Chapter Seventeen: "Let your Fear live side by side with your Joy"

I wish there was a formula for when I am going to have a bad day. I wish that I could wake up and know that today I would have to fight harder to be joyful. I wish that could battle better, hold onto the Promises more, take up my armor willingly.

I don't though. Some days I wake up and I think "what's the point of even going to the hospital?" Some days I wake up and want nothing more than to crawl back in my bed and stay curled up there. Some days by the end of the night, I would love nothing more than to say "I've pumped enough, I don't have to wake up every three hours tonight." Some days I want to shut out people...just like my son shuts his eyes and shuts down, that's what I want to do.

I don't know what happened yesterday but it was a day for me. I slept through alarms, messed up my pumping schedule, and when Blair tried to cheer me up I shut him down. "Oh. Sorry..." he said to me through text when I told him that his attempt to cheer me up really wasn't working. I didn't want to go see my son. I just...wanted to lay here in bed, pull the covers over my head and forget. I didn't want today to be happening. Didn't want to face the new challenges. Didn't want to go and hear more of the same...again and again. I couldn't find the Joy. And I was just Afraid.

We had so much information yesterday. It was the first time they even mentioned what we would have to do to get home. Feedings and tubes and trying to nurse. How if he puckers his lips shut that I should just back off because we don't want to do to much to soon. How he threw up while I was holding him, face red, gagging and retching. Have you seen a baby throw up? Not spit up, throw up? I hate it. It always freaks me out when he does that...I know how that feels. I can't do much but hold him and talk him through it and let him know I'm there. We talked about how before Blair and I can bring him home, we have to learn, well, how to do CPR. Just in case, the nurse said.

Just in case...

In case his heart stops, even after we get home. In case his oxygen saturation levels plummet. You know what I thought yesterday? What happens if we go home, and I have to rush him to the ER and I have Ellie and Blair isn't home? I have to plan for that. This is my life now. This isn't over. This won't be over for the rest of my life, this is the rest of our lives.

Yesterday, it was hard to find Joy.

I was annoyed and grumpy. I was cranky. I was hurting. I was sad. I was angry. I wanted to cry and scream and throw things and break things. I wanted to go home. Bu nott home home, back to this one room where we've been living for the past two months. I just wanted to lay here. I just wanted to cry. I considered calling my Mommy...because all the sudden, everything felt like too much, too big.

I couldn't find the Joy.

As the day wore on...we changed some things, talked to more doctors, more nurses. Waited and watched. Cuddled. I learned how to give him a bath...which is a whole new thing in and of itself...it has to be done a certain way because of the scar that goes down his chest. I put him against my skin for the first time, on my chest. He is seven weeks old and he doesn't know what it feels like to lay against his Mama's skin.

I am still very afraid. I don't know when I won't be. I don't know that I will ever not be afraid. An infection could put your kid in the hospital, it could kill mine. It is hard not to think about the future without a lump in my throat. It is hard to think of next week without my heartbeat speeding up. Every day feels like a bandage being ripped off. Every day I have to pick up the armor that I've been given, tell God that I trust Him and I have to fight.

And some days, that fighting is hard for me.

I wish I could tell you that something happened and my attitude turned around and I found the Joy yesterday. I didn't though. I just was negative and quiet. I thought I was going to go to bed with all these feelings pent up in me, an angry storm.

When Blair got to the hospital yesterday, he gave me a letter someone had sent me. "Let your fear live side by side with your joy" they wrote. "You are a joy filled person- keep that part of you even with the fear in your life."

It felt like I was being given permission to have a bad day. To recognize the fear and embrace it and give it over to God. It felt like an admonishment. Find the Joy, and when you can't- Look Harder. It felt like being told that it's ok to cry when I hold my son because he is so so so beautiful to me, and this is so so so scary.

I've wanted to go home with my babies from day one of his life. I want him and Ellie to meet with everything in my being and I want just one. One picture of the four of us together. It feels like every time one good thing happens, I'm ready to move to the next one. I can hear him cry, now I want to hold him. I got to hold him, now I want to do skin to skin. I got to do skin to skin, now I want to nurse him...it is hard to stop that thought process and remember, each thing is it's OWN Joy and I can WAIT in that. Bask in that. Stay there for a moment. Hold down the fear and anxiety with what is happening NOW and how NOW is good.

Fear and Joy are holding hands right now in my life, walking with me through this.  There is not one without the other, though I so wish that I was living without the one.

My reality. My life NOW.

There's a Need to Breathe song with the lyrics that say "God of mercy/Sweet love of mine/I have surrendered to your design". This has become a prayer and plea. That I could surrender to THIS plan. Partly because, I don't have a choice now. This is my son. This is his life. This is what we have to go through to give him Life. Every time I see his scar I am reminded that for him, life came through the knife. It just looks different for him. Which means it will be different for us.

Today. I am going to look harder. Because yesterday I was just blinded.
I will try again and again and again and again.
I will look harder, longer and then I'll stop there when I find it.
Because I don't know what else to do some days...

Chapter Sixteen: "Be Like your Daddy, Son"

Sometimes I imagine Dean reading these one day. I think, what would I want him to see? What would I want him to know? 

This week, I just wanted to tell him, "Be like your Daddy, son."

Be strong. Carry burdens for others, the way your Daddy is carrying this burden with me right now. The way he holds me at night, in my worst moments, when I am scared that I am going to lose you. 

Be compassionate. The way he holds your sister, plays with her and loves her. The way he snuggles her close in the mornings when she's here in DC with us, even when he wants to crawl back into bed. 

Be observant. Know the people around you, what would make their hearts happy, what would touch them. Know how to help others through the days that are hard and know when you need to let them cry or distract them. Your Daddy is so good at this. 

Be like him, Dean, and watch what he does. He might not realize this, but he is an amazing example of what Christ is like son. See Christ gave up everything for us. Even his life. Your Daddy has done much of the same. 

While I'm at the hospital with you, watching, waiting, praying, your Daddy is working. And he is working hard. He making it so that the three of us, you, me and sister can all have a home together when you are healthy enough to be home with us. While I wait, he works. 

Oh son...these days are long. And they hurt us, especially your Daddy. He is afraid of not being here when he needs to be, not knowing he is exactly where God has called him to be. He is afraid that I will need him and he will be at work. To be honest, some days, I'm afraid of the same thing. And there have been days. Days that don't go so well where I am alone, waiting. Wishing that I had his calm presence there with me. 

People say that your daddy is a small guy, but to me, he is the biggest, the best. His shoulders are big enough to carry you, me, and your sister. His arms are strong enough to hold me up when I can't stand and gentle enough to hold you and your sister when you are small and fragile. 

Be like your Daddy, Son. He is showing, right now, how to be a Man. Teaching you how to take care of your family that Lord Willing you will have one day. He is teaching you to give yourself up for others, the way Christ gave himself up. And the best part, my beautiful boy, is most days he doesn't even know it. 

Your Daddy is learning to be like His Daddy, your Grandfather. The older he gets, the more we grow as a family, the more your Daddy says "Oh, I understand my father more." And the more that your Daddy understands his Dad here on Earth, the more they come to understand our Heavenly Father. 

Son...we love you. So very much. Everyday that I spend away from you hurts. Every night that you are not in my arms hurts. Every moment of everyday I am aware that you are still in danger of not leaving that hospital. I cling to hope like a woman drowning in the ocean, unsure of what is before me and beneath me, but knowing that there is life so long as I hold on. 

This is what we are doing, Daddy and I. We are clinging to a lifeline, a hope, a promise in Jesus that there is Victory over death and the grave. No matter how many days or weeks we have you here, we know that Eternity is so. Much. More. THAT is where our hope is. THAT is the piece of wood we cling to in this ocean. 

Be like your Daddy Son. 

Be strong and get better and come home. 

Chapter Fifteen: "Learning to be Held, Together"

Babies have few jobs in life. They are here to be cute and poop and pee and eat and cry and be snuggled. All they want to know and feel is the comfort of their mama's and daddy's and the people who love them. They should be held, as much as possible. Talked to and someone should take a million pictures of them.

So what do you do when you can't hold your baby?

You stroke your little ones head and touch their toes and fingers. You learn how powerful your voice is and you talk, a lot. You sit close to them. You be a presence. 

I have learned to love Dean in whole new ways. 

And just when I was getting the hang of not being able to hold him, I was all the sudden told we could. And just when I was getting the hang of asking for the nurses help to get him all settled, we moved and I was told I could hold him without help. 

He sees a physical therapist now, about three to four times a week. They come and talk to him and coo over how cute he is. They help him move his little arms and legs, they pick him up. They bring his hands to the middle of his chest, where his beautiful patched up heart beats. They stretch out his arms and legs. They tilt his head down so he doesn't arch his back so much. 

They tell me how important it is to hold him when he's awake. 

Yesterday, she told me that he is learning how to be handled, how to be held. 

My infant son doesn't know what it's like to be held. 

This is something I didn't anticipate. I didn't realize...so many weeks, he went so many weeks out of my reach. He was always snuggled up in the blankets, in a little nest. He would turn to my voice, and now he has to learn to respond to my touch. 

For a hot minute, this made me so angry for him. So angry for all these babies. So angry at the world and sin and death. So angry that my little tiny baby didn't know what it was like to be held. When I pick him up, his eyes get super wide and he arches his back against me. When he's in my arms, he closes his eyes. You would think this is a good thing, but his therapist was actually telling me this is a sign he is shutting down.

That merely being held could be too much for him. 

I hold him in spurts. When he is alert and awake. I get his eyes to track me, we sing a song I sang to Ellie, a song I still sing to her sometimes. I help him move his arms, legs, and his fingers. We make a fish face with his mouth, to help him learn how to pucker. 

I am teaching my son, almost seven weeks late, what Mama feels like. What skin feels like. What his fingers and arms do. Because he doesn't know. I can't get it out of my mind that he didn't know how to be held...and then, I realized, this is what I was learning too...

We spend our lives learning how to be independent. Learning how to do things on our own, and this is not a bad thing. I think we take it too far sometimes. We think it means that we can't show weakness or that we can't allow ourselves to be carried through things. 

But oh man, more and more, I've needed to be carried through all this. 

I need my husband to carry me when I feel like not pumping in the middle of the night. 

I need my Daddy to carry me when I forget what questions I should be asking. 

I need my Mommy to carry me when I feel like we will never go home and when I worry about my little girl. 

I need my sons Godparents to carry me when I forget the deep truths of Scripture. 

I need my brothers when I feel like I'm alone, their calls and texts and cards...give me such lift. 

I need my older sisters-in-law when I need to talk about anything else, or need a friend to talk to, or when I need a cup of coffee. 

I need my Church family to lift us up and carry our prayers for the days when I feel to weary to do anything but crawl into our bed. 

I need my God to carry me through the despair and impatience and frustration. 

I need to learn to be Held, just like my little boy is learning to be Held. We are learning together, he and I, how to best battle the weary days, the long days. We are learning together, he and I, how to be joyful together on the days when he does well. He is reminding me to slow down, because he doesn't like going to fast. 

It is a learning curve. We don't always get it right, he and I. Sometimes Dean is so stiff that I am literally coaxing his body to allow me to pick him up. Sometimes I am so bent on being strong that God has to remind me that His arms are here, and that He is stronger than me and that's WHY I can be weak. 

Learn to be Held. 

Learn to allow Him to Hold you.  

Chapter Fourteen: "Hosanna"

We decided today to get up early and drive home and be with our Church family.

We decided this last week, what we didn't know is that we would be celebrating.

After forty long days in intensive care, forty days of worry, of highs and lows, of tears and prayers, and phone call checks in the middle of the night. After one heart surgery, one heart cath procedure, we are out of intensive care.

Blair and I decided to take Ellie to the zoo Saturday (pictures to come, she loved the panda bears) and while we were there we found out they put the order into move him. This Mama cried. Right there by the panda bears. We went home when it started to rain, Ellie and I napped, when I woke up, they called us and told us they had moved him.

I can't begin to describe the joy I felt.

We got to celebrate with our church family. People who love us and have been praying for us. People who have supported us with financial needs, groceries, offers to clean our house, offers to visit us here in DC, to get our mail, to watch Ellie, and always always always they are praying. Always.

I completely forgot that it is Palm Sunday. Time seems to slip from me easily. So here we are with our church family, celebrating Dean's step down, celebrating the coming of the King, singing Hosanna.

I love that word, Hosanna. I love Palm Sunday. The celebration, the story, the start. Hosanna my heart sings, blessed is he who comes in the name of the Lord! Hosanna.

Last year during this time, I started a poem? Prose? Thought? Thought is probably the best word. As we sang the song Hosanna, as we welcomed the king, I asked my heart, do you truly welcome Him in?

We sing Hosanna often, not just during the Easter season. We sing it on a Sunday, we open our hearts, we are close to the Lord that day. How often though (And I am guilty of this) do we sing Hosanna on a Sunday morning and then go on with our lives as though we weren't just welcoming in the King?

Hosanna becomes just another word, we don't take into our hearts and live it.

I am learning how to live it though.
,
Hosanna, my heart sings, on those hard days when I feel like we won't make it through this.
Hosanna, my heart sings, when we find out Dean has had a great day.
Hosanna, my heart sings, when we find out Dean has NOT had a great day.
Hosanna, my heart sings, when I am pumping for the seventh time today.
Hosanna, my heart sings, when my husband makes a mistake and gets a ticket.
Hosanna, my heart sings, when I see Dean throw up from drug withdrawal.
Hosanna, my heart sings, when I get to hold him, wires and all.
Hosanna, my heart sings, when I can put my hand to his little chest and feel his beautifully patched together heart. The one that shouldn't be working. The one that did need and will need, so much help...

Hosanna, Blessed is He who comes in the name of the Lord.
Welcome to the King of Kings.

This is not a Sunday morning ministration, but an anthem for the daily. I am learning to welcome the King, not just one Sunday in a year, but every day. In every way. Terrible things happen to people I love who I care for. Hard things that I want to carry for them, as I'm sure people wish they could have carried some of this for us. The fact remains that He. Is. King.

And as my pastor reminded me today, He Wins.
Over sickness and death, He Wins.
Over addiction and pain, He Wins.
Over bitterness and jealousy, He Wins.
Over loss and strife, He wins.

Live Hosanna with me friends.
Welcome the King into your life, not just once in a year, but every day.
Sing it in your heart. Cling to it in the darkness and the ashes.

I am greeting these next days with Joy in my heart that is unimaginable, with the hope that we are going to get to take Little Dean home. I see a light at the end of this tunnel...knowing that home doesn't mean the end of his medical need, but that it is a chance for me to snuggle him and Ellie close. That we will be a family of four, all together...something my very soul longs for.

My heart sings Hosanna.
It welcomes the King.
Every day.

Chapter Thirteen: "Broken Hallelujah"

Years ago, when my best friend Danielle turned...something, I don't remember, her mom threw a surprise party for her. It was awesome. We were young and silly and had no idea what life was going to be like. Mary (Danielle's Mom.../my mom, let's be honest) created a Jeopardy game about Danielle's life. One of the categories was Friends and in it, there was the answer "Danielle thinks this person is the scariest person in the world to wake up in the morning." The question? "Who is Maddie Carrigan?" 

It is a well known fact I hate mornings. I'm just not good at it. If I can sleep five more minutes I will. If that five more minutes turns into thirty and I decide to shower later/tomorrow, so be it. I like my sleep. 

And I'm not THAT bad (Mary Flannery...). I've know people who are way scarier to wake up. I love them, because they make look tame. 

When Ellie was born, the sleep thing went out the window. Babies tend to do that. They have their own schedule and have been thrown into a great big world. It's hard for those little guys. People talk about sleep schedules and routines...there is no routine when you have a newborn. Life just is at that point. The craziest times, for me, was from 12 Am to about 8 Am. That was when I became a Mombie. 

Now that we have two kids, not much is the different. 

Dean is still in intensive care, and I am still pumping 7-12 times in 24 hours. I wake up at least three times at night, go to sleep after Blair, and wake up with him. I take an hour to two hour naps, sometimes I get four, and then I'm up again. 

My son may not be sleeping in the room with us, but my body sure didn't get that memo. 

For whatever reason, when I'm pumping, when I'm up at three and six and nine, these early morning and super late night pumping sessions, is when my heart wants to balk at all this. 

That's when I have to catch thoughts like "this isn't fair" and "why God" and "we don't deserve this" and "my son didn't deserve this" and "I can't do this anymore" and those times are when I get the most angry about what's happening. 

Because I am angry. And scared. And tired. And weary. And just going going going, because if I stop to think about things for TOO long, if it is TOO quiet, my heart and my head decide to go their own way. Their way is dangerous. 

This morning around 7:20 (too early for me...don't judge...) here I was forcing myself to pump, struggling to keep my eyes open...balking against what is happening. Mad that I'm up, mad that my son can't nurse, mad that he's still in intensive care, mad that they have to fortify my milk with formula, just...mad. Mad and tired. And weary. 

And then...

Our window is open. I can hear birds begin to wake. And out that window I can see the horizon, I can see the colors begin to slowly come into the sky. The trees are silhouetted against the colors, vibrant and beautiful. Here comes this huge yellow orange sun, popping up like it does every morning. The warmest light comes into the room and everything is just glowing. 

I took a deep breath. 

And I poured out praise. A broken Hallelujah. A new day, new mercies. Fresh. Warm. 

Loved. 

I have my moments, I tell people all the time, I have my moments. Today was a moment. And with the rising of the sun, I renewed my heart and mind and came back to where I need to be, the foot of the cross. I reminded myself God owes me no explanations for His ways. That He told me life wouldn't be fair. That He's walking with me, with us, that there is purpose in this. Regardless of what I think and feel. Regardless of my moments.

Just like I feel I have nothing to offer others, I feel that I don't have anything to offer God. I stop though, because when did God ask anything of me except that I love and trust Him? My praise most days feels broken and disjointed, marred in tears and sleepy eyes. My Hallelujah is broken. 

And that's enough. 

Just...the sun came up today. It did. Life didn't stop, though I want it to a lot. I want this to stop. I want to make it better for my baby. I want to be home with Ellie and Blair and our baby boy. I want to have pictures of Ellie kissing her brother. He is almost six weeks old and my daughter has not met her brother. My heart balks at that. All these things that take my praise that I would offer and make it into something broken and scarred. 

They make it into something beautiful. 

When all you have is a Broken Hallelujah, that's all God wants. 

I'm thankful that the sun came up this morning, thankful for the Promise of love and hope and endurance through this. 

Chapter Twelve: "There is Glory and a Story"

Tonight I started writing this in my head while I went down to get our laundry from the dryer. I talk to myself when I do this. I probably sound crazy. Most of the time what I talk/write to myself never even gets written out. I usually end up taking a whole different angle or don't even write what I was thinking about.

So what have I been thinking about?

This is long. This whole healing process is long. My son takes a long time to heal. Blair and I joke that he will be our pokey child. I'll tell Ellie and Dean to get their shoes on and Ellie will be in the car honking the horn ready to go while my son sits and cries because he doesn't know if he wants to put his left show on or his right shoe on first. He sets his own pace and his pace isn't quick enough for me.

I feel like I am chomping at the bit...and at the same time, I feel so guilty about stuff.

I feel guilty that I don't call the nurse twenty times in a night, especially when I get up to pump.
I feel guilty for thinking about quitting pumping, I hate it, I hate it so much, but know that this is best for my baby boy. So I keep going...
I feel guilty when I don't go at 8 AM every morning to go see him.
I feel guilty for forgetting the medications he is on and all the things they have done for him.
I feel guilty that I don't ask more questions.
I feel guilty that I don't stand by his bed for the hours that I am at the hospital with him.
I feel guilty when he cries while I pump, that I am not there to calm him and the nurse has to.

You can tell me I shouldn't feel guilty, but I still will. I will still have to work through those feelings. Slowly offering them up to the Lord. This is all I can do.

I don't have much to offer right now. I don't have time to help others, I rarely respond to people who I know care deeply, I feel like I'm sucking at keeping people informed. I'm not talking about the general public, I'm talking about family...at the same time, I feel like I text and tell them too much and they get annoyed with me...

We are in a terrible state of limbo right now. Caught between he's not just out of surgery and he's not out of Critical Care yet. It's an awful place to be. Some days he does well, some days he has small set backs, some days the changes they make for him are so small I have to slow them down to make sure I caught what they are doing. It's infuriating. Then I have to relay those things to Blair, because that amazing man is still working 40 hours a week, and he counts on me to tell him what our boy is doing. Sometimes I forget. I feel terrible when he comes and the nurses tell him something that is new for him but old for me. It embarrasses me.

I go through a wide range of emotions right now. Crazy things throw me off. Finding out they would fortify my milk with formula threw me into a funk last week. (That's a whole post in and of itself...) I meet a million doctors a week it feels like, all of them telling me new things about my son. Like they are watching his bilirubin levels because he was getting jaundiced. Found that out today. Or that he is STILL going through withdrawal from his medications. He was sedated for so long...so very long. He finally gets to be a "normal" baby now and they are trying to help him "catch" up.

Information. Overload.

I have to be so careful about my heart and my head colliding. I have to daily come to Jesus and lay down these things. Because this is hard. Especially because this is hard.

We have, in general, come to believe that if something hurts or that because its hard that we have this excuse to sin. That because this isn't fair, because we are sleep deprived, or someone we love hurts that all the sudden we can say or do or think what we want.

Can we though?

My son hurting is not an excuse to be angry at God. It is not an excuse to be mean to Blair or Ellie or my family or anyone for that matter. It is not an excuse to forget that my friends are hurting and might need a listening ear as well. It is not an excuse to withdrawal and let my Bible collect dust. It's not an excuse to be a jerk.

I am very careful about where my heart is when I talk to people about what we are going through. While it is hard and scary and there is so so so much unknown, sin is still sin. Worry is still sin. Self-deprecation is still sin. Hurtful words are still sin. Complaining is still sin.

It's not that I'm not talking about how I'm feeling (hello, I have a blog, I tell you guys a lot of stuff) I'm just trying to be careful about where my heart is when I do. And if I haven't talked to God about something, shouldn't He be who hears my feelings first?

Look I talk to God at three in the morning when I'm Zombie pumping next to my semi-asleep husband. I let Him know how much I'd rather be nursing my infant son and how much this hurts (physically now, I'm not even talking about the emotional part of it)(also, yes, I talk about pumping, because exclusive pumping is new for me and different and I still wish I were nursing my baby boy). I talk to God about how I hate that I'm not going back to work, but know how unfair it would be to my boss and my co-workers and mom. I talk to God about how I can't even think about next week...Blair tried to talk to me about me working from home and I almost lost it. Next month feels so far away and unattainable. I'm glad Blair can think about those things, one of us needs to.

There is a balance that I am working on finding. Between sounding like I'm complaining and simply explaining what is going on in my head and heart.

My son's heart surgery and recovery is not an excuse to sin. It is not an excuse to worry or forget God's promises.

I repeat 2 Corinthians 4:17 to myself like an anthem right now, "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison." I mentioned that verse the last time I wrote I think, and here it is again. I write it everywhere and repeat it. Reminding myself that there is Glory at the end of this epic battle my son is fighting. There is Glory and a story and love and grace and the opportunity to offer hope to others.

There is no pain or hurt big enough in this world that God can't handle our lives. So using it as an excuse to sin is a cop-out. I'm not ok with that. I'm not ok with just getting by and saying "Oh it's ok right now because things are hard." Things will always be hard in someway.

I want my life to mean so much more. I want to not just get through this, but to overcome it. I want to be a Conqueror! I want to be MORE than a Conqueror! Gosh darn it...I've gone through too many "hard" things and used them as an excuse to be a jerk. In loads of ways. And especially to my Heavenly Father.

And I love Him to much to do that. And I love my kids and my husband too much to do that. I want my son and daughter to know that no matter how they are hurting that sin is sin. But it doesn't have to be that way. We don't have to balk against the things this world throws at us, we just have to accept that Christ is there to see us through.

If I want them to learn that, it starts with me.
So this is me. Not using my hurt and pain as an excuse.
So this is me. Accepting that Christ will see us through this.

Are you?

Chapter Eleven: "The Hardest Thing"

Want to hear something hysterical?

When I was 15 almost 16, I thought the hardest thing I would ever have to do was to move from where my family lives in Virginia Beach to where we live now. I thought I wouldn't survive it. I thought I would hate my parents forever.

When I was 19 going on 20, I thought that the hardest thing that I would ever have to do was to get through college and figure out what I wanted to do with my life. I thought I wouldn't ever know "who" I was and I spent a lot of time figuring that out, and not always in the best ways.

When I was 22, I thought the hardest thing I would ever have to do was find a man who would want me after all the crap I had done. I didn't think it was possible for a man to love me. I made fun of those who tried. I gave up when I realized Blair actually did love me.

When I was 22, I thought that the hardest thing I would ever have to go through was losing a baby at nine weeks. I thought my heart would irrevocably break and I wouldn't ever be able to function again. I spent months crying and asking Why, and forgetting God's control. I was terrified when I found out we were pregnant with Ellie, convinced that if "it" would happen again, I'd never recover.

When I was 23, I thought the hardest thing I would ever have to do was to survive the birth of my daughter. I thought that I would never feel like me again and thought that Blair and I would never be "us" again.

When I was 24, I thought the hardest thing I would ever go through was a second miscarriage. This one I would push down, hide my feelings, run away so that I didn't have to feel. I felt jaded, cheated...this had already happened once...I couldn't wrap my brain around the fact that it was happening again.

Now. Here I am at 25, with a month old son still in the hospital after he had open heart surgery.

Why is this hysterical?

Because each of those things were the hardest things when I was going through them. Each thing stretched me and pushed me and amazingly, I got through EACH thing. Regardless of that fact that I thought I never would. Looking back, I realize how short term each of those things were. How temporary. How amazing. How God used those things to shape me into be more like Christ. How I grew.

"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison". 

-2 Corinthians 4:17

The days have dragged on for us. Each one blending into the next. I cannot believe we've been here for a month. I cannot believe my son is a month old. I keep thinking that the "hard" parts are over only to get slammed with another hurdle we have to overcome. Another hurdle my son has to overcome. Some days, man does this get to me. 

Monday was so rough for me. I'm not sure where my heart was or my head were, but it wasn't right. It certainly wasn't focused on the Lord. I felt defeated, scared, frustrated, and weary. I crawled into my husbands arms and he held me while I cried, while I told him over and over again, "I just wish we were all home, I just feel useless, I just want to take this from our son." 

In those deep secret moments it is hard to remember that this is a light momentary affliction. It is hard to remember that one day, something else will come into our lives and I will think, "This is the hardest thing I've ever gone through." It is hard to remember that one day I will look back on this and see God's hand through it all, not that I'm not seeing it now. 

In the midst of the storms though, we often forget that sun light ever existed. 

It does though. 

Already I am seeing God shape me. Already I am seeing God use our son's life to touch others. Already I am growing from this experience, in ways I never thought possible. God's glory is profound and will not be stopped. I see it. 

Seeing it and feeling it though are two different things. 

I am fighting every day to make sure that my heart and head collide, and when they do, I make sure that the Truth is there. I have to or else I'd go mad...

When I think of how I felt that summer I was 15...I laugh at my younger self. How silly...to think moving would break me. I want to tell my fifteen year old self, "Just wait, ten years from now you will watch your child struggle to hold onto his very life...shut up and move. You're fine." At the same time...for me, then, it was the hardest thing I've done. I needed to go through that to know how to process my emotions. Do you know what I did then, to help myself cope? I wrote, painted, and colored. 

Do you know what I am doing now, to help myself cope? I am writing, painting, and coloring. (Seriously...I hand out coloring pages to his nurses all the time...they think I'm a genius and I let them think that...) 

My point is...life is hard. We go through things that we think we will never make it through. We struggle and cry and rage and have good days and bad days. We think our hearts will break and never be whole again. We think that we have nothing left to give. We think that we are at the end of our strength. 

But...we do make it through. We do survive. We do love again. We are made Whole. We do have more strength than we could ever imagine. 

On the worst days here, I repeat that verse to myself. Light. Momentary. 

The Glory that this little family will see at the end of this...all I can hope and pray is that we bring people closer to Christ. We share our struggles and joys and I share these thoughts and emotions. Don't miss what I'm saying. Don't miss Who is getting me through this. Don't miss Who is healing our son. 

This is hard. As of right now, it's the hardest thing I've ever gone through. 

So I can't help but be on the edge of my seat to see what God will ask of me next...

I can't help but wonder...will I ever think back on this time and think "Man, that was nothing compared to this!" 

Maybe. Maybe not. 

All I know is that I wasn't promised that it would ever be easy, only that He would walk with me through it. I take a lot of comfort in that. 

Chapter Ten: "Dear HLHS Pregnant Mom..."

Dear HLHS Pregnant Mom,

I've been thinking about you a lot.

You are where I was in October of 2015 when the tech told me to wait after doing another scan of our baby. I was blindsided. Were you? When they called me into the office to talk I had absolutely no idea that there was anything wrong. I didn't think there would be.

Maybe you just found out. Maybe you were just at the office hearing "your child has something wrong with their heart". Maybe you have had some time to contemplate, to process, to cry. Maybe you have no idea what to expect and you still go to bed terrified that your precious babies heart will decide to quit. Maybe you are in the "month"...waiting for labor to start, or to go in to be induced, and maybe you are so excited that you are pregnant one more day. That for one more day your baby is safe.

I want you to know: this sucks. It is big and scary. It time consuming. It heart breaking. It is hard.

I want you to know: this is beautiful. It is precious. It is a miracle.

I wish I could tell you what to expect. I wish I could tell you what its like when your baby is born and you sob, because you get precious few minutes before he or she is whisked away to be examined. I wish I could tell you how it feels to be in the recovery ward, listening to other babies cry, silent tears running down your face because your baby is in another hospital.

I wish I could tell you what it's like to have to trust a surgeon to operate on your babies walnut sized heart. I wish I could describe to you how anxious you will be while your baby is in surgery.

I wish I could warn you what your baby will look like after surgery...

I can tell you that it will be incredibly hard. That you will feel your Mama heart stretch and break every day afterwards as you trust doctors and nurses with the most amazing baby. You will cry, Mama, your arms will fall asleep Mama, you will ache and be tired Mama.

Your babies life, your babies story, will be Beautiful Mama, unique and precious.

Look, these surgeries, yes, hard, but oh...oh they give you time Mama, so much more time. Nine months, plus. My son is going to be four weeks old soon...four weeks that without this we wouldn't have had...how amazing. Embrace the beauty of how broken our babies are and you will learn to love them in ways you never thought possible.

If you love the same God I love Mama, know that you will grow to love Him more. You will learn how to pray silently through tears. You will learn to feel His presence as you watch nurses and doctors hover over your child's open chest, busy in the room, while you sit quietly. You will learn how to be weaker than you ever thought and in that moment of weakness, when you think you can't even be in the room with this baby who you love, who doesn't even look like your baby, you will learn what His strength can do. And you will stay there Mama. You will stay.

Everyday you will wake up and thank God for another day. Each set back will make you feel defeated, each step forward will make your heart swell, and all the times in between you will learn how to wait. And you will wait well.

Mama you are not alone. Take all these big feelings and find ways to tell other people. Share with the Doctors and nurses and janitors how you feel. Write about it. Draw about it. Call your Mama, cry with her. Text your friends, email your Pastors, draw from their strength as well...everyone wants so badly to share this burden. Let them. Share with them. You don't have to walk this alone.

You will handle things differently than I will, Mama. We are not all meant to be the same. Figure out what works for you. Don't compare. My child's story is not meant to be your story. Maybe my son will be in recovery for months, maybe yours only for weeks (I pray this is so for you).

Wrap yourself in these words. Clothe yourself with Strength and Dignity. Bring loads of tissues, you will cry. Bring loads of chap stick, hospitals have dry air. Bring tape, people will send you cards and notes to encourage you. Bring lotion, you will wash your hands more than you ever thought possible. Bring Hope, cling to it in the darkest times.

Oh Mama who is still pregnant with your HLHS baby, I see you. I know you. I was you. I am you. I am still in the middle of this battle, still fighting, missing my son. I think about you a lot, think about things I wish I had known, think of what I would tell you.

Don't plan so much. The most I know is the next 24 hours and each 24 hours is precious to me. May the next 24 be precious to you. May you be encouraged...I hope you are. I hope you know I am making it through something I thought I would never get through.

I hope you know, you and your baby, and your family, those who love you, are loved and held.

I know you know that I think about you. I think about you a lot...and I am praying for you, whoever you may be.

With all my love and hope,
An HLHS Mom

Chapter Nine: "This Freaking Sucks"

It has been approximately 27 days since I got to properly hold my son.

Twenty. Seven. Days.

Maybe it's because I'm pretty sure I have a sinus infection and I'm cranky, but emotionally, today, I feel kinda shot to hell.

Just saying.

Most days I do well. Most days are ok. I've really made peace with the fact that if not for these surgeries, if not for this surgery, my infant son would have died. This fact never makes this suck any less.

I understand that people love us and are praying. I understand that people want to encourage us/me and tell us to be strong. I understand and I am thankful. Some days though, my favorite people are the ones who are like "Dude, your baby is sick, that freaking sucks."

Yeah, it does.

I can't describe to you how this feels, the best way to say it is that I miss my son. Even though he's in the room with me. I'm not acting like he's already dead, please, don't think that. He's not. He's alive he's alive he's alive. Every day is a miracle.

I'm missing out on his newborn stage. I'm missing out on sleepless nights, the grossest poops known to all man kind, and oh man, I'm missing out on nursing him. Those are some crazy small silly things but I miss them. I miss them so much. Even though he is so near me, he still feels so far away, and I miss him.

I have been fighting not to be jealous. I know so many other new babies. I know so many "new" mommies and my heart breaks when I see their pictures and their posts. Even when I was pregnant I would have trouble holding my friends babies...I knew that this was not the story we would have with our boy. No, I don't think where we are now makes me less of a parent (or at least I remind myself that it doesn't) but it hurts like crazy. I want to be snuggled up at home with my Deano and my Ellie. I want to be adjusting to a life of four instead of three. Right now I feel like my family is spread out, we're thin. Stretched. Will we be stronger because of this? Oh yes. Does the stretching out hurt? Like hell.

I am strong. I will continue to be strong. My strength though does not diminish the fact that this is just so rough.

He cries now. You can watch him screw up his little face, it gets all red, and he opens his mouth...but there is still no sound. He still doesn't make sounds. It has been 27 days since I heard my son cry. When he does again, I know the tears will flow that day for me as well. I understand that the silence means he's getting better (and he is!) but I miss his noises. It is a terrifying thing to see him try to cry...his chest heaving.

The worst part? When he cries, I can't pick him up. I pat his bottom and rub his head and tell him I'm here and that I won't leave him and I sing to him and I tell him stories about his Sissy and my arm falls asleep and nothing else in the world matters in those moments. I just want to make it better for him.

I just want to take this from him.

If I could, I would. I don't care that he won't remember it. I don't care that he won't remember the pain. I don't care because right now I know he is in pain and he's just a little guy...he's just my little guy...

Look this sucks ok? I have a lot of Faith and Trust and Hope, and I know God is here every single minute of every single day and guess what? It still freaking sucks. God knows that.

And maybe, today, all these emotions are springing from sickness and a splitting headache, but I don't think it matters. While there is much hope and much joy to be found in these days of waiting with my son, there's also a lot of just...crappy days.

God said there would be.

So yeah.

This freaking sucks.