Dear Kindergarten

Hello old friend,

It’s been 3 years since we last met.  Three years ago you welcomed my daughter with open arms and promised to instill in her the love for learning.

You did that.  You loved our girl and gave her incredible gifts of friendship, of knowledge, of laughter…a foundation to build on for a lifetime.

We will meet again tomorrow…but this time…we are looking to you to love our most fragile heart, hold him close, and teach him well.

Kindergarten – you don’t know this – but you have been our guidepost for the past 5 years.  Our wishes and hopes and prayers have always been, “Let’s get him to Kindergarten. Get him to 5 years old and from there…well…let’s get him there.”

Our prayer, dear friend, seemed an impossible one.  Statistics weren’t on our side.  How does one have any kind of hope when the moment you find out about a diagnosis you’re told there’s a 90% chance he won’t make it to 5 years old.

So you see, tomorrow, when we hand our boy over to you, it’s not just another day, it’s the day we looked towards, prayed for, hoped for…longed for.

So, yes, friend, you will see tears.  These tears are not just the normal tears of parenthood and this milestone our boy has achieved.

Tomorrow, I will cry for my friends in the Heartland who will not get this day.  They see excited pictures and posts about other Heart warriors on their first days of schools – their arms empty and their hearts broken for the child they love that won’t get this day.

Tomorrow I will cry for the memories etched in my soul of the moments I cried out in desperation for my boy to live.

Tomorrow I will cry for the fear that is ever present with every breath my boy takes.  I will cry because no matter how “good he looks” he really will never be truly normal.

Tomorrow I will cry for the scars on his body that are a testimony to his struggles.  His struggles…not mine.  The struggles and the battle wounds of a boy that did not ask for all the hurt…but fought through the surgeries that cracked open his chest, stopped his heart, and a heart that had to find a way to beat again.

Tomorrow I will cry for that same heart that continues to beat.  The heart that beats as my boy runs, and plays and laughs.

Tomorrow I will cry for the memories he will make.  For the friendships, the laughter, the days of normal that he fought so hard to have.

Tomorrow I will cry because despite my fears my boy is fearless. He looks at challenges and doesn’t say “I can’t”…he looks at them at says, “Just watch me…”

So watch him, Kindergarten.  Watch the boy who lived squeeze every last bit of joy out of the day. Watch him learn and struggle and conquer.  Watch him love the friends he will make. Watch him love the day you call routine and find adventure in the mundane.  Watch him.  Just take a step back and watch a little boy live a life that was never promised and make memories for his lifetime.

Because dear friend, you’re about to welcome a boy who will love you, hold you dear, cling onto the days…because that was always our promise to him.

Hold him close, love him dear, teach him well and he will surpass your every hope and prayer.

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Will You Love Me?

4Love is patient, love is kind.
Love does not envy, 
is not boastful, is not conceited, 
5does not act improperly,
is not selfish, is not provoked, 
and does not keep a record of wrongs.
6Love finds no joy in unrighteousness
but rejoices in the truth. 
7It bears all things, believes all things,
hopes all things, endures all things….
.Now these three remain:
faith, hope, and love.
But the greatest of these is love.”
In about 30 minutes, I will hear your tiny voice – a perfect mashup of Micky Mouse and Alvin and the Chipmunk – singing a song from one of your favorite shows. You always wake up joyful. Always excited about the day…no matter what.
Today is a special day.  I get to go to your preschool and have breakfast with you.  It’s a rite of passage for moms – “Muffins for Moms” – the tradition early morning coffee, muffins, at preschools and schools.
But today is also a special day because today is the day you asked me to love you.
Four years ago on this very day, October 13, 2011, we found out about how special you would really be.
We sat in the specialist office and the normal excitement of the fetal ultrasounds was replaced by hushed whispers, furrowed brows, concerned glances.
I cannot erase the words from my memory no matter how hard I try.
“Heart did not form correctly.”
“Severe cleft lip and palate.”
“Not compatible with life.”
“May not make it birth…”
“Consider your options….”
As I rubbed my belly and felt you kick, a numbness found home in my soul.  I did not know if I should start distancing myself from you.  I did not know if I should stop planning your life and start planning a goodbye.  I did not know if I was allowed to dream of you anymore. I did not know if I was supposed to love you.
And then…with one swift kick in my gut…so forceful with so much strength…I heard a whisper in my thoughts and my heart…
“Love me.”
It was in that moment I knew I had to trust that no matter what life would look like, if I chose to love you, I would experience a love unparalleled to the one you were about to show me.
And in that moment..I did.  I chose to love you.  Shame flooded my heart for even thinking of letting them hurt you.  For even thinking that I was capable of something so brutal – so final.  But, I did…I did not think I could have a child like you.  A child that looked different, was different, would always be different.
But, in that moment, I knew that I needed to love you…no matter how much pain would weave in and out of that same love.
When you were born, your diagnosis was so much worse than we had anticipated.  Your chance of survival – even to your first birthday – was bleak.
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But, I heard in my heart that same plead from you to me….”Love me.”
“Love is patient….”
 
I remember pushing with all I had in me to bring you into this world. Your faint..then strong cries..and a shame in that moment when I did not want to see you because your face was not the face I dreamed of.
And then the nurse, brought you to my arms and said, “Look at your son.  He is beautiful.”
And you were.
“Love is kind…”
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As I learned about you and the special care you would need throughout your life, I found myself thrown into a world full of other moms and babies like you.  I found myself wanting them to live as much I wanted you to live.  I realized that the fight for each life was so personal for me that I wanted nothing but joy for all of us.
“Love does not envy…”
 
And then I found out that happy ever afters are only in the fairy tales, as I witnessed babies passing every single day.  I mourned with the mothers that had to say goodbye.  I held you tighter and gave thanks harder.  I watched strength and resolve emerge from the ashes of sorrow.  I witnessed unconditional love as a mother said goodbye for now but still fought for others who were still living.
“It bears all things, believes all things…”
 
You asked me to love you.  A whisper from your fighting spirit to my broken heart. But, in my soul, I was too afraid of what loving you would mean.  I was too afraid the pain would be greater than I could bear.  I was too afraid that I would be too helpless and too weak.  I was too afraid that I would never experience a life I dreamed for, for the child I had hoped for and prayed for.
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I know that your story  is unfolding incredibly well.  I do not take for granted the mere fact that you are alive.  I do not take for granted that can play, can eat, can drink, can talk…that you are so much more than I dreamed of.
There were 3 moments in your life that I thought were going to be our goodbyes.  Three moments where doctors looked me in the eye and had silence…because they did not know if you were going to live.
But, you did.  You did.  And you are.  You live life to fullest everyday.  You have a joy and a spirit that takes life and squeezes best moments out of the day.
Everyday you teach me and remind me that love isn’t just about joy or happiness.  Love is about true acceptance.  Unconditional acceptance of what is to come…pain, fight, sorrow.
I love you.  I love you with a fierceness and a strength that I did not know existed in me.  I did not know I could love someone that needed more than I could give yet would give me back more than I deserved.
Thank you for making today a day that I will always remember forever.
As a day I learned to truly love someone.
“…faith, hope, and love.
But the greatest of these is love.”
 My Warrior

Normal?

What happens next?  

That moment in time when you suddenly realize that you haven’t checked vitals, are surprised by the phone call reminding you of a doctor’s appointment…

What happens when you are living your life by the social events on the calendar – from date nights, to birthday parties, to low key evenings with fr-amily (friend/family mashups)?

Instead of doctor’s appointments, medication refills, next procedure or next surgery?

What happens when you dust off the dreams of the future and make them the realities of your present?

What happens when you have dreamed of normal for so long…and then wake up and realize you are in it?

Normal is a relative term…always will be.

To us, “normal” is still specialist appointments every 3 months, specialty drugs delivered by mail, impromptu vitals check “just to be sure.”

But, here we are….the closest to “normal” as the Jones family down the street.

I am told by people who surround us to enjoy this.  Enjoy this normalcy we have been given.  Enjoy this slice of monotony and boredom that accompanies the everyday messes of life.

And about 99% of the time…we do.

The crazy thing about “normal” – or our normal – is when we run into the unicorn of our old life again.

When we run head first into the moments that were once our old life…or the life we thought we left behind….

With each step forward (the only direction our lives can take us)….we hope to move away from the aches and the pain of our old life.

The old life of heart pounding diagnoses, mystery illnesses and symptoms, unavoidable meet cutes with new medical personnel that could “cure” or “help” or provide us with that “miracle”.

It’s that 1% of living the un-normal life that I fear most. Because, quite honestly, I love the life we have now.

Evan…my boy…my miracle is one year post the surgery that changed his life.

The surgery that made his heart whole.  The surgery that moved him from absolutely needing a heart transplant one day to just being in the “maybe” pile.

A year ago today…I wondered if I would see my son alive again as I watched him recover from the hardest surgery of his life.  I wondered if the trip to across country would pay off.  I wondered if my marriage could survive the enormous stress of the the Heart-life.  I wondered if my daughter would understand if her brother didn’t wake.  I wondered how in the world I was still breathing and moving forward…as my son lay so still.

A year ago today…

Today…our lives are filled with everyday tantrums, fighting over toys with sister, time outs in the corner for jumping on the stairs or throwing toys from the 2nd story.

Today…our lives are filled with date nights – just me and the mister – with old (and awesome new) friends – where we laugh hard, eat well, and toast life.

Today….our lives are filled with schedules full of the balancing act of school events for my best boy and best girl, school tests for me!, and

Our life looks like anyone else’s.

And I owe it all to Evan.

Our beautiful life of “normal” I owe it to him (and Him…of course).

Our medical teams – in Dallas and in Boston – did great things for our boy.  They tinkered on/in/around his heart to make it the best it could. The teams in the ICU and the medical floor guided us as we recovered.

But, Evan, my superhero, did the rest. He came back to us.

That sm-uge (small/huge mash up) act is something many heart heroes haven’t been able to do.  I know, all too well, that some of the littles in the Heartland were just too tired from fighting so hard and so long…and they didn’t come back.  Those littles we have said goodbye too…fought hard…fought long…fought bravely…but for whatever reason (medical or supernatural)…just didn’t come back.

Mine did.

And I am forever grateful for that.

Because of that…Evan gave us this day and the all the days from here to our next mountain…of normal.

He fills our days with normal and completes this family we have created.  His presence makes our everyday whole.

I don’t look at our dinner table anymore and hurt inside wondering if one day soon his seat would be empty.

I don’t run to the dressing room of department stores and hide while I cry…because the ache of buying the “next size up” was so overwhelming scary…because what if he wasn’t here to wear something I picked out for the next season?

The ironic thing is…while Evan is stable…while Evan is in a good place heart wise…I still don’t know what the future holds for my boy.

There is false sense of “all is well” when you see your child thriving.

Because…in truth…we don’t know – for anyone – what lies in wait around the next turn of our life.

I have faced this hard truth head first over and over again this year….waiting for a cancer diagnosis for myself, Evan getting dangerously ill, Evan having unexpected heart issues, my daughter having episodes of PTSD and separation issues, my husband earning himself a hospital stay for a possible heart attack.

And yet…here we are.

We are living life like all is well.

Because, all is.

This normalcy is such a gift.  It really is.  I don’t take a second of it for granted.

I don’t fall apart like I used to.

I don’t fear the unknown like I did once before.

I don’t let life pass by as we wait for the “other shoe to drop.”

For the first time…in so long…we (me) are choosing to live it.

There is nothing I can do if life throws me the most difficult things all at once and asks me to deal with it.

Because…I have to just do that…deal with it.

Three plus years into this journey…I finally understand.

I understand that my son isn’t normal….but I will treat him as such.

I understand that his health is a delicate balance of watching, waiting, and doing….but it shouldn’t be all that I’m doing.

I understand that my “normal” is perfect and shouldn’t be compared to those around me…because – well – it’s mine.

I understand that we may not be given another day with him….so I try and treat every day like I don’t know if we will get a tomorrow.

I understand that that little fact ^^^ – that little old sentence ^^^ – is what it means to not just live the life in the Heartland but to just live your life.

Because our (our being me, you, the person next door, etc, etc) mountains, our hardships, our disappointments are tailored to each individual life.

But, we are each given today…and if we are so lucky…maybe we are given a tomorrow and the next and the next.

And that is what living “normal” is about.

I have learned that fact from Evan, from Killian, from Michael, from Kaleb, from Emma, from Bodie, from Zoe, from Izzy, from Jonah, from Tyler, from Vivi, from Christian.. (the list can go on forever)…from the warriors still here and their fight.

Yet…I have also learned ….from Finley, from Rowan, from Noah…from the warriors we lost too soon…that worrying about today just robs us of the the gift that IS today.

And that is something I just learned recently.

So…a year ago today…our lives changed forever.

But, our lives changed forever when I realized how to finally live it.

 

To my Kindergartner

To my Kindergartner,

Tomorrow when you wake up, you’ll ask me, “How many more sleeps until school?”

I will say, “No more sleeps!  Today is the big day!”

You have been waiting for school to start all summer.

You’re so excited to be a “big” kid.

You will carry your backpack – it’s bigger than you! – and clutch your lovie as you march into your class.

I hope you will hold my hand as we walk in…I will need you to hold me up.

Tomorrow…the day is here.  The day I have prayed for since before you were born.

The milestone of “real” school is finally among us.

I wonder if your best friend is waiting for you in the seat beside you or in front of you.

I wonder if you will take in all the new things around you with excitement like me or if you’ll be a little cautious and shy like your Daddy.

I wonder if all the questions of why, how and what will be found throughout the year of learning.

I wonder…most of all…if you’ll miss me as much as I will miss you.

I will miss our lazy mornings of cereal on the couch.

I will miss our donut runs as we head to a friend’s house to play.

I will miss perfect fall days where nothing is on our agenda…just our imaginations to keep us occupied.

I will miss hearing your little voice belt out songs in the middle of our day.

I will miss impromptu dance recitals.

I will miss our adventures to Africa (the living room), China (brother’s room), and Australia (the playroom).

I will miss silly stories and the sound of your laughter echoing through our home.

The day will not be the same without you.

This is such a big deal to me because this starts the chapter of your life where I have to learn to let go.

I have to let my heart break so you can fill yours with the love for learning, the love of friendships, the love of the new experiences that accompany “being big.”

This starts the time where you become who you are meant to be.

As your mama, I have wondered what this day would look like.  Part of me excited to find myself again in your absence.  Part of me saddened in the realization that your absence is a void that nothing can fill.

You are still just a little bit big.  I know that you are still my little girl. But, yesterday…wasn’t it just yesterday?

….I held you…all of you…in just one arm.  So tiny.

But, then, even then…you filled my heart and my soul.

But, now and forever…I love you bigger than I even imagined.

And….as you wake tomorrow…..and you’re excited, “How many more sleeps before school?” will make my heart ache a whole lot more than I ever realized.

I love you, Bug.

– Mama


 

 

“I don’t want Happy.”

Pharrell’s Top 40 hit has taken over our house.

Iz loves singing it and dancing to the song.

It is on repeat at our home along with every song from the “Frozen” soundtrack.

About a week ago, I hear the familiar tune start playing in Iz’s room.

Then, I hear little feet scamper to me.

Evan, with his sad, fat lip and crocodile tears, runs up to me, points in the direction of his sister, and cried, “I don’t want Happy.”

“I don’t want Happy.”

In his case, he just didn’t want the song that had been played on a loop for the past few weeks.

But, at that time…I was agreeing with him.

My mantra for the the past several weeks has been, “I don’t want Happy.”

I refused to let myself experience joy.

I let anger infect my soul.

I let fear suck the hope out of every inch of my being.

I turned my back away from God.

I didn’t go to church.

I deleted my Bible app.

I stopped talking to friends.

I ignored texts from people from church.

I was mean to my kids.

I was mean to my husband.

I was the person I feared most.

I was the person that had given up.

I didn’t want “Happy.”

Because, “Happy” to me, means that I could be care free – not a thing to worry about.

But, that is a lie.

My life is roller coaster than never stops.  The moment I take a breath from the last set of news about my boy, we are just given a new diagnosis, a new procedure or surgical date…and up, up, up we go.

Getting ready to fear the drop.  Not quite sure how steep this mountain we have to climb is going to be.  Not quite sure if we will plummet downhill quickly or slowly go back to smooth ride for a minute or many.

So…I didn’t want Happy.

I battled with the demons inside my heart and in my head.

Guilt.  The guilt of everything we had (will) put Evan through. The guilt I had buried came back to life – the one where I had come to peace with the fact that there really was nothing I could have done to prevent this. Guilt that my boy was doing well…but others weren’t.

Anger. Anger that my son had to go through all of this sh!t.  Anger that he would be in pain again. Anger in knowing that this journey was never ending. Anger that I had prayed for my boy but felt like my prayers weren’t working.

Envy.  Envy for the lives of my friends and family who have normal.  Envy of other’s in the Heartland that seemed to be keeping it together while I was falling apart.

Fear.  Fear for the heart cath that will show if his heart is working.  Fear for what is to come if it’s not.  Fear for the procedure itself knowing it’s inherent risks.

I turned my back on prayer and hope and faith and love.  I made the conscious choice to stop everything that I had built the last 2+ years since having Evan.

When, I felt all those demons consume me – I let them.

I let all the things I had battled against get a hold of my spirit.

And I suffered.

I could feel all the negativity creeping into everything I loved.  I saw it in my children’s eyes. I heard it in my husband’s pleas to me.  I saw it in my reflection – I had changed.

I chose to let those demons be a part of me because I didn’t feel like I deserved anything more than that.

The problem with allowing the negative to shape my being is that you really don’t get any benefit from it.

The guilt, the anger, the fear – it just made things infinitely worse.

I had hoped that wallowing in all those things would be more of a comfort than the hope and the faith and the love that I had grown accustomed to.

But, it didn’t work.  My attempts to be the angry person who hated my life didn’t change the one thing that I wanted to change most….my life.

My life is what it is.  As hard as it is….for whatever reason…for whatever purpose….this is the hand I (we – my family) have been dealt.

It is the hard truth that you have to choose to make the most of the life you have or choose to make a change in it.

I will be honest…I’m still holding onto a lot of anger these days. But, I do let go of it every now and then.

I still feel guilt for all Evan is enduring and has endured…but I reminded in his smile that there is no place for guilt when there is joy.

I am still envious of the normal of everyone else’s everyday…but I am reminded that we are still getting an everyday with our boy and many cannot say that.

I am still fearful of what is to come…but I am reminded daily of the hardships we have surpassed.

And another honest truth, I’m so thankful for this life I “want” to change.

So many little things about my life – when I shove the demons aside – are good.

My friendships that have withstood the greatest tests.

My best boy.  Broken heart and all.

My best girl that has had her heart broken, too.

My marriage where we have honored “through sickness and health.”

The little things about my life that are good…are the things about life that make it worth living.

I may choose to “not want happy.”

But sometimes, “happy” chooses us.

 

 

EAT!


There is a something that many parents with kids with special needs deal with that is not shared frequently.

I see it every single day in the Heartland.

But, I know that this dirty little secret is one that many special needs parents share.

I’m ashamed to even share it with you….but for the sake of my sanity…I need to get it off my chest.

I hate feeding my kid.

There.

I said it.

It is exhausting.

I chase him around all day long with sippy cups fortified with some sugary substance and added fat like coconut milk.

Because he has swallowing issues, the contents of those cups are the consistency of paste. And quite often – look like paste too.  YUM.

I have resorted to giving my kid whatever he will eat, when he will eat it, where ever he will eat it.

And this kills me.

This isn’t the kind of parent that I am nor do I want to be.

But, this obsession with getting my kid to eat is nothing like getting a “normal” toddler to eat.

This obsession is directly linked to every.single.thing he has endured. And the guilt of it all – whether rational or not – haunts me with every bite refused.

I carried my food refuser (let’s call him Evan) for 9 glorious months.  Ok – more like 6 glorious months because in month 6 we found out about his diagnosis.

But, even then, I ate impeccably well. I steered away from seafood, soft cheeses, lunch meat, anything that wasn’t cooked to the optimal temperature of safety.  I gave into some indulgences but for the most part…I ate so well because quite frankly…I thought to myself, “If I can’t grow him right…I will do my best to feed him what he needs.”

Then, my boy gets here.

Cleft lip and palate and heart defect…along with the perfect little tootsies and fingers.

My being and my instinct was to stick that kid on my boob and give him what I felt in my heart he needed…my milk.

But, as my breastesses engorged and ached, I knew that it wasn’t meant to be.  I would not get that bond of nursing with him.  So, I pumped and pumped and pumped until my nips and ‘reolas cracked and bled.

Then, I was told…”let’s feed him!”

Wait…I get to feed him!  I get to give him a bottle!  I get to feed my son!

Because, as a mother…that’s what we are supposed to do.  FEED OUR CHILDREN.

But, alas, the suck of the bottle was just too much.  With every suck and latch on the nipple (and I bought every one out there – Dr. Brown, Playtex, etc), I could see Evan begin to sweat and tire.

And my heart broke….I wasn’t going to get to feed him afterall.

But, I could perfect shoving tubes down his nose and throat into his gut.

Because – hell – that’s what it will take to keep him alive.

So I did.

I perfect the feeding tube placement like it was second nature…even though it was against all things natural.

I learned feeding pumps and learned to love (and loathe) the melodious “beep beep” signaling his “feed” was done.

Feeding tube cutie

Feeding tube cutie

And we are the lucky ones that got to graduate from the nose feeding tube to the tube that gets to be surgically put in my son’s stomach.

Everyday with his bath and with the nekkidness of being a toddler – the stomach tube protrudes from his tummy.  I don’t get to tickle his tummy in fear he will accidentally pull it out.  I have to stop him from sliding on his tummy on slides.  I have to explain to strangers who may get a glimpse of his feeding tube what it is used for.

But…the food gods have smiled down on me…and my boy learned to eat.

He learned to eat like a normal kid.

He learned to everything under the sun and drank from cups like a normal kid.

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Perhaps I need to teach him “how to eat…Peel the banana sweet boy.  It tastes better.

Then…toddlerhood hit.

And while we rejoice in reaching milestones like reaching 2 years old…with it comes the excruciating picky nature of a toddler.

While this is “normal” stage and I am told by many that this too shall pass…the “normal” of Evan’s life includes a medical team that counts every gram gained and every gram lost.

Our meals are no longer times to enjoy each other at the table – our meals have turned into a math problem.  “If Evan eats 5 bites of the Macaroni and Cheese, takes 2 sips of juice, has one half of a grape…how many more cookies does he need to have for snack in order to reach our 350 calorie goal before we get to 1pm?”

Our excitement to try new foods is no longer an option because fighting for 30 minutes over trying the “super yummy food!” is 30 minutes that a calorie wasn’t ingested and the fight itself…well…probably ends in a tantrum…and well…that is just more calories burned.

Our meals out as families is no longer time for Mommy to enjoy not having to do dishes and cook it has turned into Negotiation 101.  “If you eat your chicken nuggets you can have your fruit. And if you eat 5 french fries…I will let you have a sip of water.”

Because, the fruit and the water have zero calories. And zero caloriees = zero weight gain. And ain’t nobody got time for that.

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“Why are you trying to nourish my body!”

My pride of being a mother that focuses on whole foods and clean eating for my family….the love I have for creating a meal from scratch…has become all for not.  Because, sometimes…hot dogs, grilled cheeses, boxed macaroni and cheese…are all that my food refuser will eat.

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Why yes son…we are making another cake for your consumption. And if you so choose…you may eat that entire stick of butter. 

And then we have those days where you are fully stocked with your “go to” meals and snacks…and the child acts like you tried giving it poison.  The meals and snacks not eaten…the drinks not drank…become alarms of panic and planning sessions for the crazy in our heads…I need to call his cardiologist…his GI doctor…his minister.

I have resorted to Costco trips for meal time because anything given to him in a plastic condiment container by a lady in a hairnet and stained white apron is apparently the best thing he could ever eat.

We have tried simulating those “Costco” samples by cutting up his meals and putting them in little containers all over the house.  But, alas…the allure of the Bagel bite from Costco just isn’t the same when it is sitting on the night stand in the bedroom.

I have also resorted into military style yelling…get all up in his face…and say things like, “Why the hell won’t you eat?!?” But, surprisingly…the loudness and anger in my voice doesn’t stimulate his appetite.

I’m told to “relax” and let him eat when he wants to.

I’m told that “he will eat when he’s hungry.”

I’m told “he can feel your stress…and that is causing him to not want to eat.”

I’m told  “this is just a stage and he will eat again soon.”

I’m told all these things…so let me tell you (my dear friends that just lovingly want to ease the burden of this all)….I know.

I know that he will eat when he wants to….but sometimes wants to can be days..

I know that he will eat when he’s hungry…but sometimes our kids don’t understand or know hunger because they have relied heavily on feeding tubes or their medications they take just make them not want to eat.

I know this is a stage…but when your sole goal for your kid is to survive…sometimes that “next stage” isn’t promised.

So…I hate feeding my kid (but I do it – don’t call CPS!)

The truth comes out.

Because feeding my kid…the most natural thing I can do as a parent…has become painfully unnatural.

But, then we have days where he eats 1/2 of pancake, 2 bites of eggs, 1 cup of milk (but he threw that up), 5 grapes, 3 1/4 graham crackers, 6 oz of juice, 5 potstickers (the wrapping only) and 3 bites of noodles…and it makes it all worth it.

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He ate.  Hallelujah. 

 

 

 

 

 

5 Minutes in a (Heart) Mom’s Head


I laughed so hard when I read this blog that I came across about what it is like to be inside a mom’s head for 5 minutes.  

I sent it to my husband to show him my crazy is shared ’round the world by women who lovingly (and tirelessly) call themselves “Mom.”  He then added, “Man – this is just s small bit of what’s in your mind.  If only people knew what it was like to be inside your head…!”

So…here goes.  

5:46 AM – Sh!t. It’s almost 6.  Why haven’t I heard him?  Is the monitor on?  Is he breathing?  Is he…?  No…don’t go there.  He’s fine.  But just to be sure, let me take a quick peak.  Where is that pulse ox?  I think I put it in the night stand.  What the hell is all this crap?  I need to clean out this drawer.  Oh hey – there’s that bulb syringe that I love.  Oh man…how long has it been in there for?  Wasn’t there an article about mold and bacteria growing in those blue suckers?  I need to find it.  Because there’s probably Ebola growing in that mess.  Is Ebola a bacteria Evan can fight?  Ebola was eradicated.  I think it was one of those diseases on World War Z that Brad Pitt injected himself with.  That was a good movie.  Ha.  Evan would survive since those zombies didn’t eat the people that were sick.  I need to eat breakfast before the kids wake up.  Maybe I should work out instead.  Oh yeah!  The pulse ox is by the DVD player where I put in the work out video yesterday when I was going to work out.  But, I thought he was breathing weird so I took his oxygen and forgot about exercising. And then I ate kettle corn instead.

I love this pulse ox. It’s the bomb dot com.  Ok…he’s breathing.  He’s on his tummy though.  Hmm…that’s new.  Is he able to get in good deep breaths like that?  That’s going to affect his oxygen saturations for sure.  But, is he on his tummy because he laying on his back is decreasing the intra-abdominal pressure and it feels better?  Wait…if he’s doing that that must mean something is making his stomach hurt?  Is his liver enlarged?  What side is his liver on again?  I need send an email to his cardiologist and GI doctor today and confirm.  Let me ask on Facebook first and see if my Heart Moms know.  Why hasn’t anyone responded to my question?  10 people have viewed it already.  Oh no..no one has experienced it.  Fu#$#!  It’s rare.  I knew it.  Oh wait..here’s a reply.  “Don’t have any experience…but I’d ask your cardio.”  No sh!it, Sherlock.  Didn’t you read that last line, “I will email my cardiologist but wanted to check here, first.”  Ok – Czarina – don’t be a biatch.  I hate how Facebook makes me a mean person.  Ha – there’s that funny article circulating around about “auto correct texts.” It’s so funny…I love Facebook.

Ok…which toe do I like?  The right toe gives me good readings but his foot is tucked under neath him.  Maybe I’ll try his thumb.  His thumb and his toe are kind of the same size.  Hmmm…that seems low. His heart rate is a little low.  It’s supposed to be low though.  That’s a sign of deep sleep.  His oxygen is a point lower.  Let me nudge him a little and maybe he will move so I can get to his right toe. His right toe is the money maker – I always get the reading I want with that right toe.  Oh no, oh no…don’t wake up…don’t wake up…just roll over so I can get to your right toe.  SUCCESS!  Hmmm…he’s breathing a little weird on his back.  I wonder if gravity is pushing on his heart too much an not letting it pump effectively.  I wanted to see “Gravity” in the movie theaters.  Sandra Bullock and George Clooney are such good actors.  I can’t believe George Clooney is finally getting married.  He’s kind of old…but he’s still hot.  If I think an old man is hot…does that make me a cougar?  No…that’s if I think young guys are hot because I’m old.  I’m 34 going on 85…I need a girl’s trip to make me feel young again.  Let me post that on Facebook and see if my “friends” want to go on one!

Eff it.  I can’t get a good reading on his right toe.  His numbers still don’t look like his norm.  I HATE this pulse ox!  Let me write an email to his cardiologist.  “I did a spot check on Evan this morning and he was satting lower than his norm.  While he normally sits around 93-94, his oxygen sats were around 92. Should I bring him in?”  Hmmm…that kind of sounds neurotic.  Well…of course I’m neurotic.  My kid has a freaking heart that doesn’t work like normal! I need to get on meds. I’ll get Evan’s meds ready so when he wakes up it will be ready for him.  I’m such a good mom.  Ok…1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12.  All 12 meds are ready for when he wakes up.  Hey – are we out of M&Ms?  He won’t take his meds unless I bribe him with M&Ms!  He’s going to end up throwing up all of his meds and then I’ll have to take his stupid vitals all day long and we have 2 therapy appointments today. He needs to “perform” well so the therapist knows that we have been doing our homework.  I need them to know that we work all day.  Ok – maybe all day is a bit of an exaggeration.  But, I worked on his physical therapy yesterday – kind of.  I mean – isn’t letting Evan push around his sister in the laundry bin working on his leg and core strength?  And I totally let him cut with scissors – that’s fine motor at its best.  Ok so maybe I found him with his scissors cutting his hair in the bathroom.  But, when I found him he had cut off a good amount and he even said, “Look at me, Mama!”  He was so proud.  He cut something – fine motor skills.  AND – he put together 4 words!  Speech therapy done!  Oh wait..I ate the M&Ms with my kettle corn…I’m such a bad mom.

Let me try his left toe….winning!  His left toe is giving me the numbers I like!  Hmm….I wonder if his right toe isn’t getting perfused as well as the left.  Could there be a clot in his right leg that is causing the lower sats on his right toe?  His left toe is showing 93-94 but his right toe is only showing 90-92.  Oh NO!  His oxygen just jumped to 95!!  Could he be overcirculating?  Is that why his breathing is weird?  Let me get Google “2 year old respiratory rate while laying on back and/or stomach is there a difference and could it mean heart failure.”  AH! There are too many articles. Let me post this in my Heart Mom group and see if they know.  Oh hey – my friend said she was “IN” for the girl’s trip.  Where can we go?  I need to make sure we can even afford it.  I just “ignored” that last hospital bill. I wonder if my “payment plan” I’ve arranged for the 6 different collection agencies are going to be satisfied with my $50 a month plan.  Well…they will just have to be.  I can’t pay off $60K in 2 years.  And we still haven’t gotten all the bills.  I will just pay on it for the rest of my life.  Sigh…I guess I can’t go on a trip.  Screw it!  I’m going – you only live once and medical debt will always be there.  I’m going to suggest a beach trip.  Hmm…that means I need to start exercising and eating well.  I’m under too much stress to give up my wine.  I’ll just wear a tankini.

Sigh…I guess I’ll write another email to his cardiologist and ask about over circulation. I bet Evan is ok and just sleeping in because he’s growing.  I hope he’s growing.  I am shoving calories down his throat like no one’s business.  I’m effing tired of counting every single calorie. And if one more person tells me, “He’ll eat when he’s hungry!  Stop stressing about it!” I’m going to to ballistic.  My kid’s heart works twice as hard as a normal heart and I have every specialist is breathing down my neck to get him to gain weight.  I don’t know why he won’t gain weight – he gets donuts, avocados, whole milk with fortifier, chips, hot dogs – whatever the hell he wants when he wants it.  I’m gaining all the weight!  If I keep up with this high calorie diet – I’M going to be the size of house.  I need to work out more and eat clean again.  After the kettle corn is gone…I’ll start then.

Let me write another email to his cardiologist and nutritionist and see if his lack of weight gain is a cause for cardiac concern.  I’ll do it in bed though.  It’s too dang early and Evan will probably sleep another hour or so.  I hope he sleeps in so I can get some rest.  But, wait…if he sleeps another hour or so…that’s going to be 30 minutes longer than normal.  Could that mean he’s over tired and his heart is working too hard?  I’ll send another email to his cardiologist.  I bet he appreciates how attentive I am to Evan.  Or he thinks I’m crazy.

Nah…I just need more rest.

5:52 AM – 30 minutes before I start my day.  Then the real worrying can begin.

 

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This is a picture of non-crazy mom.  

 

 

 

Pieces of me.

I had dinner with my friends last week.

These ladies have seen me through some of the hardest moments of the past three years.

I had a breakdown a few weeks ago that landed me in the hospital with a diagnosis of exhaustion, dehydration and an ulcer most likely caused by stress and as the ER doctor put it “an inability to cope.”

My friend said to me, “I knew something was going on.  You hadn’t blogged.  Your presence on Facebook was gone.  Something was up.”

She was is right.

Something is going on.

There are few things in this life that really get under my skin and make me angry.

Hypocrisy and a lack of authenticity are two of them.

And blogging about our journey and how “I’m going to keep the faith and have hope” and post on Facebook happy pictures about how we are “living life to the fullest” – well – those things would be hypocritical of me.

I’m not in a good place.

I hate all that we are going through.

I’m tired of putting positive spins on things.

I’m exhausted with all the “it’s just a season,” “there is so much to be thankful for,” “you’re being tested and you are stronger than all of this” – cliches.

I don’t have the smile and “I know its” to reply back to those who tell me “it could always be worse” and “look how far you’ve come.”

I’m in the proverbial pit and every time I try an hoist myself out of it – more hardships keep getting dumped on me and my family.

I used to say, “Well – all that junk that get’s put in the pit – I’ll use as stepping stones to get me out!”

Now – it just feels like all that stuff is burying me alive.

Our situation – Evan’s medical issues, Craig’s job, our finances, Iz’s separation issues, personal family issues – could be infinitely worse.

I get that.

When I think about “it could be worse” – that is my son dying. That means that most of what we are going through would be all for not.  And, those who have lost their children – they would not wish that ache and the nightmare of living their life without their little one – on any soul on this planet.

I’m not looking to have a contest about “who’s life sucks more” – because I know that everyone has demons they are running from and everyone in some capacity has or will be in their own “pit.”

So, I try my best to be thankful for each moment.  Truly, I do.

But, as my friend said to me, “It’s like you are constantly waiting for someone to pull the rug out from under you.”

Because it is. We are constantly waiting for the next blow to our spirit.  The nervous anticipation of the next set of bad news to hit us.

It started nearly 3 years ago when we got the diagnosis.

The rug was pulled out from under neath us.

I shattered in a few hundred pieces but I found a way to put myself back together.

The pieces were still manageable  and I was able to puzzle myself back to the person I could recognize.

But, as the hits kept coming and I shattered over and over again- surgery after surgery, family issues like job loss, the mountain of finances, personal issues I had to deal with – well – those pieces of me became smaller and smaller.

And I sometimes – when I put myself back together – I’d fail to pick up important pieces of who I am.  I couldn’t find the pieces of me that were the essence of the faith and the hope and the joy that used to be the biggest parts of my being.

And then Boston.  I had to pull myself together and become stronger than I knew was possible because Evan had no one but me.  While most days I felt like I would come unglued – he needed me to be the person I promised him I would be. So…I soldiered on.

You know what breaks you in million pieces?  Witnessing your child almost die.

And that has happened more times than I wish to share.

But…we had to come home.  We had to get home so our family would be whole again…and it was my hope that I would be whole again.

We got home – and I did what I do best.  I put on my “mom and wife” gear and I went to work.  I occupied our days with normal.  I blogged and I status updated the stuff that I wanted other to see.  I put on my best “it’s going to be alright” mask to hide what I was truly feeling.

And just when I thought that maybe – just maybe – I’d get a chance to enjoy the me that I had just put back together – our teams discover that one of Evan’s valve repairs hasn’t held up.

And then we are sent to a doctor to explore a possible airway issue.

And then Craig gets bad news from his job.

And then the fight with insurance to cover Evan’s medications is never ending.

And then the billing departments from the hospital sends us letters that start with, “this is a courtesy letter to inform you we are disputing the following dates with your insurance company about medical coverage” – and the dates are for the entire duration of the hospital stay for your child’s open heart surgery.

And then I get some troubling news about a family member.

And then…and then….and then…

The rug.

The rug getting pulled out from under me over and over and over again.  It’s happening so fast that I can’t even find some pieces of me – so then I find myself filling the holes and parts with things like “anger,” “fear,” “sadness.”

So, I’ve put myself together – and now I don’t recognize the person I see before me.

I’ve become such a different person that even Craig says he doesn’t recognize who I am anymore.

But, he loves me fiercely and will continue to love me because he knows I’m in here somewhere.

Oh how I wish – oh how I wish – that I was still that same person who began this journey – or at least – a person that is a better version.

The only solace I get in all of this is that I know that I’m not alone in feeling this way – although I feel isolated and almost suffocated – in all of this.

But, as I wait for the rug to be pulled from out underneath me once again – and the inevitable happens – I just hope that instead of me trying to put myself back together and me becoming worse than I am now – those around me will discover that the pieces of me that I’ve lost – the hope, the faith, the joy – were just sitting there – waiting to be a part of my being once again.

And they will glue me back together….and hold me together until those pieces that I’ve lost become a part of me once more.

*Note: To my friends reading this, you are not alone.  Sometimes seeing that you are weak is what makes you strong.  I have sought medical help to find ways to cope with the stresses of the things happening in my life.  I urge you – all of you – that are experiencing similar feelings or hopelessness to seek help.  The very least – know that you don’t have to struggle in all of this alone.  I hope I can be someone that “helps glue you back together” and holds you tight until you are whole again.*

 

 

We are supposed to be in Italy.

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Today is my 10 year wedding anniversary.

A pretty big milestone these days.

It is hard to believe that Craig and I have known each other for 18 years and been married 10 of those.

I think about where our lives are now and I’m brought back to this little bit of writing.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

For those of you that don’t have a medically fragile child or a child with special needs, you may not be familiar with this.  But, for those of us that do, this piece has been circulated around and passed on to newly diagnosed parents since the beginning it was first published.

It is supposed to bring you comfort in knowing that your child may not be what you expected…what you planned for…but if you focus and mourn for the child you thought you had you’d never see the beauty of the child in front of you.

But, today…on my 10 year anniversary…I read this poem and read it in a different way.

Before Isabelle was born, Craig and I took a “babymoon” to Europe.  We watched Arsenal play at the Emirates in London and walked the streets of Paris.  We had Isabelle and she changed our world.  It was a little harder to travel with a child but traveling is the thing Craig and I love to do the most.

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We made it to Germany and Amsterdam a year later (courtesy of my parents!) and we decided that we would do everything we could to see the world and experience all that God created.

So, for the next 5 years…we have been saving for our dream trip to Italy. Every scrap – money we received from parents for Christmas, birthdays, bonuses Craig earned at work, money we received from selling stuff at garage sales – was put away in our “10 year anniversary fund.” We saved airline miles from credit card purchases that we racked up over the years.

Craig and I would talk about this trip often.  Which sites we would see.  Trying our best to plan it around Europe’s futball schedule.  The excitement of this trip slowly built up as the years passed.

Then…Evan.

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Our diagnosis for Evan changed everything.  We had to refocus our lives and our priorities quickly.  The son we had prayed for was not the son we were going to get.

As the medical bills piled up, I knew what we had to do.

As we prayed about our decision to seek care in Boston, I knew what we had to do.

Even with the the donations from family, friends and strangers – monetary, flights, food and such – the generosity just wasn’t enough.

But, we knew what we had to do.

It seemed like God had been preparing us for years for what we thought was going to be Italy…but instead was our Holland…our Evan.

While I sit here and type…through tears….the part of me that is hurting the most is the selfish part that is saying, “That money for the dream trip to Italy was supposed to be for Craig and me” but instead every penny has been used for bills, medication…and all those miles were used for flights for Boston (which by the way…what a joke…5 years of saving and it got us 4 tickets!)

The angry part…the selfish part is failing to see what is right before me.

Evan has taken my marriage to places Craig and I never realized.

We have been to the deepest, darkest caves and pits of sadness.

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We have been to the highest of the highs and shouted from the “mountain” tops our joy and gratitude.

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We have experienced meals that were life changing.

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We have walked the streets and seen God’s beauty.

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I’d be lying if I told you that I’m ok with not being in Italy today.

Craig is home sick from work with a mystery virus that landed him in the ER last night, the kids are fighting already (and it’s not quite 8am), I have chores to do and bills to pay.

But, if I fail to see what is right before me…I fail to see the beauty of the blessings.

To my best guy – we didn’t get to go to Italy.  I’m not sure when we will be able to…ha…I’m not sure if we will get a vacation any time soon!  But, I would not change a single moment of our life.  Marriage is much like Italy, isn’t it.  We plan and we think it is going to be this beautiful magical thing…and then the day in and the day out of marriage suddenly aren’t as magical and perfect as we had thought.

But, there is beauty in it.  There is so much beauty in this life – in this marriage – that we never planned for. 

Thank you for taking me to places I never thought were possible.  I’m so thankful that we travel this journey together. 

My love and my life to you always….


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I just want to be Mommy.

“So, Ms Hounsel, let’s discuss what we are going to do for Evan.”

Our specialist for Evan’s gut rattled off our plan.  I agreed to some and disagreed with others.

We came to a happy medium of what was next for Evan in regards to his stomach issues and his lack of weight gain.

I asked more questions about the drugs – interactions, side effects – efficacy.  The normal stuff.

After an hour long visit, his doctor looks at me and confidently says, “Ok. I think we have a good plan.  Let’s see how things go this month and follow up with us in August.  I trust if anything happens you will call me.  Evan has a doctor by him 24 hours a day!”

He chuckled as he said the last part.

The blank look on my face prompted him to add, “You. You are the doctor!”  And he laughed again.

My stomach sank and I battled back tears.

I smiled in hopes that I masked the sadness on my face and the one thought that popped into my mind, 

“Mommy.  I just want to be mommy.”

Having a child that is medically complex is exhausting.

It drains me in ways I didn’t realize.

I have been forced to learn things I never wanted to learn about: heart defects, stomach and intestinal defects, drug interactions, hospital policies…the list can go on and on.

I have become doctor, nurse, therapist, pharmacist, advocate, medical billing manger, accountant…all for the sake of my son.

And, I joyfully take on the role. Because joy is something that is deeper than happiness…it’s an almost transcendent feeling.

Because sometimes….I need something deeper to explain the elation I get in knowing that I am all these because my son is still alive.  The alternative to not being these things in the complex medical condition world means I am no longer all those things because I no longer have to be.

But, there are many moments in my day where I just want to be mommy.

Where I want to feed my child a meal and not have to count calories.

Where I give him a bath and not inspect every scar for infection.

Where I giggle and laugh and rough house with my toddler terror and have to stop and make sure his lips aren’t turning blue.

Where I take him to parks and playgrounds and not have to wipe down swings and slides and hand rails because he is immune compromised.

Where I can plan a date night for my husband and I and just call my sitter and not have to make sure she feels comfortable with feeding tubes, his medication, his tendency to vomit at a moment’s notice.

Where I hold my child and just love on him instead of going to his hands and feet and seeing if they are cold….wondering if his circulation is ok.

Where my daughter’s nightly prayers are innocent instead of worrisome, “God…please heal my brother’s throat so he can eat again like a normal kid.  Please keep his heart strong so that he doesn’t have to go back to the hospital.”

Mommy.

I just want to be mommy and forget that I have these hats that I have to wear.

It’s hardened my heart and jaded me as a person.

I have to stop myself mid eye roll when I hear or read about other people and their “simple” problems – ear infections, fevers, teething, minor surgery.

I stop myself because once upon a time I was “just” mommy.

And those things that are devastating to parents – the things that are trivial to me now – are hard on those who don’t have to wear the hats I have to wear.

I’ve become jaded and hard because I have to be.  My role as “mommy” shifted into protector when I found out about Evan.

For whatever reason, I was given this child that requires me to be more.

I’m required to be more than just the kisser of boo boos…I have to find ways to stop them.

I have to be able to step back and admit that “Mommy can’t make it all better.”

Because, I’m not just that.

I have to be more.

But sometimes…

I just want to be Mommy.