The problem I have with Thanksgiving 2012.

I was standing in the aisle of the store yesterday and overheard a conversation of young 20 something woman.

Ok…I may have been eavesdropping.

But, when someone who is wearing size 0 jeans has a cart full of processed, chocolate covered items….I kind of want to know what she is doing to keep that body.

She was complaining to whomever was on the other end of the line about having to go to 2 different people’s houses for Thanksgiving. How her entire day was going to be full of family and eating.

I’m also reading lots of posts on Facebook about how irritating its going to be to travel this holiday.  Or how stressed out someone is because they have to bake 9 million pies.  Or how frustrated they are because they are hosting the holiday and their aunt or cousin or distant relative decided to come after all.

It’s all relative (you know…family, cousins and such – ha) this Thanksgiving.

Actually…it’s not.

This holiday I’ll be spending it with my best boy.  Just him and I as I send Iz and Craig to family’s homes to enjoy in the standard fare of turkey, dressing, and all the fixin’s.  My boy has endured too many surgeries and the air is thick with colds and flu and the like for us to put him at risk.  Iz loves seeing her cousins and she needs this bit of normal for her.

There’s a good chance I’ll probably eat a bowl of cereal for my meals on the holiday…too tired to make something for myself and too hungry to wait for my best girl and the hubs to come home with all the leftover loot.

I love Thanksgiving.  I love everything about the holiday.  I’ve even gone as far as planning Friendsgiving – a day where we eat Thanksgiving dinner with friends – just so I get to eat the dang meal more than once.

But, this year, my Thanksgiving will be much more about the holiday then the food.

This year, I’ll truly give thanks.  I’ll give thanks for each blessing that has poured down on my family.  I’ll give thanks because what has been the most difficult and trying year of our lives to date…is finally wrapping up…and I have my sweet boy here despite all we have been through.

Many families this holiday won’t be able to say that.  Many of the lives that have entered mine will have an empty hole in their hearts that holds a place for their special little that is now looking down on them from Heaven.  Many families will wonder how in the world to give Thanks when they have endured some of life’s greatest heartaches.

I was depressed about the thought of me and Evan sitting at our house – alone – again – as Craig and Iz enjoyed the day.  But, I was reminded by a fellow Heart Mom who is doing the same thing with her family – her and her little enjoying the day on their own as the rest of her family partake in the festivities – that she is just so grateful that we have this “problem.”  The problem of getting to be at home with her heart baby while the rest of her brood is out….because her (and my) baby is still here.

Our problem – one that I now will rejoice in – is one I am truly thankful for this year.  I’ll say the prayer of Thanks over my bowl of Cheerios or peanut butter sandwich.

As much as I wish this Thanksgiving my boy was like a normal 10 month old – spreading mashed potatoes in his hair and throwing his sippy cup of milk across the room – I will thank God and the holiday gods for my boy who still “eats” from a tube, has a face that is lopsided, and whose heart isn’t whole.

I only hope and pray that you face “problems” as great as mine this year.  I pray that when you stress over the menu, contemplate place settings, suffer through travels – that you are blessed with great “problems” like mine – and find ways to give Thanks.

Happy Thanksgiving, friends.

 

hazing.

When I joined this Sisterhood called, “Motherhood,” over 3 years ago – on June 19, 2009 – to be exact – I felt like I was becoming a part of something incredibly special. I knew from the moment I met Iz, my world would be changed forever.  She became the beginning and the end for me – the absolute reason God created me.  My purpose of this life – all bundled up in a fuzzy blanket and footie pajamas.

And then, suddenly, I was ushered into an underground, secret society within this sorority of Motherhood.  Almost “Skull” (mmm….Paul Walker) like,  I was thrust into an even more exclusive sisterhood – the group of women that are mothers to special needs/medically needy children.  It was almost as if my purpose was a bit fuzzy around the edges.  And then, I had my defining moment.  The moment my best boy was whisked away to a children’s hospital, to be poked and prodded, a future of painful surgeries, a new life marked with scars.  And in that moment of complete grief, joy, overwhelming fear….I knew that my fate was sealed….I was meant to love this tiny bit of Heaven no matter how hard our road would be.

I’m still a part of this beautiful sisterhood called Motherhood.  But, I also wear a badge of honor that only a few of us are bestowed…the one for incredibly special littles. As I sit here in the wee hours of the morning, I look around this beautiful life I’ve created – one only God could have perfectly orchestrated – and wonder.

Am I being hazed?

Hazing is a ritual that’s frowned upon and outlawed in almost all places when one joins clubs, sororities, social groups, etc.  But, its an age old tradition.  The elders of the group “welcoming” the newbies.  Newbies like me, who at one point “judged” other mothers when I was still in that beautiful blissful stage of pregnancy – when I rubbed the life still safe (and quiet) in my womb – as I looked at those women – unkempt, in the same sweat pants (often stained, mind you) – allowing their 3ish maybe 4 year old child run wild and rampant through the stores, letting their baby – their infant! – suck on car keys – as that mom would peruse through the latest gossip magazine, completely and utterly unaware of the chaos around her…and would say, “I’ll never be like her.”

Then…

My child turned 3.

My initiation into the special needs world has been difficult.  But, it was everything I read about – worse at times – but still – I was semi-prepared for the horrors that awaited me. I listened intently to other moms stories of hospital stays, surgeries, medications…all those things that mark you as “one of them.”  Those moments – the ones that bore at our soul and the ones that make our heart sing – are moments that we all share as special needs parents.

But, at the same time as I was enduring the hardest training regimen of my life – learning medical terminology, shoving tubes down little throats, monitoring vitals like it was a matter of life or death (er..I guess it kind of is….) – I was also getting hazed – almost a reverse hazing – into the next part of this sisterhood called motherhood – the dreaded – “Preschool Years.” Instead of being hazed by my “elders,” – I was just being watched by them.  The “elders” of kids in elementary, middle school, teens.  Watching my slow implosion as a parent of a child who is 3 years old.

It was the pig tailed, tutu wearing, Goldfish eating, Disney princess wannabe – that was hazing me.  Torturing me daily – hourly – minute to minute – into this sisterhood.

As she tortured, the other little of my life, the one whose bedside I sat next to, the one I lie awake and stroke his perfect cleft lipped face, the one I anoint with my tears in thanksgiving, prayer, utter amazement of his battles – decides to turn our home into an all out fraternity house.

Where I’m cleaning up vomit.  Where I’m getting puked on.  Where peeing everywhere but the acceptable receptacles (bathroom and diapers…not floors…not duvets…not my beloved sweater by the designer “Mossimo”) – is suddenly the norm.  The little dude decides that this is his party house – bottles scattered here and there, dried something (maybe vomit, maybe tee tee, maybe _______) are on the floor, food of all kinds – half eaten in crevices of couches or stuck in hair.  He decides that he wants to party at 1 in the morning, yelling, laughing, high fiving his friends (a puppy, a lion, a Scout) and wondering, “Where in the world is the lady called “Mama” – I’ll just scream louder – better yet – pee outside of my diaper (yes…he’s talented) so we can party.”

The ritual of hazing, though, by the three year old has made me wonder if I’ll live to see another day where I don’t look in the mirror and hate that I just argued for 30 minutes about the most inane things.

“The sky is so blue!” – me.

“No, its not.” – the 3 year old hazer.

“Yes it is…look!”

“No. IT’S NOT!” – possessed 3 year old.

“Fine…what color is it then?”

“It’s blue.”  – 3 year old…winner.

Defeat.

Hazing with food is the worst.  The battle of “just take a bite” is going to lead me to an early grave.  Why, oh, why is the carrot, the zucchini, the cucumber, the anything that is remotely healthy suddenly have a persona of the worse foods created by God. ever. Our rules of “you take a bite of each food on your plate for how old you are” has gone to the sh!tter.  The bites of anything that isn’t a carbohydrate or drowning in cheese or ketchup now results in body movements like a dog throwing up – complete convulsions of utter disgust.  Tears like we shot took her beloved Ducky hostage. Fits like she’s auditioning for the “Exorcist.”

Speaking of rules….complete defiance.  Utter defiance of all order in our home.  We are sticklers for rules and are believers in schedules, routines, politeness, social order.  Without the above…complete “Lord of the Flies.”  Truth. A switch was turned on recently, in my sweet, little baby girl, that suddenly blocks out all advice of reason.  All the things that keep her safe, keep me sane.  I never thought I’d say things like, “What did you just lick?” “Don’t stand on the counter.”

But I do.  Amongst all my rules for reason – to keep my little Princess safe and sound – I’m met with exasperation “sighs”, eyes rolling, and a quick turn of the heels as she walks quickly to her rooms and says with so much – confidence – “No.  I don’t want to.”

And then proceeds to tell her “friends” – the duck, the monkey, the Minnie – about how I – gasp! – asked her to wash her hands after she goes #2.  I think about going in and putting her in time out – you know – the time when she sits in the corner, kicks the wall and finds ways to make the value of our house depreciate with her little pre-school legs – but then decide that just the mere fact that she went #2 in an acceptable receptacle – the toilet – without having to promise her a pony or bribe her with Willy Wonka’s Chocolate Factory – is kind of a win for me.

Speaking of #2….

Back in the good ole days of college and sorority life – my sisters and I would stumble walk from party to party – often arms linked and singing dirty songs of other sororities or just plain, dirty songs (Easy E, anyone?).

But, these days, in the throes of my new sisterhood, my life is now surrounded with other “dirty songs” sung by the twirling, ballet dancing, thing in my life….songs of the beloved “Mother Goose” – now punctuated with – “poopy” “bobo” – and laughing – an evil, almost sinister laugh – that her clever new rendition of “Twinkle Twinkle Little Bobo” is now the best.song.ever.

My sisters, mothers of toddlers and pre-schoolers, we’ll make it, right?

I know one of you looked at me in fear and said, “I don’t know if I’ll survive” as I shared my experience of the past few months with my sweet girl.

I remember my college days and days of my sorority with so much longing….nostalgia at its best.  It seems like the torture of having to “make my grades” was the worst ever moment of my life…as I would stare at my report card and see a 2.5 – not because of the fact that I found a way to make C’s and a B in only 3 classes I was taking (you know…that costs my parents five grand), but because I wasn’t going to be able to go to the next social function where I’d sing the dirty song and drink the Pink Panty droppers mixed with Natty Light – was the most awful moment that could happen in my 20 something years. Alas…I’d have to resort to drinking in my pajamas at home….by myself (wait….that happens now).

But, I also loved the great moments of my sisterhood.  The bonds I formed.  The friendships I made.  The memories that seem like so long ago…the best times of our lives.

So, as I sit here, in the heart (and broken heart….oh sweet Evan) of this time of motherhood, where I feel like I’m being hazed into the next stage of our life, I know that years from now, I’ll miss it.

I’ll miss the tantrums….that is very closely followed by a tear stained apology and a hug and kiss from my best girl.

I’ll miss the house covered in vomit, poopy, littered with baby bottles…because one day it will be empty..only the sounds of me and Craig asking each other if Iz or Evan called from college.

I’ll miss the late night party sessions with my best boy…because one day I’ll have to ask for him spend time with the lady called, “Mama.”

I’ll miss the silly, dirty songs of poppy and bobo….because afterall….one of the sweetest sounds is her voice…singing at the top of her lungs….ridiculously off key….and laughing uncontrollably.   A sound that makes my heart sing.

So, as other’s watch me get hazed by the torturing 3 year old and partying like a rock star 9 month old, the other’s – who look at my indifference of the meltdown of the two littles in my life, as I lose myself in the latest “U.S. Weekly”, take my spa moment (you know…when you just ignore your kids….ah…bliss)… need to realize…

I’m not being indifferent about motherhood…I’m getting hazed into it.

We’ll make it.

We will.

I think….

 

Me and a village.

You know the saying, “It takes a village to raise a child.”

Yeah..I believe it.

I had lots of help with Iz when she was here.  Help from family.  Help from friends in the form of comic relief fueled by vino.

But, now that I have Evan, my incredibly special baby, “village” has a whole nutha meaning.

Today was one of those hard days for me.  One of the ones where I put Evan in his crib, let him talk to himself, and give myself a time out.

I get on the internet and check out Pinterest.  But, quickly leave the site, realizing I have over 10 boards and at least 160 pins…and none of it has been attempted.  I don’t want to feel even worse, you know, since I didn’t make a beautiful holiday wreath out of a lock of hair, a toothpick, and empty medicine bottles or create a snack for Iz that also doubles as a toy airplane and Shamwow.

I’m surrounded by people.

My family.

My friends.

Evan’s doctors.

Evan’s therapists.

My virtual friends.

And the voices inside my head…kidding….sorta.

I see someone daily for Evan – his feeding therapist, a doctor, his physical therapist, a bill collector.

I almost always make contact with Craig.  I see him daily…and we exchange niceties…

Me: “How was your day?”

Him: “Good.  How was yours?”

Me: “Good….I showered.”

Him: “Sounds like you did a lot, then.”

God love that man.

My friends and I make the effort to see each other.  The ones that are left – still send me texts and call me – every now and then.  We always keep up on Facebook.  I sometimes feel I don’t need to ever leave my house since I get to see their lives chronicled on the internet with blogs and status updates.  Granted – I shove my face with ice cream as I read about their latest trip – in public!! – see pictures of them with their kids without hand sanitizer sticking out of their purses and diaper bags, and a genuine smile on their faces – true happiness – no facade.  Jealousy reeling.  But, the envy passes quickly…the few that have stuck around after the storm, well , they are my life line…meaning…they drink with me in public and don’t care if I ugly cry in front of them.  They give me hugs and say the best things to me, “I have no idea what you’re going through.  I’m so sorry.  Let’s get another glass of wine.”

Then, I have the villagers of the medical team.  The ones I talk to to write me another prescription, write me letters of medical necessity for something extra Evan needs that insurance won’t pay for, the ones I ask to make diagnosis of symptoms over the phone so I don’t have to go into a cesspool of germs that is a doctor’s office, the ones that hear the sound of my voice when they pick up the phone and my voice sounds like nails on a chalk board.  Yes, I know they love to hate me.

I turn to my e-friends.  The villagers of my Heart Moms online.  I don’t know who to turn to a lot of days – like today – but them.  They know exactly what I’m going through.  It’s weird and little creepy to e-cry to strangers.  I accept e-hugs.  I take advice from complete strangers who have suddenly become my extended life. A life punctuated with LOLs, LMBO, OMG, and emoticons.  My safe place where I can tell them stories about me getting thrown up on, taking off my shirt, cleaning up the mess completely topless…with my blinds completely open and the nice family next door gaping at my National Geographic milk makers…that are covered in baby throw up.  And they don’t judge me…well…no one comments that they do….so it must be.

All these people – I’m surrounded by them.

But today, as I watched blood gush from Evan’s nose because he pulled out his feeding tube, frantically trying to stop the bleeding with sterile sponges while he thrashed about, as my dogs escaped the barricade and ran to try and “help” – aka sniffed my lady parts as their tails went in circles – so excited with all the commotion, deciding if I should call 9-1-1, call his cardiologist, call his pediatrician, call his plastic surgeon – or better yet – get them all on conference…I felt suddenly all alone.

Just me.

In this place called the Heartland.

Where I worry about a bloody mouth and the fear of infection that could spread to his heart.

Where I don’t know why I have to be surrounded by villagers that have to track Evan’s every step, if he’s crawling, if he’s eating, if he’s – well – just doing the normal baby things that he’s supposed to do – with an abnormal heart that I hope and pray is doing all it can to give us another day.

Where I can’t just love my boy and have a normal day – a day where I’m not counting every milliliter of fluid intake, a day where I’m not calculating diaper weights, a day where I laugh off spit ups instead of panic that it could be so much more.

Just me.

It’s a lonely place – this motherhood bit for a child with special needs.  So many people surrounding you to help make your everyday with your special little one.  So many people rooting for you to succeed.  So many people praying for my boy all the time.  The whole village – raising my boy.

Yet…I feel so alone.

It’s isolating.  No one truly “getting it.”  You don’t want people to “get it” but I sure as hell wish they would imagine my life for a minute.  Stop for a second and just try to picture this place I live it.  Then, I want them to go back to their world….because I don’t wish this life on anyone.

Because honestly, I don’t wish it for anyone, because this life was meant for me.

My boy was meant for me.  Out of all the babies up in Heaven…I got my Evan.

So, it may take a village to raise him.  It may take the village to get him to his best self.

So, I’ll never be alone…even if I feel like it most days.

I have my family, my friends, the Heartland…and my boy.

And, he’s the best part.

 

 

“There”

“What if Evan were to have a heart attack in two days?  What then?”

I looked at my cardiologist – open-mouthed – unable to really grasp what he was asking me.

“Well – I’d make sure we lived those two days to the fullest and then if it happened…I’d take him here and make sure you and everyone else did everything you could to make sure he was ok.”

“Ok – then that’s what you do.  Because, we do not know what tomorrow brings…for any of us.  It is a process.  It is a process of healing and letting go of the guilt you feel.  I know how hard it is…remember my daughter had open heart surgery at 6 months of life.  I would go into her doctor’s office waiting with every question, too. But, now, you need to live your life as normal as possible.”

I looked at Dr. R.  Tears were falling.  I argued that our lives are far from normal – we have medications to give, a feeding tube, therapy weekly, doctor visits – whether it’s cardiology, craniofacial specialist, or regular pediatrician visits, pre-caution after pre-caution as we head into the cold and flu season – so living “normally” is a stretch.

He gently reminded me that it will take time.  But, eventually, we will find our normal.  He went over Evan’s heart – his single ventricle heart.  The heart that has no cure.  A heart that will need tweaking again in a few years.  A heart that may give him a full life, may lead him to a transplant, may go into failure.

Like always, Evan will dictate what he needs.  His heart will show us what it needs…when it needs it.

It may be years down the line…months…weeks…days…

I hold my “glass” baby – so easily breakable – so fragile – with arms that are fearful to let go – fearful that if I give up and inch – he’ll shatter.

I try to remember that I’ve built up a pretty cushioned foundation beneath my feet – a top notch medical team, an army of prayer warriors, friends and family who are poised beneath me with safety nets – to catch me or my boy if one of us stumbles.

I’m learning slowly to “live” our lives.

It took a lot in me to go on our walks.

But, seeing Evan’s face when we ventured outside made me realize his life isn’t within the confines of the four walls I shelter him in…his life is out “there.”

The “there” that holds promise of normal.  The “there” that doesn’t promise me a life without sickness, without struggles, without battles.  The “there”  that does promise smiles, laughter, learning, exploring.

I’ve talked big – saying that I want to give Evan normal because he’s fought so hard.  I’ve talked big – saying that I’ll put my trust and faith in God to protect him.

Now it’s time I walk the talk.

I can’t do much about the seasons of illness – cold and flu – that is inevitable in our parts.  Evan will have to stay in doors for the most part.

I can start researching fun things to do in the spring and summer instead of researching mortality rates, complications…

I can start believing that God’s going to give my boy many years with us instead of agonize if He’s going to take Evan from me sooner rather than later.

It is such a process.  I’ve trained myself to expect let down.

But, despite what some may think, God has exceeded our every expectation for my boy.

Yes…he was born with the an incredibly unique and rare syndrome with a very sick heart….

Yes…he requires more surgeries to repair his heart and his cleft…

But, look at him now.

Look at the him…the living promise of healing and faith…in a onesie with a frog on it, covered in drool, with baby food in his hair, as he chews on his toes and pulls on his doggy’s fur…

I realize…God has given me normal.  I’m getting to do the laundry, make the dinners, clean up the clutter, wipe the faces, make the bottles, kiss the boo boos, cuddle the chumba-wumba….

All the normal I’ve been trying to find…is right here…wrapped in this perfect package of the life I get to have with my imperfectly perfect family.

I’ve been so busy agonizing about “trying” to be normal…I’ve failed to see the beautiful life that is my normal.

I’m still working on me…it’s a process to let go and let God.  It’s a process to allow myself to protect him without smothering him.

I’ll get “there.”

My boy is “there” – as I watch him learn to eat, laugh at ducks, squeal when he watches his doggies run around the yard.

My best girl is “there” – as I watch her run over to her brudder and steal toys from him, ask “when are we going to Disney…as our family?” since I so stupidly mentioned it to her once…

My best friend is “there” – as he tells me about the awesome trip he can’t wait to take Evan and Iz on in the summer, as he makes his chumba-wumba laugh and squeal…

I’ll get “there.”

I will.

 

 

Reality

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 room..at 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.

Moving Mountains – Happy 6 months!

Today is a special day.

My Evan turns 6 months old today.

He’s been in our lives for a half a year.

Time flies.

There were many moments in the first few months where I wasn’t sure if we’d get to see this milestone.

I cringe at the thought.

There are moments, still, where all I do is pray that we’ll see our boy celebrate his 1 year old birthday.

I pray for birthday hats, streamers, balloons.

I pray for cake and ice cream, mountains of gifts, everyone singing loudly…a little off tune…but the song still sounding like the most beautiful melody out there.

As a Heart Mom, I’ve realized our wishes for our children don’t span very far.

My wishes for my boy are so different than what they are for Iz.

I pray differently for him than I do for her.

Please don’t see this as pessimistic…

Because my prayers, though seemingly simple and almost absolute for healthy children, are the spoken prayers on every Heart Mamas heart.

Until yesterday…I prayed differently for the both of them.

I understand that everyone’s eternity is only a heart beat away.  That fact was solidified in the horrible tragedy of the Colorado shootings.  Lives were taken in a senseless act.  Children were lost.  Parents are mourning.  People are seeking answers.

While my prayers for Evan are still very different – prayers for a successful open heart surgery, prayers for an uncomplicated and smooth recovery, prayers for healing, prayers for successful repairs on his cleft lip and palate…

I also pray for first words…first steps.

I pray that I get to witness these milestones like I witnessed the milestones my boy has reached so far in his first 6 months – first heart surgery, first (and second) heart catheters, successful recoveries….

First sounds of cooing, first sounds of laughter.

First bath, first time sitting in a high chair.

First foods – rice cereal (yuck), broccoli and peas (yum!), applesauce (yuck), avocado (yum!)….

Rolling over (just once…but it counts!).

Sitting up.

His pudgy hands touching my face over and over again…like he’s trying to tell me…”I know you love me.”

His legs kicking in excitement when he sees my face.

His smile without limits that brightens up my day…and almost anyone’s day…when I walk into the room.

I don’t remember praying for these things with Iz. I don’t remember relishing in the simple “firsts” I’ve experienced with Evan.

It’s not that I didn’t cherish my girl….they were just absolute for her.  There was no reason to pray for them nightly.  I prayed for first days of school, first loves, for her children and her children’s children.

For Evan…my heart longs to pray for those things too…but that fear – that is not of God – paralyzes me and has me wishing and praying for a future that is a little closer.

My heart is telling me to pray for those same firsts plus more…

And I finally did.

I can’t talk about my faith in God if I don’t walk in the promises he’s made me.

He’s promised me healing.  I will step out of my fear and start praying without limits.

Stop asking God for those “simple” prayers and start asking God to move mountains.

Because my Evan turns 6 months old today.  A milestone I wasn’t sure we’d reach.  A milestone so many Heart Moms who lost their Angel babies prayed for.  Those mother’s – mourning their children in this world – but knowing their children are finally healed.  A milestone so many of us consider just as great as battling through a surgery.

While so much is still left in the Hands of my Creator…we have been given 6 months of heartache, joy, struggles, accomplishments.

Today, I pray for those things in the not so distant future…first steps, first words, open heart surgery, recovery, cleft repairs.

But, today, realizing how time can be taken from anyone – anyone – at any moment – I also pray for those things I was fearful to pray for – first days of schools, first loves, for Evan’s children, and his children’s children.

Because today, as we celebrate my Evan’s 6 months birthday, and as little as it may seem to some, to us…God has already moved mountains.

Happy 1/2 birthday son.

Keep fighting.

Getting Away from it All

The horizon was a tapestry of blues, yellows, orange – that sacred moment where the sunrise meets the water.

The air was a delicious mixture of salt and sand.  I couldn’t believe how beautiful the morning was as I looked from our balcony towards the crashing waves of the beach of the Gulf of Mexico.

The day was still waking up.  The seagulls were flying high in the sky – almost  kissing the clouds as they greeted the day.

I wanted to hug the day in appreciation for the feeling of excitement I had in my heart – a day filled with sun, sandcastles, water, relaxation.

But, my arms were full and so was my heart.  I looked down at my best guy and could feel his heart beating against my chest.  I could feel the lub dub lub dub that haunts our lives daily – the abnormal heartbeat that is now our new normal.

His eyes were wide – taking in his new surroundings.  Drinking in the sights that him and I have been greeting everyday on our family vacation to the beach.

Our eyes locked and he gives me a huge, cleft filled smile.  I hug him a little tighter – saying a little prayer that he’s making the same memories I’m making.

I cherish this time at the dawn – just him and I – before my best girl and my love awake for the day.

Just him and I – the salt, the sea, the sand – dancing our little dance with the melodies of the waves crashing and my humming of “Twinkle, Twinkle, Little Star” as music.

Overcome by feelings of joy for the past few days, I could feel tears well up in my eyes.

The overflow of joy spilling out of my heart – knowing that for the past 5 months our hearts have experienced so much sadness, so much fear.

But, now, in this moment, our hearts knew more joy than fear.   Looking back at the last few days on our vacation – a time to get away from it all – our hard hearts had somehow transformed – had been renewed – knowing joy and happiness once again.  Our days – even if it was just for this short time – were once again filled with laughter and hope.

I hugged my Evan again.  A squeal escaping his beautiful mouth and his arms and legs flapping in excitement.

The tears spilled over as made a conscious effort to ingrain this moment in my memories.

I kissed his head – salty from the mixture of the ocean breeze and the beads of sweat collecting on his forehead (a sad reminder that his heart is working overtime) – and whispered to my boy, “No matter what happens – we’ll always have this moment.”

 

Three weeks earlier…..

“Dr. R – we really want to go on a small family vacation this summer.  We’re hoping to give our daughter a fun summer trip – especially since she has been through a lot these past few months, too.”

His brow furrowed.  He took another good look at Evan, reviewed his chart once more, and looked up at the ceiling…

“He’s been pretty stable the past couple of visits.  Let’s see how he does on his visit the last week of June.  When did you plan on going?”

I looked at Craig.  He shrugged his shoulders – of course – deferring to me – the party planner and social director of our lives.

“Umm – I think around the 4th of July?  For the holiday weekend.”

He smiled and said, “Ok that will work.  We’ll see how he does on that visit and then you can make plans.”

I returned his smile but felt an overwhelming urge to yell, “Are you serious?  Planning a family vacation – booking a place, getting meds ready, packing for 2 kids – one with special needs, getting the house settled before we leave…in less than 10 days???”

“Sounds like a plan.” I replied.  Telling my inner OCD mental case to calm down and stop wringing her hands.

*******************************************************************************************************************************************************

Planning vacations is an art.  There has to be a perfect balance of timing, finding the best location, finding the best time, checking weather, checking activities.  I typically plan these things months in advance – knowing that I’d need to price shop and compare to get the best deals.

But, that’s just not a luxury we get anymore with our heart baby being at the stage we’re in.  It’s a fine balance – trying to live our lives as normal as possible with a baby that hasn’t been repaired – but trying to live our lives carefully with a baby that is stable but could suddenly make a trend downhill.

I knew how blessed we were.  I knew that Evan being stable was a blessing. I also knew that I couldn’t take for granted a second of him being “normal” before his open heart surgery.

We needed a family vacation – even a small one – a time where the four of us could make memories that were filled with laughter, uncontrollable giggles, staying up late, waking up early to chase the day.

Craig and I went back and forth on going somewhere.  Question after question of could Evan handle the trip, could he handle the heat if we chose to go to the beach, would we be able to swing a trip so last minute without breaking the bank, could Craig take time off from work – knowing he has been saving all those days of PTO for Evan’s surgeries?

Could we do it?

The answer always came back to Evan.  Him showing us that every day is a gift.  Him reminding us that no matter how difficult and trying the times have and will be – that we need to find joy and happiness in our today.  Him reminding us that we aren’t going through all of this – the doctor’s visits, the surgeries, the future surgeries, the medications, the sleepless nights – all of it – to live our lives in a bubble.  He reminds us every day – in his smile, in his love for life – that his heart condition is a part of our lives – but we can’t let it rule our lives.

On June 20th – we got the ok to go on a trip.  We were told we had to make sure that wherever we went, we’d need to find somewhere that had a children’s hospital close by, that we had all of our medications all of his feeds – everything.

We decided that a beach trip was in our future.  Our best girl loves being in the sun and often talked about the ocean…you know…as she watches the water drain from the bathtub and knowingly says, “Da water is going to da ocean.”

I searched and searched for days trying to find last minute deals to rent a beach house.  We wanted the comforts of home – needed a home type atmosphere – since I’d probably be spending it indoors with Evan if the heat was too much for him to handle.

Finally – a week before July 4th – I found a beach condo to rent.  It was within our price range, was within a resort style setting with couple of pools on site, and right on the beach.

I researched travel insurance – knowing that something could happen to Evan and we may have to cancel last minute. Unfortunately, there was that fine print that said no refunds would be honored if an illness occurred as part of a “pre-existing” condition.

Sigh.

So, we lived on a prayer.  Hoping that our boy could stay well and stable so we could go on our trip.

The excitement started to build as the days approached.  Craig was having a rough couple of months at work and needed the vacation badly.

I just wanted to remove myself from my “life.”  Even though any vacation is just a business trip for moms – we take our work with us – our littles not aware that vacation mode means no tantrums, no crying, no whining.

But, something about being on a beach – or at least by the beach – makes the wiping of the noses and bums, the spitting up, the battle of the “Because I said so – that’s WHY!” – just a little more bearable.

I got all of Evan’s medications refilled, packed up extra syringes, extra feeding tubes, extra feeding supplies, extra batteries for his oxygen monitor, his scale to weigh him daily, his binder full of his medical history and current medical state – pretty much his little nook in our house devoted to all things Evan.

He was doing well and we were getting excited.  I packed up our car the night before with the exception of coolers and food.

It was really happening!  Our boy was doing great and we were going away – far away from  it all.

Easy there killer…

My bubble of excitement quickly burst the morning we were set to leave.

Our best girl – the one who has been the picture of health for months – woke up with a cough that sounded like she had smoked a carton of Marlboro reds and a nose that was running  and dripping worse than Niagra falls.

I didn’t know what to do.  If she wasn’t going to be in close quarters next to Evan for 5 hours straight – we’d go.  But, our fear of getting Evan sick never leaves us and we take so many precautions when it comes to him.

So…even canceling a trip to keep him well would have to happen.

Craig and I were so disappointed.

We knew that our little family needed this trip.

Craig headed out for a few hours to clear his head.

I packed up the kids and went to visit Dr. Grandma.

She listened to Iz, took a look at her ears and proclaimed what we assumed – it’s probably just a virus.

Bah.

We headed home and I was prepared to call the condo owners to let them know we weren’t going to make it.

I couldn’t bring myself to do it.  The car was packed.

So, I did what any good mother would do.  I gave Iz an s* ton of cold and cough medications, made Evan sit underneath a canopy fashioned with a thick blanket over his car seat, packed handsanitizer and wipes, got on my knees and prayed to God and to the vacations gods of sun and sand, and had the phone number and Google maps directions to the closest children’s hospital handy – you know – for both of my sickly littles.

Craig walked in from his morning and looked at me. I’m not sure he recognized the madwoman before him that just kept repeating, “We need to go. We just need to go.  We need to go.  Let’s go.”

For someone that has been uber cautious since day one of Evan being born, this was very unusual of me.  Call it the Heart Mom Breakdown or what not – but I had passed the point of reason – rationalizing that Evan and Iz had been around each other for the past few days when Iz started to feel poor and that if she could stick a toy in her mouth and hand it to her baby brudder who would obligingly put the toy in his mouth happily…well…he’d be just fine.

My gamble paid off.  The guilt I felt as we were sitting in the car for 6 hours as my girl coughed up a lung and my boy whined and fussed were greater than the guilt I feel after I read “Fifty Shades of Grey” on my way to church.

But…all was well when we saw the ocean.

Maybe it was the hefty cold and cough meds I pumped into her poor little body.

Maybe it was the countless prayers I said over her and my boy as I laid my hands on both of them for God to heal them so we could have some healing over our souls with the help of the sunshine and water…

But, everything was great.

Even with the tantrums and whining.

Even with Evan’s feeding pump not working for a few hours…

Even with me trying to figure out a way to feed my boy who hadn’t taken anything my mouth for 5 months…

Everything was what we needed.

Craig and  I took turns staying indoors with Evan since the heat was just a bit too much for him.  Which meant, our best girl got undivided attention from each of us.  God blessed me with a phone that didn’t work and a slow internet connection – I was unplugged for 4 days and plugged into my family, instead.

Greatness.

We had ice cream for lunch AND dinner, the adults had cold beers on the patio as we looked out at the sunset with the salty breeze as the littles were allowed to watch as much T.V. as they wanted in the afternoon and early evening, my running shoes didn’t see the light of day as I opted for flip flops and sandy toes and sleeping in with a nap here and there, we had dinners that were filled with giggles, we had days filled with searching for sea shells and building sand castles, we had snack time where I showed my girl how an Oreo and a homemade s’more cures the saddest of hearts, we munched on chips and dip while we talked about our day full of adventures, we cuddled on the couch at night as we popped in a DVD and belly laughed over the Muppets, we read book after book at bedtime….not having to rush since our days and nights were just a continuation of the euphoria we were experiencing.

Craig and I both had moments where we found ourselves in tears.

Him and I both praying for many more times like these for our family of four.  Crying tears of hope for our boy.  Both of us speaking and professing to God that we’d be back to this place – all four of us – next year and every year after that for many years to come.

Crying tears of joy for our girl – who is growing up so fast – who is experiencing some of life’s toughest lessons of pain and sadness as our family deals with the reality of our lives with her brudder that is so very sick.

Those tears aside – our trip was everything our family needed.  It was a time of renewal.  A time of healing.  A time to make memories – that no matter what our future holds – we’ll have memories of laughter, of the ocean, the sand in our toes – with our best girl and our best boy right alongside her.

 

 

A little bit of me

In the hospital, both times, I remember feeling so isolated and alone.

I would read on Facebook or on blogs about my friends and their fabulous lives.  Of course people normally just post the awesome stuff – rarely allowing the world to see the down side of their lives.

I couldn’t believe the world was going on while I watched Evan suffer and struggle.

Yet again, another reminder that life went on – must go on – despite of how I felt.

I’ve posted about how much pain I’ve been in and the hurt I’ve experienced ever since Evan was born with the loss of friendships and the realization that our lives as special needs parents have become too much for some people in my life.  Probably the reality of my life – the hospital, the surgeries, the fear, the possibility of loss – may be too much for them to handle.  I’ll never know why my family was abandoned during some of the darkest times of our lives.

Now…let me share with you some of the light that has surrounded me – us – as a family.

I have some really amazing friends.  I can now count those people in my life on a hand and half :-)

I never knew how important friendships were until recently.

Not the skin deep, meet up for dinner a couple of times a year, maybe a text here and there, wish you a Happy Birthday, like my comment and picture on Facebook kind of friendship.

I’m talking about the diving into the souls of one another, allowing our skeletons in the closet to come out and play, the being there no matter what what kind of friendship.

I’m reminded daily of these friendships when I look down at my wrist at the gift they gave me for my birthday this past December.  They gave this to me saying to stay strong and remember that I’m going to love Evan and hold his heart in my own no matter what happens.

Little do they know….I look down at this bracelet and am reminded that in these dark times we are in as a family…someone is holding onto my heart that feels like it breaks a little each day as I watch with fear, anticipation, and worry about the unknown for my boy.

In the hospital – I got texts, emails and calls from these women checking on me – if not daily – at least a couple of times a week. Never asking for information – no hidden agenda – just a friend checking on another friend – reminding me they were there for me.

They rearranged work schedules, hired sitters, found time in their busy lives as moms and working moms to come visit me – rescue me – from the monotony of the hospital.  I could see in their eyes as they walked in Evan’s room – a little bit of fear, a little bit of apprehension – but they sucked it up – and were there for me.

I don’t know how to express how much that meant to me.  I don’t know if there are words to truly convey how much it means to feel the arms of a good friend give you a tight hug, remind you how to laugh, share in your pain.

**************************************************************************************************************************************************

This past weekend, I got away with a few of these girls for a girls trip.

I was only able to stay for a day and half since I couldn’t leave Evan for more than that…my heart wasn’t ready to.

But, I knew I needed it.  I needed a break.  They knew I needed a break.  We all needed a break.

We escaped to one of their lake houses about 2 hours away from the city.

We had a weekend planned of shopping at a large outdoor market, cocktails, anything was going to be awesome – we were kid free! Ha!

We talked, we laughed, we cried – ok I cried – a lot, we shared details of our life – the good, the bad, the ugly.

There is something about mojitos, chips and dip, music, a liter of wine, smores, and shopping that is extremely therapeutic.

Laughter is inevitable when you’re running away from tracker jackers, learning how to canoe, blowing up floaties, floating on rockets, sweating in the Texas heat while trying to bargain.

I shared with them details of Evan’s journey that I hadn’t shared with anyone but Craig.  I cried in front of them – the tears falling and not stopping – a release that I didn’t realize I needed.  Normally, these tears are saved in the comforts of my living room, staring at Evan as he sleeps, in the middle of day when Iz is at school, and Craig is at work.  Because these tears are sacred to me, they are tears that come from deep down in my soul – tears of pleading to God to heal him, tears accompanied with thoughts spoken out loud – “I can’t lose you.  I need you to be ok.  I will do whatever it takes to get you well.  I need you here – forever.”  The words I often write about, words I say in my head, but never out loud unless I’m alone with Evan – stroking his chubby cheeks, kiss his thunder thighs.

But, there’s something about good girl friends, late nights, and 4 glasses of wine – that really allow you to let go.  And I did.  I’m sure it made them uncomfortable – I mean – ugly crying is always a little awkward – even if it’s fueled by an adult beverage.  But, they listened.  They cried with me.  They said they’d be there for me no matter what.

And then, someone fell over – everybody in the lake house getting tipsy (sing to the tune of “Everybody in the club gettin’ tipsy”) – and we laughed.  The moment over but cut with some joy and big, belly laughter.

Greatness.

This weekend I found a little bit of me that I didn’t know existed anymore.  The part of me that can just laugh just to laugh.  The part of me that remembers what it’s like to have some normal.  The part of me that remembers it’s ok to be normal and not feel like I have to be in a funk, in a rut, in a constant state of breaking down just because our lives surround a broken heart and a daily need to find a solution to our new normal.

Thanks, friends.

Can’t wait to get back…

*I’ll add pictures soon…have to sift through which ones are appropriate for the internet…*

 

1000 words

A picture says so much.

It conveys emotions in one still frame.

A couple of weeks ago, a photographer took time out of her busy schedule to shoot Evan’s “newborn” pics and family pictures.

It hurt my heart knowing we didn’t capture any of Evan’s newborn-ness when he still looked like a newborn.  But, being in the hospital for the first 3 months of his life kind of made it hard to schedule a photo shoot.

Heather, from Chunky Monkey Photography, donated her time and her services to my family.

She has blessed us beyond words.

And I say this…not just because of what she did for us….but because of the beautiful pictures she took, the fact that she met us 7:30 AM in the morning so Evan didn’t have to deal with the Texas heat for our outdoor shoot, and the fact that she was so easy to work with….but BOOK with her for EVERYTHING you may need pictures for.

I battled with the demons of vanity in regards to Evan for a long time.

He doesn’t look normal.  Heart aside, he has a very severe facial deformity in his cleft lip and palate.  He will require multiple surgeries throughout his LIFE to correct his face and his mouth.  He will require extensive amounts of orthodontic work.

All of this…on top of his sick heart.

But, we already made the decision that we would pay whatever it costs to fix his heart and his cleft.  We want him to have every opportunity to live a healthy, normal, and God willing – long, long life.

But, when it comes down to it…I see my boy as a perfect reflection of Christ.  A boy who will bear scars all his life…a boy who will endure so much…to fulfill a purpose for his life that only God has mapped out.

My Evan is beautiful.

Enjoy each memory you’re about to see…I only posted a few since there were SO many!

OUR SUPER HEART HERO!!


BLESSED.

My Super Hero girl!  Because she has gone through a lot too…

I love this. Because we still experience JOY. Everyday.

My beautiful family.  

Thank you a million times, Heather!

Just breathe

Breathe in.

Breathe out.

Time – 20 minutes 53 seconds

Distance – 1.89 miles

I could hear myself breathing. One breath at a time.  In and out.  Steady. Rhythmic.

The Runkeeper app on my phone informed me how much I had run and how long I had run.

Close to 2 miles…

What was I running from?

Where was I running to?

This morning I woke up with my stomach in knots.  A normal occurrence on days we have cardiology visits for Evan.  And he’s been doing so well.  My little Michelin man – all rolls and all grin – has been thriving.  He has the occasional vomiting episode the doctor is concerned about but overall, he’s been pretty good.

I checked my phone – 4:59 AM.

Evan needed meds at 5AM and a feed at 5:30AM.

I decided to just stay up and do his 5:30 AM feed and let Craig sleep.

To pass time, I hopped on the internet to check on the daily happenings of my friends on Facebook.

I then saw that a fellow heart mom I had grown very close with was in dire need of prayers.  Her daughter had surgery last Friday and had been on life support.  The attempts to wean her from that support failed…and now the future of this little girl was slipping away.

I prayed.  Asked others to pray for Evan and for Ro.

I decided I needed to run.  Run away from it all.  Get my head clear.

I had a Body Back session last night. So trying to run less than 10 hours later is kind of ridiculous.

But something in me said, “Do it.”

So I did.

I opted for no music on my run.  I needed my mind to be clear.  I needed to hear my breathing.  I needed to pray.

I recalled something my Body Back instructor wrote in an email to me.  We’ve been discussing ways to tweak my diet and my work out regimen to I could truly optimize the 8 weeks and lose as much weight as I could.

I got stuck on something she wrote. After talking about calories and workout regimen she started another paragraph that started with: “So, here’s what it comes down to. Patience and self love.”

I remember reading it and it sticking on the forefront of my mind. I closed the computer and tried to ignore that statement.

As I remembered the statement, my feet quickened and my pace increased.

What was I running from?

Where was I running to?

I ran and I ran.  My head cloudy with thoughts of Evan.  Thoughts of Ro. And the nagging phrase Amber wrote to me:  “Patience and Self Love.”

I kept on running.  Focusing on my breathing.  Just trying to run as far as I could in hopes I could escape from some of the pain of my reality.

I started to feel my legs get sore.  A welcomed reminder that I my body was changing.  I focused on the uncomfortable sensation but kept on going.  I didn’t feel tired, yet.  I knew I had more in me.

I looked at the clock and it had been 48 minutes.  It was almost 7am and I needed to get home to get my family up and moving for the day.

So I stopped.  I knew home was about 10 minutes away – perfect for a cool down, walking pace.

Suddenly I didn’t have to focus on breathing.  Suddenly I didn’t feel the familiar ache of my muscles when I ran.

Suddenly I had to face everything.  And the tears started to fall….

And that’s when I ran – I ran right into the reality I was trying to avoid. {What was I running to?}

And that’s when I realized I was running from the fears that lurk in my mind everyday. {Where was I running from?}

“Patience and Self Love.”

Patience…

I realized that I’m so eager and so determined to work out and see results and forgo the patience is because I’m so afraid of having “home” taken from me.  I know how quickly our routine as a family can be disrupted in an instance.  Evan could go from good to bad…and then we’d be back in the hospital.

Time, I feel, is never on our side.  We’re dictated by the next medication, the next feed, the next doctor visit, the next therapy session.  There is so little time for much else that I am desperate to see results instantly – weight loss, strength, endurance – in lightening speed when really what my body needs is time.  It’s not about the physical change…it’s about the emotional changes I am desperate to reach – to a time of peace and certainty. Patience…

Self love….

I’m depleted.  I’m emotionally drained.  I give myself everyday to care for my Evan.  I give myself everyday to give my Iz stability in this time of instability.  I give myself every day to my husband to be his confidant, his escape from the stresses of work and life.  I’ve lost some of who I love in all of this.  I’ve lost some of the joy of who I am in everything we’ve been through.  I’ve neglected me for so long that I’m not quite sure who I’m trying to be.  Is the me of now enough?  Sometimes I don’t know.  Sometimes I wish I was so much more for those I love so I could “fix” everything that is wrong in our lives.  The concept of “self love” is so foreign.  I’ve lived so much of my existence as being something for someone – a good daughter, best friend, dutiful wife, doting mother.  I sometimes feel I fall short of all these things.  It’s also hard to be comfortable in my own skin when so much around me says to be something else – “younger…thinner…prettier….”  I’m lost in a world of comparing my best self to the best of the world…and not sure if it’s me that can’t keep up or if it’s the world that’s asking me to be an unrealistic version of me.

I took in all of these realizations on the way home.  I cried – from exhaustion, from realization.

I started to pray.  Just a simple, “Dear God…help.”

And that’s when I realized…

I just need to breathe.  In and out.  Focus on my breathing.  Focus on the pain we’re experiencing.  Pain means we’re changing…and working towards something better.  Patience is already here…isn’t that why Evan is so stable now?  Isn’t this time a time for reflection, preparation – God pulling me closer to him – asking me to finally surrender it all and preparing us for what’s ahead?

Self love – depleted – I’m depleted in it.  But isn’t now the time I need to turn to something – Someone greater – to fulfill that need?  I’m trying to be the best for everyone and forgetting the most important part of me…a child of a God who loves me so…who wants to love me despite of how I feel for me.  His love is enough.

My body is changing and I realized it’s not about the weight.  It’s my mind that is desperate for change…

So today…I’m still struggling.  Still unsure.  But there’s so much I cannot control but there’s one thing I can.

And that’s just to breathe.