsibility of being a wife and a mother.

And I just don’t think you could hack it.

Nor do you deserve it.

*To my friends who choose not to have a husband or a child…yet…still see those women who choose to have one or both as equal to you…this does NOT pertain to you..just the narrow minded lady related to George Glass*


The waiting place.

Now that Christmas over.

The New Year is over 3 weeks old.

And Evan’s Dora and Diego failed Pinterest party attempt is done…

I have nothing to distract me from the wait.

The waiting place.

The place we all hate to be in in the Heartland.

The place where our mind travels to the far corners of the “what ifs,” the worse case scenarios, the painful statistics…

The place where we have to face what lies ahead for our tiny heroes and the reality of what’s to come.

The difficult part of the waiting place is this time around is that we are home.  We are home and I am staring at my little dude in his guitar, zipper jammies playing with his Legos (ok – he is just throwing them at me) and he is tugging at my pajamas signing for milk.

The two times we were headed into a surgery we landed ourselves a hospital stay where Evan was really, really sick.  And the only thing we could do to save him is have a surgeon open up his heart and operate.  I prayed for surgery day to hurry up.  I counted down each day with excited anticipation…because I could see  my boy struggling in his hospital bed.

This time is different.  It’s very, very different.

We just celebrated a birthday where he bounced for an hour. I saw in friend’s eyes their amazement at Evan as he clapped, sang, and danced…I could feel them asking the question in their head,”I can’t believe he needs to have open heart surgery.”

I ask that question daily….hourly…every time I glance his way.

There are challenging logistics we face this time around that we have never had to face before.


Being away from family and friends…and the support that they give us.

Our family being torn in two while I stay behind in Boston for Evan’s recovery and Craig and Iz return home so he can work and Iz can have a normal routine.

Financial issues like plane tickets, hotel stays.

Everyday things like who will take Iz to school?

How can we swing Craig leaving for work at 6am and Iz who doesn’t have to be at school until 8:30am?

What are they going to eat?  How much food can my my freezer hold so Craig isn’t “Chick fil a-ing,” “Pizza-ing,” “Grilled chees-ing” it every night.

How do I pack for Evan and I?  We will be away for 2 seasons – 2 friggin’ seasons – part of winter and part of spring.


The biggest thing I face is how I am going to hand my boy over…again.

Hand him over for the the biggest, riskiest surgery to date.

Hand him over as I hit my knees in prayer hoping and praying that this “works.”

That this big risk we are taking with his life….is the right one.

I am holding onto hope and to faith that we are doing the right thing by him.

As I listen to his breathing become heavier and heavier….I just continue to envision a better Evan walking out the doors of Boston Children’s Hospital.

We are month away.

Part of me needs the day to already be here so I don’t have anymore time to worry about it.

Part of me never wants the day to arrive so we can spend our days at home watching Dora and Diego and building Lego cars.

There is so much that needs to be done….so much that needs to be planned.

In all that planning, though, there needs to be lots of down time of just hanging with my dude.

There needs to be cuddles and kisses and memories made.  There needs to be that.

Because we just don’t know…

My friends in the Heartland have been coaching me and guiding me on how I need to get through the days ahead.

I need help getting through every day things without breaking down.

I need to be able to function normally.  Truly.  I can’t make meal, fold laundry, pick up toys without falling to pieces.

I need to be able to make it through a dinner without Iz asking me, “Mama – are those happy tears or sad tears?”

I need to find a way to function and be present.

While we wait, I ask – beg – for prayers for my spirit.

In the days to come, I will post very specific prayers on what to pray for.  I will post every need.  I will post every desire for Evan.  And I will ask you to share those prayers with your church, your friends, you family.

Because, while I – we wait – for February 24th to arrive – another Miracle Day – while my heart is in turmoil, while the rest of the world continues to turn as mine feels like it has stopped, while we wait for the day Craig and I have prayed for since before Evan’s birth – the day his heart will be repaired…

I have to remember that mountains are already being moved…that in this wait there is already healing.

That in this wait…there is already prayers being answered.

That in this wait…there is already miracles happening.


So the LORD must wait for you to come to him so he can show you his love and compassion. For the LORD is a faithful God. Blessed are those who wait for his help.

Isaiah 30:18





Blessed to be 2 today!

I’m up early today, buddy.

Daddy left for work already – it is just a little after 5am.

I’m listening to your breathing through the baby monitor and am anxiously waiting to hear your morning babble of “Mama,” “milk,” “football,” and “uh ohs,” that you do every morning as your welcome a new day.

What a year we have had, Evan.

I can hardly believe I am going to kiss you this morning, pile your blankies on my head to make you laugh, and then scoop you – my now 2 year old! – up in heap of kisses and hugs.

We had an amazing time celebrating your birthday this past weekend.

It was everything I imagined.

The look on your face when you walked into the room – the monkeys, elephants, lions, and other animals sitting atop tables – and your buddies – Dora and Diego (balloons) floating nearby as you ran and squealed, “MAMA!!” as you ran into my arms – is one I have tucked away safely in my “Evan” box that sits snugly inside my heart.

As I welcomed guests to your “Adventure,” I smiled and thanked them for coming, I could hear your excitement, your laughter, your singing…your joy…as you bounced with your friends and family.

Your joy.

We celebrate your birthday big…as we did last year and this year…because as big sister says, “It’s our family birthday right?”



I don’t know if you realize, Evan, what a big piece of the puzzle you are in this family.

You were the missing piece that finally made us whole.

You bring laughter, silliness, messiness, and boundless fun into our home.

You bring all these things with no hesitation…despite all you have been through.

You don’t know what awaits you next month….but your Daddy and I do.

We try our best to be present for you instead of focus on the days ahead.

Because, well, you deserve that.

You – we – deserve a day that is wholly focused on being carefree – laughter – fun – joy.

And as we go through the challenges of your normal – each birthday is celebration of each milestone you achieved within the last year.

This past year…you endured a 10 hour craniofacial surgery, a recovery where you stopped breathing 3 times, an ER trip where you were diagnosed with an awful stomach bug.

You got poked an prodded at cardiology visits…and a heart catheterization in a hospital that was foreign to you and us.

You learned how to drink.

You learned how to eat…and man…do you love it!

You learned how to walk…now run…and jump…and climb.

You learned how to color…your favorite color is “reh.”

You are learning how to talk….”Mama” being your favorite word (as it should be…always), “Dada,” “Football,” “Guitar,” “Eat,” Milk,” “Wa-wa (water)” – those are the major players….but your language and your signing is improving every day.

You love to play pretend. You love to make “music” with your toy instruments, pot and pans, anything that you can beat on the wall or the floor…we call that music in this house.

You dance like a pro…well…you dance like your Daddy.  Mainly just bending your knees…but it is much cuter on you than it is when your Daddy tries to break it down.

You are all boy – dirt, trucks, baseball, football, basketball, cars.

You are everything I ever wanted…and everything I didn’t know I needed.

Today is technically your birthday…but this day…2 years ago…is the day I was born, too.

I was birthed into a world of special needs…the Heartland became my new family.

The past two years I have learned to talk, to walk, to eat and drink in all that is our new life.

I have learned to play pretend…acting as if all is well.

I have memorized the melodies of the “beep beep” on feeding pumps, oxygen monitors, hospital equipment.

I have learned to dance.  I have learned to laugh.  I have learned to find joy….despite all you have been through.

I am just a fan and follower of your story…I just get the privilege of seeing your story unfold minute to minute.

You endure every procedure. You fight each surgery to stay alive.  You do.  As many, myself included, watch in awe of your strength and fight.

So, today, on your birthday, we will celebrate all of you – your struggles, your broken heart, your put together smile, your endless laughter, your will to live, and your strength.

Today we celebrate you.

And we will blow out your birthday candle together and I will wish for the both of us….for many more birthdays to come.

Happy birthday, buddy.




There’s something about having choices that makes us feel empowered.

It’s about knowing that you have a say in the decision.

It’s also about taking responsibility for the choice you make.

The most difficult part of having a child with a heart defect is that the choices we make for him/her now will effect them as they – God willing – become an adult.

It’s different than having an illness or battling disease.  The ultimate goal in both of those scenarios is to offer treatment in the hopes that your child is cured or go into remission and go on to being an adult and living their life…albeit…checking to make sure the disease or illness doesn’t return.

But, the choices we make – in the Heartland – for our children – are choices that could potentially change the course of their lives.

And the most difficult part of it all….our child has no say.

Our child has no say to every “boo boo” we inflict on him.  He has no say in uprooting him from his daily routine of “milk and Dora on the couch” and playing “Go Gos (cars)” and “Fumbles (football)”. He has  no say to the medication that tastes “yuck” that we try and mask with Gummy Vitamins or spoonfuls of honey.

He has no say to any of it.

As parents, we are supposed to look at our toddler with footie jammies and ask the question to ourselves,”What can we do now…to make sure he has the best chance at a normal life.  What can we do now….that God willing…years from now….we can look at our son and say, ‘We did all that we could.’.”

For past several months, Craig and I have had the opportunity to pray over and research two choices for Evan.

With the help of our medical team here in Dallas and the help of new faces and minds in Boston, we were able to gather data and make some difficult choices for our son.

I plan on doing a “medical” post later to fully explain what is to come for Evan and what is special about his heart and his body.

But, for now…let’s do the basics.

Choice #1: Keep Evan on the surgical path he is on now.  Evan is what they consider single ventricle.  Our team in Dallas – back in August 2012 – felt like they could repair his heart – but when the surgeon came out of the surgery – he felt like going the single ventricle path was best for Evan.  Currently, he has tolerated and quite honestly, thrived, with his heart and circulation.  The next stage of this surgery is what is called the Fontan.  Right now, simply speaking, only the “top” half of his body is connected to his heart.  The Fontan incorporates the liver and brings in the “bottom” half of his body.  In a normal heart, a person’s oxygen level in the blood should be around 96-100.  Evan, with his heart the way it is now, is currently living and thriving with oxygen levels between 75-85.

It’s not an ideal situation – but it buys time until the next staged surgery.

Another key to this puzzle for Choice #1 is Evan’s syndrome.  If you remember, Evan was born with something called “Heterotaxy Syndrome.” In normal speak, his organs aren’t in the correct spots.  His heart is on the wrong side.  If you watch Grey’s Anatomy, this season they had a man come in for the Halloween episode, that they called “Backwards man.”  Christina Yang oohed and ahhed over him.  Because, well….you don’t see “backwards man” often – 4 in a million times – to be exact.  Because of all the specialness of my boy, there is a greater risk for Fontan complications to occur.

The key to this pathway is that it is palliative.  Life extending.  We are buying time until Evan needs a heart transplant.  The Fontan will fail – it is just a matter of when.  The when could be in a year, 10 years, 20 years, 60 years.  It is all patient dependent.

The Fontan also has some serious, terminal complications that affect the liver and the lungs.  There is no telling when or who they may happen to…but it’s a downfall the Fontan circulation.

The good thing about the Fontan is that there is potential for a long life without anymore surgical intervention and just medications. The surgery is relatively straight forward and the recovery is typically a couple of weeks. The Fontan is 30 years old…and there are some patients out there living full lives.

Choice #2: Repair Evan’s heart.  Boston has given us some promising news.  After our visit in December, they gathered the data they needed and came back to us saying that they could “repair” Evan’s heart.  The repair, however, would be much more involved.

Much longer time on bypass (the heart and lung machine that they use when the stop – they will stop my son’s heart – his heart for repairs) and the risks involved in being under bypass for so long.

The surgeon in Boston has to create heart valves that Evan lacks.

He has to replace a valve that will need to be replaced again the future – hopefully – as an adult.

He will have to “make” parts of Evan’s heart that aren’t there.

He is potentially repairing my son’s broken heart.

This innovative surgery is young.  The oldest patients they have now are in their teens.  They are in their teens but they are thriving.  Many are living full lives without any kind of heart medications.

In the early years of this surgery, many, many patients died.

But, it has been perfected by the surgeon in Boston and his surgical outcomes are very, very good.

The key to this surgery – that if all goes according to plan – Evan could have a normal life expectancy.

We could avoid him needing a heart transplant. We could avoid complications that the Fontan (choice #1) has because his circulation would be almost as normal as mine and yours.

But, the downfalls, the surgeon has to create so much of my boy’s heart. He has to fashion leaflets of valves, walls of his heart….and my boy has to be able to tolerate that.  The recovery could be extremely difficult.  Much more difficult than I care to share.

The valves may leak and may need repairing down the line which could mean more open heart surgeries.

But, none of that may happen….and Evan could go on to live a long, full life.


Impossible choices.

Craig and I have prayed about this and talked it over with the best hospitals in the world.

We have cried.  We have been angry.  We have been hopeful.

It comes down to a moment I envision in my mind all the time.

I am sitting in a bed. I’m older….much older. My hair is gray.  I’m wearing glasses.

I see an adult man walk up to me.  As he approaches…I see the little scars on his lip. I see the flop of his hair and his killer, crooked smile.  It’s my boy.

He sits down next me, holds my wrinkled hands in his, and I put my hand to his face.  I say to him like I say to him now, “I love you, buddy.  To the moon and back.”

And he smiles at me and tells me, “I love you, too.  And I know all you did for me – for my heart – you made the best decision for me.”

Doing all that we can with the impossible choices that we have.

So, on February 24th, my boy heads into his next open heart surgery.

We are asking Boston to make miracles happen in my boy’s heart.

We are asking for them to “fix” his heart so mine will stop breaking.

We are uprooting our lives as a family of four…in hopes that years and years and years from now…our family of four will still all be here.

We are trusting a medical team of doctors and nurses to get my boy through a very difficult recovery.

We are giving a surgeon, whom can arguably be called the best pediatric cardiothoracic surgeon in the world, we are giving him the absolute privilege of operating on my boy.

We are asking our boy to fight unlike he has ever fought before.

We are praying for miracles.

We are praying for the impossible choice to be the right one.

 “With man this is impossible, but with God all things are possible.” – Matthew 19:26


Happy New (old) Year

I’m reading lots of blogs and articles about how to go into the New Year.

Leave behind the past.

Move forward.

Let go.

But, I just can’t.

I can’t and don’t want to let go of this past year and the memories I’ve made.

It has been a dynamite year.

It has been a difficult year.

And its in both – the heartache I experienced and the boundless joy – that I can enter into the New Year – 2014 – with hope.

2013 for our family was amazing.

2013 for our family was difficult.

It was filled so much normalcy – so many days of mundane, of regular, of monotony – days that I longed for in 2012.

And 2013 delivered.

I can’t forget, though, that those days didn’t come without some work.

Evan had his huge 12 hour cleft lip and palate surgery in March.  A recovery where he stopped breathing 3 times.  A recovery where we had his first emergency room visit and stomach infection.  And a lot of tears and hard work to get him to eat and drink like a regular kid.

But, then…it was.

It suddenly just was.  It was suddenly a time of normal.  Where I didn’t hook up feeding tubes to his stomach…count every milliliter of special formula…calculate and weigh food to get calorie counts…do daily weights to make sure he was gaining weight without the help of his feeding tube.

He ate.  He drank.  He played.  He walked!

And slowly, we – the rest of the Hounsels – found ourselves fall into the normal that didn’t seem like a strange normal but just plain, vanilla normal.

Our best girl was allowed to go back to school and was taken out of isolation we put her in for the sake of her brother’s health.  She found friends, laughter, schedules, alphabets, counting, backpack, crayons.

I found joy in grocery store trips and pre-school drop offs where I toted around my boy on my hip and held hands with my girl as we looked both ways to cross parking lots.

I found joy in climbing stairs and slides and wood chip filled shoes on the playground without stares from strangers wondering “what was wrong with the little boy whose smile was so wide with a feeding tube coming out of his nose.”

Craig and I found normal in a vacation.  An actual vacation.

Our family experienced trips to the beach, the Happiest Place on Earth where Mickey, Minnie and The Princesses surrounded us with magic at every turn.

But, intermixed with all these joyous experienced were moments of grief.  Of heartache.  Of hardship.

I said goodbye to my grandfather.  I watched as my Dad stepped up to take the role of Patriarch of our family.

I fought insurance companies (and lost) and watch (present tense) climb higher and higher with each postman delivery. And bank accounts dwindle as we find ways to pay them.

My husband lost his job with a company he had been with for over 12 years and take a job for the sole reason to provide for his family and get insurance for his son…even if it meant less money….less prestige…

I answered tough questions from my girl as she comes to the realization that her brother isn’t “normal” and her inquisitions about all his hospital visits become more pleading…..like she needs me to reassure her that all will be well…when I can’t.

I watch (present tense) a slow and obvious decline in Evan.  With heavier breathing, lower oxygen numbers, bluer tint to his lips, his fingers and his toes I tickle and kiss..

We sent our boy in for an invasive heart catheterization just a weeks ago.

We were (are) faced with life altering decisions for 2014 for our son – our family.

I watched families in the Heartland lose babies.  I witnessed as friends – near and far – battle with illness, cancer, death, everyday life.

For some, 2013 was probably the hardest year…ever.

So, 2014.

Letting go of the old?  Moving forward.

I say, “No.”

I say use the weight of the heartache and the pain and the anger and the disappointment be a reminder to all of us that there is still hope and joy in those moments.

I say allow the sad memories to stay with you – as reminders that you came out of those moments stronger – just don’t let it linger.

I say remember the disappointments and don’t wish them away…but look at the step right after where the disappointment yielded something better than what you had anticipated.

Before you start spitting at the computer and shaking your fist at my picture saying, “This girl’s an effing joke…this year effing sucked and she has no idea what we have gone through….eff 2013.”

I just hold onto pain and to the crap as much as much as I hold onto the joy and the good because I know that one can’t exist without another.

I know that perspective isn’t about seeing the good…it’s about the seeing good despite the bad.

I’ve experienced things in this lifetime that I don’t wish on my worst enemy…yet I wouldn’t change my life for the world.

As our 2014 is shaping up to the be one where we will plead and beg for miracles….I know that in those miracles I may experience hardship, pain, and difficulty.  But, at the end of it…I know that intermixed in those  dark days will be days of light and hope.

So, let’s ring in the New Year, let’s bring in 2014 with a new found hope…and for some…as the beautiful “better” you have been needing and praying for.

Thank you 2013 for getting us to this day.

Happy New (and old) Year!




The stockings were empty, the gifts are unwrapped, Christmas cinnamon rolls were eaten…the toy fights had begun.

It’s Christmas morning.

I haven’t posted in a while. We had our big trip to Boston and then suddenly the holiday has been in full swing.

Gifts had to made, cookies had to be baked (and eaten), parties had to be attended.

The season of Christmas was among us before I even had a chance to throw away the Thanksgiving turkey.

With the toy explosion that has hit our little home, I had to find a place for the Tonka trucks, toy tools, and other toys that made loud noises and bright lights.

Evan’s room needed to be reorganized anyways.  I thought this would be a great time to do it to make room for his loot.

I started emptying out drawers and shelves.

Suddenly…a past I had forgotten was suddenly right before my eyes.

As I listened to a tornado almost two year old heart kid squeal with joy and whine and cry with agony that his sister would not let him wear her tiara and play dress up shoes, I found myself brought back to a time where I didn’t know if I’d get this moment.

Oxygen sensors, feeding tubes, breathing masks, binders documenting weight gain/loss, vital signs, hospital supplies…

I’m overwhelmed.

Not just overwhelmed with how far he (we) has come.

Not just overwhelmed with realization that we have another heart surgery in the next few months.

Not just overwhelmed that I was surrounded by a life of a seemingly normal toddler who has beat almost every odd.

But, overwhelmed by this day.

This Christmas day.

A girl was told she would give birth to a son.  She was told she would get to love him.  She was told to not be afraid….but she would lose her son.  He would die.  He would die for a purpose greater than anyone could fathom.

She was to raise Him up.  She was to care for him and love him.  She was told to be His mama until the day He would be called home.

Oh,sweet Mary.  Mother of all mothers.

I know your heart ached and felt joy all at once when you met your son on this Christmas day.

I know you loved Him with a fierceness unlike anything you had ever experienced.

And dear Joseph. I know you stood apart but close by to witness the child who was only your earthly son but you loved him with a passion. I know you loved him as all Daddies love their children.


Jesus…today is the day you came to be born so that all others after you and until eternity may live.

Your birth has brought such great hope.

Your birth has brought joy to those who were empty.

Your birth and your life has given meaning to this world that seems so painful and unfair.

I am overwhelmed.

I am overwhelmed by the meaning behind this day.

This Christmas day.

A mother who shared my fears for her son.

A mother who had no choice to wholeheartedly trust in her God.

A mother and earthly father who chose to raise up a child as their own and love Him no matter what the pain would be if and when they lost Him.

A child who loved life and lived a perfect life to cover up my imperfections.

I am overwhelmed.

Because I am reminded today that no matter what happens in this life, hope still remains in a Savior born on this day.

Merry CHRISTmas.


Luke 1:30-31

And the angel said to her, “Do not be afraid, Mary, for you have found favor with God. And behold, you will conceive in your womb and bear a son, and you shall call his name Jesus.

Romans 15:13

May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. 

Thanksgiving 2013

I’m not sure what to be thankful for this Thanksgiving.

If you read my last post, we shared a part of  journey with Evan that we are getting ready to take.

We are set to travel to Boston to get another opinion on his special heart.

But, in the midst of this storm…another perfect storm has been erupting.

Isabelle suddenly got sick – out of nowhere – she woke up Saturday with a cold.

The weather in Texas turned from the 80s to the 30s within 12 hours.

And, Isabelle and Evan would be stuck in the house together for a solid 10 days since school was out for the holiday.

Unlike in their everyday…Isabelle decided to share this time.

Unfortunately, it’s not toys…but her cold.

So, our boy is snot nosed, miserable, mess…but he’s in the comforts of his bed with his blankies to love on.

It was the perfect storm and now I have two sickies to love on this day of Thanks.

Here’s the funny thing about Thanksgiving…isn’t it easy to give thanks when all is right with the world.

The kids are listening and obeying like the should.

The house is picked up.

The errands are all run.

The laundry hamper is empty and all the clothes put away neatly.

The bank accounts aren’t stretched.

There’s a job to return to the next day.

Health runs in abundance for everyone…no medicine to worry about, no surgeries/chemos to plan for, no suffering of any kind.

What I’ve learned over the past two years…is that true Thanksgiving isn’t when all is right in the world.

True Thanksgiving is when your world is falling apart and the storm is raging louder, stronger, more fierce than you could ever imagine.

It’s when you are hanging on by a thread…when you have to tell yourself to breathe…when you are praying for- not the day to pass quickly – but the minutes to tick on.

It’s when you are searching and hoping and praying for a glimmer of hope and relief…for peace to fill you…when turmoil has riddled your life.

Thanksgiving day is – ok should – be about enjoying times with your loved ones as you feast on the abundance of blessings (turkey, health, etc).

But, for so many of us, today is about digging deep and finding a minute amount of gratitude to get us through the day…or the hour…or the minutes.

The funny thing is…for those who are suffering…it’s in their digging that they find that their minute amount of gratitude is actually a mountain.

They take every speck of thanks…and build it up.

I’m thankful for my house.  I’m thankful for the food in my fridge even though it may not be much.

I’m thankful for the clothes piling up.  I’m thankful for the sleepless night in my bed…because well…I’m in a bed.

I’m thankful for the extra pounds I’m trying to lose…because that means I haven’t been hungry.

I’m thankful for the fights with my spouse and the whining of my kids…so blessed to be surrounded by both and not alone.

I’m thankful for the medicine helping my child.

I’m thankful for the chemo helping my mom/sister/brother/spouse/child.

I’m thankful for the next heart surgery I get to hand my son over for..because that means he’s still fighting.

I could go on and on.  I could continue to look at the lives around me and help those I know and love build their mountains of thanks…giving them a speck of what seems like such a tiny bit of gratitude but is really just a small little part of the mountain of thanks that sits before us.

But, I don’t want to do that.  I don’t want to tell someone how grateful they should be.

Because, well, that’s obnoxious.

I do want to tell them…you…me…that even when chaos, and heartache, and pain, and suffering is what your life looks like right now…I see you.  I see in your tears, your grumbling, in your complaining, in your pain…that you are silently giving thanks for just being in this moment.

So today…in the midst of my storm…I’m thankful for you.  Thankful there are people in this world that can show me what true thanksgiving looks like and be reminders to others what we should truly be thankful for.



After the turkey.

It’s 6:30 AM and the sound of “Mama” from my best boy’s mouth is coming from his baby monitor.

I get up, get a sippy cup of milk ready, fill syringes for medicine, and pour myself a big cup of coffee for the day.

I walk into his room – dimly lit with the hum of the humidifier in the background – and my almost 2 year old jumping up in down in his crib – holding onto the rails to get extra air under his feet.

He smiles – lots of teeth now – and screams, “MAMA!” as loud as his little body can muster.

I pick him up, cradle him good morning, smell his sweet Evan scent, and off we go to start the day.

I’ve made it part of our routine to lay my hands on him and pray.  I close my eyes, ask for guidance, pray for health, pray against infection and illness…it’s part of the ritual of our everyday that I need him to hear.  Need him to know…that when I say, “God…please help me.  Help me and guide me to make the best decisions for him.  Help me and guide me to do what is best for him.  Help me and guide me to give him what he needs.  Help me and guide me to be the mother you have called me to be.”

It’s a prayer I speak out loud.  So he (He) can hear me.  Desperate.  Pleading.  Needing.

On October 13, 2011 – we found out about Evan’s diagnosis.  His incredibly special heart.  His incredibly special path.

Just like I do every morning…saying those same prayers….fervently…obediently…I did the same on that day 2 years ago.

I started praying for my boy then.  Needing God’s direction.  Knowing that sometimes the choices in this journey wouldn’t always be easy.  But, knowing that I had to make them.  Had to do whatever I could for the son I loved so dear.

This week is full of excitement for so many of you. As it should be.

The holiday season is in full swing.

Turkeys, ham, stuffing, friends, family….Christmas season quickly approaching.

As many are preparing for meals and gatherings…I’ll be preparing to board a plane with my best guy and and my best boy.

We are taking a leap of faith and hope and talking to – what is arguably – the best pediatric cardiology team in the world – to see if there is another option for our Evan’s special heart.

So many of you don’t quite understand – since you see pictures and hear stories of my boy – and from the outside – he’s robust – he’s sturdy – he’s a tornado toddler – he seems “normal.”

And quite honestly, I don’t get it either.

I look at him and can’t believe that he has another open heart surgery in his oh so near future.

I look at him and can’t believe that I have to hand him over again.

It’s agony.

Utter agony knowing that we have to do this for him.

As the months have passed and we have watched Evan grow and become this boy that we have prayed for, Craig and I decided we would research every option out there…not wanting to look back on any part of this journey and say…”If only we had…..”

The hard part about living with no regrets is doing things that may be out of your comfort zone.

Our local team in Dallas has been exceptional.  To seek out this other opinion has been a tough decision for Craig and I.

Because quite frankly, how do you argue with the care we have received here?  How can one look at Evan and think….something more can be done?

As we spoke with our team here, through data, through tears…we discussed what the plan should be for Evan.

Our cardiologist was honest, blunt, and relayed data to us to give us the best objective opinion.  He feels strongly we should stay the course and the next planned surgery – the Fontan – would give Evan the best shot at many good years.

And at the end of our conversation….Craig ended it with, “We just need to know we have done everything we can possibly do for him. We need to be able to look our son in the eye and say, ‘We did all that we could.”

So…that’s where we are.

We are arming ourselves with knowledge.  We are going speak to the “best of the best” and let them meet our miracle and decide for themselves if there is anything else that can be done.  To not just give our boy “many years” but to give our boy a lifetime.

While you enjoy this holiday season and give thanks and pray over your the meal you are enjoying…can I ask for prayers?

– For a safe flight to Boston for Craig, Evan and I on Saturday, Nov. 30th.

– For health over Evan the next few days and next week.  Any kind of illness can force us cancel the trip.

– For Evan’s spirit as he endures 2 days of clinic visits and procedures.  He will have an MRI and heart catheterization.  The procedure will require him to be intubated and put under general anesthesia.

– For Evan’s body  to stay strong during the procedures.

– Pray against illness, infection. complications.

– Pray for protection over his heart, his brain, his organs, his sweet little body I love so much.

– For a safe trip home for all 3 of us.

– For discernment and direction.  We meet with the Boston team on Dec 3rd .  Once we hear their findings, Craig and I will have to make the decision on what to do next for Evan surgically.

– For Craig and I. Our spirits are down that we have to do this…but we know we need to.

But also…..in the spirit of Thanksgiving…I leave with my list of thanks:

– Thankful for our team here in Dallas that has given us the best they could give to our son. Thankful that – even though they may not agree with us – they support our decision as Evan’s parents to seek out other opinions.

– Thankful for the kindness of complete strangers who recognized an unspoken need and provided for us in ways we don’t know we could ever repay.

– Thankful that Evan is doing so beautifully.  That his heart is beating strong and allows Craig and I to seek opinions with clear minds.

– Thankful for family that will surround our best girl while Craig, Evan and I are away.

– Thankful for the spirit of understanding Iz has through all of this.

– Thankful for friends and our church that have been praying for us and this decision to go for weeks now.

– Thankful for my Heart family that has been supportive and offered their expertise knowledge.

– Thankful for a loving God – that no matter what decision we make for Evan – has every step mapped out for my boy – and only wants the best for him… and for us.


I’m so Thankful for you. Always.



The hardest part about this journey is having to be so many things all at once for Evan.  All the hats that sit atop my head.







I’m stuck in a rut where I need out quickly.

With the fall season arriving in Texas, the cooler weather has brought our first cold of the season.  Evan, thank God, was able to recover within a few days.

But, as soon as his fever hit….his oxygen dropped…I lost it.

I have been his Mama – just his Mama – all summer long. For 5 glorious months…I played with him, got my sillies out with him, let him be…while I was just his Mom.

No agonizing for illness. Very little worry about places and people.  Just letting him be.

My mother hat is now sitting underneath the nurse hat, the advocate hat, the therapist hat, and the friend hat.

Nurse…because I have to monitor him closely.  He’s a little bluer from lower oxygen.  A little huffier and puffier.

Advocate…because I have to stay ahead of the game.  I have to ask the questions for his next surgery.  I have to make sure we are at the best place for his care. I have to make sure the best and brightest minds in the country have my son’s heart on their radar in case we decide to move for his care.  I have to keep up with sicknesses around us and in Isabelle’s school…have to ask the tough questions…”Are you vaccinated?”  “Have you been sick lately?”  I have to fight with insurance companies to approve very expensive injections to protect him from deadly viruses this cold and flu season.

Therapist…because while he’s up to speed in his fine and gross motor skills…we are delayed in speech. And I have to look ahead.  I know a surgery is looming. Perhaps in the next 6 months or so.  I want to make sure Evan is ahead of the curve in all aspects. So, if we experience a set back….our uphill climb won’t be so steep.

Friend…my social butterfly of a boy…the one who smiles at strangers and babbles with other littles his size is now stuck with me most days since I’m keeping him isolated for the most part.  We are taking in the winter season slowly…but the first gust of the season brought us illness.  So…as I creep carefully into the cold, germ infested months…I will slowly assimilate to normalcy.

I have people in my life that say to just relax and let him be.  To not be all those things…just his mom.

But, isn’t my charge and duty as his mom to protect him…keep him safe….provide what is needed for him the best of my ability?

My Mom hat is firmly and permanently welded to my head.  I’m always that first.

And the juggling act of the hats I have to wear is exhausting.



Spiritually exhausting.

The weight of the world from all I am and have to be weighs heavily on my shoulders.  The weight is suffocating at time.  Too much to bear at times.  Too much.

I often collapse in a puddle of tears…often while I have a moment of solitude.  Just me and the hats…all in one cramped room.

I know I’m forgetting to put on the hat that matters most, though.

The hat of daughter.  Daughter of a loving God. Daughter of a merciful God.  Daughter of Protector.  Daughter of the Ultimate Healer.

That hat, the one that should be well worn, perfectly snug atop my head.  Should be the one I never take off….the one that feels light…the one that keeps me warm…the one that keeps me dry amidst the storm.  It can be the hats all combined into one.  It can be the hat that I put on to replace the others.  Because, if I really wear my life right…if I wear it as I’m called to do…that’s the only hat I need.

A child of God who loves me so. Who loves me so much that He will ease the burden of the hats I begrudgingly yet eagerly put on.  If I remember that if I clothe myself in Christ…the mother…the advocate…the nurse…the therapist…the friend…all those things won’t feel as heavy.

Because it’s not just a hat that I’ll be clothed in…but an armor of protection and safe arms of Jesus wrapped around me.


All these things I know.  All these things on my heart that God is begging me to hand over to Him.  All these things I am holding onto with all my might.

It’s just that hat…the hat of Mama…the one I take ever so seriously…the hat that makes me me.  It’s the one God wants to weave and intertwine with the hat He keeps asking me to put on….the one of His child.

In my heart I know I can be both…must be both…

So, a different prayer request today…

Pray that I can truly be the daughter of God and give all my worries, fears, anxiety over to Him…and don the hat I need to wear first.

Because once I get that on straight…everything else will fall into place.