Here we go again. And prayer requests.

We’ve had a summer to remember.

Trips to the beach, water parks.

Lazy days at home or friend’s houses playing and laughing.

Ice cream and cook outs.

Playgrounds and slides.

All the things a summer should be about.

Enter 3 months of no doctors visits, no therapy, nothing resembling the life we had only known for the 1st 15 months of Evan’s life.

The Texas heat is masking the reality of autumn and what it brings.

Cold and flu season is on the horizon.

And tomorrow we start in with doctor’s appointments.

After 4 months of blissful ignorance, my boy will be prodded and examined to check his heart.

It’s been 4 months of greatness…but also 4 months of slow decline.

His sick heart has slapped me across the face once again…and has brought me back to the reality of the life we are leading.

While my boy is hearty and full of life…I’m reminded by his breathing that is a little heavier, the oxygen levels a little bit lower, and his coloring a little bit off…that beneath his picture of health is heart that needs careful attention.

There is a good chance that tomorrow will bring good news – that his heart is doing great and our surgery we are dreading that is inevitable is still a year or 2 away.

There is an equally good chance that tomorrow will bring “other” news – that his heart is showing us it needs something more to help it along – and we could be looking at his next open heart surgery in the coming months.

The breakdowns I’m having today are ones I haven’t had in a while.  I’ve realized that I haven’t been living in denial – I’ve been living in the present.

And the present – as of late – has been filled with nothing but joy and normalcy.

But, living in the present – starting tomorrow – will soon be about a life we once knew – a life of specialists appointments, therapies – a life of the other world we live in.  The world that is everything but normal.

I ask – as I’ve done a million times before – to pray for my son.  

1.  Pray that his ECHO (sonogram of his heart) shows that his heart is functioning strong.  That everything is growing as it should be and that his surgery from a year ago will give us more time before his next open heart surgery.

2.  Pray that his lungs are healthy and have not been affected by his heart.

3. Pray that the extra symptoms we are seeing in Evan are just run of the mill illnesses and not related to his heart.

4. Pray for Isabelle – she has started to ask questions about Evan and his next surgery.  She has shown some worries about Evan going to the doctor tomorrow.  

5. Pray for Craig and I as we make tough decisions for Evan’s care and how to further proceed.  Pray for peace for our hearts.

 

Thank you for sticking with us. 

God is good all the time.

 

 

Beat.

I have written, re-written, deleted and thought and thought and thought about today’s post for the past couple of weeks.

I have sat at the keyboard asking my fingers to type something poignant or something funny or something heartwarming….just something.

But, every time I have sat poised ready to talk about today…I found myself in a tornado of emotions…unable to grasp onto one of them…

anger.

fear.

joy.

resolve.

four of the few emotions swimming in my head as I remember a year ago today.

August 27, 2012 – Miracle Day.

August 27, 2013 – One Year Heart Anniversary for my boy.

Strange.

I thought it was strange, too, when I was first in this journey. I watched as other’s posted about their child’s “Heart-versary” or “Heart Surgery-versary”.

I thought, “Why would they want to celebrate the day their child went through open heart surgery?”

It felt grim.  It felt a little twisted.

Why would they want to celebrate a day like that.  A day that was the most awful day of my life.

I was just sent Evan’s surgical notes from his open heart surgery.

Like a novel I couldn’t put down…I hung onto every word in that 4 page, single spaced, 12 font document like my life depended on it.

In ways…I guess it did.

Every second was accounted for.  Every small move was documented.  Every cut. Every stitch.

I pictured my boy…so small…only 7 months old…16 lbs sopping wet…with the courage of David.

I pictured him being “worked” on…lights bright above his perfect head….his sweet hands and feet covered by surgical drapes…hands and feet I kissed…

And then I got to the part that made me stop, catch my breath, and look away from the page.

27 minutes.

The part where it stated how long my boy’s heart wasn’t beating.

27 minutes.

Where a machine (aka bypass) was acting like his heart and lungs while the surgeon worked to mend his heart.

27 minutes.

Where I sat in a room, 4 floors from my boy….whose heart wasn’t beating.

My son’s heart wasn’t beating.

My son’t heart wasn’t beating.

And there wasn’t anything I could do about it.

But, pray for mercy over my son.

Once I composed myself, I went on to read the rest of the document.  Other words were hard to read…painful.

And then the part that I found comfort in…”the heart returned to normal rhythm.”

His heart beat again.

His heart was beating again.

And it was in that moment that I got it.

I understood why so many Heart Mamas celebrate this day.

It’s because it was the day their child’s heart stopped beating…but beat once again…

I didn’t have a choice that day when I handed over Evan to the surgical team.  The odds of him making it to his 5th birthday are grim…but I knew without the surgery there was a 100% chance that he would die.

I also knew with the surgery Evan still may not survive.

I also knew that the type of heart Evan has…even after all the work that has been done to it…still needs another surgery to help it along…and even then…it’s not fixed.

But, on that day…when I handed him over…I promised Evan he would be ok.

I promised Evan that no matter what, I’d love him forever.

And he promised me he’s fight until his last breath.

And by the grace and mercy of God…that day has brought us to this day.

A year.

Our one year anniversary to the day my son’s heart beat again.

A year where my son bounced in a bounce house, ate an Oreo, felt sand between his toes and smelled the salt air of the ocean.

 

A year where he’s found the joys of a sipping milkshakes out of straws and splashing in puddles after the rain.

A year where he suffered in time out after pulling his sister’s hair or from throwing his food to feed his pups.

A year where he got messy in sidewalk chalk or after dinner dessert.

A year where he heard story after story at night night time with sister.

A year where he learned to give kisses and hugs.

A year where I hold him everyday, smell his sweet Evan smell, tell him I love him…tell him I’m proud of him.

It’s been a tough year…for me.

I’ve battled with demons of that day and his diagnosis.  The statistics have me paralyzed with fear.  The reality that he has to have another open heart surgery – where they will stop his heart again – weighs heavily on my heart.

I find myself feeling polar emotions – joy and grief – all at once.  Every.single.day when I see his chest and the tube coming from his stomach a wave of sadness lands over me. He’s suffered so much….and his suffering is not over.

And then as I trace the scar that stretches from his neck to almost his navel….he giggles uncontrollably…the light touch of my hands tickling him. And the wave of sadness is suddenly replaced by immense gratitude that he’s here.

I’m sad everyday.  Most nights I stay up and lie awake wondering about his next surgery.

Friends and family say I shouldn’t feel that way…I should enjoy that Evan is still here.

But, they don’t know what it feels like to know their child’s heart stopped beating.

And I do.

I also know what it feels like to hear the words, “His heart is beating on its own.”

I know that in that moment I was a part of a miracle.  And the feelings of relief, of gratitude are immeasurable.

And that’s why I celebrate today.

Because after the tears of sadness and pain of what Evan has and will go through…

Because after the statistics that say he won’t make it to kindergarten…

Because after the surreal truth we will knowingly and willingly hand him over again…

I know that his heart may stop…

But it will beat again.

It will.

 

You are worth it.

 

 

Time travel.

I have a secret.

Don’t tell anyone.

But, I just traveled through time.

I may have messed up the space-time continuum.  I arrived in 2013 and saw this.

I don’t know how it happened.  The perfection of “Hangin’ Tough,” “End of the Road,” and whatever song 98 degrees sang suddenly collided.

For this catastrophe…I am truly sorry.

I don’t know what happened.

All I remember is being huge and overly pregnant and then 12 hours of labor, 4 hours of pushing, and a 30 minute emergency c-section later…I gave birth to perfection.

But, here’s the crazy thing.  That just happened…like yesterday.  I’m sure of it.

And then today, I found myself in a haze of chaos.  I was walking with what felt like a sack of potatoes sitting on my hip. But, no…the thing was yelling, babbling, and hitting my face.  I vaguely remember…but yes…I think I gave birth to the handsome little dude I was carrying.

Yes.  It must be true…he called me “Mama,” hit my face, and threw up on me.

In the chaos, though, I looked down and found myself calling a little girl, Iz.

Iz.

Short of Isabelle.

But, no…it can’t be the same Isabelle I gave birth to.

Because this Isabelle was all grown up.

The chub from her hands had suddenly gone.

The roundness of her face and chubby cheeks replaced with features of a kid.

A kid.

No more fluffy butt from a diaper sandwiched in a onesie.

No more rolls of baby fat on toddler legs.

No more of the toddler wobble….the hallmark of first walkers…looking like a sailor that was 3 drinks in…

A kid.

The closer I looked though…it was her.

The little girl I fell in love with.

I recognized the eyes that looked like her Daddy’s.

I recognized the perfect puckered lips I used to kiss a million times a day that smelled of sweet milk.

As she shot me a killer smile…all I could see was a the baby I loved.

But, no..it wasn’t.

The baby I brought home…what seemed like yesterday…is a baby no more.

And it feels like it just happened.

It feels like I just traveled through time….

One moment I’m changing nappies and singing “The Itsy Bitsy Spider” and the next she’s showing me how to use my Ipad and taking requests in the car to hear “Taylor Swift” for the billionth time.

Where did the time go?

What in the hell have I been doing?

I have really tried to be an “in the present” kind of mom.

I am guilty of using my nanny, Mr. Tele Vision, all too often.

And when he’s not available, Ms. I. Pad, steps in.

But, I have read and read books over and over again.

I have played the Princess Cupcake game, Hello Kitty Bingo…

I have built forts.

I have colored and created masterpieces.

I have kissed boo boos, wiped tear stained faces, and band-aided imaginary scrapes.

I have been the back up dancer to her daily music performances (and damn…I still got it).

I have been chased and caught her as we collapse in a fit of giggles.

I have hidden and counted to a 10 and excitedly yelled,”Ready or not…here I come!”

I have loved her more deeply than I ever thought possible.

I have prayed for her harder and more desperately than I ever knew I needed to.

I have had the privilege of watching her grow up.

And yet…I don’t know when it happened.

I didn’t realize how quickly time passes when you are in the heart of your life.

The heart…the truth of my life…my marriage..my children…the greatest gifts I could have ever been given.

There were moments where time stood still and minutes felt like hours…hours felt like eternity.

The times I was overly tired from lack of sleep of a newborn…wondering if it would ever get easier.

The times I was so anxious to “get over” a stage…the zombie exhaustion of having a newborn…the terrible twos…the challenging threes…

And now…I’m sending off my overly sass-a-riffic 4 year old to pre-Kindergarten.

The emotions are great even though it may not be “real” school yet.

Because this has been a fantastic summer as a family of four.

We have lived our lives so fully and each passing day we treasure because we don’t know what our lives will look like a year from now.

So, as I send off my 4 year old little “big” girl…I find myself thanking time.

I’m thanking Father Time for each of the hard stages I never thought I’d make it through.

I’m thanking Time for the hours I sat holding my girl when she just didn’t want to be put down.

I’m thanking Time for the tasks I’ve let her do that take 3 times as long…but that sandwich making or cookie baking are memories I’ll cherish forever.

I’m thanking Time  the hours upon hours we sat snuggled under covers in the early morning hours watching cartoons…as I let her lay in my neck nook and I engraved each memory of her smell, the softness of her skin, and the smoothness of her hair.

Although I ache for the days of before…although I find it difficult to believe that we are four years into this parenthood journey…although the hours and days and years have felt like it’s gone at lightning’s pace…

I’m thanking Time…most importantly..for continuing to pass.

Because it’s in the passing I am reminded that every.single.day is a treasure.

Every day that passes and turns into weeks that will morph into years…are a great privilege.

I am humbled that I get to see the baby I cradled in my arms grow up into the strong willed, creative, Karaoke loving 4 year old before me.

It’s a gift.

And I will cherish the time I have been given…and pray for more of these timeless treasures.

Because I know….in the very near future…I will be in another haze of chaos…another first day of school, sending her off to college, watching her walk down the aisle.

But, I will always see her perfection when I look into her eyes, see her beautiful smile…I’ll be transported back to the moment I first met her…and know she will always be the baby girl I fell in love with.

She’ll always be my baby girl.

 

 

 

 

I RUN4

I’ve started to run again..

ok..maybe it’s more of a jog.

And sometimes…my speed may be seen as more of a fast walk…but a really fast walk with arms pumping and everything.

Running used to be my “go to” work out.  There’s nothing like hitting the pavement and knowing that the only person you have to beat and the only thing holding you back from being your best…is you.

No one else to push you…

No one else to motivate you…

Just you.

And, sometimes, after you hit that moment where your breathing starts to labor, your legs feel like lead…you need to dig deep and find it in you to finish.

“You don’t stop when you’re tired…you stop when you’re finished.”

The words of my old trainer ring in my head as I feel the motivation seep out of  my pores.

Now…

I find myself thinking of Evan as I run.

And not just Evan…but for his buddies with special hearts.

I hear my heart pound in my ears…ba-boom, ba-boom, ba-boom...and think, “Thank God for my healthy heart.”

I feel my legs ache and I think, “Thank God they are still moving.”

I  feel the sweat drip down my back, my arms and think, “Thank God…for this moment.”

I think about my boy and about others who are living with conditions..or fighting a cancer….or mentally challenged…and I find the gratitude and the thanksgiving overflowing.

Because, I can run.  I have a heart that beats and can keep up.  I have a body and mind that allow me to.

When I get tired…I think about Evan and his fight.  I pray, “Buddy…when you get tired….YOU DON’T QUIT.  You keep fighting.  You keep going.  Because your story is not finished.”

And I battle on.

I run because I can.

And I run because so many can’t.

I am in constant awe of him, his Heart Buddies, children and adults in wheel chairs…fighting a disease…fighting a cancer….fighting.

And its in this mentality that I signed up my boy to be matched with someone who may need the motivation in their run. 

And I know that his fight can – and will – inspire and motivate someone to run harder…run longer…run until they are finished.

Who I Run 4 is an organization that matches up runners with those who can’t run – adults and children with special needs.

It’s an organization that allows those special people in our lives to push, motivate, and inspire runners…to finish.

Because, it’s in those moments where it gets hard…where the battle of fighting a disease…living with a condition…heading into the next surgery…that we are reminded by those we love…..

“To keep fighting…keep battling…because…you are not yet finished.”

 

 

That could have been you.

I have a confession.

I have cursed at a baby.

Said four letter words, thrown the “bird”, and wanted to raise fist to cuffs to an infant.

Ok…maybe in my head.

But, I have…yes.

I’m not proud of it.

It came from a place of anger.  Jealousy.

Fear.

When I found out about Evan’s diagnosis, I was 22 weeks pregnant.

For the next 16 weeks, I also cursed out pregnant women and newborns.

I would silently say mean things.  I would cry in rage about how they got to enjoy the pregnancy glow and be blissful while I waited in anticipation for my baby to arrive.  My baby who had a heart that was broken.

While those women longed to hear their baby cry…

I wondered if mine would.

While those new moms sent their newborns to the nursery for an hour or two of rest…

I prayed and prayed for just a moment to hold mine.

Then, I looked at my beautiful boy with the wide smile, newly scarred chest…and feeding tube shoved in his nose…feeding pump beeping incessantly for some phantom problem…and I cursed nursing babies, babies taking bottles, babies being normal.

 

I found anger in places I didn’t know existed.  Anger as I looked at fresh, healthy babies…unmarked and unscarred and would say to my little boy, “That could have been you.”

And I cursed at God next…wondering why it wasn’t him.  Why my son had to suffer.  Why my son had to endure pain.  Why my family had to spend days, upon weeks, upon months apart.

Fast forward to today.

Eighteen months later.

Eighteen months old today.  My Evan that is.  The boy I happily, joyfully call my heart hero.  My warrior. My best boy.

All that anger seems like a distant memory.

I realize, today, that all those feeling were – are – just.  I was scared.  I am scared.  Fearful that Evan wouldn’t ever get the normal he deserved.  Fearful our family would only know a life of hospital stays, feeding tubes, therapy, doctor visits.

But today…eighteen months later…I sit here…in awe.

In awe and find myself cursing out the ringing pain in my foot because I just stepped on a Lego Evan left on the ground.

Then…like a mad woman…I find myself laughing at the mess of my house.

The sippy cup of milk left on our bedroom floor.  The pile of laundry that mainly consists of blankies that have gotten “pre-washed” in the toilet…pantries stuffed and bursting at the seams with cookies, crackers, snacks of all shapes, sizes and colors….

I look at the sad, tired eyes of the my Golden Oldies…who have endured countless rounds of abuse from the tiny toddler terror…as he pulls tails, steps on paws.

My Evan.

All the things…the things I prayed about…have come to fruition.

And I, ask for forgiveness from the babies…the mommas…that I silently cursed.  Because, it wasn’t their fault my Evan endured what he did.

He had to.  It was a part of his story.  His heart.  His wide smile.  His journey.

All of it…chapters of riveting and harrowing stories of faith and prayer and strength.  Of love.

Of hope.

A lot has happened since the day he came into this world to now.  I have been welcomed into the Heartland where I have prayed for babies like they were my own, I have mourned with mothers as they have lost their children. I have encouraged.  I have supported.  I have been a distant friend…who was once a stranger.

And as I stand witness to those mothers who lost their children…

And as I stand witness to those children who have suffered delays as a result of surgeries…

And as I stand witness to those children are still battling and struggling…

I find myself looking at my sippy cup holding, furniture climbing, toilet bowl playing, Goldfish eating, Cheerio loving, tantrum throwing, hair pulling, sister annoying, blankie loving, cuddly little monkey…who in all respects…is a normal 18 month old boy and say to him as I stand witness to the sadness of  the Heartland and say,

“That could have been you.”

But, for whatever reason…it’s not.

Evan’s story has suddenly become mundane.  Normal.

And its in this time of normal that I find the greatest of joys.  Because, I know his next open heart surgery is just breaths away.

And I don’t know how his story will unfold at that time.

I just know now that the next few chapters of his life will be filled with laughter, love, and the everyday that so many take for granted…but we capture and hold onto as if we’ve received the greatest treasures.

Happy 18 months to my hero.

 

 

Tatay

Yesterday, we celebrated Iz’s birthday with a party with family.  We had a pool party at my parent’s house and had over 25 people…all family….sing sweet birthday wishes for Iz.

Iz wanted hamburgers, hot dogs, and chips for her birthday feast.

I gladly obliged.

My Dad sent me a text Friday asking for my “list” of things I needed for the party.

I told him the food was taken care of…I just needed some hamburger meat and ice cream cups and we would be good to go!

I arrived to my parent’s house yesterday to get set up for Iz’s birthday.

Looking at the amount of food on the counter, in the sink, on the stove and ready to be grilled…I realized my Dad supersized the menu to fajitas and some Filipino food.

He also put together a sweet video of Iz for us to watch.  I was so surprised.  We all were.

But…I probably shouldn’t have been.

Because this is the kind of Dad I have.

You all know so much about Craig…and the kind of Dad he is.  Today…I’d like to meet my Dad.

To my kids…he’s Tatay.

He’s their Tatay…who holds them all them time even though his back is aching.

He’s their Tatay…who makes their favorite food no matter how tired he is.

He’s their Tatay…who happily grants any wish for ice cream or snocones.

He’s their Tatay…who cranks up the volume on the karaoke machine and lets them play on microphones and sound equipment that is probably more expensive than my mortgage.

He’s their Tatay…who loves them so much…so gives all he can…always.

He’s such a good man.

A really good man.

Not a man without faults….but a man who owns up to them.

Just a man who is good.  Honest.  Pure.  Hardworking.

He’s the man that raised me and my sisters when my mom was doing residency 8 hours away. Poor dude…raising 2 teenage girls and a pre-teen on his own…

At one point…he worked 3-4 jobs to provide for us…a bank job, Taco Bueno manager, Tom Thumb deli worker….and he did each job with pride, with honor…with integrity.

And yet…he still managed to make it to my school functions…cheerleading things…my sister’s high school stuff…all of it.

He let me make-up him, hairspray and bow him…

He gives so much…too much at times…of who he is.

His greatest fault…is that he won’t say “no.”  His heart is the size of the universe and he doesn’t like disappointing his wife and his kids…and his 8 grandkids. Kind of hard to even call that kind of trait a fault…

He is not just a good dad or grandfather….he’s a good brother and son.  He’s had to watch his Dad – my Tatay – suffer in his life as he buried 4 of his children.  My Dad had to be the strength for his dad during a time he wanted to mourn the loss of a brother or sister.

It’s just who my Dad is.

He’s the kind of parent I can only hope to be like….even if my likeness is only a fraction of what he is.

He makes me want to be a better daughter and a better mother…he makes me want to be a better wife…because he shows me in his selflessness…what love looks like in its most unconditional state.

I love you, Dad.  So proud to be your, Bulele.


 

Love and Marriage.

I woke up to the sounds of babbling and “Mama” around 5:30 AM this morning.  My little dude was up early today…again.  The loud ramblings woke up Iz as I was making Evan’s morning milk.

6:05 AM.  Whew…it’s gonna be a long day.

The kids were already awake for the day….ready to tackle the summer fun of swimming, ice cream, and napping strikes.

I sneaked away into my bedroom and walked over to the man of my life…somehow was still asleep in all the racket…and gave him a kiss good morning…

“Happy Anniversary, honey.”

Seconds later…I hear a crash from outside our room…

Sigh.  The tiny terrors were at it already.

The two littles…the loves of our lives….the best gift we could have been given on any anniversary.

I get asked all the time how “Craig and I” are doing.  How is our marriage holding up through all of this.

And I give a surprising answer….”We are doing pretty great.”

Despite the stress of our lives with Evan and the normal growing pains a family of 4 has with a pre-school kid and a toddler, our lives are much like everyone elses.

Our marriage is challenged – sure – a bit more than most – but overall – every marriage faces some deep dark pits.  You find yourself in the most difficult predicaments and you have to ask yourself  – can we do this?

This – being the part where you battle through the anger, the resentment, the fear, the frustration, the lack of feelings of “love” you may have on a particular day – and just ask yourself – can we really DO this? Because marriage is active.  It’s not a feeling…it’s a verb.  It’s in constant motion…truly dynamic.  You either move with it, find yourself still in it – refusing to move along for the journey, or walk away from it – not able to find the right rhythm and leaving it behind.

I can’t speak for all married couples (or partnerships) in the Heartland – I can only speak for mine.  I don’t know what their lives look like.  I know many look similar to mine – Heart baby (and all that is included in the package of the broken heart),  probably a heart healthy kid or 2 to add to the mix, money woes, insurance headaches, extended family drama, broken friendships.

I know many couple who have parted ways….many who are still together….all of them..us…..just trying to navigate life in the Heartland.

What I can do is share how our marriage made it through the hardest year of our lives.

1. Who are you?  – Craig will randomly ask me, “So, when the Zombie Apocalypse happens, will we move to Lubbock and live with your sister since they have a basement, guns and lots of food in their pantry?” (Thank you”The Walking Dead”…) Luckily, I know Craig and this question is just one of the many random things that run through his head.  While I research and formulate plans for Evan’s care….his mind is often occupied with nothingness of sports statistics, music, and shows that are riddled with zombies and guns.  That’s who he is.  He doesn’t contemplate or agonize over details like I do.  He deals with things as they come.  He’s serious when he needs to be.  And I had to learn that the hard way…had to learn that he isn’t wired like me.  And vice versa.  He gives me the opportunity to discuss for the billionth time what I want to do for Evan in regards to his care….and even if nothing changes from day to day (or even hour to hour)….he lets me talk about it.  He gives me the chance to dump all the knowledge, all the fear, all the worries out of my mind that is racing a million miles a minute….to get just a second of respite.  And yes….many times I bet that when I talk about the second opinion, the surgical technique, the possible problems Evan could be dealing with…I know that there is a good chance that what’s running through is head is what baseball game he’s going to go to once the season starts.

2. Date night – When your child is hooked up to monitors in the I.C.U., it’s not the best time to book reservations to the hottest restaurant in town.  But, Craig made it a point to drag me away from the monitors and either sit in the family waiting area or run down to the cafeteria for a bite to eat.  Granted, that’s not a date night to many. But, to us, getting away – just the two of us – to breathe together, pray together, have a conversation that wasn’t punctuated with medical terminology – was so important.  He knew I needed a break even though I didn’t feel like I deserved one.  Basic things like eating were the last thing on my mind…but taking care of yourself is all you can do in times like those in the I.C.U….so that when your little one is out of the woods…you’ll be at your best.  Now, that we are home and Evan is doing pretty well, date nights are few and far between. Like REAL date nights – where I take off the yoga pants and put on a dress (and shave my legs), put on some makeup and take off my glasses, and shower….  But, when they happen – they are cherished.  And, during those in between times between the rare date night, we make an effort to have mini ones.  Yes…turning off our iPads, curling up on the couch to catch up on trash T.V., with a dessert may not sound like much…but again…it’s time for just he and I.  Time…together…to connect.

3.  After the date night.... – make time for THAT too.  Trust me…it’s worth it.  It’s really difficult to do the deed with someone you’re angry at, upset with, etc.  But to do it…you gotta work through a majority of it.  I get stress….I get it.  And I get exhaustion…I get it.  Once upon a time I was up every hour to hour and a half for Evan. But, we still made time for “it.” Because you get a closeness and an intimacy that I think we all crave in times of trouble.  Reminders of normal (and there’s nothing more normal than that…), time to rediscover why you said your “I do’s”, and for me…it’s a welcome reminder that I’m not just a mother but I’m also a someone special to another soul out there. And I need to feel that…to know that…to know that no matter what happens…I am still loved deeply even if I may not love myself that much.

4. Find the page and get on it – in times as complex as these – medical decisions for Evan, regular life things like money, family, faith – it’s important that Craig and I are in agreement on things that matter…like really matter.  It’s hard enough to make tough choices…but if your partner in crime and you are butting heads on an issue…that is a stress unlike any other.  I can’t tell you how to get there…I just think it’s important that you both find a way to compromise to get on the same page about things that count.  Regular life things are crucial too in the midst of the complex Heart stuff that we deal with.  And the medical stuff…this stuff is scary hard.  It’s scary because I don’t want to make a wrong move for Evan that could literally cause him his life.  Craig and I often used prayer – each of us praying on our own and together – to make the best decisions for Evan.  That was our way of getting to same page….

5. Step away – from each other and from the Heartland.  Just recently, I’ve been making time for me.  Just for me.  Not a grocery trip to restock our pantry – because that’s a chore.  Not an errand to shop for shoes for Iz, onesies for Evan… time for me.  I’ve found yoga to be my new happy place.  I’ve found that a good book, a glass of wine, and restaurant reservation for 1 is ONE-derful.  Making time for stuff other than each other, other than the kids…but for each of us as individuals…makes Craig and I both pretty happy.  Yes…to the outsider it may seem a bit depressing…and maybe it is to some degree….but going out alone and doing stuff that  matters to ME and me alone is great.  What’s crucial here is that I have found to trust Craig with Evan’s care…I can’t step away from it all if my mind is still at home.  It was a long process…a year in the making.  But, someone other  than me needs to know how to care for our boy and for Iz….

6. It is just about the two of you – No matter who surrounds our life and your journey – parents, siblings, friends, doctors, specialists – the bottom line is – its still OUR marriage.  We had to make the decision to tune out the opinions of everyone – and make decisions for Evan and for our little family of four based on what we felt was best.  Often, the people you love the most want to feel included and need to give opinions on every part of this walk. It’s hard to look your mom in the eye – and say with love – “I need you to stop.” And yes….we often consulted with family…and of course we consulted with Evan’s doctors…but ultimately…Craig and I had to be a united front and we had to man and woman up and sometimes say, “We got this…but thanks for your input.”  We know everyone has Evan and our best interest at heart…we know this….but ultimately…every decision we make for Evan…will affect our family of four and our marriage.

7. Pray – I pray for Craig and he prays for me.  And we pray together.  For Evan.  For Iz.  For our present, for our future.  For the blessings. For the trials.  All of it.

8.  Pride aside – when we are in the heart of our trouble….I often forget to put up my filter and allow things to escape my mouth that are hurtful to Craig.  And vice versa.  We make the decision all the time…to say “sorry and will you forgive me” quickly….we try to not allow something hurtful that was said or done out of the stress of the situation we are in to infect the rest of our days.  Anger, resentment, fear….all are like a disease and can hurt the rest of our marriage if we don’t remedy  it quickly by just saying, “I’m sorry.”

9. Sometimes you just gotta Wee Bey it (a la “The Wire”)- shrug your shoulders, take it all like a man, and say ‘eff’ it.   It all gets piled on you…all of the stuff you know and all of the stuff you don’t know.  This journey is full of twists and turns.  Every cardiology appointment is met with anxiety….no one really knows without a shadow of a doubt….that Evan will be ok.  And sometimes…when it all seems like too much ….because frankly…it IS too much…all you can do is shrug your shoulders, take it all in…and maybe not say ‘eff’ it…but give to a higher power, to God, the universe… http://youtu.be/0qBPK4wpZpw

10.  It’s just a season – Craig and I remind each other that all this hard we are dealing with – is just a season of our lives.  Evan is now over a year old!  Whoa!  We made it through some of the hardest time of our lives.  As we face another heart surgery in less than 2 years…, we are dealing with all the fears and the anxiety that accompany handing your child over.  But, we have to move forward…face the next surgery and the next cardiology visit to check on Evan’s heart….and get past this season.  There will be a season of sunshine soon….we have been blessed with some beautiful days…we know more storms may come our way…but we both hold onto hope that we will have more sunny days.  And through it all….the storms and messes it leaves behind…we both make the decision every day…every moment…we want to be there for each other to enjoy that sunshine.

A letter of apology.

Hey buddy,

One life lesson I need to teach you, Evan, is to be able to offer a heart felt apology when  you know you’re in the wrong.

Sometimes, in life, you’ll realize there are some that won’t apologize – and you’ll find yourself apologizing to someone you love on their behalf – because – well – it’s the right thing to do.

The past few weeks, I’ve been trying to find the right words to adequately express what I’m feeling.  And I search my mind…look at you…and realize…the classic way is the best way.

“I’m sorry.”

I’m sorry, son.  I’m sorry for so many things…for others…for me.

I’m sorry for doubting you.

I’m sorry for putting you in a place that is so beneath your abilities.

I’m sorry for thinking anything less of you than what God made you – a miracle.

I’ve watched you reach milestones I didn’t think were possible without extensive therapy.

Part me of has been setting the bar low so that you wouldn’t get your feelings hurt if you didn’t reach a goal.  Funny thing is – it was my feelings I was worried about.

You…you laugh everyday…just trying your best…doing what you love most…living.

And in your everyday – you’ve just been a regular toddler – exploring and destroying.

Another Heart Mama pointed out to me that I can’t let my fears of your life dictate what you can – will –  become.

And my, boy, what you can become is greatness…and nothing short of that.

It is hard letting go of those fears.  After all, your life is dictated by statistics.

People say to stop listening to those statistics…but if an expert in the weather tells you there is a 75% chance of treacherous thunderstorms…you’d stay indoors and be safe, right?

So…when I was told that there was a greater than 50% chance you wouldn’t make it to your first birthday…

So…when I am being told that all of the surgeries…two heart, one stomach, two cleft lip and palate, 3 heart catheterizations…the combination of all these and the time under anesthesia will greatly affect your development…

So…when I am being bombarded with statistics that you may not make it to your next surgery because of ‘complications’….

I’ve been choosing to stay indoors and be safe…avoid the storms.

But, you my child…my miracle…have chosen to strap on your rain boots, take out an umbrella, sit outside, and wait for the storm.  And while you wait…you joyfully live your life…choosing to ignore the statistics and surprising so many…including me.

Every time I set the bar so low for what I think you can do…you take that bar…use it as a step stool…and reach up and beyond…and won’t stop.

Some may look at what you are doing now and kind of shrug and say, “Well…he should be doing those things…he’s 16 months old.”

And for them…I apologize.

Because they don’t know your story.  They don’t know yours and your heart sisters and brothers…they don’t know that having breathing tubes in your throat cause major oral aversions to food and drink.

They don’t know that months and months of hospital stays and being immobile can cause severe motor delays.

They don’t realize that the surgeries and procedures you have endured…could have killed you…but you…YOU survived.

And after months of just trying to keep you alive…it’s hard to make the transition to watching you thrive.

But…I’m here.  I’ve finally caught up to you.

I’m sorry it took me so long to get here.

Because your next heart surgery is inevitable…you have to have it.  The time will pass to that time…and instead of sitting around and waiting for that storm…I’m ready to dance with you in the rain.  I’m done watching you, your sister and Daddy laugh…I’m ready to laugh with you…live with you.

 

Love, Mama (proud mom to Evan – heart warrior, repaired “wide smile”, 100% oral – food, drink and medications, saying and signing over 15 words, and so much more!)

Evan may2013 from Czarina Hounsel on Vimeo.

 

 

 

 

 

Getting it right this Mother’s Day.

I wish I could get it “right” for once.

This Mother thing.

You know – the having dinner ready for the husband when he arrives at home with the kids playing nicely – all clean and sparkly.

The shopping for groceries and filling it with organic, nothing but stuff from farms and pastures- making sure my cart is free of things that aren’t crunchy goodness of sweet or salty – packed with ingredients that will keep that “food” on the shelves for many, many moon.

Or “disciplining” my kids with a gentle caring voice.  Never uttering words are often reserved for when you step on a Lego…or actually using only – and I mean ONLY – my inside voice to get my kids to listen to me.

Or keeping the house picked up and clean – the counter tops wiped down – the floors mopped daily – the toilets scrubbed at least once a week.

In my special case, not comparing my special needs child with other special needs kids…or even heart healthy ones….and just celebrating his accomplishments and his progress alone – and not against everyone elses.

But, I don’t.

I rarely get it right.

I think there was one day in 2008 when I had it all together.

Oh wait – I wasn’t a mom yet then.  But, then…don’t we all know how to be the “best” mom out there….before we actually birth our little miracles.

The past two years of this motherhood thing have challenged me.

Not just because of Evan and all of our ups and downs with him and his health.

But, because my sweet little toddler has morphed into a sassy, no nonsense, bundle of pre-school “I’m the queen of the world” diva.

I’ve had my share of melt downs – huddling in the corner in tears – panicking that I was about to hear a knock on my door from authorities to take my children from me  – because hell – I was failing miserably at life with my two littles.

There are moments where my day.is.done. by 7am in the morning.  In just a short hour and a half of just waking, I’m over the day after my darling children have sucked the life force out of me with their incessant whining, demanding, needing.

This Mothering business is no joke – there is no rest for the weary.  People laugh and joke about it – but so much of the sad reality are hard truths  – I don’t go to the bathroom alone – EVER.  I’m a servant to my children – truly. I cook for them, clean them, wash their belongings…I’m at their beck and call for most of the day.

I’m serving them…but that’s what a mother does.  It’s what we do….because those things – feeding them, making sure they are bathed, dressed, clean, caring for their most prized possessions – a Duck, a blankie – is what gives our children security.  It’s what makes them feel safe.  Loved.

I think the problem with this motherhood thing – is that yes – we love and would give our life for our children – we cherish our days – the sleepy nights – all those beautiful things about being a mom – but so many believe we have to do it with a smile on our face.

So many believe there is a “right” way to go through this chapter of our life – it’s evident in Pinterest, in Facebook statuses, in articles on websites on how to parent – it’s everywhere.

And what I want to to say to all those things and to you – my dear friend – the woman I’m proud to call my sister in this sorority called Motherhood – that feeling like you’re failing – IS getting it right.

Because in all honesty – if you feel like you’re not doing something right – that means you’re always striving to be better.

It means you are human – your heart is filled with emotions – not just love and patience – but anger and frustration.

There is always something that isn’t going to go right in this journey – a comedy of errors – some may say.

Sometimes getting through the day or even the hour – may feel like the biggest mountain – but you’ll get to the other side – it may be messy and ugly getting there – but you’ll get there.

So look around your messy house, tell your husband to pick up dinner, stick the kids in front of the T.V. with a snack out of the box from the pantry, maybe dial back your “mean Mommy voice” to more of a loud “inside voice”…and rejoice…

Rejoice that you may not get it “right” – may never get it right – and know you’re not the only one that has those days.  And we all know what “those” days are…

But today, let’s get it right.

Let’s celebrate that our lives aren’t perfect – they are sticky, messy, whiney, (sometimes utterly annoying), frustrating, scary for what’s to come – but they are our lives we get to share with little people who call us Mommy.

Happy Mother’s Day, friends.

 

 

Sometimes I want to throw my head in the garbage.

It’s been forever since I’ve written.

It hasn’t been intentional…I just needed a breather from my life and I needed a moment to enjoy the privacy that often I dismiss when I publish my daily dealings and stories of Evan.

His cleft surgery was a success.  He looks amazing.  His beautiful face is more spectacular than before….I wake every morning to the face God always intended me to love.  For whatever reason…He needed us to take a journey to get there.

Perfection.

Evan stopped breathing twice during recovery.  Only an hour after he was done from the 8 hour surgery for his face and mouth, he suddenly stopped breathing.  We were in the Cardiac Intensive Care Unit, Craig and I stood bedside as we oohed and ahhed over our boys’ new face, and suddenly the monitors beeped…and didn’t stop.

His oxygen dropped down to zero.

A flat line appeared on the screen where his breathing rhythm should have been.

His room flooded with doctors, nurses…Craig stood by yelling at Evan to breathe.  I stood in the hall sobbing…unable to breathe as well.

A terrible reaction to the pain meds caused my boy to stop breathing.

And it happens again…only an hour later…

Well…

It’s all too much.   I wasn’t ready to recount that moment until now.

We recovered at home and during our recovery period of 4 weeks, our house was plagued with stomach flu that hit my daughter and Evan and me.

Evan’s case was much more severe due to his recovery from his surgery and required a trip to the emergency room.

After 3 weeks…we finally got to breathe.  Thinking our life was about to hit the upswing of normal I’ve been craving for months…

Then, I get a call from my sister, my best friend, that she has to have surgery.

Another storm…

I flew to be by her bedside as she endured surgery.  I gave my mom a hug as she sent her child off to surgery.  We waited anxiously for days waiting for the pathology report to let us know it wasn’t cancer.

I was prepared to write about Evan’s great report from his plastic surgeon.  His palate and lip had healed beautifully and for once in  my son’s life, “Everything went as planned.”

And then…Boston.

The city I fell in love with years ago…Faneuil Hall…Boston Commons…was attacked.

Days later…our neighbors in West, Texas suffered a tragedy of their own.

I couldn’t find it in me to write about anything.

I felt a little hollow…a lot hollow.

I went ahead in with my life.  Coffee filled mornings, sounds of little feet running with toys from room to another, little voices calling out Mama…every 5 minutes.

I’ve been doing my best to give my family normal and to give me some normal lately.  Now that we are, hopefully, at least a year out from a surgery (any surgery – cleft and heart), I’ve been doing what everyone else does on a daily basis.

Live.

But in this new life of normal, I realized my normal is punctuated with bits of abnormal.  It was almost easier with Evan a crooked smile to explain his shortcomings of why he’s not taking a bottle, eating like a normal kid…maybe people would think his face had something to do with the fact that he’s not walking and talking like a regular toddler.

And then…in this normal…I find my crazy is amplified.  Without the comfort blanket of having cardiology visits every few weeks or a specialist visit or a pediatrician visit around the corner…my heart mama neurosis is on overdrive.

It’s not unusual for an  hour to be filled with these thoughts:

– Evan ate a lot. Must be cardiac exhaustion.
– Evan didn’t eat enough. Must be heart failure.
– Evan doesn’t want to nap. Must be a sign of sensory processing disorder from all the surgeries.
– Evan took a good nap. Must be heart failure.
– Evan looks blue. Must be heart failure.
– Evan looks pink. Wonder if he’s overcirculating.
– Evan’s crying. Oh sh!t – don’t get dehydrated.
– Evan happily playing. He’s delayed – not walking, not talking…where is he at now on the Hawaii Developmental scale.

It’s exhausting…and I just want to throw my head in the garbage and play make believe that I live in the land of regular folks.

Where teething and visits to the doctor for shots are the biggest fear I have for my child.

Where outings outside my sanctuary called home aren’t met with apprehension and fear…just normal.

Where side ways glances at my little dude are for admiration and not inquisition.

It’s difficult balance I’m trying to achieve.

One where I long for normality…but one where I’m trying to find where the abnormal is my normal.

One where I need acknowledgement of my son’s hardships…the true and dire nature of his medical condition…but one where all I want is for the world to see him as nothing but a normal kid.

I update his Facebook prayer page with the latest milestone, a random picture of our goings on trying to give the perception that all is well in my world of Evan.  But at the same time, I long for prayers and positive thoughts for the next cardiology appointment (that’s 2 weeks away), for the next heart surgery (that could be less than a year away)…but those requests are just a reminder that our world isn’t like everyone elses.

And that’s all I want.

For our world to be filled with sunscreen and swim lessons, play dates and Playdoh, joy and tantrums…all things of the toddler world.

But, my mind is having a hard time letting go of the worries of the Heartland…the abnormal that is our normal….oxygen levels, pink or blue toes, breathing, eating, drinking, weight gain/loss…all things of the heart mom world.

It’s the worlds that are colliding in my pursuit.  Every worry of the Heartland mixing and mingling with the simplicity of everyday life.

It’s head spinning.  Mind boggling.  And sometimes…all I want to do is throw every thought, every worry, all of it…in the garbage and call it day.

And give my kid the gift he deserves…what he fought for…to just live.