Ain’t Nothing Like the Real Thing

Today’s post is going to be a double serving of the real thing.  Recently, two things came my way that have moved me to share a different kind of post today – something that is less of an update on Hope and more of a raw peek behind the Sansbury-curtain on what this journey has been like for me and John – and not the “Everything’s great” look behind the curtain – a real, honest glimpse so buckle up 🙂  or save yourself now. 😉

Before we share the two topics, let us say that many of you have openly shared your compliments to John and me about how we’ve handled the last six months and for that we thank you.  Hearing people’s support and encouragement has given us both the strength to continue trying to persevere through these challenges with humor and loving kindness to ourselves and others.  But we hope that we haven’t participated in the type of relentless false-positivity that is so pervasive on social media today.

The first of these things is a video snippet I came across on Facebook – normally full of garbage, but once in a while you find a little gem (I’ve shared a link to the entire video below).  This snippet was titled “Why It’s Good to Embrace Negative Feelings” and was subtitled “We own our emotions, they don’t own us.  “Alright, Facebook, I’m intrigued.  I’ve certainly had my fair share of emotions these past several months – positive and negative – let me watch this and see if I can take something valuable away,” I thought to myself.  I love watching TED talks in general, so it honestly didn’t take much to sway me into watching a short clip of one.  I didn’t regret it.  Here is the link to the short 2-minute video if you would like to watch it:

2 Minute Video: Why It’s Good to Embrace Negative Feelings:
https://www.facebook.com/TED/videos/10159946160830652/ 

Here are a few of the insights from the video that struck me:

• A third of us either judge ourselves for having so-called bad emotions, like sadness anger or grief, or actively try to push aside these feelings. 
• We may inadvertently shame others out of emotions seen as negative, jump to solutions and fail to help them see these emotions as inherently valuable. 
• When we push aside normal emotions to embrace false positivity, we lose the capacity to deal with the world as it is, not as we wish it would be. 
• Tough emotions are part of our contract with life – you don’t get to have a meaningful career or raise a family or leave the world a better place without stress and discomfort. 
  Discomfort is the price of admission to a genuine life.  

Shut the front door.  It spoke to me on so many levels.  I was compelled to watch the rest of this TED Talk.  The full 15-minute version (link below) talks about the destructive power of denial and how a culture that values relentless positivity feeds into our becoming the master of being “OK”.  She talks about using food to numb her pain; refusing to accept the full weight of her grief during/after the loss of her father.  She touched on the fact that when emotions get pushed aside, they get stronger – the more you try to ignore it – the greater its hold on you becomes.

One statement she made hit me like a ton of bricks: “We are healthy until a diagnosis brings us to our knees.”  She later talks about opening her heart to her feelings while coping with the loss of her father.  Her real feelings of Pain. Grief. Loss. Regret.  These two statements hit me right in the feels.  I knew exactly, as many of you do, what it means to be ok until a diagnosis comes along and brings you to your knees.  I can’t tell you how many times I have literally felt emotionally forced to my knees over the last year.  Time and time again when we didn’t think it was going to get worse and things took a sideways turn, it was like I could literally feel someone pushing me down on my knees.  I also felt a sting with each of these words.  Pain. Grief. Loss. Regret.  Please don’t misunderstand.  Hope is a wonderful little girl and I love her more than anything – becoming a mother has fulfilled me in a way I couldn’t have imagined.  I am also painfully aware of the destructive force of denial – it’s a coping mechanism that runs deep on my side of the family – ensuring the exterior facade of false positivity is in tact so that everyone at church knows just how greeeeat things are.  This was kind of the MO of not just my family, but many other families I grew up around in our church – seemed normal to me.  To be honest, I wasn’t even acutely aware of it until someone I trusted pointed it out and it changed me.  John and I try very hard to call each other on it if we feel this is creeping into our lives in some way.  We knew from the beginning: John and I needed to be able to be real with ourselves and each other during this journey or we wouldn’t make out well on the other side.  We openly share our feelings of grief, sadness, loss and even jealousy with one another.  Yes, I can admit that it was hard for a while to see other people who had these beautiful, healthy babies – it doesn’t mean I wasn’t thrilled for them – it was just tinged with pain for me, too.  From the moment we received the diagnosis we started the grieving process of a “normal” pregnancy and a “normal” child.  The beautiful thing about allowing ourselves to feel that grief, and by sometimes letting it sit with us and not forcing feigned optimism, is that you can genuinely let it go.  And so we did this over and over again as we faced setbacks with Hope.  If we had tried to push these feelings aside, I really don’t think we would have weathered the last six months as well as we feel we have.

Another big struggle as a parent to a baby with a Congenital Heart Defect is in talking to people outside that community.  No one on the inside tells you “It’s going to be ok – she’s going to be fine.”  They know it’s not true – besides what is “fine” other than Freaked out. Insecure. Neurotic and Emotional…?  We noticed our diagnosis made those around us uncomfortable.  When they asked us to explain the diagnosis and treatment, it became clear they were eagerly waiting for the closure of when she’ll be “fine” and when we never got to a point where we said “….they will do this and that and then she’ll be ok/fine…” people seemed either perplexed and/or very uncomfortable.  And so we, too, have to be honest about the level of detail we choose to go into when asked about Hope.

We also had to grieve the “idea” of what we thought Hope would be – we had to let go of this idea of “fine” because medicine couldn’t give HLHS babies that.  If we hadn’t grieved and let go of that expectation I think we’d be obsessively trying to prove how normal she is and comparing her to all the growth charts and milestone markers.  In a way, allowing ourselves to process the grief opened us up to a level of personal growth that has made us both more resilient and free to toss the charts out the window.  It was freeing to realize that we were being given a permission that most parents have to find a way to give themselves.  Hope is on her own timeline and all we can do is follow her cues and give her the support she needs for wherever she is at that moment.  I encourage this more broadly.  I was a pretty good candidate to be one of those neurotic moms going through some expert’s developmental list obsessed with checking off her progress right on time so in a way I have to thank the fates that they took care of that for me!

Here is a link to the full TED Talk by Susan Davis on The Gift & Power of Emotional Courage if you are interested.

The second thing I’ve come across is a number of posts by other transplant parents about the pressure they feel to be “happy” and “grateful” all the time.  Timely, right?  This is actually a subject I personally have struggled with over the last few months.  I have had times when I just didn’t want to be positive and find the silver lining anymore – I just had to cry, let it all out and accept that I wasn’t going to have some of the newborn experiences with Hope that I had longed to have.  I would never know what it was like to feed her from my own breast.  The joy of that fun newborn shoot when they are so sleepy you can pretty much contort them into any position.  A real maternity leave where I get to spend 12 weeks with my daughter and my husband at home (not watching her hooked up to life support 24/7 in the hospital).  There is real grief in these losses, no matter how trivial they may seem to some people.  As I read the posts of other transplant caretakers I was relieved to find out that I am not the only one that struggles to put on a 100% positive, 100% of the time game face.  It’s not realistic and it’s not healthy.

This post is part of how I can show up authentically for my own grief and pain.  I think to be vulnerable and allow others behind the curtain has potential to help encourage other moms – heart moms and heart-healthy moms alike.  I don’t want to be a party to false positivity in lieu of real emotional engagement.  We all have our battles – every single one of us.  One of my favorite quotes is, “Be kinder than necessary because everyone you meet is fighting some kind of battle.”  It’s funny to me because when I think of answering others when they ask how John and I are doing there is an instinctual reflex to deliver a positive response.  We’ve talked about how hard that can be when we didn’t feel we had what people wanted to hear inside us.  But when I reverse it, I know I would welcome a real conversation with any of the amazing mothers I know about a hard time, a pain, etc. that they are going through in lieu of a forced positive answer about how GD great things are in their life.  I’d cherish the opportunity to share a vulnerable moment, mother-to-mother, or father-to-father in John’s case, and start to build a community of parents who lift each other up when they are struggling and hurting and tear down the stereotypical, catty, PTA meal-girl mom dynamics that were part of what scared me about motherhood, to begin with!  Can we all stop pretending to be the picture-perfect mother who always has her $hit together, is always happy, always on time (yeah right), is always well dressed, well coiffed, calm and can juggle having an amazing career and being the perfect mom at once with ease?  That lady is at home with her “momma-juice” ugly-crying at night in a closet alone about her shortcomings just like the rest of us 😉    Wouldn’t it be nice if we lived in a society that valued acceptance and social encouragement instead of false positivity and perfection?

Tough emotions are part of our contract with life –
you don’t get to have a meaningful career
or raise a family
or leave the world a better place
without stress and discomfort. 
Discomfort is the price of admission to a genuine life.  

This is my absolute favorite quote from the TED Talk.  Stress and discomfort, oh how we are all quick to loathe thee, right?  Yet, when you think about it, they are the tools by which we learn.  Watching Hope learn new skills has opened my eyes to this in a new way.  I can see her stress and discomfort and see that if I intervened each time, she’d take so much longer to learn those skills herself, like reaching for her little toys to make herself happy.  What a small thing and what a huge thing all wrapped up into one.  I also learned this myself at work a few years ago in a personal way that has remained with me to this day.  It was a real game-changer for me to realize that, my boss was allowing me to feel so much stress and discomfort (oh how dare he, right?) until I realized the real value in the exercise: he was allowing me to learn on my own and find my own limits – a skill I continue to use to this day.  Had he intervened and illustrated my limits explicitly to me, I wouldn’t have carried anything forward and I probably would have told him he was wrong – I don’t particularly like being told what I can and cannot handle #honest.  Discomfort and stress can often come with sweet rewards that aren’t known until we are on the other side and these two examples help remind me of that.

John and I invite you to find comfort in the discomfort and relish in a genuine life, full of the spectrum of life’s emotions from love and happiness to stress and discomfort.