Scar tissue.

Evan’s surgeon told us before his open heart surgery in August, that a majority of the time in the beginning will be getting through and cutting through all the scar tissue that built up in his chest from his initial heart surgery months before.

The body has this amazing way of healing itself – almost protecting itself – from any more damage and pain.  It creates a strong barrier – that scar tissue – around the parts that were “damaged” aka cut into.  It’s almost like the body is saying, “Don’t hurt me anymore…if you do…you’ll have to get through the wall of protection I’m going to build up around the damage you’ve done.”

The tissue builds up around that part that was cut or hurt.  It also can invade other parts that neighbor that wound….just doing what it can to heal itself….not paying any mind to the parts around it that weren’t affected.

The difficulty in all of this is that scar tissue also causes damage.  It’s technically a foreign invader in that part of the body.  The extra tissue becomes hard…not like the tissue that originally called that place home.  

Surgeons say that sometimes the trickiest part of the surgery is not necessarily the surgery itself….but getting through all the scar tissue that has built up.  They have to be extremely delicate….precise…yet firm….to get to the root of the problem without causing more damage.

Every time the body is cut or damaged or hurt…that tissue builds up even further…harder…to protect itself.

As we approach the next two weeks…I am dealing with some old wounds that are opening up again.  Evan has an ECHO (short for Echocardiogram – a sonogram of the heart) of his heart next Wednesday.  This will be the first time we will “see” his heart since open heart surgery in August.  Over 6 months…

We’ll see if his heart has adjusted appropriately to what his surgeon did.  We will see if it’s pumping efficiently.  We will see if the arteries and veins going in and out of his heart are growing well.  We will see if the valves are holding up and not leaking.

Essentially….we will see if my boy’s heart is working.

We also have what we hope will be a final repair for his cleft lip and palate on March 14th.  Of course, he will have more surgeries in the future for his cleft palate and some aesthetic revisions but this big kahuna of a repair is looming.  It will be another 6-8 hour surgery.

All those emotions of fear, worry, anxiety have surfaced as the days approach.  All those things I thought resolved and healed are now being open again.  Fresh.

But, instead of the times before where my heart and soul healed…the scar tissue that has built around my being has caused damage to me that makes the wounds deeper…

In its path of healing…I’m realizing I put up and built up barriers to protect things that really didn’t need protecting.

My marriage.  My faith.  My friendships.  My family relationships.  My joy.

All those things that were safe from the path of the pain I’ve experienced in this journey…I’m realizing have been touched.  My way of healing.  My way of protecting.

This journey for my boy and the fears and worries and the anger and the frustration and the doubts….these things that are broken about this path….I thought were healed.  Yet…I see how they are seeping into the pores of everything and everyone around me.

The wounds are deeper that I expected.  More severe than once thought.

I continue to revisit places in my soul that have received healing and cut into them trying to fix them all over once more.  In the process…I’m causing  more harm than good.

Yet, it’s inevitable.

Four major surgeries in 14 months since my boy was 6 weeks old.

Heart surgery in March.

Open heart surgery in August.

Cleft lip, cleft palate, gastric tube, ear tube surgery in November.

Now….cleft lip and palate surgery again in March.

How can I not revisit the fears? The wounds have never had a chance to heal.  I’ve been putting a band aid over what I thought was a little scratch…but it’s actually a deep wound of fear, of doubts, of all those things that lurk in my heart and head…that have never truly healed and resolved.

I’m finding out the hard way that my inability to heal fully has made the issues I haven’t fully dealt with worse.

My faith is being test and I’m not sure I’m passing the test.

My marriage is being tested…and if it wasn’t for the steadfastness of Craig…I’m not sure we’d be where we are today.

My friendships, while not being tested, I feel are going to suffer again…as I start seclusion into myself….not able to be the friend to anyone in the state I’m in.

I thought I healed. I thought I was past this point of feeling and aching and questioning and wondering and doubting and fearing.

But, as we approach another unknown path in this journey…I realize I’m not healed.  I just put bandaids over wounds and allowed the scar tissue over my soul mask the true hurt and the fear.

Layer upon layer of protection…but no healing.



CHD Week: It’s the absence of fear…

Flipping the switch and expecting a light to turn on.

Sitting down and expecting the chair to support you.

Closing your eyes and expecting them to open again.

All these things, some small, some big, exhibit faith.

How…when life throws you the biggest mountain to climb in a diagnosis a child’s heart that may not beat for a lifetime….when in climbing that mountain boulders and rocks are rolling down making that climb more difficult (whether its in a difficult surgery, additional diagnosis, struggles in recovery, fear, money, marriage woes…)….do we – those in the Heartland that are believers – still have faith?

Some of us…struggle…some of us….are steadfast.

All of us…are learning to pray without worry, love without anger, have faith with fear.

Elissa’s faith story – Heart Mama to Isabelle – Hypoplastic Left Heart Syndrome

One of my heart mama friends is posting various commentaries written by other mamas on specific topics to raise awareness for Congenital Heart Disease this week. The topic I wanted to write about is how the diagnosis of CHD affected my faith.

There is a story in the Old Testament about a woman named Hannah who was childless and prayed for a son. She went to the Temple in Jerusalem (I think- I am assuming it was there because…well….there was only one and that was it) and pleaded her case  to God. A temple elder thought she was drunk and scolded her but when she told him why she wept, he softened and prayed with her. She promised that if she were to get pregnant, she would dedicate him to God.

I prayed in synagogue when I was pregnant with all of my children. I made my own promise of dedication in exchange for healthy babies whom I would love. On March 5th, God gave me His answer. Hypoplastic Left Heart Syndrome. My baby would not live without surgical intervention. It still takes my breath away.

Here’s the thing- for most people, CHD brought them closer to their faith. For me, it had the opposite effect. I was (still am most days) angry. I want to know why He gives mothers babies and then takes them- through no fault of their own. I want to know why he has given me the good chance that I will outlive my daughter, that she has a 50% chance of making it to adulthood. Why would He do this to me and countless other people?

After seeing another mother lose her baby after receiving so much hope, I lost it. I couldn’t bring myself to say that I would send prayers to people who asked for them. I am afraid to. I feel hypocritical doing so. Part of me ‘wishes’ that the child recovers or the parents receive the strength they need, but I cannot formally pray. I try. Especially for the mamas I have come to know and love, and whom I know believe so I want them to get what they need.

I had faith until it became clear to me how much I had to lose. Isabelle’s middle name is Faith. When I was terrified of what we were getting into after her diagnosis, I wanted to remember what would hold me together in spite of my anger. Sometimes it occurs to me that we were chosen to have Isabelle. She is such a love and has blessed my family in so many ways. She has shown me a strength I never knew existed in myself. In those moments, my faith comes back for a little while until the fear creeps back in.

My hope is that once again I will get to a better place with all of this and be able to open my heart to the God I loved. There was a time I really believed that I was the daughter of God and He loved me. I wrote it in my journal after struggling through my first year in sobriety after hurting so many people including myself. I felt so awful and my good friend told me that I shouldn’t be so hard on myself, that I was loved by something greater than me. It helped me get through some really down days when I could barely look up from the sidewalk. . I had faith until it became clear to me how much I had to lose.

A very wise woman once told me that faith is the absence of fear. I know she is right.

Erin’s faith story – Mother to Caylen – Heterotaxy syndrome

I always thought my faith was strong, that it gave me the strength to face the adversities and obstacles in my life; but also helped me to appreciate the little and big things, to find joy in everything.  That is until Caylen was born.  We were told we couldn’t have children that we would have to adopt.  So, imagine our surprise when we found out I was pregnant.  It was a difficult pregnancy due to my age (40), my diabetes and other health issues, and that I had back surgery the year before.  As far as we knew, the baby was fine, though, no issues there. 

The last five weeks of my pregnancy, I started showing signs of preeclampsia, but without the high blood pressure.  I swelled badly, my amniotic fluid increased exponentially.  Finally, at 38 weeks, Caylen was born by c-section.  Caylen was born not breathing.  She was rushed to the NICU and we didn’t hear anything for hours.  When the doctors finally came to talk to us, it was to tell us that Caylen was born with heterotaxy, with multiple CHD’s, and that her chances of survival were very, very small, and that perhaps we should contact a funeral home.  We were in shock, completely divested and speechless.  Just 14 years before, my brother and his wife had lost twin girls who were born too early due to placental abruption.  We just couldn’t believe God would take another child from our family, not again.

Immediately my parents began making calls, and those people began making calls and sending emails, placing Caylen on every prayer list they knew of and could find.  To this day, I credit all those prayers with helping save Caylen’s life.  Saving her was touch and go for a long time, but incredibly, she began to beat the odds and overcome all the obstacles in her way.  I see God’s Hands all over that.  Why?  Because it took her doctors over three weeks just to figure out all her heart defects, and the ones they knew about right away?  By all rights, Caylen should NOT have been able to live with them.  Even her doctors believe God intervened.

As for my faith, I was angry, I was hurt, divested, and I felt betrayed by God.  Even more so, I felt guilty, that I had done something to cause her to be born like this.  I was unable to hold Caylen until she was two weeks old.  I was scared that we wouldn’t bond, and I blamed God for this.  When I was finally able to hold her, from that point on, I spent hours and hours crying over her, asking “Why?”  I was confused as to why God gave us Caylen, only to take her from us again so soon.  I didn’t have the faith that He would save her; I only saw loss and pain.  It was my husband who held us together, praying, encouraging, loving, and helping me to see God’s love and mercy.  He encouraged me to pray, to talk to God, to LISTEN, and to give Him my pain. 

It was during one of my prayers of desperation, God literally spoke to me.  It wasn’t a voice out loud, but a voice in my head and heart, one that spoke with determination and love; it was a father’s voice to his child.  God told me He had given Caylen to us as an honor, not as punishment.  He blessed us for a reason.  He gave Caylen to us, not someone else, as no one else could love her, fight for her, advocate for her, teach her and guide her as David and I could.  No one could be better parents to this special child than us.  THIS is why He gave her to us.  Hearing this voice, hearing these words brought on another storm of tears, of pleading.  But, deep down, God helped me understand that it isn’t my place to know the why’s of all of this.  It’s my place to have faith, to believe in the unseen and unknown, and to trust Him to do what is best, whether or not I agree with Him, or understand. I still struggle with this, I won’t lie.  I still have fears and terror, anxiety and sleepless nights, tears and pain.  I still watch my child suffer, and wonder how to help her, and even how long I will have her. 

Through this journey and struggle, I have seen miracles done in my child – a life that shouldn’t be, is, it just IS.  I have seen her touch lives, and shine God’s love through to others.  Through Caylen and this journey, I have learned what true faith is, and what it isn’t.  I know many people won’t agree with me, and that’s okay.  This is OUR journey, and MY faith.  It’s what it means to ME, for ME, and what it does to help ME that matters.  I hope and pray that some people get something out of our journey, find a bit of hope or strength to help them.  I hope they see God in our lives, because believe me, He IS there, without a doubt.  But, faith is personal, it’s deep inside one’s self, and I can’t have it or find it for you.  I can just tell how I found mine and how it gives me a live better than anything I could have dreamed of or hoped for.  How it makes the hardest days bearable, and the good days amazing.

I had faith, but this beautiful miracle of life I call my daughter taught me what faith really is.  She is only on loan to us from her real Father, her Heavenly Father.  I don’t know how long we will have her, but we will cherish each and every moment with her.  Faith learned and lived through Caylen is praying for good cardiology reports, and praying for strength when her body falters.  Faith is seeing the amazing love shine from her eyes and heart, and hearing that sweet voice say “I love you, Mommy!”  Faith is trusting God to get us through the bad times, to lift the despair that those times bring.  Faith is letting God bring rays of hope and peace into the good and bad, seeing the joy in everyone and everything around us.  Faith is not knowing the bigger picture, but letting God and His glory paint it for you moment by moment.  Faith is trusting that if the worse happens, if He calls the light of our lives home before us, we won’t just survive, we will thrive.  We will honor her life and her miracles by spreading her story, helping raise awareness of heterotaxy and CHD’s, but above all spreading God’s glory to help other families see that having faith can make this journey bearable, make it memorable, make it shine with love and joy in the midst of the darkest, bleakest hours in the valley of the shadow of death.

This is my faith in the world of heterotaxy and CHD’s, and all the other many, many problems my sweet little girl faces on a daily basis.  This faith has allowed me to give my child up to a surgeon to have her heart stopped and repaired (will again) without losing my sanity.  This faith has taught me to pray for God’s will and direction, no matter what it is I want.  This faith is how I cope, how I survive, and how I thrive in a world no parents should know, but too many are faced with.  This is MY faith.

Let’s celebrate.

The enormity of the day has fallen on my shoulders.

In my effort to “live in the present” and capture the greatness of 2013 for all that it is and will be…I have been enjoying every single second with my best girl and best boy.  I have relished in the party planning for Evan’s big day.

It is amazing how quickly time flies when at times during the past year it felt like it stopped multiple times…slowed down in agonizing seconds…minutes crawling along at snails pace.

I’ve been doing the normal birthday party prep.  Getting goody bags ready, planning games, buying candy…oodles and oodles of candy.

I’ve been celebrating my boy with every balloon purchase, toy give away buy, streamer bought.

Then…this week arrived.

I was called by his cardiologist to move up his heart ECHO (a sonogram of his heart) because of a scheduling issue.  It will be the first picture of his heart since his surgery…where we will see if what the surgeon did is working for my boy.

I was called by the craniofacial department to schedule his full cleft lip and palate repair.

I was sent texts, emails, Facebook messages by friends who can no longer make it to his birthday…the cold and flu season taking victim to each of my guests.  None of them wanting to put Evan at risk of getting sick.

The normal of the planning…the normal of our life….shattered once again.

It’s hard to live in the joy of the day when you are always reminded of the heart aches that surround your life.

I am trying to hold it together as much as possible.  Really just trying to be strong and joyful in the moment that is coming up.

My boy will be turning a year old in less than a week.  We will be singing happy birthday to my son in a couple of days….I’ll get to see him smash into his cake, wear his special party shirt, take loads of pictures..trying to capture the memories of the day.

I’m celebrating it in grand style…not just because of all he – we – have endured as a family this year.

I’m celebrating with such fan fare because less than half of babies with his heart condition make it to their first birthday.

I’m celebrating in such grandiose fashion because with his very special heart…only 85% make it to the next staged surgery…and of that 85%…only 65% make it to kindergarten.

I get this birthday…this milestone…I have been given this incredible gift of him just being here….today…

Every birthday I get for him…every year I get to plan a celebration of him being HERE….is a milestone that I promise to party hardy for not just him…but for others like him..who didn’t make it…for mothers like me…who didn’t get to buy the party hats, the noise makers…

But today…as I held Evan while he slept….all 20lbs of my chumba wumba laying on me…I was brought back to the purpose of his birthday as I felt his heart beat against mine.

With each “lub dub” of his heart and rise of his chest…I was reminded once again of the miracle that is before me.

The miracle of his beating heart…his life.

I don’t need to wait on January 22nd of every year to wish my son a happy birthday.  I don’t need an excuse to throw a party, buy a party hat, indulge in candy….because each day is a “happy birthday.”

Everyday.  Everyday I get to celebrate his birth…his life…..everyday that he is here and his heart still beats….I get to celebrate.

So…I’m inviting you…my blog readers, my Facebook prayer warriors, family and friends…to join me in celebration of not just Evan’s life…but life.

I’m inviting you on Tuesday, January 22, at 5:01 PM – when Evan took his first breath in this world – to stop and celebrate life…maybe your child’s, maybe your loved ones, maybe a friend…maybe your own.

Feel the life in your breath….the miracle of your beating heart.

And celebrate.


Present for 2013

Hello…nice to see you again.

I know….it’s been awhile since I last wrote.

The holidays were hectic here.  Both of the littles fell ill with bronchitis.

The littlest little is still dealing with cold symptoms – these heart babies just take a lot longer to recoup than the norm.

But, let’s be honest here.

I wrote a couple of blogs about Christmas and the New Year.

It all seemed so hollow.  Not really authentic.

I get that I don’t have to have mind blowing, soul searching, blogs all the time.

But, lately…I’ve needed to put thoughts down that I didn’t have the courage to do until now.

2012 was a doozy of a year.

It will forever be the year I gave the birth to my son…who endured 2 heart surgeries and a multitude of surgeries and procedures we’ll just file under “other.”

My boy will be a year old in two weeks.

I can’t believe it either.

If you’ve been a faithful reader…you’ve been with me since the beginning.  The moment my heart broke in a million pieces when I found out about Evan’s diagnosis.

You’ve been with me as a trudged along the last year…trying to figure out what the hell was going on with my life in this new normal in this place called the “Heartland.”

You’ve been with me.

But…me…I haven’t been.

I haven’t been present.  Truly in the moment of my life this entire year.

I fell into a deep depression.  I was asked by my regular doctor, my OB and even our pediatrician if I sought help or wanted medication.

Fearful of what it would do to me…fearful of the the possibility of it hindering my ability to take care of Evan…fearful…shameful…

Why couldn’t I handle it?  The pressure of having a medically needy child.  Who’s so freaking complex it scares a lot of people….myself and doctors included.

I’ve been a shadow of myself.  I often lived in that shadow.  Cowering in the darkness.  Refusing to see the light that was extended to me by loved ones, friends, God.

I kind of relished in it.  Being in that dark place….the place where I cried  The place where I would look up statistic after statistic after statistic of the hard reality that I will probably outlive my son.  The place that – let’s just call “there” – where I think about the most horrific thing that could happen to Evan.  I was “there” a lot.

At least in that dark place…the pit…I couldn’t fall any lower.  Maybe sitting in that pit and in the darkness would make the next moment of pain be a little less…feel a little less excruciating.

The past few weeks have been eye opening for me.

It started when Iz fell ill on Christmas day.  The day I prayed we would have together as a family of four…always praying for Evan to stay well…then my other little gets sick.

Then Evan fell ill…and suddenly I was on the phone with cardiologist, pediatricians…breathing treatments round the clock, oxygen monitoring round the clock…

And it was on day 3 of Evan’s illness…where he was very, very sick…that I wondered if we’d see it to his first birthday.

My mind went “there.”  I cried about in bed as I listened to his breathing.  I just kept thinking the worst.

Then…day four and five came around…and his smile returned.  His appetite came back.

His little babbling much more him.

He pulled through.  And I realized…as I dressed Iz on day 5 of that illness…when I put on her jeans that she had suddenly outgrown…when I kissed her face that had suddenly lost it’s toddler chub and turned into a pre-school kid…when I dressed Evan and saw that he was in 12-18 month onesies…when I looked at the calendar and met with my planning team for Evan’s party…

That an entire year had passed.

And I wasn’t present.

Truly in it.

I’ve gone through the motions of my life way too long. But, I guess that’s what happens when your entire being is focused on keeping your legacy alive…literally.  You go in autopilot…every once in awhile having to remind yourself to breathe, to eat, to sleep…sometimes just forcing another day because, hell, if your baby was fighting to live…you should, too.

2012 took my swagger.  It took the best of me. It took the joy from me.

I let it.

I let it take the best of who I am.  I let the pain be greater than the joy.  I let the fear be bigger than my faith.

I let life pass me by and failed to live my life.

Suddenly…my baby girl will be off to pre-school this year.  And next year….she won’t be “mine” anymore.  No more waking up when we want.  No more impromptu visits to the park on sunny days after breakfast.  No more coloring as “Cinderella” plays in the background after lunch.  No more tea parties before nap time.  She’ll be heading to school…like a big girl.

Suddenly…my boy who has battled the odds is cruising on furniture, stuffing his face with ps’ketti…who is becoming more and more like a toddler and a regular kid than the heart baby that lay in the ICU fragile…

If there’s one thing that I learned this past year….and the tragedy of Sandy Hook Elementary solidified it…is death doesn’t tell us when it’s ready for you.  It just kind of shows up.

So…I made the decision about a week ago….

I’m going to live in the present. Live in it.

No more wondering about what could have been if Evan was a normal baby, if I had chosen to do something different with his medical plan, if something I did during my pregnancy could have avoided all this heartache….letting the past strangle me from moving forward.

No more obsessing over what could happen…what may happen…letting the future petrify me from living.

There’s a fine line between arming yourself with knowledge…and obsessing over every statistic, every procedure…

Knowledge is power, yes it is.  But, I let knowledge be bigger than my faith.  I sucked in every piece of information…yet failed to pray about it.

I turned to the internet and medical journals…rather than turning to my Savior.

If I truly believe that God has control over it all…I need to stop second guessing every move He’s already made.

He’s armed me with the knowledge…He’s planted seeds in my heart for the next steps for Evan’s care which we’ll pursue when the time is right….I have to make the choice to believe it…trust it…

My boy, my sweet Evan….his path is already determined.  His steps are already laid out. His story will be beautiful and will change the hearts of many – this I’m sure of – no matter how many chapters it may contain….I pray it has chapters of first days of school, first loves, first heartbreaks…a chapter of “I do’s” and babies of his own…but if it doesn’t…it does not mean his life wasn’t amazing or fulfilling.

These things….are truth…absolute.

2012 is waterlogged from all my tears.  I spent more time on the internet searching for answers and researching plans to save my boy…than actual time with him.

I spent so much time trying to keep my boy alive and now that he’s here and thriving…I’m failing him by not living his life with him.

So…I decided to give myself and those that I love the best gift for 2013.

I’ve decided to give them the present.

2013….the year I jack my swagger back.





There’s no word for it.

A few brave souls have asked me what it’s like being afraid of losing Evan.

I say it’s paralyzing.  The fear is so great that sometimes I can’t breathe or even function.

I’m taught to watch for symptoms of heart failure which could mean his heart isn’t working anymore.

I’m taught to look for a dry cough, vomiting, unusual weight gain or loss, fussiness, lethargy, breathing changes.

He’s a baby.  He can’t communicate to me what’s going on inside his little body.

So, every time he coughs, every time he spits up, every fussy night…I fear and wonder that he’s in heart failure.

That fear….albeit a cold, hard reality of my life…is still just a fear.

It has yet to manifest itself in my life…and I pray so hard everyday that it doesn’t. I pray that I get many years with him and see Evan grow old with his own family.

What happens, though, when that fear finally does become a reality.

It happened.

It happened to 20, unsuspecting parents, who made breakfast for the littles last Friday, who may have argued about what to wear, who may have had to ask a bazillion times to “Turn off the T.V. and brush your teeth!” that morning, who may have had the soundtrack of  babble of their 6 year old talking about a super hero or a princess on their way to school at Sandy Hook Elementary in Newtown, CT.

They kissed their little ones goodbye – for the last time – hugged their tiny bodies – for the last time – told them they loved them – for the last time.

Death of a child is so taboo, so incomprehensible…there isn’t even a word for it.

Widow – one who loses a spouse.

Orphan – one who loses a parent.

My fears for my son’s sick heart force me to live everyday like it’s his last, because, unfortunately, no matter how well he may be doing one day, his condition can turn on a dime.  And I could be living in my greatest fear.

But, what about the healthy little ones in my life  – our lives.

My Iz.  A year from being a kindergartner like those who perished.

I look at her and see nothing but life.  Nothing but joy.  Nothing but hope.

My fears of death are lost on her…because she isn’t dancing with it like Evan.

Or is she?

The sad, scary reality that this tragedy has brought to light is that death doesn’t discriminate.  It doesn’t pick just pick the sick, it doesn’t just pick the ones with heart problems, it doesn’t pick the old.

It just chooses who it wants….and Death takes them.

I held my best girl tight all day long on Friday.  Every few minutes I’d hold her, squeeze her, tell her I loved her.  I told her how special she was to me and her Daddy.  I told her that she is the best big sister in the world.

I’ve been so focused and so scared on losing my sick boy, rightfully so, that I didn’t truly cherish my healthy girl like I should.

Twenty families are mourning today…and will mourn everyday for the rest of their lives.  Twenty families who lost little laughter, who lost good morning kisses, who lost bedtime stories….they are cherishing the memories.

I ache as a parent for each of them.  I cry every time I see my Christmas tree and stockings hung.  I cry every time I hear Iz’s little voice sing.  I cry every time I look around and see a mess of a house…knowing they just wish they could have these things once again.

There has been so much talk of gun control, putting God back in our schools, having the “conversation” that needs to happen to stop these senseless killings.

I agree….let’s talk about these things.  Like our President said last night, “We have to do better.”

But, perhaps let’s take a moment and learn from these families mourning their unspeakable loss.  Learn from their heartache. Learn from their grief.

To cherish each day with our families.  To stop living in fear and living for today.

Because, I bet they will tell you, to make each moment count.

Because you’ll never know when that moment will be taken from you.

I ask for each of you reading today’s blog to stop and pray – to whatever deity you serve – for peace for the families of the children and adults that were lost on Friday and for those heroes who are now survivors….but living with the images of death they saw and witnessed.  I ask that you remember the faces and the names of those lost and  not the one took them.

I ask that you hug your families tight.  I ask that you tell each other you love one another.

Most of all….I ask that you live each day to the fullest..never taking for granted another moment.


I recognize that tree.

I want to thank everyone for their kind words of encouragement concerning my last post.  Craig still has a job for now – and we are hoping it stays that way – but if not – we’ll just deal with that as it comes.

I also want to add that I didn’t intend for that post to be political in anyway.  When I became a citizen, one of the things that I found pride in, was the fact that I lived in a country where I could live, work and exist with others who had very different opinions than me. It’s a beautiful thing to know that you can debate and embrace with the same person in the same moment.

Let’s not forget that.

In other news….

Evan and I have been busy at doctor appointments.   We’re gearing up for a jam packed day today of pre-op visits and specialists appointments.

I’m going through all of this almost numb.  Zombie like.  Very “Walking Dead” – minus the zombie eating, apocalyptic type stuff.

But, I’m just going through this….with very little emotion.

I’ve also shut down….almost completely…from people I love.

I can’t avoid my family because – well – I see them too much.

I have been ignoring emails and text messages and Facebook messages.

Not because I want to…I just can’t bring myself to talk to anyone.

You know when you watch movies or your read a book and there’s that part of the story where the character is lost.  And she keeps on walking the same path over and over again and she says in her head or outloud, “Hey, I recognize that tree!”  It’s because she’s been taking the same steps over and over again…and no matter how far or how close she thinks she is to her destination…she really is just wandering aimlessly.

That’s me right now.

I thought for sure after Evan’s open heart surgery a couple of months ago, I’d be a little further along in this journey for him.

But, now that we are faced with another big surgery – cleft lip, possible g-tube, possible “other” (we’ll talk about this later), I realize….”Hey, I recognize that tree!”

The tree that I keep going round and round.  The one that holds every fear.  The one that has branches and leaves of every doubt, every ache for my boy, every piece of anger, everything that I faced with his first surgery.

That same tree….

I can’t believe we are a week out.  I’m sitting here in the wee hours of the morning…drinking my coffee, Evan playing with his toys and yelling at me to get off the computer, as we wait for his favorite person – our Iz – to wake up so they can play.

And I can’t believe that today…I’ll sit in pre-op for Evan – blood work, vitals, the whole enchilada.

And then, a week from today, God willing, we’ll be handing our boy over once again.  I’ll ask the care team – each nurse, the anesthesiologist, the surgeon – to please protect him.  To please keep my boy safe.  To please return our Evan back to me better than when I hand him over….nothing short of that.

I’ll sit and wait.  And pray over and over again…

God…please.  God, please keep him safe.  Please keep his heart safe.  Please keep each organ safe.  Please keep his brain safe.  Please keep his body free from infection – any and all infection.  Please keep his body clear of blood clots.  Please keep his body safe of bleeding.  Please guide the surgeons.  Please guide their hands and their minds.  Please protect my boy in recovery.  Please protect him.  Please keep him safe.  Please, God, please.

I’ll say these things over and over and over again until we bring our boy home.

I’ll beg every one of you to please say the same prayers.  To please ask others to pray for him.

I can’t handle people saying to me, “Well…he made it through open heart surgery…this will be a piece of cake!”

Don’t say that to me…ever.

Evan is extremely special – his diagnosis making him prone to infection.  His heart making his risks for anesthesia and surgeries just that much more serious.

I have every faith in my boy and every faith in my God that Evan will do well.  I have to remind myself of that…but it’s so very difficult…..

I’m still just a girl….standing in front of her God…asking Him to protect him.  My boy.

No parent should ever have to hand their child over for surgery.  No parent should ever have to walk the corridors of a hospital after the swinging doors to the operating room shut….with nothing but prayers holding them together.

I’ve done that…I’ve handed over 6 times already.

First – when he left my arms after birth, January 22.

Second – his first heart catheter, March 7th.

Third – heart surgery, March 8th.

Fourth – emergency heart catheter, March 9th.

Fifth – heart catheter – August 17th

Sixth – first open heart surgery – August 27th.

Each of those day…my heart stopped for a moment.  Each of those days a piece of me was taken.  Each of those days I had to ask my God to perform another miracle and beg him to let me keep my boy.

And next week…

I’ll walk around aimlessly, waiting for the beautiful words, “The surgery is done.  He’s doing great…we’ll see you in recovery,”  I’ll walk around that tree…

Another day, in this journey – measured by the minutes of each phone call from the operating room that gives me the latest update.

Another day of prayer…another day of hope…another day of faith in my God that He’ll see my boy through this.






Craig had a terrible sports weekend.

His English football (aka soccer) team lost.

Our college football team lost.

And, alas, another fail for the Dallas Cowboys today.

It soured his mood all day.  I finally asked why he let it affect him so much.  I mean…we have real problems in our real lives that doesn’t phase him like sports do.

“Because, Czarina.  It’s the place I go to escape all the bullsh*t Evan is going through.  Sports is mindless and it lets me forget about all the stuff I’m scared about for Evan.  And when the place I “go” to get away from it all sucks….well…it just sucks.”


Even for just 4 quarters on the field, 90 minutes on the pitch, 48 minutes on the court…

That’s how he leaves this place of fear, of doubt, of anger.

It works for Craig most of the time.  Most of the time his teams don’t let him down and he’s able to pretend that he’s just another dude, sitting around watching sports, with nothing more to worry about but the score and the clock.

I get it.  I want to run away all the time.  I’m not the saint of a mother some may think I am – taking care of my boy.  I want to run away, from this place, find the me that I used to love.

Pieces of me are scattered everywhere.  I crumble and fall apart often.  Leaving those pieces of my soul here and there.

I’m really tired.  Physically.  Emotionally. Spiritually.  I wake up multiple times a night to check on Evan.  Hold my breath as I tip toe in his room….waiting to see if his chest is moving up and down and the familiar sound of his deep breaths.

Last night, as I prayed for the Heartland, for a baby who earned her wings, for another who suddenly fell very ill, for another who was climbing and laughing one minute to having a stroke the next, for another who had the final open heart surgery in her series and is now struggling with terrible complications of brain bleeds and seizures…

I lay there.  Unable to escape this place.

When I think I’ve moved forward in this journey, I’m brought back to the reality of our lives, the raw and open wound that still hasn’t healed.

I try and pretend that my life is normal when I do the odd errand.  Pretend that my cart pushing and food sampling at Costco is just another day.  I try and act that my suddenly full cart – with red jeans, a pair of earrings, chips and a teething ring – at Target (when all I needed was milk) – is just like everyone’s.

But its not.

My life is changed forever.  I’m changed forever.  I’ll never see life the same way.  I’ll never do life the same way.

Since we’ve been home from Evan’s open heart surgery, we have been skipping church on Sundays as a family.  Craig takes Iz and I stay home with Evan because we are working so hard on his feeds.

Yesterday morning, though, I needed to escape for an hour to church.  I needed to hear the hopeful Gospel.  I needed to raise my hands up in worship and feel the Holy Spirit.  I needed to lose myself in something good.

Everything you could think of was hampering my plan to go to church.  Iz having melt downs, Evan throwing fits, the time change throwing everyone off.  We got to church right on time….as the band was finishing up with their first song.

I found a seat, by myself, a few rows from the front.  I was rejuvenated.  I was where I needed to be.

Suddenly, I heard a familiar melody.  A tune that I listened to when I was off at medical school.

“Sweet Broken” by Jeremy Riddle.

At the cross you beckon me, you draw me gently to my knees

And I am…lost for words, so lost in love..

I’m sweetly broken, wholly surrendered.

I lost it.

I could feel my knees buckling under the burden that was sitting on my shoulders.  The load of our life resting on me.

To top it off…the sermon was about suffering.  My amazing pastor outright said that he didn’t have all the answers to why there is suffering in this world.  I could feel his eyes connect with my soul as he said, “I know some of you are dealing with children born with special needs or who are medically fragile…”

For my readers who are non-believers of Christ, I don’t blame you.  I don’t understand why there is so much suffering in this world.  Why the innocence of this life – like my Evan – suffers so.

I’ve questioned God’s goodness and His mercy time and time again.  I’ve even yelled, “I hate you” in the air.  My emotions of fear and anguish for this life suffocating me, drowning me.

I’ve asked if I was being punished for something I had done.

I’ve asked if Evan was.

At the end of service, I was able to go up to a pastor to pray with me.  I was going to ask for prayers for peace and healing for Evan but all that came out of my mouth was, “I am so angry. I am so angry that this is happening to my son. I don’t understand why there are babies dying.  I don’t know why my son and my family have to go through all of this.  I am so angry.  I am so angry.”

This road I’m on – not for the faint of heart.

Here’s the thing.  The junk of this life is not because of God it’s because of man. God is always good.  This life is not.

We aren’t promised a life of perfection, free from suffering.  My faith has never promised to give me a reason – the why’s of our life – for all the crud that is thrown at me – but it promises me resources to get through it.

I write this with a heavy heart.  Difficult to see the resources of hope that is supposed to get me through times like this – when I’m on my knees begging God for an answer to why my boy has to face another surgery in less than two weeks, why there are so many babies dying, why places like Children’s hospital’s exist.

Am I broken?  Yes.  I’ll never find parts of me that I had before.  Every time I find those pieces again and duct them back together, I’m shattered once more when I hear of another baby struggling.  Those pieces left behind and replaced with pieces like courage, hope, and faith….pieces I thought were parts of my being…but I know truly weren’t until my Evan came into this life.

Every time I try to escape this place…I realize I’m trying to run away from it all when I need to be running towards Him, instead.

I look at my boy and know he’s a miracle.  He is.  I look at him and know that what gave me him is nothing short of good.  I love him deeper and fiercely with my whole being…and I bet some parents don’t know that kind of love.

 I do. I do because of what Evan has been through.  I do…because of the suffering.  I do…because of the pain.  I do…because I’ve chosen to not escape this life…I’ve chosen to live it.


You are cordially invited:

to my pity party.

When: right now

Time:  I said right now.

Where: where ever you are sitting.  If you are on some tropical beach…why wasn’t I invited there…and why in the world are you on the internet.

Why:  Because…just because.

Today we started phase 2 of operation (pun intended) Evan.

We met with the craniofacial team at Children’s Medical Center…again.

We met with them when Evan was still safe in my tummy.

We met with the surgeon when Evan was born.

We met with the surgeon again when Evan landed in the hospital before his first heart surgery.

The surgeon…he’s a patient man…repeatedly said they couldn’t work on his cleft until his heart was stable.

And we’re there.

Our heart surgeon and cardiologist have all given their blessings to proceed with his cleft repair.

I’m torn on this one, friends.

There was a moment in time when I found out about Evan’s cleft that I was afraid and ashamed of how I felt.

I remember thinking…”Could I love my son that wasn’t going to look normal?  What will people think of me when they see him?”

Pretty crappy, huh?

But man, oh man.

I had those questions weigh on my heart….I was even worried while I was pushing Evan out.

And then I saw him.

And I knew then…I couldn’t love a face more.

Now…that stinkin’ face…the smile that goes for miles…the smile that literally stretches from ear to ear…is on it’s way to getting repaired.

It’s going to be a very hard surgery.  Total time could be up to 6 hours.

This is just the first of many, many, many surgeries for his face. These will be painful…for him and for us to see.

He’ll be in so much pain.  And unlike his heart, we’ll be able to see it.  Really see it.

Then…we’ll face his palate repair…in about 6-8 months from now.

And if all goes well…we won’t have another cleft surgery until he’s in elementary school.

But, the road will be long…just like the road for his heart.

So, why the pity party.

I’m just so upset for him.  For the next round of pain he’s going to have to deal with.  For the moment I have to hand him over…again…to a group of doctors and ask them to protect him and to please return him to me better than when they take him.

We also are starting aggressive feeding therapy starting tomorrow to get him to eat everything by mouth.

The reconstruction of his nose will not allow for the feeding tube to go in through his nose (called an NG tube) because of all the work that has to be done.

If my boy doesn’t show progress and that he can’t take in the amount of formula he needs to sustain and grow….we’ll be meeting with a Gastroenterologist (tummy specialist) to talk about placing a tube that goes directly into his stomach for feeds.

Yup…another surgery.

Yes…you get it now…now we’re on the same page.

So, glad you could make it to my pity party.

Craig and I call his cleft lip and palate the bull sh*t defect.

The heart…we’ve come to terms with his special heart.

But, the cleft lip and palate….ugh…it’s just a nuisance of a problem.

It sucks…and my boy can’t because of it.  So, the feeding problems.  So, the long hard road…just made harder, longer and more difficult.

Stop people.

I can feel some of you praying this away as I type.  I can feel clarity arising. I can see purpose as my boy laughs, chews on a Mum Mum…

Stop it please…

I want to have this pity party.  I want to relish in my agony.  I desperately want to feel sorry for myself.

Can you please stop already?  Stop with the prayers?


Ok…I see it..I feel it.

My boy’s special face has taught me to see other’s through the eyes of Christ.

I know how to love now because of him.  He’s shown me beauty in ways I never thought existed.

The feeding tube that I loathe…I also love…it got him fat and kept him healthy…it made him strong for his open heart surgery…that he ROCKED!

We are now forced to get him to eat…we are on a time crunch…that means we push him…that means if he’s pushed…he may get there…

We are now another step closer to him living normally.  Him having a normal….the normal I prayed for.

I prayed so hard for this day.  So hard.  Because I knew that if we got to this day…my boy survived open heart surgery.

And he did.

And he’s here.

So, return the streamers, the balloons that say, “Life Sucks”, the plates of fattening chips and dip ( can keep those here).

Because, pity party is cancelled.

I had my moment of “woe is me” and now  need to focus on “Whoa is He.”

My God got my boy to this moment…and that’s all the reason to rejoice.

Party cancelled…unless it’s for celebration that we made it Phase 2 of Operation Evan.

Unless it’s for the celebration that my boy WILL be able to get his oral skills up to par so we don’t have to get a G-tube (pray for this)

Unless it’s for a celebration that my boy WILL have a successful cleft lip surgery where he’ll be protected during the procedure and he’ll have a smooth and uneventful recovery (pray for this).

Unless it’s for a celebration that we’ll GET to have more surgeries for my boy…because that means by boy is alive…has survived another surgery…and we just get to GET to the next one.

Ok…let’s celebrate those things.

Let’s party.





I just need a little peace.

God must have known this because I’ve been bombarded with scriptures trying to teach it me.

I’ve also been bombarded in life with things that are so good at taking away the momentary bit of peace I’ve worked hard to achieve.

The Heartland has had another death.  A sweet girl, whose mother is so faithful, lost her battle.  She was waiting patiently for her new heart when she had a brain bleed.

There are other heart babies who are battling for their life.  So, we all band together in prayer, positive thoughts, well wishing…in hopes that this world keeps the warrior.

There are other babies gearing up for surgery…Mamas and Daddies in constant state of worry. So, we band together and pray and send positive thoughts for good outcomes.

There are other babies who have received bad results or are waiting for the results of a test that will determine the next course of action in this long journey…so we band together yet again.

I rejoice for my Evan and his progression since surgery.  I also fear for Evan…knowing that this season of good can turn quickly.

It’s a constant balance.  Trying to stay positive, trying to rejoice, trying to enjoy the present.  But, I’m reminded daily by other heart warriors, how fast things can go downhill.  How one day we are giving e-high fives across the boards because of a good visit…and then the next day….we’re on our calloused knees praying for healing or a miracle…all for the same child.

I try to remind people…everyone (so please take heart dear reader)…that there is NO cure for congenital heart disease. Yes…there is surgical intervention for those defects that are less complex.  But, for the more complex cases, like my Evan, there is only hope for an extension of life with these operations.  And even then, there is a high percentage that lead to transplant or heart failure.

Then what?


We are told to live our lives.  We are told to give ourselves normal.  We are told to hold onto hope.

So, we all try.  And I keep hearing the further out you get from surgery…the easier it is to find that normalcy.

Our situation is a little different…since now we get to face craniofacial surgeries.  So, our “normal” is still in the works.  It’s also a bit different because Evan’s heart is so incredibly unique.  I don’t really have statistics to look to…although I try to avoid them at all costs.

While I try and live my life everyday – to give my family and my boy the best part of me – I am praying so hard for just peace in all of this.

It’s a difficult situation to be in.  I see my boy who is doing well despite all he’s been through.  But, I also am witness to a child’s death at least once a week.  I give into temptation of the internet – researching and reading about all those things that can go wrong – needing to be educated so I can advocate for Evan – yet I end up many times clutching him and holding him in fear for “what could happen” instead of clutching him and holding him in gratitude “for what’s already been promised.”

I’m battling with “survivor’s guilt” – not fully understanding why God spared my son and not another’s.  Yet, I tread lightly on this victory, knowing full well that God can call my boy at any time…but even that…is a victory for God.

My heart is mauled with what my family has – is – going through.  My heart is dinged every time I hear of another family losing their child, a child battling for their life, another newly diagnosed baby.

So peace…I’m praying for it and the Enemy is strong…it has powerful arsenal…playing on my weaknesses.

But, I thank God that He’s stronger.  I thank God that, although I’ve failed time and time again to be faithful to Him, He’s been faithful to me.

In my efforts to achieve the peace God is trying to give me, I need to stop giving into the things that I think are “helping” me achieve it….

And that’s information.  I truly believe there comes a time when you need to step away from the facts and let faith take over.

I believe I’m there.

I know my boy better than anyone out there. I know what our next stage is.  I know what to look for until that time.

I’ve convinced myself that knowledge is power – which it absolutely is – there is no way Evan would be doing this well if it wasn’t for the insight I have on his condition – thanks to the research I’ve done, the incredible advice and intellect from my fellow Heart Mamas, the opinions I’ve sought out, and the constant barge of questions I give to each doctor that has laid hands on my boy…

But, knowledge can also cloud your ability to just enjoy the moment.  Instead of seeing your child and seeing his smile…you are dissecting every breath, every little thing…needing something to go wrong…so your “knowledge” can be validated.

I’m done.  I’m done for now….I can’t continue to sabotage my everyday with my boy.  I suck the joy out of the day by my need to “know” more about Evan’s heart instead of nurturing him and feeding his soul.

I think this small step will lead me to the peace that God is trying to give me…He desperately wants us to have it…all of us.

So…I’ll stow away those facts, package up all the articles I’ve read, tuck away all the information I’ve stuffed in my puny little brain…and keep them way in the back until I really need them to be on the forefront.

Now, I’ll enjoy my boy…and in that…find the peace that God has been waiting patiently for me to have.

“And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  Philippians 4:7

“I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world.”  John 16:33



I got the call about the surgical route for Evan and immediately couldn’t breathe.

How could this be happening?

I thought that he’d be “fixed” after this surgery?

I never thought I would be forced into this world that I dabbled in in the Heartland.

The “single ventricle” world.

I left the waiting room and sobbed down the halls of the hospital.

I found a bathroom and cried in the stall and then cried over the sink.

I went back to the private waiting room we both mine and Craig’s families were waiting with us.

I sat down, didn’t say a word, and just sat.  Waiting for the next call from the operating room.

Craig left the room too.  I’m not sure where he went but he came back in.

In the middle of the room, surrounded by our families, he pulled me to him and held me and let me cry.

I couldn’t breathe.

I couldn’t stand.

He was holding me up when the ground beneath me suddenly felt like it was gone.

“It wasn’t meant to be.  It will be ok.  He’ll still have a full life. We’ll make sure of that.”

He just kept saying over and over to me.

I couldn’t breathe.  I couldn’t stand.

Between each muffled sob I just repeatedly said, “Please. Please.  I just want him out of surgery.  I just need his heart to beat.  I just need his heart to beat again.”


I can’t believe it’s only been 10 days since that moment.  The moment the surgical team described to Craig and I as the “biggest family crisis to date” we’ll see as a family.
It’s incredibly surreal.  Looking at my boy this morning at 5AM, struggling to get back to sleep after this morning feed has started.  I’m armed with his bulb syringe and a towel – ready for him to throw up.

He’s surrounded by his puppy, his lion, his Scout, his monkey.  His room a mess with clothes that have been newly washed mixed with the pile of clothes that are soiled from the day before.  I’m not sure which pile is clean…they’ll probably all get thrown back into the wash just to be safe.

But, he’s here.  In his home.  Just 10 days after a surgeon stopped his heart and made him a new one.  Just 10 days from the moment I held my breath for..the call all of us Heart Mamas long to hear, “Your baby is off bypass and is stable.  And his/her heart is beating on its own.”

My new reality that we’re faced with is one I face with excitement and trepidation.

With Evan’s “new” heart – his single ventricle heart – and his rare diagnosis – the statistics of survival are alarmingly low.  Scary low.  He’s prone to more infection.  He’s still due for another open heart surgery in the next 2-3 years.  There’s a chance his “feeding” issues are unrelated to his heart and his diagnosis.  But, there’s also a chance it is.

We still face many, many cleft lip and palate surgeries.  The risk for him going under anesthesia is greater than a normal child since his circulation isn’t normal…it’s stable…just not normal.

All of his issues suddenly become compounded and exponential instead of singular.

I think about these things all the time.  Since his surgery last week – it’s all I can think about.

I was taken to breaking point as a parent.  I wasn’t pushed over…but I was taken there.  And in all honesty….despite the shock that Evan’s heart could not be repaired…his surgery and recovery have been text book.

My experience pales in comparison to other Heart families that are pushed over the edge…and are sitting at the bottom of the cliff still waiting to come up.

And here I sit.  Looking at  my boy who throws up at least 4 times a day.  Who still needs a feeding tube for all of his nutrition.  Who still takes 5 medications – 1 of which is a medication used for patients in “heart failure.”  Who will need physical, occupational and feeding therapy aggressively in the next few months…maybe year of his life to get him back to where he was pre-surgery.

But, here I sit.  Looking at my boy.  And I can’t believe how incredibly blessed I am.

He’s touched the lives of so many.  Strangers from all parts of the globe.  I’ve been told how his story has made others better parents.  I’ve been told how his story has made others “give praying a shot.”  I’ve been told how his story makes people cherish their life and hold those dear to them a little tighter and a little longer.

I’m armed to face our new life – the “normal” the doctors want us to have – with caution. We’re still told to stay away from sickies, be cautious around those who do not vaccinate, keep low profile (read: lock down) during the cold and flu season…as my Evan will have a tough time getting over illnesses unlike a heart healthy child.

I realize from that moment – 10 days ago – that life can be taken from any of us at any moment.  While I’m excited to celebrate Evan’s 1st birthday – even though statistics say we may not – I still hold onto hope – the same hope that got me through the 8 hours of open heart surgery.

I don’t know how long my boy will be with us – 5, 10, 50, 100 years?  I only pray to outlive him.  Then again…I pray that same prayer for my best girl, too.  This isn’t meant to be a downer…it’s purpose is to remind others to cherish every moment.  Remember that every second is precious – the hugs, the kisses, the tantrums, the messes – all of it.

When you’ve been taken to the edge and you are looking down the ravine, breathless, heart pounding – so much clarity arises.

The reality of life sets in.  How fragile it is.  How each moment is truly a gift.

I suddenly don’t care as much about which school my kids will go to – I just can’t wait until the day my Evan gets to hold that sign that says, “First day of Pre-school:  I want to grow up to be a ___________.”

Because that means he made it.

I suddenly don’t care as much when I look in our bank account and see less dollars in our portfolio – I just can’t wait to spend that money on trips with my family to ball parks around the nation, first soccer games in Europe, mission trips for Operation Smile.

>Because that means he made it.

I suddenly don’t care as much that our house is smaller than most, our cars not as nice, our clothes not as designer – I’m just so thankful I have a home that’s too small for my family of FOUR, a car that’s dinged up from the abuse of Goldfish and fruit snacks, and clothes that are thrown up, spit up on, cried on with sleeves that wipe runny noses and pant legs that double as paper towels.

Because that means we made it.

We are facing our new normal with caution and excitement.  I’ll count down the days of Evan’s recovery – 10/11/2012 is his 6 week post-op end date.

I’ll stock up on hand sanitizer, anti-bacterial wipes….prepare my speech of “has anyone been sick recently” as I pack up our bags for play dates and outings….

I’ll do all these things to get my boy ready for the life I promised him.  The normal he deserves.  The life he fought – is fighting – for.  For the life I whispered in his ears as I soothed back his hair and sang to him as he sat paralyzed post surgery..

I’ll hold onto every memory, every moment of heartache, every tear, every stomach dropping, pulse pounding memory of that day 10 days ago…I’ll never want to forget a second of it.

Because as I look at my boy now….I remember that time….as I plan for our normal…and remind myself daily…in this moment…on this day…

That he made it.