Torn in two.

.Weston -Critical Aortic Stenosis, Mitral Stenosis, LV and RV
dysfunction, 3 open heart surgeries, Primary Pulmonary Hypertension,
awaiting a heart and lung transplant.
Easton 7, Weston 6, Abby 5, Emery 4, Sutton 3, Avery 2, and Ellie 1

Evan, 2, Hypoplastic Left Heart Syndrome and Ellianna is 7.

Jozie, Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Heterotaxy, 5 yrs old, and little sister Emmy, 2.

Bennet- 5 months HLHS with his sister Elinor, 5 years old and his brother Charley, 3 years old.

Luka (4 months old, post-Glenn, HLHS) , Ashton (11) and Zephyr (2).

 

 

 

Bodie, Hypoplastic Left Heart Syndome almost 3, and Sierra, 5 years.

Over the next few weeks in February, I’ll be talking about how CHD has affected OUR lives – the parents, the siblings, our faith – our everyday.  You’ll be hearing from me some days, but most importantly, you’ll be hearing from other Heart Mamas.  You’ll get a glimpse of their life, their choices, their journey.  

Please visit as often as you can in the coming days and weeks and read about amazing stories of faith, families who chose to adopt their heart baby, women who are changing the face of the Heartland by their tireless efforts

 

I wasn’t sure how I’d approach this post.

The thought of writing it felt too painful…too much for my heart to handle.

It’s not really a post about Evan.  It’s the post about his best friend.  His buddy…his sister.

My Iz.

Before

Our lives pre-Evan were pretty great.  We were getting into the groove as a family of three.  Craig and I could not imagine our life without our best girl.  Isabelle is a bundle of energy. Her laughter contagious.  Her kind heart shining as she tucked in her ‘babies” – the monkey, the duck, her Dora doll. She fills our house with laughter, silly songs, bedtime stories, all the goodness that this world could offer – was wrapped up in her.

Having another baby and giving Isabelle a brother or sister was a no brainer for us.  We wanted her to grow up with someone she could call her best friend.  We wanted our house to be filled with giggles in the middle of night, fights over toys, silly stories over dinner.  That was our hope for her and her soon to be brother/sister.

When we found out about Evan’s heart, one of the first things I thought about was Iz.  How would this affect her life?  Could we bring a child into this world that would surely turn hers upside down?  Would I be asking too much from my toddler to grow up much too quickly – because the hospital visits, the separation from her mama and daddy, – all these things shattering her innocence.

Craig and I would often take turns holding our best girl and crying as we tucked her into bed. The sadness was overwhelming – looking at the innocence before us – her sweet face, her heart beating – knowing that the baby I was carrying would not be as perfect as her.

We felt cheated – not just of the dreams we had for our son – but for our Iz.  She wouldn’t have the normal brother she deserved. Would she think all babies born have to spend days, weeks, months in the hospital before coming home?

I could only pray that she would see our fight for Evan and know someday we weren’t just fighting for him but for our entire family.

As the days approached for Evan to arrive, I meticulously wrote out instructions for our families that would be caring for her.  I chronicled her daily schedule, medications she’d need for allergies and asthma, doctor’s phone numbers, favorite shows to watch, favorite snacks.  But, would her grandparents or her aunts know that Ducky was her favorite animal to sleep with?  Would they know to sing her the special “night night” song that she loves to hear as her eyes flutter shut? No…because they weren’t me – her mama.

Craig would try to come home from the hospital to give her some normalcy and let her sleep in her bed.  The thought of being alone – watching Evan hooked up to monitors, constantly being poked and prodded – made my heart ache – heavy with pain and sick with guilt.  Pain for the child that lay before me, guilt for the child that waited for me.

Torn in two.

During

Our hospital stays were much harder than I had anticipated.  The ache of home was great.  The anger I felt for my life was greater.  The worry for Evan and his future so magnanimous.  But, as soon as I heard the familiar high pitched toddler voice of my Iz walk through the hospital walls – I had to push aside all of that and put on my brave face.

She didn’t quite understand why we were still in the hospital.  She craved attention from me and her Daddy. Yet, she would often shun both of us.  Almost in defiance like she was saying, “I’m hurting that you’re not home with me.  So, let me hurt you.” But, of course, she didn’t understand or truly articulate the feelings she had.  She’d wave to her brother.  You know how badly I just wanted to pick up my son and my daughter and feel the fullness of both lives in my arms?  But, it wasn’t possible.  The wires, the tubes…

Never should a child put hands on her mother’s face and ask her, “Mama.  Why are you crying?”  Which happened all the time while we were in the hospital.  Never should a family be torn apart days upon weeks upon months.

Child life specialists were excellent in trying to work with Iz.  But, as I watched Ms. Ashley talk to my daughter about Evan’s heart, the realization of our new normal was excruciating.

There isn’t much fun in hospitals when you aren’t sick.  Finding creative ways to keep Isabelle entertained and engaged was difficult.  Within the confines of a hospital room, there isn’t much to do.  Often, after an hour or so, my best girl would be ready to leave.  I felt my stomach plummet again as I bravely said to her and her Daddy, “Ok – I guess it’s time for you to go.  We will see you soon.”

Soon…because perhaps tomorrow wasn’t a visiting day.

That means I’d miss another day of her life.  I’d miss another bedtime story, another ballerina show, another day of watching Dora.  She’d grow in her sleep.  She’d dream tucked into her bed…

As I lay listening to the sounds of each machine beep, nurses disrupting Evan’s slumber, doctor’s discussing plans…when all I wanted was to be home with her and my Evan.

Never should bedtime prayers be spoken through phones.  Never should “night night” songs be sung across a distance.

Never should I look at one child and ache for his life and ache for home and look at another child and feel the weight of the guilt for the life I’m missing in hers.

Torn in two.

Home

Being home has been great.  No sugar coating, though.  The diva trantrums of my soon to be 4 year old can sometimes be overwhelming.

But, we aren’t separated.

As crazy as it may seem, being home is just as hard as being in the hospital – just a different challenge.

As each day passes and I watch Iz and Evan grow closer, the thoughts of these two ever being apart is a pain greater than anything I’ve ever known.  Iz has a new awareness of her “special” brudder.  She asks about his scars, wants to read the book titled, “My Brother is Having an Operation,” she makes random comments here and there that make me lose my breath.

“Mama – Evan is ok now see!”

“Mama – Evan’s heart is special.  His heart is sick.”

I’ll dismiss the comments with a quick kiss and a hug and answer them as easily and in her pre-school understanding as possible.

Not only is my daughter dealing with the addition of a new sibling, she is having to bear the brunt of a new sibling with so many needs that aren’t of the norm.

We have been told to not let Evan’s heart dictate our life.

How though? How can we brush aside the obvious dangers of our everyday and live our everyday?

We – the three of us – Iz, Evan and I – spend our days at home.  Most days we are dealing with cabin fever.  Most days I try and make the days indoors fun, exciting instead of all day T.V. fest.

She asks all the time, “Mama – why can’t I go to school?”

Crushing.  She doesn’t understand why she was so abruptly pulled out of her routine.  Telling her that the 9 cases of the flu that struck her school put her brother in danger won’t appease a 3 year old.

All she knows is that she is now without her friends, her songs with her teacher, the routine she thrived in.

Any changes in Iz’s routine – as simple as adding in a new therapy for Evan and having someone take her for the morning or afternoon – results in a physical manifestation of her emotions.

She regresses – suddenly forgetting how to use the potty.  She regresses – needing the constant reassurance and coddling of before.

Our new normal becoming her foe instead of her friend.

But, she rolls with it – not having much of a choice.

So, our days start with laughter and giggles of my two littles.  She loves her brother.  Protects him.  Sings to him. Fights with him.  Pushes him.  Prays with him.  Loves him.  Loves him.

As we face another surgery – not just for his cleft lip and palate – but another open heart surgery in the next couple of years – I am trying to find the words now and build up the courage now to explain to her what her brother would go through.

There is a fine line I must tread as her Mama.  I’m supposed to protect her. Keep her safe.  Be honest with her.

I can tell her the doctors will do everything they can for Evan.  I can tell her we will pray with all of our might that he will be ok.

But, I can’t promise her that he will be.

Her life is perfect to her.  I see it – even in the tantrums, the tears she sheds when she is punished for being naughty.  She has a built in best friend.  Evan has a big sister he idolizes.  They have each other.

And I pray they always will.

I’m torn.  I’m torn in two, even now.  Torn for the life that could have been and life that is.

It’s great – the weight of our lives and the uncertainty of Evan’s.

It’s great – the guilt I hold for the time lost with Isabelle and the fear for her of the questions for her brother’s future.

It’s great – the laughter that fills our home with my two littles on a daily basis.

It’s great – the unmistakable bond between brother and sister – one of protection, one of friendship, one of blood between two souls.

It’s great – all of it.

Jarod (14, HLHS) and his brother JW, 18 years.

 

Teagan, 4 1/2 with HLHS., Bode, 2 1/2 years, Gavin, 7yrs old.

 

Zoe Madison, age 2.5 (HLHS), Emerson Kennedy, age 4.5

Piper and her 6 year old sister Rylee. Piper had a heart transplant at 5 months old.

Cecilia, 7 months old Hypoplastic Left Heart Syndrome with big sisters Gina-7, Julia- 5, Anastasia- 4, Sophia 3