Guilt

“We want the best for him.  That’s it. We love him so much”

I looked at Dr. R.  My eyes pleading with him to tell me our boy will be ok.  When I know that that fate is in the Hands of my Father.

His eyes met mine.  Kind.  Compassionate.

“I know you do.  And that’s what we want, too.”

A pause. And he looked through me and saw something I had been hiding from so many.

“The guilt.  It will go away with time.  Nothing you did or didn’t do made this happen.  You are doing everything you can…and it is enough for him.”

Breathe.  I had been holding my breath.

 

The guilt.

 

I look at my boy and wish things were different.  Yet, I don’t think I would change him.  He’s perfect and one day he will be healed.

The first time I got the diagnosis for Evan, I remember looking for a reason why this happened.

Why did his heart not form right?  What was it that caused his face not to form correctly?

What didn’t I do?

What did I do?

Did I not take enough vitamins?

Did I take too much?

Did I not eat enough?

Did I eat too much?

Was I overweight?

Was I underweight?

Was my exercise regimen too rigorous?

Was my exercise regimen too easy?

You get it.

Every question of the whats, the why’s, the hows.

I was told over and over again that this wasn’t my fault.  And, unfortunately, a congenital heart defect happens 1 in every 100 babies. Cleft lip and palates happen in 1 in every 600 births.

Read that again.  The part about the heart.

1 in every 100 babies.

It’s free from prejudice.  Congenital heart disease is an equal opportunity attacker – it doesn’t care how old you are, what color your skin is, what god you pray to.

So, why the guilt?

Because, that’s what we do.  Heart Moms – that is.

We guilt our way through this journey.

It starts from the beginning.  The diagnosis…and feel the guilt of what could have caused this weighing heavily on our shoulders.

Then, we feel the guilt from the moment we give birth and they take that bundle of screaming, wrinkly, *hopefully* pink perfection out of our arms and whisk them away for a series of pokes and prods.

I was one of the lucky ones.  My Evan felt the touch and love of my arms and my kiss before he felt the touch of a needle piercing his skin, the cold sterile gloved hands of someone not his Mama.

Many of my Heart sister’s babies weren’t so fortunate.  Their bundle of love – who they prayed over, protected, promised to love forever, shared the same heart beat for 9 months – taken from them too quickly.  I’m sure…pleading…in their hearts or through tears….willing their little ones to hang on…reassuring the flesh of their flesh that they would get to hold them soon but they loved them already.

Then the guilt when we finally get to see them.  Some of us, if we’re lucky, get to see our babies the next day.

Our hearts aches as we look at the innocence before us.  Needles, wires, tubes running every direction.

Yet – we see the baby we love so much and would give our heart to in a second to make it alright.  Unable to touch them…hold them.

The guilt we feel physically.  As our breasts ache from the mere sight of our little one.  Wanting nothing more than to pick them up, bring them to our chest, and let them touch, feel, smell us.  Our bodies react innately.  The tingling sensation as our breasts prepare to make milk for our babies…wanting to relieve that ache with the suckle of our little one.  Wanting to have that moment where their little hands almost hold onto us, their eyes fluttering shut in contentment as they feel their bellies full of the milk their Mama made just for them, needing the connection and the bond of nursing.

But, so many of us can’t nurse our babies.   But still, so many of us make the milk.  We turn to the cold and callous breast pump to alleviate the fullness.  But, nothing compares to having your little one latch.  But, we do.  We guilt our way through each pumping session.  Every 2 hours – all day, all night.  Trying to make milk – despite our lack of sleep, not eating, stress, or the worse….trying to make milk as you pump in the I.C.U. – with the sounds of the machines beeping in the background – willing your body to make a droplet – as you stare at your baby post-heart surgery – open chest, breathing tube, the wires, the tubes.

We guilt our way through the moment when the nutritionist walks in and says the plan on starting your baby on formula – trying to explain that your baby needs calories.  Calories to grow.  Because growth means the heart will grow…to prepare your little for surgery.  The panic sets in with the guilt…”Is my milk not enough?” Suddenly feeling another pang of failure…thinking…”I wasn’t able to grow you the right way inside.  Now what I am providing…may not be enough.”

We guilt our way through the formula bit.  Trying to shield our hearts and our minds from the nonsense of articles, opinions of others about how formula is the the devil’s drink.  Opinions so biting, so hurtful – cutting through us as moms.  So many of us, wanting to give our children Liquid Gold – which we know is breast milk – but for one reason or another cannot.  Wanting so badly to tell those people, respond to those articles toting that the world is going to sh*t because of formula fed babies – wanting to say – “Come talk to me when your baby is in critical condition, with the tubes and wires.  Come talk to me when you are up pumping in the middle of the night – your nipples bleeding and cracked – because your body is shutting down shop – yet you are desperate to get a drop for your baby. Come talk to me when the heart surgeon says they want your baby to grow…get as big as possible…for their open heart surgery….and they feel that formula will help that cause.”  But we shut our mouths.  Too tired to defend our cause….can’t change stupid.  Too angry to articulate our feelings.  Too knowing….never wanting another mother to experience what we’re going through and don’t expect anyone to feel how we feel…unless you’ve walked in our worn down shoes.  So, we guilt our way through that.

We guilt our way as we shove feeding tubes through noses and down throats.  Wishing they could just be normal and take a bottle at least…but their hearts to weak to do so.

We guilt our way as we pump in medication after medication in our defenseless babies.  Wishing that the drugs we are putting into their bodies weren’t meant to treat heart failure.

We guilt our way through weight checks.  Chronicling every gram gained and lost.  And the losses…searching our minds…did we not give him enough?  Was it because he threw up that one time…must have been because I failed to burp him….gave him too much…gave him too little.

We guilt our way through every doctor appointment. Doing the research. Asking the questions.  Needing the answers.  When the only thing true question we want to ask is, “Will he be ok?” And wanting the response to only be, “Absolutely.”

Guilt.

Part of our journey.

So much of our journey.

With time…it will go away, Dr. R says.  Knowingly enough…his own daughter enduring heart surgery many years ago.

With time…the guilt should go away.

Someday.

Just not today.

 

Comments

  1. Czarina, I am amazed at how well you put feelings into words. I am still waiting for the birth of my HLHSer Isabelle, and have ‘lofty’ dreams of being able to nurse her. I know the reality isn’t as bright as my expectation, and it is posts like this that remind me that even though this road is far from easy, it isn’t one that I will have to travel on alone. One of the hardest parts about the diagnosis for me was hearing that I may not be able to nurse this baby like I did the others. Thank you for posting this and all of your other posts – your emotional honesty has helped me be honest with myself.

  2. Erin Maniscalco says:

    You wrote my heart down again. I can’t explain these feelings to people around me when they ask me why I’m doing things a certain way. I often find myself putting on a brave face for my loved ones so they don’t see the guilt.
    Knowing you through your stories has helped me to keep doing the best I can. Your bravery and you open honesty and raw emotions are standing as a testament to the mothers of CHD Children. Thank you!

  3. I have walked this road recently. Couldn’t breast feed so I pumped like a maniac. Then we couldn’t use my milk (milk protien allergy), then we want him to gain weight before his SECOND open heart surgery. Against my hard work and good intentions he’s a formula fed baby now. Thank you for bringing me some calm and ease with the situation. Sometimes just knowing I’m not alone takes the edge off all the guilt. Sometimes.

  4. Emma's Nana Jana says:

    So beautifully written. And you are right: he is absolutely perfect in his own way, this precious son of yours! I feel the same about our Lil Warrior Princess, Miss Emma!

  5. This is exactly how I felt. It brought back so many emotions reading your post. Thanks for sharing so others may be able to know what we go through for our heart babies.