My Tatay

It’s a walk I’ve walked before.  Halls that smell of sickness and fear.

Head hung low. Eyes bloodshot from tears.

Glances of sympathy from passersby.

But this time, I didn’t have hope deep seeded in my soul.

After a long fight and a blessed life, my grandfather – my Tatay – is home.  To the place where his ailments are gone. To a place where he will be reunited with his wife and the 5 children he buried in his lifetime.

My first memory of him is of a perfect apple that was peeled.  I was probably around 3 or 4. My parents were probably at work; trying to make ends meet in our small 2 bedroom apartment in Berkeley.  My Tatay would watch me and my sisters every now and then.  He would always peel my apples because I hated the skin on them.  Another memory – I would also sit next to him in the bathroom and watch him as he dyed his hair.  He was a man that liked to look good.  He’d tease me and try to comb the gunk in my hair.  I would giggle.

My last good memory of him was the day after his spine surgery.  Iz and I walked into his room to visit him. He was sitting up and having a snack.  He asked me in Tagalog – our native tongue – who was with Evan? Where was Craig? Did I want to sit down? I laughed and gave him a kiss on the cheek.  Less than 48 hours after spine surgery, 92 years old…and he was STILL trying to take care of me.

Those memories – the firsts and the last good one – embody the man that I will always remember.  A man who put others first.  A man who wanted and loved laughter. A man who loved his family beyond what love should look like.

Because of him…I’m here.  Literally.  In this moment.  He was the first generation immigrant to come to the USA.  He took the risk to live the American dream.

Slowly, he started to have his kids come over.  My dad was one of them.  My mom was able to get a teaching job in San Francisco in pharmacology. She left her life as a doctor to start our life over to give us an opportunity to better our lives. We lived with Tatay until we got on our feet.

Everything good about my Dad I see in my Tatay.  He is strength and courage all wrapped in one body.

Tonight, as I listened to the machines beep in his hospital room signaling the danger signs that it was almost “time,” some may have seen a sickly, old man laying helpless in a hospital bed.

But me.

I saw a man surrounded my his family as he bravely took his last breaths.

I saw a man who prayed of giving his children the “American” dream…surrounded by those dreams come true.

I watched as those I love most cry out in pain, in sadness, in emptiness of death.

But, I also watched God work a miracle.

I watched as healing – ultimate healing – took place.  I prayed over my family.  Verbalizing what the Holy Spirit was doing in my heart.  Realizing that God’s grace and His mercy over Tatay was not in his life….but in his death.

God’s rich blessing filled Tatay’s life with the family he created.

In his death…he experienced nothing but peace.

As he took his last breath, he was finally reunited with the wife he loved dearly and the children he lost.

It was then I realized…there is still hope.

A hope that is found in the legacy my Tatay leaves behind.

The hope in the whispers of goodbyes that are intertwined with the welcoming open arms of  Heaven.
The hope that is found in my God who finally called him home.
I’ll miss you, Tatay.

 

 

 

 

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.

 

 

 

 

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.

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.

 

 

“We are family! We even have a baby with a C-H-D!”

Today’s post is from one of my sisters.  Candice is the middle child and I’m the baby of the family.  Chonnie is the oldest and has taken the reigns of our business we once shared pre-Evan and has a newborn at home.  She wrote a beautiful blog a year ago for my boy.  You can read it here.

Candice has been my “keeper” since college.  She’d call me every now and then and rescue me from dorm food.  She’d slip a $100 bucks in my checking account for beer grocery money.  She took care of me.

Now, she still does.  I’ll never forget the conversation we had when Evan as born. We were at my parent’s house and Craig and I had a conversation the night before about our will.  Candice and her husband had been named guardians for Isabelle in our will.  We weren’t sure what we were going to do for Evan.  I could not ask someone to take on the responsibility of raising him…with his future filled with question marks, surgeries…perhaps a lifetime of them.

Candice, Evan and I were in my parent’s room and I was giving Evan a feed.  And I told her that Craig and I were going to re-do our wills. I was prepared to say, “We are going to talk about who will get Evan if something happens to us.”

She just looked at me, picked up my son – feeding tube coursing through his nose, unafraid to hold him like so many people had been – treating him like he was something other than a baby – and looked right at me and said, “We get him too, right?”

Just like that. Claiming him when I wasn’t sure if anyone would want him.  But, just like years ago…she has always taken care of me…and now she’s decided to take care of the best of me….my Evan.

It was October 14th, 2011.  A day I will never forget.  My parents were visiting my family and I to celebrate Grandparent’s Day at our children’s school.  Then, we get a call…the call I will never forget.  I will never forget the sound in my sister’s voice as she tells us, “Something’s very wrong with the baby.” I will never forget the sound of heartache in her voice as she tries to help us understand the news she has just gotten from her doctor.  I will never forget her pleas and the agony in her voice as she cries, “What are we going to do?” 

That was the day we found out that Evan – my nephew who’s birth we had been excitedly waiting on – a new buddy for my son, Garrett, who at this point, had been the only grandson – may not make it to term.  As a mother, I ached for the possible loss of a child; as a sister – I wanted to protect her and take her pain away; as an Aunt – I wanted answers.  What is this condition?  What can the doctors do?  I researched what I can – trying to feel like I’m “doing something” in such a helpless situation.  I prayed – prayed for God to give this beautiful boy – who has been loved since the minute we found out he was coming – to have the strength to fight.  I prayed for my sister and her husband to have the strength to leave it in God’s hands. 

Forward, nearly a year and half later, my beautiful nephew – who’s smiles melts your heart – who’s strength gives you hope – who’s will has overcome everything the doctor has said.  Congenital heart defect – bilateral cleft and palate – I can give you so many research information on these complicated medical issues.  I can show you what research says regarding prognosis, treatment, etc. I can do that – to raise awareness regarding heart disease and children.  But, I won’t. 

What I want you to know – from an Aunt of a child with these conditions – I have learned that there is a fighter in each of us.  A fight to keep going – a fight to live life – a fight to make each day count.  There are days where the daily frustrations of work, homework, kids not listening (as parents you know we all have these) can be overwhelming – sometimes I forget what’s most important. 

Then, I remember.  I remember that day.  The day we got a call.  The day all of our lives changed forever.  The day the fighter in all of us got just that much stronger. 

–          Candice Matthews (aka Tita Candice J )

 

Let’s celebrate.

The enormity of the day has fallen on my shoulders.

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

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

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

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

Then…this week arrived.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The miracle of his beating heart…his life.

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

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

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

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

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

And celebrate.

 

Present for 2013

Hello…nice to see you again.

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

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

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

But, let’s be honest here.

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

It all seemed so hollow.  Not really authentic.

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

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

2012 was a doozy of a year.

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

My boy will be a year old in two weeks.

I can’t believe it either.

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

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

You’ve been with me.

But…me…I haven’t been.

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

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

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

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

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

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

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

The past few weeks have been eye opening for me.

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

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

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

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

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

His little babbling much more him.

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

That an entire year had passed.

And I wasn’t present.

Truly in it.

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

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

I let it.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These things….are truth…absolute.

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

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

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

I’ve decided to give them the present.

2013….the year I jack my swagger back.

 

 

 

 

The best gift.


Craig told me last week he took some time off for my birthday.

I was so excited.  I started planning what I was going to do with the time he was going to watch the kids for me.

The night before my birthday, he looked up weather reports and stuff to do outside around the area.

He announced that it looked like it was going to be a nice day and we should be able to spend the day at the gardens in Fort Worth.

And wasn’t I excited?!?

I smiled and nodded.

He held Evan in his lap and Iz was on the floor..and Craig was so happy that we had another full day planned as a family to celebrate my birthday.

Inside.

I was crushed.

I wanted the day for myself.

I wanted time for “me” and only me.

The thought of spending it away from home, away from our normal routine, to pack up feeds, snacks, medicine, extra clothes in case of explosions from Evan’s mouth….strategically planning time to wake up to make sure he takes a full bottle so that if he didn’t take the bottle while we were out we’d still meet his caloric goals…thinking about how to keep Evan from waking up Iz too early or she’d be a wreck and in diva mode all day…

But, I kept silent.  He was so happy he had the day off to spend it with us.

The morning of my birthday I woke up ready to start my day of “fun.”

My boy slept in until 6:30 AM and I was already worried since that was an hour later than normal…and you better believe we need the full 13 hour day to get in all of our bottles and calories.

Breakfast was made and Craig hugged me tight and asked what our plan was.

He kissed me on my forehead and looked down at me and I blurted out.

“I really just want to be by myself and run errands!”

He looked a little crestfallen at the realization of my true birthday wish.

He gave me a squeeze and said, “Ok…if that’s what you want to do.  It’s your birthday.  It’s your day.”

I gave Evan his 2 morning bottles and breakfast.  Iz was a hot mess – running around putting on swimsuits.

I kept on saying, “It’s ok.  I don’t have to go anywhere.  I’ll stay here with you.”

He looked at me again and said, “Go.  I know you don’t get any down time.  Enjoy yourself.”

I was only gone for 2 and half hours.  But here’s what Craig gave me by giving me that time…

1) A spa day:  He watched the kids as I got ready.  Every time one would crawl in the bathroom or ask for snack or a drink…he’d take care of it.  I was able to close the door to the restroom.  I was able to go to the bathroom without two pairs of eyes watching me.  I was able to go to the bathroom without the background sounds of, “Mama…what are you doing?” “Mama…are you done?” “Mama…what’s dat smell?”  I was able to “use the bathroom” at normal speed.  Not pushing out something that shouldn’t be pushed out with mach forces…or stop “the flow” to run and check on what that “thud” was.  I washed my hair using the shampoo and conditioner separately.  Not combining the two to save time because the naps were about to be over.  I soaped places that often get overlooked because my 2 minute shower is interrupted by a cry.  I “cleaned up” areas that needed some attention…..  He gave me a spa day.

2)  A bonus:  I went to the store by myself.  I didn’t have to add something to the grocery cart to make the kid stop whining.  I was able to peruse the aisle for things I needed and not hurriedly throw whatever and whichever in the cart because I only had 20 minutes to shop and get home before Evan’s medication or feed.  Since we normally have family watch Evan during the day for an odd errand and not nurses…they don’t know how to do the nurse stuff for him.  I was able to price compare and shop smartly.  He didn’t realize it…but he gave our family a Christmas bonus.

3) A nice meal: I left right around lunch time.  My plan was to run through a drive thru and eat in the car before I ran my errands. I found myself parking at a nice sushi place instead.  I walked in and bravely said, “It’s just me” and was sat at a table…with linen napkins…and glasses..and REAL silverware!  The hour had not yet hit noon but I found myself saying, “Yes…I’ll have a glass of pinot gris.”  I looked at the menu…that wasn’t on the wall behind a counter above fryers and a milkshake machine…and ordered stuff I wanted.  I took out my e-book and read.  I ordered my food, sipped my wine….I ate my food at a normal pace.  I had the time chew!  I ate food from MY plate and not scraps off of a high chair or off of my lap or from my hair.  I only had to use one napkin and not a roll of paper towels to clean up sticky hands, throw up, spilled water, and crumbs that turned to mush.

4) A mini vacation and time travel:  As I sipped on the wine, at the sushi…I read a book I’ve been wanting to read for eons.  The Stephen King novel 11/22/63.  I engrossed myself in it…not worried about the next feed, the next medication, the random cries.  I was transported as I read.  It was brilliant.

5)  Me:  He gave me a bit of me again.  I neglect me so much these days.  I’m spent most days.  I don’t take enough time to do stuff I want.  More often than not, dinner is catered to what the hubs like to eat or what I know the kids will eat.  Our outings are few and far between…not just because we are trying to keep Evan as safe as possible…but because  it takes careful planning and lots of praying to survive two kids in public.  I got to listen to the sports talk radio station I like…and not the same two songs that Iz has deemed, “da car songs.”  I got to walk around the store without fearing for the safety of the “fragile” items.  I had silence when I wanted.  Noise when I chose to have it.  I got to choose how I wanted the two hours to play out…not dictated by what someone needed or wanted.

 

I love, love, love my kids.  I love, love, love my husband. But, when you are constantly being asked to do something, hold someone, make something better….you are deprived of something I think is so crucial as a regular person.

Solitude.

My receptors for touch, for sound, for sight are on overload. I’m holding on to a someone, listening to the sound of toys, T.V., or little voices, watching their little world around them to make sure they are safe as they live it…all these things…close to 18 hours a day.

My husband comes home and kisses me hello and holds me tight…everyday..without fail.  And I let the embrace envelope me…it makes me feel safe and reminds me of where home is.  But, what I want to do a minute after he walks in the door is pass the torch of parenthood onto him so I can decompress, allow my senses to take a breather…and find a piece of peace to my day.

Alas…that doesn’t happen.  Dinner needs to be made, kids need to be fed, stories of the day need to be recounted, chubby cheeks need to be kissed, sticky hands need to be wiped.  Our nightly dance party needs to happen. It needs to people.

Baths need to be given…footie jammies need to be donned…bedtime stories need to be read…fuzzy animals need to be tucked in….prayers need to said.

All these things…that are the core of my being and the light of my world…need to be done…I’m so thankful I get to do them…thankful I WANT to do them…

But, for today…on my birthday…my husband gave me the best gift I didn’t know I needed.

A little bit of down time to lift me back up.

 

****Some silly pics of us after my birthday cupcake!****

Little ‘stache.

 She’s just’ache cute as can be!

This is fun…

creepy…

 

 

 

Another year older…not necessarily wiser

I remember watching the shows “Thirty something,” “Melrose Place,” “Friends” on T.V. back when I was just a youngen.

Their lives seemed so sexy.  So exciting.  So fun.  So awesome that I was just counting down the days and writing in my Lisa Frank journal about how I couldn’t wait to grow up.

What the hell was I thinking?

I’m 33 years old today.

I’m still close to the lost years of my 20s instead of the dreaded years of my 40s.

I’m closer to college years than the golden years.

Another year of old just means I am given this amazing gift of life to live.  Imagine the best gift anyone could ever give you.

This is it.

Another day.  Another year (God willing).

This past year has taught me a lot about who the 30 something person I am.  The person I wish to be when I finally grow up.

My 32nd year…what I learned about me:

1) I’m really addicted to Facebook and all that it offers.  A support system in my Heart Mamas, a prayer chain for my Evan, a form of extremely cheap therapy where I give mini blurbs about my troubles….and endless amount of comedy from random posts of others and the discovery of things like e-cards that cheer me up no matter what.

2) No matter how my day is going, if Evan’s oxygen is in the 90s, it immediately makes me feel better.

3) Having 2 kids is exponentially harder than one kid.  People say, “It’s all relative.”  Wrong.  When just you and the two littles in the middle of the day…one is crying the other is whining, you suddenly realize.  Holy S- I’m out numbered.

4) I need a new wardrobe.  Wearing Hanes her way (no matter if they are bikini cut) and an owl shirt on a girls night out don’t make me feel sexy…

5) However, 4 glasses of wine, a glass of champagne, a vodka tonic, and 4 shots and a karaoke machine…are still fuel to make me feel invincible…until the next morning.

I still got it

6)  No matter how old I get, I still love Craig with just as much passion…just deeper…as I did seventeen years ago.

7) Asking for help is not a sign of weakness, it’s  sign of strength.  The ability to say, “I can’t do it all” just shows that I have the courage to not be the person I wish I was.

8) I can go without a shower for 2 days and I can avoid washing my hair for at least 4 days before I start to look like a cast member of “The Walking Dead.”  (directly related to #2)

9) If I shower, get both kids dressed, fed…and we sit around and watch T.V. all day until Craig gets home at 5pm – that completes my “list of things to do for the day” – which normally is just – “keep both kids alive until reinforcements come.”

10) My life is blessed.  No matter how hard this year has been..no matter the tears I’ve shed…no matter the pain I’ve felt…no matter what happens to my boy….

I.AM.BLESSED.