Tuesday, February 15, 2011

Every Heart Has a Story, Part II

Today I, along with many other heart families, will be taking part in a blog event hosted by Stefenie. This is the second event she has held on her blog and is entitled "Every Heart Has a Story - How CHD Affects Your Relationships". If you've just started reading here, or if you need a refresher course, feel free to go back and read my post from the first blog event.

Just being honest here, this is not an easy post to write. Congenital Heart Defects, first and foremost, have stolen my son's innocence and tattooed his body with scars. I can't even pretend that his broken heart is all about me.

With that said, being the mother of a child with a chronic illness, and the special needs that follow, will ultimately change the way you interact with others around you. It can be good, it can be bad, and it is bound to be ugly at some point. I intend to share all of that with you today.

For the sake of ending on a high note, let's start with...

The Bad:

The moment Jeramie and I stepped into Ethan's room to lay eyes on him after his first open heart surgery, we knew we were different people. You cannot stand over your child's hospital bed, watching their heart beat inside of their opened chest, and walk away not feeling changed in some way.

For me, it was a sense of gratitude and appreciation that I never knew I could feel for someone or something. Now, you may be thinking, "I thought we were talking about bad stuff right now; that sounds pretty darn good to me." Just stick with me...

All of a sudden, on Ethan's 3rd day of life, I felt like I would do absolutely anything to see to it that my baby would come to know me, despite his awful beginning. Wake up all hours of the night to pump, because it was the one thing I could do for him? Absolutely. Cry tears of joy when the nurse asked if I wanted to change his diaper? You bet. Sing and read to him, believing that he could hear my voice through his medically induced coma? You better believe it.

And, that was just the "easy" stuff.

As my arms were aching to hold my child, and everything within me so desperately wanted to care for him, I began to develop a very short fuse for parents who didn't seem to feel the way I did. I would read things on Facebook, or hear friends talking as if being a parent was some sort of burden, and I began to harden inside.

"How dare they complain about their child waking up in the middle of the night, as I sat in an ICU room begging mine to open his eyes?" ... "Didn't they realize how lucky they were just to be allowed to pick up their child to console him/her?"

Even after we brought Ethan home from the hospital, my zest for his life, as well as my annoyance with others, continued. In fact, I believe it was heightened. I repeatedly allowed comments to get the best of me, even if they weren't necessarily directed towards me. It didn't take long before I found myself becoming more and more bitter towards various people in my life.

Eventually, friendships were strained and I pulled further and further away. As if having a chronically ill child is not stressful, lonesome, or exhausting enough, I found myself trying to do it without the support of friends. It seemed like I was constantly being let down, offended, or disappointed by this person or that person, so I gave up. I relied on two or three friends, my husband, and our family and shut out the rest.

Instead of going to the "offenders" and having an honest conversation with them, I kept it all bottled inside. It stayed there for a little over 18 months, until I finally confronted one area of hurt feelings. And, let me tell you, it was not pretty.

The Ugly:

It was obvious to a few of my close friends that one particular relationship in my life was severely breaking down. Out of respect to that person, and to the healing that has taken place in the past few months, I will not rehash our conversation.

Instead, I will tell you that both myself and my friend have learned a lot about ourselves since talking that one night. It is not easy to sit across the table from someone and admit where you screwed up. It is much easier to point fingers, place blame, and get into the "should-a, could-a, would-a"s. And, not only is it easy, but it's pretty much inevitable that someone is going to raise their voice, and something else is going to be said to cause even more hurt.

All of the above happened during hours worth of conversation, but it was so necessary. We each had things that needed to find their way out of our ugly, hardened souls, but it has absolutely made all the difference.

The Good:

For the sake of continuing the story I have started, I will tell you that God is in the midst of restoring that broken friendship.

I'd say that's pretty good, wouldn't you?

Actually, I just told that friend yesterday that had this post been written a year ago, y'all would be reading a much different story. It would be full of packed-tight bitterness, anger, and hurt. I would still be pointing fingers, placing blame, and yet to realize how much my own junk was getting in the way. I am thankful that there is so much good to be found in honesty, forgiveness, and love.

But the goodness doesn't stop there. Let's go back to Ethan's first few months of life for a minute.

After Ethan was born, and the diagnosis was made, our church community immediately sprang into action. Before we knew it, we had places to stay, money to buy food, and parking passes for the deck. There were also people who came to the hospital at a moment's notice when things took a turn for the worse. Friends sat in the waiting room, on multiple occasions, and for long, grueling hours.

I don't say all of that to brag about what was done for us. I say it because I have never seen God's Kingdom come to Earth, and His children live out Romans 12, as I did in those dark months after Ethan's birth. God used so many people during that time to continually remind us that He was still good. He is still good. I don't want to think about what my faith in Him might look like today had it not been for seeing and feeling Him at work in our life through the lives of others.

Thank you for that.

Our family has also been so very good to us. You would think that would be a given; they are family, after all. But y'all don't know how many people we saw sitting in waiting rooms without the support of their loved ones. I will be forever grateful for everything they have done for us, and continue to do, and for the way that Ethan's tiny broken heart has tightened all of our bonds.

Where I Am Today:

Like I said earlier, I have learned a whole lot about myself during the past (almost) 2 years! Those realizations have helped me understand that, just because my son was born with a CHD, people weren't automatically bad friends. It's my responsibility to realize what bothers me most about his condition, identify the triggers from others, and then deal with it.

(Side note: I do not think that gives people a free pass to say what they want, though! I believe there absolutely should be sensitivity and compassion when talking to someone with a chronically ill/special needs child, especially in those emotionally heightened beginning stages.)

I am now at a place where I feel like I'm ready (and wanting) to enter into the typical stay-at-home-mama world. You know, the place where I can talk about preschool and play groups, and what to feed my child for lunch, without feeling like tears will erupt because I don't know if my child will make it to ever do those things. That fear still creeps in from time to time, but I choose to remain present; to not focus on the "what ifs" but to be thankful for what is.

However, it seems as if my sensitivity during Ethan's first few months of life has kept others from really opening up to me in that way. I remember when Jeramie and I were sharing our story during a series at church. We were going to talk a bit about how our relationships with others had been affected, much like this post. As we were going over what to say that Sunday, our pastor said, "Now, you know that after you say this, people are going to be afraid to say the wrong thing, so they probably won't say anything at all."

Boy, was he right.

There are times I feel like people are afraid to talk to me. It's as if they're scared to ask how I'm doing and wait around to hear an honest answer. I'm still trying to figure out if that's because of some defensiveness that I'm showing, fear on their part, or both. It means the world to me when someone talks to me, mom-to-mom, friend-to-friend. Not "mom-who-doesn't-know-what-it's-like-to-have-a-sick-child" to "mom-who-has-been-there-done-that", but just real, honest conversation.

It is my current prayer to find more of that here in Raleigh. (Notice I said more. I absolutely have some of that already.) It goes without saying that I have a huge network of support through all of the other heart mamas out there, all across the country. But, aside from a few of those moms who are also personal friends, I can't call them all up for coffee or to go on a walk. The challenge is to find like-minded emotional support from women already in my community, and it is just as i said: a challenge.

Despite all of the hurt feelings, tears, and ugly conversations, I know that God has been shaping me to be the mama, wife, family member, and friend that I need to be. I know that if everyone were to walk away from me today, He would sustain me. But, I also know we are meant to live in community with one another, to support and encourage, to speak the truth in love. I know that we are called to live out Romans 12 everyday, not just when a crisis arises.

I know that I have a lot of work to do to get to that point; how about you?


Stefenie said...

I loved your post Joye! I can relate to a lot of what you said.
Thanks for joining my blog event.

Mandy said...

Love ya girl!

Jen Foster said...

Great post! I can completely relate.

Can I be one of the real mom-to-mom friends in Raleigh?! ;-)

Amanda B. said...

Joye- such a beautiful post. So many true statements and incite into the life of many heart mama's out there. You are my hero in so many ways and I am so proud of you! Love you girl!

Dana E. said...

So happy you wrote this. I can imagine it was difficult to write it out for the world to read, but it is all so very true. Love you girl, and so happy to be along side you in life.

Jen said...

I wish I lived closer- I have a feeling we would make great "real life" friends, even though the "blog friend" thing is great too. :) So much of what you wrote I found myself relating to. It was a beautiful post from the heart. Thanks for sharing!


Anonymous said...

Wow Joye, that was a very powerful post. I haven't read any in a little while and that one really got to me. Even though I may be far, I hope that you know that I'm always here to listen and will come visit if need be! :)

mossfamily said...

I don't know how i missed this post originally, but i did. Very profound & well written. You are one wise & mature mama to realize these things about yourself & to offer up forgiveness to others. Sometimes people just flat out don't know what to say, so they just keep to themselves! You are doing an awesome job with Ethan & I have so much respect for you! Please know that aside from the professional side of our relationship, I do truly consider you my friend. You can call me for coffee & a walk anytime & i will have a down to earth mama to mama conversation about anything you feel you want to chat about! I'm all ears! I love talking to you!!

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