Part Two: Chapter One: "Shut Up and Take Your Blessing"

So much has happened. So much.

Saturday April 23rd we brought our son home for the first time. We didn't make it hugely public, didn't tell a lot of people. I was afraid it would change and I would be devastated. I was afraid that being too excited would ruin it.

It took forever on Saturday for them to discharge us. We had to wait for equipment and go over EVERYTHING that we had learned. We had to tell them what medicines Dean was on (Asprin, Prevacid, Lasix, Aldactone, Methadone, Flecanide) and what each one was for (blood thinner, acid reflux, get rid of fluid, get rid of fluid but not potassium, combat the wean off of the sedatives and paralytics, and his irregular heart rhythms). We had to know when to give them (6 AM, 2 PM, 6 PM, 10 PM) and how much of each. We had to to go over CPR again, who to call for what, when his next appointments were, and prove we knew how to use his feeding pump.

I understand why we had to do these things. I'm glad that they look out for my kid, but by the end of the day I wanted out of there so badly I couldn't sit still.

The time came. My son took his first car ride home with his Daddy and his Grandfather, three Dean's in a car together, me following, crying on and off. Overwhelmed and over joyed and nervous as hell.

We got back...there was so much to unpack so much to organize (I still don't feel organized)(And won't for a long time). Uncle John and Aunt Katharine came and held their godson, and they brought Ellie.

She met her brother.

Guys, she met her brother. 

They exist in the same space. Ellie loves him. She gives him his paci, she cries when he does, she wants to sit next to him, be near him. She's going to stomp him one day. Push him so hard in his swing that he tumbles out. Poor little guy...he's survived heart surgery now he has to survive his sister...

I had this moment on Sunday where I just took a deep breathe and thought "We are home."

And then I stepped back and thought "Crap. We're home."

My mind shifted into "whatdoIdowhatdoIdowhatdoIdo?!"

We went from constant monitoring to mediate monitoring. We went from bells and whistles and nurses to home and quiet and Ellie. We went from being away to being home. From big spaces to our tiny little house.

Would Ellie sleep through him crying? Would I be able to keeping up pumping? Would Blair be ok with the stress of it all? Would I be able to handle both kids by myself? What do I do if he de-sats? Would I be able to tell if he de-sated? What if  I missed a medication? What if I can't ever do the dishes or the laundry? What if Ellie makes me crazy and I yell at her too much? What if I break him? We just spent all this time working to keep him alive, what if I'm the mom who doesn't do it right and I break him? What if I don't do his feeds right?

It all boiled down to one thing: I am not an adequate Mother. I am not enough.

Lies.

Slowly but surely we are getting there. Slowly but surely I'm learning where I need to ask for help and when I can back off. Slowly but surely Ellie is learning how she can help, what's hers and what's Deedo's. Slowly but surely Blair is adjusting to waking up a lot at night.

I keep harping on this, but it needs to be very clear, we aren't done. We still have two more surgeries. I still feed Dean through a tube in his stomach. I still have to watch his breathing and his color (too pale or blue is bad). I still have to be cautious of those who are sick. I've asked people to wash their hands and I'm not ashamed of it. The time between the Norwood (the surgery he had at three days) and the Glenn (the surgery he will have sometime this summer) is critical. We monitor weight gain and blood saturation levels and watch his breathing. We live, but we live with caution.

We are home. But we are home with caution.

It has been amazing to see the community in which we live come out to help us. We have never had so much cereal in our lives. Or raisins. Or oatmeal. So many people have sent me offers of dinner and encouragement. Reminders that I am doing a good job, that I am enough, to give myself grace. People who offered to take Ellie for a night. Or an afternoon. Offers of time and love.

I am still figuring out where to ask for help and where to struggle. See, we are a family. And eventually, one day, we will be have to be us, without help. I am working on finding a balance of asking for help where I need, and realizing that these are my children and we are going to have to figure things out as a family. There is a fine line.

Don't get me wrong, Blair leaves for two weeks next month and the thought of this makes my heart beat a little faster and my fingers stop working so well. Scared comes to mind. Terrified might be a better word. (That might be a time I ask for a lot of help) (like...a lot).

Yes. This has been a lot. Some days it feels like too much. Like the weight of this might bury me and I won't know who I am or what in the world I'm doing or that my kids will somehow just break. All the sudden, they seem so fragile. Maybe that's why I fight so hard not to treat them like that.

It has been hard to just accept that where we are in life we need help. That yes, other families go from one kid to two, but their second doesn't always require quite so much attention. It's hard to accept, still, that Dean is different that his sister. Than other babies. I do let him cry, but I can hear it in his voice when he's hurting and that cry...I can't describe to you how it chills my bones.

I look at him and Ellie...my babies...they are still here with me and that's...that's so big. In the past two days there have been times when Ellie AND Dean need me and I can't get to them, and there are dishes to be done and a house to be organized and put back together and clothes to be washed and beds to be made and errands to be run...and I step back. And go to my kids.

And that's enough.

I am enough, in Christ, for them.

I know, when push comes to shove, if there are days when I'm falling asleep on my feet, when I am overwhelmed and scared, when it's all too much, that there are any number of people I can call who will step into my life and speak life and live love.

One day at a time. Slow slow slow. And lots of coffee.

I think we'll survive.

Chapter Twenty: "Not a Spotlight, but a Candle"

I was thinking about battles today. About fighting and perseverance. I was thinking about the Hebrew people, marching around Jericho, shouting praise, waiting for the walls to tumble down. I was wondering if they ever got tired. If they ever wanted to put down their instruments and drink some water and just...quit.

I. Am. So. Tired.

I don't want to be here anymore. I don't want to spend more time at the hospital. I don't want to make more phone calls trying to figure out our insurance issues. I don't want to get in the car, again, coming back to the Ronald McDonald house. I don't want to hear people tell how strong I am, I don't want to hear how much people care. I want to go home. I want Ellie back. I want to learn how to comfort my son. I want to stop feeling guilty that I'm not with him at nights. I want to stop face timing my not even two year old daughter as a way of seeing her.

The pressure builds as we talk more about going home. I feel like I've done this all wrong. Kicked myself for not asking the right questions and making the right phone calls. Blamed myself for the fiasco that we are in right now.

From the start I've said this was a battle. This was a journey, a fight. From the start I prayed for the right armor, of hope and peace and joy and love. From the start I prayed for the grace to get through this without sinning, without complaining, while glorifying the Lord.

So what happens when the armor is cracked? When I just want to scream at the injustice of this? When my shoulders tense up at the thought of asking anything else of my parents? What happens when I don't want to fight anymore?

All I can offer God right now is praise and my throat is hoarse. No sound comes out and I'd rather lay in the grass and curl up and sleep than walk around the walls again.

Blair and I spent the night with our son two nights in a row and we struggled. It's like we didn't know him. It's like we forgot everything we'd learned after we had Ellie. It's like jumping in and drowning. So we came back tonight to the house and this incredible guilt has invaded. I ate about half a cake because I didn't want to think about this anymore.

I can't even really articulate what's happening in my head. I can't explain it. I can't talk to my Mom, can't explain it to Blair. Here is it. The time that I knew would come, when I want to forget that people care and shut down.

I sit and rock Dean all the time. He loves to be held. Sometimes. He is so...stiff still. So...grumpy. I can't blame him, he's been through so much. He is still coming off medications and weaning down and going through withdrawal symptoms. He still sweats. He still cries like he's in pain. He still runs fevers every now and again. We are still learning how to love him and love him well. And it is hard.

My Mama heart feels weak. Worn out. Too long. This has been too long and maybe if I hadn't been so selfish, we could have been home sooner. Maybe if I were more organized we would have been home sooner. I feel this deep incessant nagging in my head that I didn't do a good enough job. I should have...I don't know. I should have done more. I should have gotten more done.

People are so excited about the prospect of us coming home and I want to scream. But at the same time I want people to believe that I can do this. What a double standard I am setting...

I don't know, right now, what I need. I don't know, right now, what to ask for. I don't know, right now, how to fight. I don't know, right now, how to see the light at the end of this tunnel, because it's not a spotlight it's a candle and it's flickering. Dim, subject to the wind and the storms and it is just so very far away...

This battle feels like the walls of Jericho, and we're on the sixth lap around and I just can't imagine getting to the seventh lap. I can't imaging praising anymore. Can't fathom these walls tumbling down.

My "one more day" has turned into ten weeks.

It's gotten harder to be patient, to be away from Ellie, to communicate well with my family and with Blair and with God. To be positive and joyful and hopeful.

Please God, please, after this...please just give me half a moment to breathe without being afraid. Half a moment to repair the cracks in my armor...half a moment to rest my voice.

And I will keep pressing on towards that candle, flickering in the distance.
One more step.

Just one more.

Chapter Nineteen: "Peace. Be Still"

Prepare yourself to be assaulted with feelings.

The words "going home" have been spoken. Videos have been watched, apps have been downloaded, baby has been put in his car seat (and passed his test), and g-tube has been placed. The date is still not official, so it's not being said "We come this day." It'll be a surprise.

I had a panic attack today for the first time in years. I think that last one was before Blair and I were married and I called him sobbing because I didn't understand what was happening. Today I had to stop and clutch the bed here at the Ronald McDonald House, lower my head and remind myself to breathe. I willed my hands to stop shaking and prayed that Blair would come up from taking the trash soon. I don't have attacks often...I never even thought I was an anxious person. Certain things though..they get me. If you've never had a panic attack, I'm glad. I don't ever say lightly that I do. It was awful today...felling like my chest was constricting and feeling like air couldn't get into my lungs...

I wanted my Mommy. Blair came up and hugged me and said "What do you need?"

My Mommy.

I am overwhelmed. At the thought of packing up the life we've lived here for two and half months, of unpacking it at home, at feeding Dean the right way, of now having to take care of him all the time, of adding Ellie to the mix, of doctors appointments, of warnings signs, at medications. My thoughts are rolling about fifty million miles an hour and I can't make them stop.

How I feel weirdly ashamed that I will still need so much help. How I am dreading the next doctors appointment, wondering if I can handle having Ellie and Dean and terrified that Ellie won't want to leave my sight. She knows now. She's caught on that we aren't with her. Blair and I saw her last Thursday for a while. She climbed up on the couch and patted on her right and her left and expected Blair and I to sit on either side of her. She has been with so many people, passed around. I know she was loved. But it felt like a thousand knives each night we were away from her.

I can't...explain how excited and terrified I am. How these emotions can live side by side and still I can keep going. I don't want to. I'm not sure what shifted, maybe my eyes aren't focused anymore, maybe I just need to go ahead and cry. Like a lot. Admit to myself that I don't have this.

I am 25 years old and I stood in the middle of this emptying room and cried because I wanted my Mommy.

I am reminded of something someone said to me, and that I heard her say, a lot. For the past two months a certain lady's words have come to mind, "Peace, be still." I know Jesus originally said those words to the winds and the waves and the storms. But I had never thought to use them in my every day life. Like when kids are being crazy, when the dishes aren't done, when the baby is crying, when you can't breathe because everything feels too much...those are the storms that we are facing. That's what Jesus says, "Peace, be still."

Stephanie Conley used to look at me over a cup of tea, with kids running around, school work strewn across the dining room table and a mountain of dishes and she'd just say "It's a process Maddie." I'm not sure why today all I can think about are those times when she would say these things to me, but they are resounding in my head like cymbals.

Which is why I paused in cleaning up our room here. Which is why I paused from the doing and the stuff and told Blair, "I'm going to write."

I needed to process things. I needed a moment. And maybe I need a cup of tea. And some chocolate.

This story, Dean's story, ours, Ellie's, it doesn't stop with getting to go home. This is a marathon and not a sprint...long term. And scary as hell. It is big and daunting and scary and new.

It is a storm.
And here is Jesus, the memory of Mrs.Conley, telling me, "Peace. Be still."

Chapter Eighteen: "Clench and Un-Clench"

I'd like to think we've handled this with grace. I'd like to think we've done a pretty good job of making choices, getting up each day, of looking at our son with an open chest, of still trying to see our daughter. I'd like to think, under the circumstances, we've done pretty ok. I don't cry every day, I try my very hardest not to complain, I try my very hardest not to be jealous or envious. I try my very hardest not to ask God "Why" all the time, because truth is, He doesn't owe me crap. He's God.

So why is it that the thought of sending us home with a g-tube pushes me over the edge?

I can't even type up how this all makes me feel without sounding like I'm straight up complaining. I can't even begin to tell you why it would mean so much to me to breast feed, especially in a culture that devalues it. Already we are facing huge odds. Already we are working against tubes and feedings and the threat of weight loss. Already we have come through a major heart surgery. And this just the start.

I am terrified of going home, because this all doesn't stop here. We have to learn CPR, have to know and practice how to give him his medications, have to know when his oxygen saturation levels have dropped, how to watch his breathing. Plus we will be back with our lovely beautiful toddler who likes to be part of everything. (I can see it now, "No Ellie, don't touch your brothers feeding tube") Let's add to this that next month my husband will be gone for two weeks. While I'm not working. While I have our heart baby home. With our toddler.

I am overwhelmed.

And we have choices to make. Big choices. Yes, no, what should we do. I wish this was easier, I wish there was a magic button. I wish my son could nurse at my breast and cuddle and snuggle and not have a freaking tube shoved down his esophagus or inserted into his stomach. I wish that when we went home it could be done.

I am terrified that people will think home means ok. It doesn't. It just means we are home and I become a nurse as well as a mom and a wife and sister and Maddie feels like she will be lost in there somewhere.

Tonight I want to break things. I want to smash glass, or drive along Skyline Drive, or have a beer, or paint, or anything else. What will I do? I will pump. Again. Even though my milk will not be enough calorie intake for my baby, and I will sleep, and I will go back to the hospital, again, and I will hold him while he THROWS up, violently from withdrawal, while machines beep, while I can't walk away more than a foot with him, while I will try again and again to put his socks on so that the pulse ox doesn't go off. I will ask the nurses for water, constantly, I will watch and re-watch the same movies. I will watch life go by outside on the window and I will live for the texts and pictures I get of Ellie. I will put him to my chest and see if he is interested in nursing again, knowing that as the week has gone on, he has become less and less interested...I can see him starting to hate anything put to his mouth. Hello oral aversion.

I have clenched and un-clenched my fists today. Ground my teeth together. Called my incredibly supportive Mom and wanted to hear the logical voice of my Mother in Law and my Daddy. I have wondered if my push to breast feed is selfish...if I'm the one holding my family back from being together because I want this so badly. Look, I get it, fed is best. I want this for my son. I want him to feel like a normal little baby who can eat from his mouth. This one thing. I want this for him. More than I can tell you.

I have tried to be graceful about what God has given me. Worked so hard to accept things, to let Him lead us and to guide us. Have prayed and prayed, begged, knowing that the first three years of Dean's life will never be normal. A g (gastronomy) tube makes me feel more than defeated.

It makes me feel like I have failed. Like what I'm doing is not enough.

Like I should quit. Accept that he won't nurse, and that it would be "better" to "just" give him formula and quit pumping and forget about the crap tons of oatmeal I eat to help milk production and just do whatever. Because we are told to accept that doctors know what's best, always...and god help you in you disagree.

They don't tell you about this part when you are diagnosed with HLHS. They tell you "yeah, it'll be hard" and "yeah you should try to breast feed" but the truth is...it harder than hell. The truth is you have to fight like mad to get them to lay off feeds so that your baby will be hungry enough to nurse, knowing the whole time that if your baby starts to lose that's not good news. They don't tell you that when you see your baby after surgery laying there with a piece of cellophane looking thing over their open beating heart, that your child looks dead. Pale and immobile and dead. With wires and tubes and it's the scariest crap you've ever seen and no matter what, you can never ever get that image out of your head...

I want what's best for my son AND my family. I want to give him the world and all the things that his sister got to do, knowing that he might never get to do those things.

Choices. Big huge hard choices that are making me sick to my stomach...that make me cry...that make me call my Mama, who I have to assure instantly that nothing is wrong because she can hear in my "Hey" that something is off.

I don't want opinions unless I ask. I don't want to be told how this is happening for a reason, I don't want to be told how God will use this, I don't want to hear those things right now. I want to be told that you're sorry. That you know no baby should have to go through all this madness just so they won't die. I want to hear you tell you that you couldn't do this. I want to be told that it's ok for me to be so angry tonight that I can't sleep or talk nicely to two thirds of the world. I want to be told that it's ok that I see other babies in their mama's arms without tubes and wires and things and I want to scream. Clench and un-clench. Deep shuddering breaths. Fear and Joy and emotions and crying. And thoughts going round and round in my head...

I promised myself to write about our journey. The good, the bad, the ugly. The days when I have faith and the day when my wells feel dry and I just want someone to listen to me cry. The days when I feel hopeful and the days when I'd rather be anywhere else doing anything else.

I can feel this storm in me brewing, welling up, threatening to burst. Trust me, I'm not holding back from it, I am trying to bring it forward, because afterwards, on the other side, I just want to feel the sunshine in my soul.

I feel like I'm past a breaking point.

I just feel worn down.

And I'm tired of these choices.

I just wish this could be easier.

I just wish I could break things.

Clench and un-clench.

Deep shuddering breaths.

Tomorrow is not today.

And today is almost done...