Of Broken Hearts

I am not there yet.

Which means that my heart thinks and feels awful awful things.

Mostly, jealousy.

Huge amounts of jealousy. Big heaping spoonfuls fed up to me on a barbed wire spoon, cutting me when I try to swallow.

I am jealous that you got to hold your new born after they were born. I am jealous of your hours old photos of siblings meeting one another, Daddy holding Mama's back. I am jealous of your breastfeeding pictures, your laments over cracked nipples and cluster feedings. I am jealous of your new born snuggles.

I am jealous that you take walks outside. That your child rolls or lays on their belly. I am jealous that you don't have to worry about g-tubes, or oxygen levels, or blue lips. I am jealous that a cold means a cold and not a hospitalization. I am jealous that you see your friends as often as I see nurses. I am jealous of belly laughter and smiles and cries that are simply cries.

I compare, I compare too much. I look at your life right now, as it is and I think about our lives right now, as they are. And because I am human and far from grace, I want you to hurt. I want to gather up the blackness and ugliness I feel and give it you.

But in the same breathe...I don't want you to hurt.

I don't even know how to articulate these feelings. Except to ask for forgiveness when I shy away from you. If I cry when I look at your child. If I have to hide your pictures and your posts from my eyes. If can't help but mention where we are and how different it is from where you are.

Large chunks of my own heart are still healing. It was torn open the day our son was born and I went to sleep without him. It was ripped just a little more when he was three days old and I gave my beautiful whole unbroken son to some nurses and got back a broken open baby that I barely recognized. It was stitched back up the day that I got to hold him again. Those stitches rip open every time we take him back to the hospital. Every time I give him a shot.

Be gentle with me, my heart is broken too.

And when I see you, and your whole baby and your whole family, the redemption and the rainbows, the scars in my heart hurt just a little more. Again. And I do not want you to know what this is like. I do not want you to know this pain, this deep seeded jealousy that threatens my sunshine.

I am glad that you got to nurse your baby. That you got to hold that little girl or little boy. I am glad that you never worried if their heart would stop beating. I'm glad you do not have to administer medications and watch for blue hands and lips. And at the same time, when I see these things I am reminded how different this story is.

My son is not the only one working on mending their heart.

God is working on mine too. Bit by bit picking up the parts that I thought I "couldn't" glue back in and doing just that. Each time that it feels like my heart will break from the loss, the pain, the jealousy, the anger, he gently threads His needle. And He says "It is sharp, it will hurt. But you will be Whole. You will be mended."

Be gentle with me.

My heart is being operated on too.

Fierce.

I can recall a specific time when my mom showed me just how fierce she can be. 

We were at dinner, and my Dad was getting onto (read, yelling) at one of my brothers. I'm not sure what he did, but I'm pretty sure my Dad was being a little harsh at the time. We younger kids sat in silence, watching wide eyed. One of my younger sisters was probably crying because she has a tender heart, and if someone was in trouble she took it pretty hard. I remember watching my Mom during this exchange though...I could see her reaching a point that we did not like to see her get to. I vividly remember her SLAMMING her fist on the table (the dishes jumped I swear) and her telling my father "YOU will NOT talk to MY son that way."

I will never forget the look on her face.
Or the look on his. 

My parents had always been pretty united. They were one and the same. They made choices together, and even when they argued we watched them come to a conclusion together. Rarely did I see my Mother truly YELL back at my Father. This was one of those times and I think it's important that it was about one her babies. 

My mom taught me how to be fierce. She taught me to stand up for myself', she taught me that I was beautiful and talented. She cried with me, she prayed with me, she taught me how to be a woman of strength and dignity. 

And I have needed that knowledge and teaching more in the last year than ever before. 

Every day I am faced with the choices I need to make for my sons health. Every day I wake up deciding that today I will do whatever I need to do for him. Every day. 

And it. Is. Hard. 

It is hard because some days I don't want to. I want someone else to decide what to do for him. I want someone else to tell me what's best. I want someone else to know him better so they can make the tougher calls. It is hard because I don't want to tell the doctors that even though what they see looks good, something in my mama heart is still worried about our boy. It is hard because they hurt him, and I have to let them, because without it, his life would be forfeit. It is hard because I know too many woman with babies who didn't make it, babies who were doing just fine. Every day, we are faced with the fact that we might not have our son for long and every day I have to chose to say
"Thank you" for that. 

I have a beautiful friend. She has a project called the "I Chose Joy" project. It's amazing. She took what could have broken her and decided to find joy. To Chose Joy. Every single day. There are shirts  you can buy, I would highly recommend it. (The proceeds go to Joy Bags, which are sent out to parents who have found out that their little ones have HLHS...they offer support and love in a very difficult time.) So why bring this friend up?

Because I still need to be reminded to chose Joy. I still forget. I forget to see the Joy in the day, I forget to smile at nurses and techs, I forget to snuggle close to Blair and love on him. 

And I forget to tell God "Thank You." 

Thank You for giving our son half a heart. Thank You for making this road a hard one. Thank you for needles and medications and daily xrays. Thank You for shredded tires (that's a whole other story...) and sleepless nights. Thank You for clouded lungs and chest tubes. 

Thank You for drawing me closer to You, for reminding me how truly weak I am and showing up and reminding me how truly Strong You are. Thank You for teaching me, daily, to find MORE Joy. 

This is what I've been thinking about all day. Especially because I started a blog post that I will NEVER EVER PUBLISH. Seriously, I started writing, re-read some of it and closed my computer in disgust with myself. Boy did I need an attitude adjustment. 

And instead of my mom slamming her fist on the table, God slammed his mighty fist on my heart. Reminded me of the truth. 

And He told me to suck it up. Keep going. 

Every day. 

So I will do it all again tomorrow. 

I will fuss at the doctors and tell them that the way my son is acting NOW is the way he was acting before his lung filled with fluid and he turned blue. I will fight for more tests and more answers and I will advocate for the boy God has given me. 

And Lord have mercy I will be fierce. I will call on all the strength and dignity that I have and I will find the Joy. 

Because it's there. I know it is. 

Beach Glass

Where do I even begin? Let’s ramble for a moment, shall we?

We’ve been in the hospital now for almost two weeks. We’ve been away from our daughter for a little over a week, and we’ve been blessed that Blair got a job working out of the city so he’s here with us. I get up every day and go to the hospital to see my son.

This life is nothing that I ever even imagined for us. No one ever thinks this will be them and I pray that it never is. I would never wish this on anyone. I see Moms and Dads in the hallways, on the elevators, eating lunch, trudging in that slow hospital shuffle that only another parent with a child with chronic illness knows. It is a terrible thing to be able to tell someone “I understand”, because I hear the immense pain behind those words. They carry such a burden with them.

What someone is saying when they say they understand goes far beyond what people comprehend. You are telling me you understand what NPO means, what TPN and PPN are. You understand how good it was that he kept in IV in for a week, that you know what it’s like to hold someone down to get blood drawn. You are telling me that you know what it’s like to sit in the hallway, listening to someone you love screaming in pain, knowing there is literally nothing you can do to help that person.

If you don’t know what these things are like just bask in the thankfulness of that. Live there a moment. And then tell me “I don’t understand, but I am sorry.” Those are my favorite types of people.

I have entered into the world of “Chronic Illness”. Women in my support groups were talking about their Heart Kiddos starting school…the notes they write, the meetings they have, the constant phone calls to the school nurses. We all grew up knowing that one kid who needed his medicine. That one kid that got to sit out of different sports in PE. That’s my kid. That’s his life.

I would love to say that I’ve accepted that. Most days I have. This week it’s been weighing heavy on my heart. And I want to scream. Because I don’t want to hold him down any more. I don’t want to give him wash cloth baths on a chuck pad. I don’t want to have every single thing I do with him dictated by someone else. I don’t want anyone else to draw up his medication. I don’t want anyone else to rock him to sleep. I don’t want another vital check, interrupting moments of peaceful snuggle time. I don’t want Ellie to ask to see her baby brother through a screen. I don’t want to have to ask someone to love my daughter so I can take care of our son. I don’t want to live out of the Ronald McDonald House. I don’t want to not know when we’re going home; I don’t want to accept that there might never be answer as to WHY his lung filled with fluid.

I balk at it. I am resisting it. I am not “letting it go”. I want to be in control…of something, anything, for a brief second.

And I am not.

I am not.

If you can believe it, this was the first time the nurses in this Unit have actually seen me cry. Two of my favorites came by just to see how I was doing. They sat on the bench and rubbed my back and just said “No mom and no baby should have to do this, we’re sorry.” And I needed that. Because part of me still doesn’t feel like people truly comprehend the level of pain I watch my son go through.

So he can live.

Believe me, if there was an out button, I’d take it. Time feels so stolen from us. Six months ago I had a baby and I forget that so often.  Many days my son feels more like a science experiment and less like a baby. Many days I feel less like a Mother and more like a bystander, someone looking into a life that others would deem “unimaginable”.

I’m stuck in this place where I want to describe to people all the things we go through to keep him safe and healthy, and not wanting people to know just how bad it is. I hear often, “I can’t imagine what you are going through” and most of the time I don’t want people to imagine. Some days, the sharper edges of me, the raw edges that are broken against the rocks every day, wants you to imagine. I am human, and some days, I want someone else to hurt too.

I do not feel sharp or focused. I do not feel clear. I do not feel clean.

I just feel worn down.

I feel like Beach Glass that you find at the ocean. Worn and dirty and crooked. Beaten back by the waves over and over again, until I am washed up on the shore, buried under the sand.

And I know, I know, I know that that Sea Glass is beautiful.

But it’s taken one hell of a beating to get that way.

I am waiting for the Beauty.  I am waiting for the discovery moment, when someone will scoop up from the sand, clean me off, and see the beauty in this.

But right now I feel like I’m still in the Ocean, taking that beating.

The waves crashing, one right after another after another after another after another….

Inexplicable.

One of the hardest things about having a son with half a heart is trying to determine when what he's going through are "normal" baby things or if there is something more sinister laying in wait. As Dean continued to get fussier and fussier last week, Blair and I speculated. Is he teething? Is something wrong with the formula he's using? Is this GI related? Or is there something wrong with his heart?

I prayed and prayed that we would be spared a trip to DC. Which is why I had him seen by our local pediatrician last Thursday. So far we've had wonderful caretakers who all tell me the same thing "You were right to bring him in." She looked him over, we changed a few things, did our chest and ab xray and we were sent home. Our smily happy boy was cranky and miserable.

So fast forward to Saturday night. Blair is at Drill and I'm home with my babies. I wouldn't ever have said I was an "anxious" person, but I guess the term fits me as of right now. As the day wore on I just felt more and more out of control of my feelings. Around 7 when we do his shot I had a full blown panic attack. I couldn't breathe, couldn't grab hold of my thoughts, couldn't calm down. I texted a friend. I started to calm down. Told her not to come. Started to feel out of control again and had trouble breathing again. She was smart enough to come down to my house anyways. She rubbed my feet and reminded me that to breathe, you have to suck in air and let it out.

I couldn't even begin to tell you how incredibly scary that was. I felt light headed. I felt overwhelmed. I was sitting on my couch hyper ventilating while holding our son who was just looking at me. Ellie kept coming to me and saying "Mama crying. Mama crying." I kept telling her I was ok, she would pet my arm. Finally Blair came home, we got our littles settled in bed and crawled into bed ourselves. I had a difficult time trying to explain to Blair was exactly happened and what had triggered this. I wasn't sure myself.

Fast forward to two AM. Dean is on a continuous slow feed during the night. He'd been waking up more and more during the night and taking longer to calm him down. Blair got up to take care of him, and out of nowhere Dean started to vomit. Vomiting on his continuous feed is not a good sign. We decided then that we would call DC and explain what was going on to a cardiologist there. They didn't think it was urgent enough that we needed to come right then, but did encourage us to take him to INOVA to be seen there.

After the phone call I sat in bed and couldn't slow my thoughts down again. I felt my hands start to shake and my breathing start to get harder and harder. Blair told me to lay down and I couldn't, I felt trapped. I started to suck on something called a rescue remedy, something my wonderful friend had left for me. You know when you go the ocean and the waves are choppy and they knock you down, one after another? I'm not talking the super fun waves, the scary ones, the ones that make you think maybe you shouldn't have gone to the Beach that day? That's what it felt like. Blair laid me down, and curled into me and talked to me while I struggled to breathe. It took me a while, but I was able to calm myself and sleep.

That morning I just had this sense of urgency about taking our boy to the ER. I kept telling my dad, something is not right. My daddy got my girl (Blair had left earlier for drill) and I took off to INOVA. On the way there I prayed and I repeated "God is in control, God is in control. You don't have to be in control, you have no control, God is in control. You have done everything you can do for your son with the knowledge that has been given to you, God is in control. Trust Him. Chill." I repeated that like a prayer, a plea, every time I felt the panic start to rise.

Once we got to the ER things moved and escalated quickly. We went through the wrong doors (and Praise God we did!) and ended up at the ER nurses station. I looked down at my son and his mouth, nose, and hands and feet were blue. From there things moved quickly. His oxygen levels were at 55 (crazy scary low)(bad), he was dehydrated, and after an xray there was fluid on his right lung. A transfer to Children's was necessary.

I held him while they placed an IV. I held him while they drew blood. I held him as they did their xray.

When they came in and told me he was being air lifted my heart jumped to my throat and I thought "Ok Lord. You got this" and then I thought "I need to call Blair."

He was transported, Blair had left Manassass to meet him there in DC, and I followed behind in my car. I wasn't allowed to ride in the helicopter because of the extreme heat that day. We got to Children's, he was on high flow oxygen, another IV was placed, we were admitted to the CICU and from there a plan of action was formed. They placed a chest tube to drain his lung, intubated and extubated him on the same night. And now we are waiting for the reason WHY his lung would fill with so much fluid.

I wanted to write it all out. I wanted to talk about the panic attacks, I wanted people to know the prayers I prayed and the deep set urgency I felt.

Everything that has happened has been ordained and orchestrated by God. It has been scary as hell, but it has also been one of the most amazing spiritual experiences of my life.

I wasn't the only one experiencing this though. Blair had a dream that woke him right when he needed to be awake to take care of our son. Later as he told me of his dream my eyes would get wide and I would think "Wow Lord, you knew he needed to be awake to take care of not only our son, but me as I panicked. Wow." His dream is his story to tell, so I won't go into details. All I will say is that Saturday night, our house felt like a war zone. And I felt like I was loosing a pretty big battle. I felt attacked. Panic attacks are real things, but they don't often happen to me. Here I was with two in one night? What? And Blair woke up when I didn't to catch our son throwing up? What?

The urgency I felt Sunday morning...I knew we needed to go. I knew something was wrong. I knew he needed to be seen and soon.

Look its not ideal that we're here right now, but Praise God that we are. Praise God that He cleverly devised a plan. Praise God that he strengthened and prepared Blair's heart. Praise God that He protected me from what felt like attacks from something I can't explain. And I can't. I can you tell you what it felt like, but I don't think I could ever explain what happened.

We are once again, waiting. We are once again praying for answers. We are once again watching our son suffer, and Oh thank you Lord for that suffering.

The past month or so God has been doing some big works in Blair and I. Reminding us of the truth, that we are told that we are to suffer, that this life wouldn't be fair. But that He wouldn't leave us and that we would need Him desperately. If God had not begun the work he was doing in our lives...I'm not sure what would have happened that night. I'm not sure where we would be.

And I needed to write this all out. I need to remember. I need to be able to tell Ellie and Dean one day what God has done for our family. I don't want to forget...it's so easy to.

My precious baby boy...that kid has no idea the way he is fought for. He has no idea the stories that surround him, the people who love him, the church that stopped service to pray over him...

I wish I could write it better, explain it more...but I can't. Isn't that so cool?

God is too big even for words.
He is Inexplicable.

Sweet and Sour

So writing basically doesn't happen now. There is literally always something else to do, some one else to hold, another chore to be done. Someone is always crying and I am always exhausted.

I've thought about fifty million things I want to write about. I'm never sure what exactly is ok and not ok to talk about. I wonder if I am sharing too much, who actually cares, or what purpose writing serves. The truth is that for me to sit and formulate words here, it has to be worth my time.

Raising our son is exponentially harder than I ever possibly imagined. It goes far beyond his medical needs and to his very personality. He is a tough baby. Everyone sees him and comments how cute he is, how chill he seems, how nice it must be to have him home. Blair and I talk frequently about how much "easier" it was when he was in the hospital. He is demanding. He is particular. He is loud. He goes from "I'm ok" to "Holy crap should be go the ER because he's screaming so much?" Often people don't understand the depth of this. Because when we go out, to my parents or to other places, it's almost like he puts on an act so people thing I'm crazy for saying how awful of a baby he is.

But is he awful?

It is incredibly hard for me not to compare him to Ellie. When Ellie was a baby she was doing, or she did this or that. She had teeth by this age. She was still nursing. She would smile and laugh at us. Dean likes to be held (sometimes), he likes his own bed (sometimes), he wants a bottle (sometimes), he likes the swing (sometimes). I'm never sure what he really likes, it changes so often.

There are days where nothing I do consoles him and screams at the top of his lungs for up to an hour. I am afraid to go places and do things because I never know what his behavior will be like. Watching my rambunctious and adorable two year old while juggling him and his supplies and bouncing, rocking him to keep him calm is exhausting. If I don't have an extra set of hands, I rarely go out.

I have never felt so isolated in all my life. My list of places I do are very short. We go to Grammy and Grumpy's house, because he will tolerate my mom, and Ellie can play to her hearts content. My mom thanked me the other day for coming over...I'm not sure she understands the depth of gratitude I feel that her house is a safe space for us.

I do not to go to peoples houses. I do not go to parties. I do not commit to anything. Everything is a maybe and sometimes I have to say, "Hey, not today". Rarely do I make plans. And if I do, they are often changed. It is easier to just stay home and wait until 9:00 to do our grocery shopping than to even attempt it by myself with both kids. Rarely do I go to sleep before 9:30 and always I am up by 5:50.

All the sounds like I'm complaining.

I'm not trying to. I'm trying to lay out for people how insane I feel most days. Shoot, most mothers do. I'm no exception. But I have to be reminded from other people that what we are going through is a little "beyond" what most go through. I forget that sometimes. I forget that about our son.

It scares me how easily I get frustrated with him, because he's a baby. It scares me how easy is it to forget what he looked like when he came out of surgery, because it was scary as hell. It scares me that I lose patience with my children, who are innocent and don't know about anything but Mommy being mean. Ellie tells me "I sorry" now, when she bumps me, or spills something, or does something silly.

I love our son. I fight and advocate for him every day and will continue to do so. I always will. Letting that fierce love live side by side with the frustration I feel when I can't calm him down, is a hard hard pill to swallow. One minute I'm staring at him, realizing he's been alive for six whole months, and the next I would give anything to be able to sit in my underwear eating cereal pretending I don't have a son who might one day need a heart transplant.

Many days, I long for silence.

It is hard not to slap a label on him. Awful baby. Crazy baby. Psycho baby. I've called him the Devil once or twice too, I won't lie. Colicky. Lord Jesus...he is the type of baby I feel kids in high school should see. If they did, they'd never have sex. They'd be way to scared.

And yet...he is such a blessing. I couldn't imagine life without him. Couldn't imagine Ellie asking for anyone else first thing in the morning.

Life right now is sweet and sour. And I'm having a hard time surrendering the dreams I had for myself and for my kids. I'm having a hard time putting aside selfishness. I'm having a hard time being content. I'm having a hard time seeing "this is only a season." I'm having a hard time being gracious to people, I get frustrated easily, annoyed and jealous more often than I'd like to admit.

And yeah, I could end this on a "And that's why I give these things to God" note. But here's the deal, I do give these things to God, but...day to day living? Yeah. Sweet and sour. The sweet moments don't last long enough and the sour moments feel like they are never ending.

Young mothers are told constantly "you will miss this".

From the depth of my heart, please, here my plea, and stop freaking telling us that. We are exhausted, covered in poop, behind on our chores, behind on showers, feeling more like "Mom" and less like we have an actual name every single day. Yes. We will one day have grown up kids and we'll be like "Awe we used to change diapers and snuggle". But in the middle of a storm, sometimes all you need to hear is "Yeah, I remember that, it sucked." So yes, I'm so freaking excited for the day both my kids can pee and poop on their own. I'm so freaking excited for the day that accurately communicate their feelings. For the day that I can tell them I'm going to pee alone. Or at least shut the door because I know they won't kill themselves. I'm looking forward to those things. Let me. Let us.

I'm learning the sweet and sour way, frustration and love all wrapped up in one five minute span.

Anyways, Ellie needs to get down from her high chair and Dean needs...well, hell, I'm not even sure what he needs now. Hopefully I figure it out though because if I don't, I'm looking at about an hours worth of pure screaming.

Bring. It. On.