Only Love

Motherhood finds me in the strangest places.

The cries of a son who doesn't sleep well. Groans as I force myself out of my bed to his crib. He stands there now and the tears fall from his face and the exhaustion is so real and potent that the compassion I should feel is evaporated. I hold him, and rock him, remind him that I am indeed there for him.

At least once a night now I hear the smallest pitter patter of feet, the slightest creaking of my door. My daughter crawls into my bed with her baby elephant and her green worn blanket. She snuggles into my arms and I can feel her breathing get calmer, slower. I close my eyes and turn my face away from her wispy hair. I can feel her become more and more peaceful. Until she crawls back into her bed, snuggled up with her animals, quiet, still.

I alternate between hating and loving these routines. Smiling at the power I have to help calm their little worlds. Crying in anguish over the messes and lack of sleep. The deep desire for everything to run smoothly, to have time to do EVERY THING I want to do. The list in my head grows and grows, constantly present. It is often put on pause.

Little hands pull at my pants legs. Little feet run back and forth in our tiny house between her room and the kitchen. I encourage the running. She has so. much. energy. Selfishness creeps into my heart, I want to sit and create. I want to make messes on paper with colors and shapes. I want to practice more and more. I want studio time. I long for quiet. I love for time alone. Joy is stolen by selfish desire.

My children Need Me. Constantly Need Me. My arms scoop them up when they are hurt, my kisses ease their pain. In the deepest black of night they long for me and only me.

There is a power in that. Quiet and strong. Of all the people in the world, and people who truly love them, my children long for and need...me.

As inadequate and selfish as I am, they need me. All my insecurities and hurts and failings fade when I hold them in the dead of night. I rock my son, his head tucked under my chin and I feel important. I snuggle my daughter close to me, my hand on her chest, her heart beating slowing from its erratic pace and I know I am loved.

Motherhood has taught me more than I will ever be able to explain. And yes, I write about it a lot. Why wouldn't I? We all have our jobs and passions. I am passionate about the job I have been given. These hard days with my children. These beautiful moments where they teach me about the self I want to be.

They don't know what time it is, they don't know about financial stresses, they don't know that I am completely and utterly exhausted two thirds of the time. They don't know what time we have to get up, they don't know what appointments we have. They only know Love.

And that I know I can give freely.

After: In The Flames

Today a rare and exciting thing happened. My kids went to their beds for their naps and I didn't feel the soul crushing exhaustion that I usually do. All the sudden there were multiple things that I could do. The possibilities seem endless.

It's been a while since I've been able to write. It happens. I'm a mom, I get busy. Really busy. Even now I feel guilty taking these moments to write when I look to my right and see the messes that are waiting for me to pick them up. And I hear the dishes calling my name, reminding me that there are still things that need to be done.

I wanted to write when Dean turned one. It was an exciting month for us, February was. We did a lot of things, saw a lot of fantastic people and celebrated with cake (several times) our little dude's birthday. There were presents and cake smashes and staying up way too late and pictures and it was great. It was really everything that I wanted for his birthday.

However I am experiencing this strange conundrum now. It's called After.

After a year of fighting and doctors and shots and medications and emergency air lifts. After a year of saying good bye to Ellie and being away from Blair and nurses. After a year of diagnosis and trips and asking, constantly, for help. After all this, what's left?

We're still a family, but we're not a family on the verge anymore. We aren't constantly worried he's going to go into heart failure (ok, fine, I AM not constantly worried he will go into heart failure). All the sudden the smoke is clearing, the fog is lifting and we get to do something phenomenal.

We get to simply be a family.

And oh man...it's a little hard.

All the sudden we can start to do things, we can go back to Church, we can go to the park and the grocery store. We're going on our first real family vacation. We get to worry about normal bills and cars and doing our taxes. We get to focus on disciplining Ellie and turning off the TV more. We get to paint and talk about our dreams. We made actual real life goals for the year.

All the sudden I'm working on learning ho to be a "normal" mom who doesn't live in a hospital. Who doesn't have to speak medical jargon. Who has time during the day. Who can sign up to do things with the Women's Ministry at Church. Who is learning how to incorporate the Lord into every aspect of my life.

It is not easy though for me. I'm having a hard time talking to my husband. I'm having a hard time remembering that I can go out and DO things. I am having a hard time juggling housework and quiet time and time with my kids, though I promise you, I know which is more important. I all the sudden can leave my son with people other than my parents or my husband. His godmother watched them on our anniversary so we could go out (WE WENT BOWLING AND IT WAS AWESOME) and I wasn't worried I'd get a "call" the whole time we were out. Ok. Maybe I was, but that's because I'm convinced this kid can't survive without me.

Truth is though that he is can. He is tough and smart and quickly learning what NO means. And this requires me to redefine who I am as a wife, mother, sister, daughter, and friend.

I'm dealing with a lot of other things as well. Things I'm not sure I have the courage to write about yet. Things that just are bringing me more and more to my knees. I feel like I have been so "strong" for so long that all the sudden... I can relax ever so slightly. My body knows this, but my mind is having trouble following that line of thinking.

We are still working on lots of things with Dean, we probably always will be. But we're in the sweet spot now, a sweet spot that seems to be TOO sweet to me.

I am still praying for the courage to write about all aspects of my life. I've always been proud of myself for being vulnerable and all the sudden God has taken that pride and shut it down and put me to the flames. When you're put to the flames, you have two choices, let it burn you or refine you.

I am praying that it refines me.

Thanks for tuning in my friends. It felt nice to sit and write this out today.

Take Four

I have officially started and deleted three blog posts, maybe the fourth one will break me out of the weirdness I've been in. Writers block has me hard and I'm not always clear on what I want to write about or how to make it cohesive.

I worry that people will get tired of hearing what I have to say. There are a million and one blogs out there. There are a million and one writers, most are far better than I am. Most are better at conveying their thoughts than I can ever hope to be.

I am afraid that people will find my life boring. I'm a mom now. What's more, I'm a mom under house arrest until cold/flu/RSV season is over. Very rarely do I leave the house. Very rarely do we get to go anywhere together as a family. We don't even get to go grocery shopping together. I take Dean to his appointments or possibly Grammy and Grumpy's house when I'm really feeling lonely. I cancel plans with people who tell me they have colds in the hopes that we never bring it into this house. Blair goes to work, he comes home.

I stick so closely to our routine and schedule because my children (bless them) have started taking naps at the same time. And Lord Help me, that hour of quiet is LIFE to me. LIFE. It's what gets me through the day. If we make it through nap time I can make it until bed time and God help us all if the routine is thrown off. And this is all I have to write about right now.

Nap time and quiet time, kids TV shows and routines. I change diapers for a living and I clean. I constantly clean. Because if I do not clean the house will erupt and chaos will ensue and DEATH DESPAIR DESTRUCTION. Most of the time I realize what a blessing this is. My baby boy will be a year old soon. Whoah. The weight of that does not escape me.

Mombie though is a real thing. I find myself putting off showers (because I'm not going anywhere and honestly, I'd rather sleep). I either ignore people or I talk too much and end up complaining. My friends don't ask me advice that much any more because I have "so much on my plate already".

My husband is bi polar and while I don't talk about that much on my blog, it affects me in huge ways. He's been great about taking his medication, but the weather and the long hours and being couped up at home and stress all play into his moods. Some days I don't know who I am waking up to. Some days I don't know who will be coming home from work.

And I am tired.

I am tired of bills and appointments and blood work. I am tired of calling and emailing a million times to get his medications straightened out. I'm tired of the crippling guilt I feel when he goes a day or a week without one of his medications. I am tired of hearing of another CHD Death.

Two babies. Two babies died this month and everyone is arguing over people they will likely never meet. People being mean and petty and name calling and I'm wondering how long my son will live. Wondering if he will be next. Wondering if his heart will last. We've made it a year. A whole glorious amazing scary tough hard ridiculous year. I've done things I never imagined I would have to do and I cannot fathom that we have had him almost a full a year. 365 Days. Wow. It gives me chills to write that.

The Heart Community is amazing. You will find some of the most amazing people there. I've made some crazy amazing friendships through support groups and messages. We are friends. We are family. And when one of us in the heart community hurts, we all hurt.

I follow stories of babies who are fighting, who are on ECMO, who need miracles. I follow a young man who is on Hospice and I follow babies who have had heart transplants. I hope for them. I root for them. I pray for them. I hurt for them.

There is a lot of life in these groups. Success stories and encouragement. But there is Death as well. And I live with that. I have to. I embrace it. I have to. Because Death is part of Life and I hold it close to my chest and whisper "please not us, please not us"...knowing I have little control over it.

I've been hesitant to write about this. About the Death that I see. People do not want to know about the death. They do not want to know that it could be my son. They want to think the best and I'm so glad that they do because I'm cautious and scared still. Learning how to live life fully while watching the health of your child is a hard thing.

When my friends have Heart Caths or procedures...I'm like a mad woman checking for updates. My parents ask about the different kids and stories now. They pray for them too. And when they come out of these procedures and operations I'm elated. I am joyous. Because if they keep making it we can keep making it.

I am tired.

A bone weary tired that most of the time I can forget. I have been blessed with space and time to be able to work through my feelings, to be able to draw and create, to talk to people. I workout and I grocery shop by myself (probably because we can't as a family haha). I have friends I text and talk to, I know I'm not alone.

But on the worst days...it feels like we're in a life boat and we are very very far from the shore. Very far indeed. Hematology appointments get me every time. They throw me into this funke. They stuck him five times today. Five Times. I held his legs and arms down while he turned red and tears ran down his face. And I have to pretend he's not my kid. I have to pretend that it's ok. I have to pretend that this is what every parent does. I have to pretend that he won't remember any of this. I have to pretend like it will be over and we won't have to go back next month. I have to pretend he's not my son or I think I would go mad.

Even in the middle of this I had to stop writing and go help Blair while Dean vomited.

I hate CHD's. I hate HLHS. I hate that I see so many parents say good bye to babies. I hate that I watch people struggle. I hate watching techs dig around in my sons arm to get the blood to flow. I hate that babies need heart transplants. I hate it.

And every now and again I need to say how much I hate it. How much I hate all of this. How much I feel was stolen from us knowing that it was so much could be given to us. I hate how much it stretched me out of my bubble, how it it ruined things for me (I get so weird about peoples 20 week scans...you see gender...I see organs). I hate how much it made Blair and I argue, how stressed we both were (and really, are). I hate how much we had to be carried by other people. How often we had to and have to ask for help.

It all makes me a better person, but that doesn't mean the growth didn't hurt.

I am tired.

Tired of seeing Death so often. Tired of seeing hurting babies so often. Tired of people being so petty about the stupidest things. And physically...y'all...I could go for a nice. Long. Nap.

Chapter Infinity

Being a mom, no matter what "type" of Mom you are, means you are always On. There is no off switch. There is no Me Time, there is no down time.

When we came home this last time I was so ready to be home. I was ready and excited and had it in my head that we could now do all the things. We could go everywhere and I could finally hang out with people and life would be just grand.

And I was slapped in the face with the Reality of it.

Dean is not the greatest at going out. He likes being home (who can blame him) and he likes things a certain way. The only way I can get him to nurse is if it's quiet and no one makes any loud noises and the moon is aligned with the Earth (maybe that last part is an exaggeration). We have a strict med schedule and an injection twice a day. We have two more appointments this month. And there are still red flag things that could possibly land us back in the hospital.

I guess in my head we would come home and everything would be great and I could hang out with friends and go to all these wonderful things people had invited me to and it would be fantastic, right? I would strap him onto me and we would go for walks with Ellie in the park and go throw rocks in the creek and get out of the house. I found out that taking him out in the heat is not so great for him and that if its windy the wind makes him stop breathing (talk about a moment of panic..). So we mostly stay indoors where it's cool and quiet and not windy. And Ellie hates it.

We did pretty good most of the week and then I don't know...I don't know. I just wanted to...I don't know...quit today. I wake up every morning by 5:50 every morning and most of the time Dean does not go back to sleep after his injection. And it sucks. I'm not a morning person. I wish I could explain to Dean that I would be a much better mommy if he let me sleep just like an hour more. I pray for patience pretty much every morning. And by the time he does take another good nap, Ellie is already awake and making noise and being an awesomely behaved two year old. And by awesomely I mean she's two. All hell breaks lose if I give her the wrong sippy cup/drink.

The stress of having him home finally caught up to me for real though yesterday. I saw some discoloration in his gtube and freaked. the. crap. out. I called a friend who came right away and got Ellie because I was convinced he was bleeding internally from his blood thinner. I was scared out of my mind that I would call and we would end up back in the hospital for another three weeks and my heart just sank, because mentally, I am not ready for that. I called the powers that be in DC and turns out, everything was ok, crisis averted, move on with life. Huzzah. Only to wake up this morning and go to give him a medication and realize I've been giving him double that medicine for a week. Heaps of Mom Guilt.

I am so worn. I am so tired. I am dealing with about five million different emotions and trying to navigate the fact that I have this tiny human with special medical needs. And a two year old. And I want to make sure that, like, I eat and shower. And I want to make sure we have a house that is almost maybe kinda livable since I'm home all the time now.

Expectations. I was texting my best friend and I said something to her that I didn't know I needed to say to myself. I said "we put all these expectations on ourselves to do better, to be more when Christ specifically told us that DON'T have to do those things." Where does this incredibly high and unattainable expectation that I should be able to do everything  very day come from? Why is it not enough that Dean is home and healthy? Why is it not enough that I'm with Ellie now? Why do I feel the need to clean my house before any person steps into it, or apologize any time some unwritten standard is not met?

Motherhood man, it's not for the weak. Which is why God made women that way He did. I think He knew we'd have these crazy emotions about how we were always supposed to be doing better and He says "Hey, look, Chill." That part in the Bible about not worrying? I'm pretty sure He wrote that about me. He was like "Let's put this part here for Madalynn Carrigan/One day Jaques". Because He knows that some nights I have trouble sleeping because I'm afraid my kids will stop breathing.

Motherhood man, you are always on. And you have to make a lot of choices.

Today my choices entailed letting the dishes pile up and the toddler make messes so that I could semi-nap on the couch. Today the choices entailed not getting dressed until four in the afternoon and painting while my kids slept instead of folding laundry. Today my choices entailed sitting down to write before pretending to clean my kitchen. I mean hey, we have to stay up until at least 9:45 each night for meds and sometimes that's hard, because hey, Blair and I are exhausted. Is there a word for more than exhausted? I'm not sure. But if there was, it'd be used to describe us.

Motherhood man. It's Chapter Infinity. Because it just doesn't end.

Not that I would ever want it to. I love my kids. I love being a Mom. Some days, I rock it and I'm like "Yeah, we all showered, we all ate, the dishes got done, and the house didn't blow up AND I worked out (that happened one day this week for real)." And some days I'm on the opposite side of things where we watch crap tons of TV and Ellie and I eat every meal on the couch. And both days are blessings. Both days are ok. Some days though...it takes me a little longer to see the blessing.

Part Two: Chapter Four: "Dishes"

I will try to write these thoughts as quickly as I can. I don't want to stop writing about what we are going through, though now it feels more mundane than the scary stuff we were dealing with in February.

Dean is in his swing, sleeping. Ellie is in her bed, talking/whining/singing to herself. There is a pile of books next to me that we read before bedtime, so so so many dishes in the sink, three piles of clothes to be folded, a load in the dryer, several that already need to be washed, and breast milk thawing for Dean's night time feed. There are things piled next to me on the end tables and still there are things in baskets that need to be put away. I want to sweep, mop, vacuum, clean the fridge, mow and weed eat, organize the garage. I want to deep clean the bathroom, organize the cabinets. I want to make dinner that is not a sandwich one night. The past three days I have left my house, with both kids, and done different things. I have been encouraged and uplifted and praised for "how well" I am doing with my kids.

We get told a lot, "you are doing so well" "I couldn't have done this" "wow you have it down". I love that people want to encourage me, but these things make me laugh.

Dean is still a baby. Bringing him home was much the same as it would have been had we brought him home when he was born. We just have to keep him on his medicine and watch his colors. Sure, I have to feed him most of the time through a tube and I don't like to let him scream for TOO long, but he's still a baby. He still is treated like a baby.

I'm still exhausted. I'm still a mom adjusting to having both my kids. Add in there that Blair had been gone since Saturday and won't be home for a while yet, and yeah, sometimes I wish I could throw one of my kids out the window. Don't judge. If you are mom you'd be lying if you said you had it all together.

Things are hectic. Crazy. I wake up every morning at six to make sure Dean gets his medication. Tomorrow we head back to our favorite place (le hospital uggghhh) for ANOTHER appointment. I will probably regret sitting down to write this because I'll look at the dishes and sigh to myself and then want to cry.

How glorious to be in the mundane. I don't always love it, but today I do. It's wonderful to be in my own chaotic home with my nutso almost two year old and my gimpy heart baby. I love it. In the moments when they are both crying and I have to decide who to go to first, I try very hard to take a deep breathe and remember those lonely nights when I had neither of them close to me. It helps me to be more intentional.

Every day I make an effort to write in my art journal. To work in it in some small way. Blair calls me every night and we talk for a minute. He tells me what he's doing and I tell him about his beautiful babies.

The days are flying by. I'm afraid that I will close my eyes and the next thing I know we will be prepping for the next surgery. I'm afraid I will close my eyes and wake up and Ellie will be 5, 10, 15 and I will regret not picking her up because I was too worried about doing the dishes.

Life is a balance. We must balance being good stewards of what we've been given and making sure we don't pursue the good instead of the best things. FYI, taking care of my house is good, loving on my children is better.

It's easy to forget at four in the morning that I shouldn't have my son. That his life has come at a steep price. It's easy to forget how scary it was to see his chest open, tubes in his body when he won't let me put him down and I need to pump. I remind myself every day, none of us deserve the miracle of the life that we've been given.

Good days and bad days. Days where I can forget the dishes and write a blog post. Days where I can't. Not every day can be the best day and there will be struggle.

But when Ellie gives me kisses and calls for me, when she asks to pray before bed...when Dean smiles at me, his ENTIRE face lit up...these are the moments to remember. Anyway...he's awake now, and any second will realize I'm not holding him.

I'll probably go to sleep with that pile of dishes waiting.

And that's fine with me. It really is.

Addendum: and sometimes, your OCD gets the best of you and you just can't help it and you do the dishes anyways and let the gimpy heart baby scream at you from his swing. He made it this far, he'll survive. ;)

Part Two: Chapter Three: "Back Again"

Where to begin? Oh Lord, where to begin?

We are in the hospital again. Dean has some sort of viral infection (they think) so there are monitoring him closely and have sent stool samples to see if anything is going on in his gut. They have stopped his feeds and he hasn't eaten since Sunday night. He started some pedialyte today, to get his tummy used to being filled. We are switching to an all formula feeding regimen from now on. No more breast milk for this little man...

That has been a hard pill to swallow, even though it was largely my own choice. I was trying so hard to get him to take to me...but in the past few days every time we tried to nurse he would thrash against me and scream...it was awful actually. It was hard with both Ellie and Dean to keep up with a good pumping schedule. It was stressing me out...and hopefully this will help his gut heal and I will never see blood in his stool again.

I have learned a few things from this experience. First, I'm awfully calm in situations that could be labeled scary. I called the people I needed to call, I went where we needed to go, I made choices swiftly and quickly. I knew the list of people I could call to make sure Ellie was safe. I was in the right frames of mind to get all his medications, binder, pulse ox, and my breast pump.

Secondly, I learned that if we can, we need to just bring him to Childrens National to the ER. The first ER we went to was not equipped to handle his medical needs and they had NO idea what they were doing. I'm glad that the cardiologist on call in DC called us back and asked us to come in. It has made all the difference.

Thirdly, I need to always keep a bad in the car for Blair, myself, Dean, and Ellie. This will make life easier for everyone. It would have been nice to have a hair brush this morning...

Fourth, this has helped solidify in my head how serious this time between surgeries truly is. A viral infection for you and your baby might suck, but it wouldn't normally land you in the hospital. It is a simple thing...and yet here we are. We made it home for one whole week and we're back again. The nurses all know him and me. We chat and they look at my tired eyes with sympathy.

This feels like a crushing blow. As much as I want to be positive, it is taking all of my strength to wrap my mind around the fact that we are already back in the hospital.

My poor babies...

Ellie...had been so uprooted and shuffled around and her routine is all over the place. It's so so so unfair to her. I am afraid for her. Afraid that this will give her hardcore separation anxiety and that she will grow to dislike people she normally loves.

I am afraid of the criticism of others. Just...I already am fighting the feeling that this was my fault. That Dean caught something because I wasn't a good enough Mom or didn't do the right things. I've been fighting that feeling ever since we found out he had half a heart...it is easier sometimes, to blame myself rather than submit to the Fathers control.

We are back to truly living one day at a time. Slowly we will regain our strength and we will all be home together again soon.

I am praying for patience and strength and hope and peace. Because this is so much harder than I ever imagined...

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 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 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 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.

Chapter Eight: "Let There Be"

Imagine there is nothing. Just, nothing. No sun no light no dark nothing. No time.

But there's God.

He's there and He decides He wants to make stuff. Loads of stuff. Atoms and Giraffes and Bears (even Teddy Bears) and Hair and Sun and Air and Nitrogen and Balloons. He simply speaks and everything that we know to be, is. Because He says so.

When He did this, He saw everything.

He saw so far forward into the future that He saw a little tiny baby boy whose heart maybe needs a little bit of help. He saw how much that little baby would struggle, He knew that baby wouldn't survive without some help. So He started a Chain of Events.

First He made medicine and x-rays and hospitals where people with compassion decided they wanted to take care of other people. Then He made microscopes and gave people the talent and drive to figure out how to cut into people to help fix them. He knew that sin would be so crazy in this world that it would eventually affect our bodies and He wanted to help. So He sent people. Doctors and Surgeons and Nurses and Technicians and Janitors and Policemen.

Born to this world was a little girl, who grew up to be a woman, who went to school to be a doctor, who started to look at hearts, who started to look at little kids hearts, who meets moms and explains "This is what we found, this is what we can do."

Born to this world was a little boy, who grew up with younger siblings, who struggled to know who he was, who was lost for a little while, who met a girl who fell in love with him and he decided he wanted to be a man and they got married, and had a baby girl and then found out they were pregnant with a baby boy and that baby boy would have one ventricle in his heart.

God set it up. Boom boom boom, like a bowling ball, He set up the pins and set in motion what is happening right now.

He did this on the very first day that He created the world. He said "Let There Be" and there was.

There was light and dark and fish and birds and animals and grass and trees and science and math and time and day and night and there was Dean Blair Jaques V. Right from the very start of this world God was writing my little baby boys story.

How freaking cool is that? 

Pretty freaking cool.

Chapter Seven: "Dear Ellie..."

Dear Ellie,

This is as much your story as it is your little brothers. You don't know this, but you are giving up so so so much so that Daddy and I can be with him. You won't remember so I want to tell you, because it is important.

You are such a little girl. So tiny still. I feel like your little brother will take very much after the Carrigan side of things, as you took after the Jaques side of things. He might outweigh you pretty quickly. You will always be the big sister though. You will always have 20 months of life on him and trust me, that 20 months will go a long way at some point.

Don't forget that I had you first. Don't forget how precious those 19 months of just you and me and Daddy were. Don't ever, even for a minute, think I don't love you as much now that you have a brother.

My heart grows to hold both of you, in big big ways.

I want you to know that people love you. Uncle John and Aunt Kackie who watched you while I was in labor, giving up their Super Bowl Sunday to come take you. Mimi who flew all the way from India to meet your brother and to be here to play with you...I can't tell you how wonderful it was to know that you were with her. That she was with you. Grammy and Grumpy who might have you for a month or two while we wait and see how baby brother does. All of these people love you, so much.

None of them are Me though.

I feel guilty Ellie. I feel like less of a Mommy because I can't do everything for both of my babies. I miss you during the week in the worst ways. I'm terrified I'm going to annoy Grammy because I ask after you all the time. I'm terrified that she will resent having to look after you for weeks while I'm here at a hospital. (She assures me this is not the case...but she's your Grammy, not your Mommy, and I don't want you to ever forget that). (So for now, it's fine that she gives you ginger snaps with whipped cream).

I have to fight every day to remember that this is what God has given us. I have to fight every day to remember that in Christ I am enough, and I want to fight, because I want you to know that. You are loved. You are enough. You are strong. You are beautiful. You are kind. You are a Daughter of Christ and His love for you is BEYOND what I will ever be able to tell you.

But if I don't believe those things for myself, I know you will never believe them for yourself.

So I fight.

We're fighters Ellie. We come from some strong women, women who have been through the ringer and come out stronger on the other side.

You and me, girlfriend, we're going to come out stronger from this.

I'm going to ask so much of you one day, especially when it comes to your little brother. I'm going to ask you be kinder and gentler to him. I'm going to ask you to protect him and watch out for him on the bus and while you guys are at school. I'm going to ask you to take care of him when I can't, and I'm going to ask you to stick up for him when I'm treating him like a fragile baby doll. He's not. My head knows this, but my heart doesn't yet. Be his Big Sister. Stand up to me sometimes too.

Already you are giving up so much time with me and Daddy. Already you are making sacrifices of love, already you are showing your little brother how much you love him, simply by letting me and Daddy be here while the Doctors fix his "owies" as you like to call it. Already you are strong and teaching me to be strong. Already you show me so much compassion when you snuggle me while I cry, just because I have the privilege of holding you.

We are going to argue one day Ellie girl. We are going to fight and scream and be so so angry at each other. I might not like you and you might not like me. In fact, I promise that we won't like each other for a while. I also promise that at the end of the day, there is nothing you could do that would make me love you less. Never. My Mama said that to me once and I will say it to you, because it's truth.

You won't remember the long weeks without us, you won't remember the Facetime calls or the Skype Dates. You won't remember the tedious car rides where you tell me "ow ow ow" just because you want out of the car seat.

You won't know that I cried the other night because I just wanted to be home with my babies, you won't know that my heart hurts every time I had to leave you.

You wouldn't know any of this, unless I told you. And I want to tell you Ellie girl.

Because your brother is fighting a battle. Because you and me and Daddy...we are all fighting a battle.

And without you, you brave strong beautiful little girl, we wouldn't make such a great team.

Deano's story is your story too Ellie.

Don't forget that.

Love,
Mama

Chapter Six: "Celebrate the Highs and Pray through the Lows"

Blair and I have a lot time to talk right now. We cover a wide variety of things and a lot of what I start to think about stems from that.

Today we were, of course, talking about our son.

I was asking him if I seemed to pessimistic, and he said that at times, yes, I am. I thought I was being realistic about what all is happening, but Blair just said "Sometimes, I wish you would be less...scared and more trusting." (Maybe not in those exact words, but that's what I got from his tone and as we talked more, I think this was what he was trying to say.)

As we drove home from the hospital tonight I wondered "Is this what Love really looks like?"

Let me back up here...

I didn't think a lot about this time while we were pregnant. I knew in my head that we would spend a lot of time at the hospital. I knew that it would be hard to see my son go through these surgeries. I knew that I wouldn't get to hold him like I wanted, or feed him like I wanted for a while. I accepted it.

But I didn't let it sink in, and I think this, in the end, worked against me.

Here is the truth. Cold and hard and fact: I was afraid of loving my son too much.

Afraid that if I gave my whole heart into loving him he would never wake up. Afraid, every single step of the way, that at some point we would receive that call. The one every parent dreads when they are away from their children. Oh the trust that Mama's must put in others and in God...

It was easier, for a time, to remain aloof, to think in facts, to make light of the good days, brushing them off. In my mind good news was fleeting and I was waiting waiting waiting for something that might never happen. I watched my husband and my family and his family celebrate every mile stone, as small as they might be, but my heart couldn't commit to celebrating with them. It was too afraid.

My sister in law, one of them, texted me the other day. I hope she doesn't mind me sharing this, but it's been resounding like drums in my heart ever since I read it. She said "...It makes me miss everyone more than I usually do but at the same time I feel closer to everyone as we all come together to celebrate the highs and pray through the lows."

Here is my family celebrating every weaned medicine, every open eye, every single bit of good news and here I was, his Mama, holding back. Waiting for the bad. Expecting it. Preparing for it.

Is this what real Love really is?

Committing to the highs and the lows? Embracing every single beautiful moment, moving forward, and truly loosing your heart to another human?

It's still widely thought that love doesn't hurt. Because I'm in a real place and because I can, I'm calling BS.

Yeah...yeah it would hurt to lose my son. Yeah it hurts every time I watch him struggle to cry. Yeah it hurts every time I see his blood pressure go up and can't do anything about it. Yeah it hurt to see him cut open, his heart beating there in his chest, pale, and un-moving except for that beating. Yeah it hurt to not be able to hold him. Yeah it hurt that he didn't move or open his eyes for ten days. Yes. Yes this type of love is so big and so crazy and so wonderful that it hurts.

Tonight I helped change his diaper twice. I...why is it so important and significant that I changed my sons diaper? Because he is my son and I love him and this is the first time I have changed his diaper.

Tonight I rubbed my lips and nose on his precious little head. I sang him songs that I sing to his sister and read my favorite psalms to him. Why is this so important and significant?

Because tonight, I just...I just stopped holding back. I just finally felt like this is my baby and this is his life and yes, yes scary things might happen with him. I just finally opened my heart to him and welcomed him in there no matter how much it hurts or might hurt. I don't want my son to remember all his life that his mom thought he was too fragile to love.

Let me repeat that, more for me than you.

I don't want my son to remember all his life that his mom thought he was too fragile to love.

He got his feeding tube put in today and he got the colostrum I worked and worked for. It just...felt like...Christmas morning and my Birthday and his Birthday and every other significant day ever. It felt big. So so big. And I celebrated and was excited and won't shut up about how beautiful he is and wonderful it is to see his eyes and stroke his hair and rub his legs and to sing to him and hear him calm...

Is this what Love really looks like?

Yeah. Love is celebrating the highs and praying through the lows and opening your heart to the possibility that it will be crushed like never before. It's so big and wonderful that it doesn't matter. It will never matter that my son might end up being the one who breaks my heart or that my daughter could break my heart...children have an amazing hold on their mama's. Whether they are on this side of Heaven or not.

My mind drifts back to Jesus on the cross. It drifts there a lot. His heart, God's heart, broke for us all that day. Sinners everyone. We, as children, have the ability to hurt the Lord like no other and He STILL did it for us, still gave up His life. It is important to remind myself: my children hold only pieces of my heart, my God holds all of it. And He has some strong super glue. With that glue I can love and love freely, no matter what might or might not happen, because the Lord can always glue the pieces of my heart back together and make it even more beautiful.

As we get older...we start to see love in new ways. I just never thought my children would teach me so much. I just had no inkling that my son, this barely two week old baby, would be able to teach me more about love in those barely two weeks than I've learned in three years of marriage.

Love is celebrating the highs and praying through the lows and opening your heart, no matter the circumstances. It's not just children either, husbands, wives, parents, siblings, friends all have the ability to hurt you so deeply that you think you won't be able to bounce back.

I refuse to live with my heart closed to love. Refuse to act like just because someone has the ability to hurt me (whether on purpose, or just through circumstances) that I won't love them.

It's Big and Wonderful and Scary and Awesome. It's Highs and Lows and every step in between.

And worth it.

Love is worth it.

Chapter Five: "Our God is In Control"

I hate that sometimes. I wrote the title and immediately was like "That's such a yuppie Christian thing to say. Ugh Madalynn."

Just because something is said a lot though, doesn't mean that it isn't true. This is truth.
God is in Control.

I remind myself of that a lot, I have to. We have so many ups and downs, I got sick, Ellie has a cold and will not be staying with us this weekend (and I will miss her something fierce), Blair finally admitted how useless he feels...how he was ok with me being sick because it meant he could take care of me.

We gave ourselves permission not to be at the hospital all night. We put our trust in our son's Doctors and Nurses and I told myself all afternoon, "God is in Control." I've heard it said that He's up all night so I don't have to be.

I find amazing comfort in that thought.

Some days, this just...this just sucks. Hard. A lot. More than I can describe unless you've gone through it. Not something similar, it. This. Hypoplastic Left Heart Syndrome. Open heart surgery mere DAYS after being born. Do you know what newborns should do? Poop meconium, nurse at my breast, and make little sounds in the middle of the night that make me smile. They should be crying moving, wiggling, I should be changing his diapers.

My reality: I. Have. To. Wait. And pray and talk to him and rub his fuzzy little head and be away. And I can't plan a dag-on thing. I have NO idea when we get to come home. None. And even when I do find out, I won't trust it. Yesterday he was doing great, by this morning, they were doing an echo because they weren't seeing progress as he should. By this afternoon he was ok. Seriously, what the hell?

We don't go day by day. We go hour by hour.
And we wait. So much waiting.

Look though, there has been laughter. God knew that we would need laughter.

The day he had surgery his godparents came and sat with us. I love them. They crack me up and it was so good to laugh with them during that time of waiting.

Like the time my amazing mother in law and Blair's Mamaw came to bring Ellie to see us. They took us back to Front Royal to get things and boy was it an adventure. We made wrong turns. We got lost. I had to pump in the car, hysterical. I had them rolling. "Oh Hello DC, this is my boob, yup, it's happening, move alone."

Or the night I was just having a bad day. I have this weird thing right now that when I cry, I would just rather be alone. Most of the time, this happens in the shower. Blair knows. He lets me and I love that. I jump in thinking "I'll cry for a little and get it out and be done and move on." God knew that I needed laughter. Basically, with pumping, I had not been emptying myself well enough and had a knot. I worked it out in the shower and then just shot milk for a good two minutes and I laughed and laughed.

Yes. That was a story about me milking myself. You know what? I want my son to know that story some day. Because dude, it's FUNNY.

Wednesday night My amazing mother in law brought Ellie in to have dinner with us, and then she and Blair went to see Deano. When they got back I had given Ellie a bath and put her in her footie pj's. Her pj's don't have good traction. My girl LOVES LOVES LOVES the elevators, she dances in them, and tries to push the buttons. When we all got in to say good bye for the night, she ran and completely wiped out and fell on her bum and hit her head. And the three of us just laughed and laughed and laughed. (She laughed to, by the way)

Yesterday, Blair's voice randomly cracked while he was talking to one of  Deano's nurses. I thought I was going to pee my pants.

Here is why these things are so important: because God is in Control. He knew, he so so so knew that we would need to fill our time with laughter. He knew we would need to allow ourselves to laugh.

I've been thinking about that all day. I was sick and came back early and slept and prayed and talked to people. If I were in control I would have completely forgotten about Joy and Laughter.

My God is so good that He doesn't forget those things.

I've been told how strong people think I am. Suddenly, I feel it. Don't get me wrong, they did their echo today and I was terrified they would "find" something. Being strong doesn't mean you're not scared though. I think it just means that you cry when you gotta (in the shower or wherever) and then you wipe those tears and say ok. Next battle. Bring it.

There are so many people I wish I could thank. So many who have no idea what their kindnesses mean to me. My cousin was here to day, haven't seen that kid in forever, and what did I do? Fought tears and asked to drive me somewhere. Without hesitation he did. (His girlfriend is so lucky to have him...shout to Carter who has actually subscribed to my blog...you are winning, just so you know)(and so is he). My parents, Blair's parents, friends from church, my older sisters, my big brothers...strangers I've never met in person...God is using YOU all to remind me that this is not something we are fighting alone.

God is using YOU all to remind me of His unfailing wonderful Control in my life, in Blair's, in Ellie's, in my Son's.

Literally every time I start to feel discouraged SOMEONE texts me. Every. Single. Time.

I am blown away by God's control. I am blown away by His love.

I am hiding there. Sheltered in His wings. Crying and Laughing when I need to.

I am thankful. More than anyone will ever know for the way this is drawing me close to God and closer to those who love me and whom I love.

Chapter Four: "Think of Quiet as Healing"

When it comes to my kids, I think, like most moms, I'm a doer. I want to DO things. Things that seem unimportant to you mean the world to me.

I see other moms right now with their babies, big ones, small ones, fresh from the womb ones...I see them holding and snuggling their babies. I fight against being jealous, though I am. I give that up and remember how my life is so richly blessed. I take that to Jesus. Daily.

Right now my days consist of being in a hospital room with my husband and my now week old son. We bring our kindles (We read), our computers, I have a bag of craft things. We listen to music, I post things to Facebook, I text my friends. I Skype with my beautiful girl. Today, I paid a bill, planned our month in finances, organized a list of people who are willing to help watch our girl, called my mother in law, called my Mother, planned, wrote lists, and crafted a cute name tag for Deano's bed.

I had uninterrupted time in the quiet of the day.

There was no Ellie talking about bears, no her getting into something she shouldn't or climbing on a table. She wasn't pitching a fit, she wasn't whining or singing. She wasn't here to dance to the music Blair played for a short time.

There was no Deano waking up, demanding to be nursed, crying because he was wet, needing a diaper change. There was no Ellie trying to kiss Deano for the tenth time, no her trying to pick him up. He doesn't coo, he doesn't cry, he doesn't stir. He is still.

This room is still. This room is quiet save for the many machines that monitor and beep and keep my sons heart and lungs and kidneys working. There is a low hum in his room. Often this place is just so quiet.

I chafe at it. It gets under my skin. I talk to Blair about everything and nothing to fill the silence. I talk, but not too loud, afraid that if I do I might miss the slightest sound. I play music, worship songs encouraging me to draw deeper to Christ, but not too loudly, because this space feels as though there is something there, just on the brink, and if anything is too loud we will not hear it.

I want to hear my son cry. I want to hear him coo. I want to see his eyes. I want to snuggle him close. Hold him to me and whisper my love to him, my love and God's and Daddy's and Ellie's. I still do that, I talk to him all the time. I joke him about his "girlfriends" (nurses) and remind him that he will under no circumstances be a player. I told him about the day I found out I was pregnant, how I told Amanda through Facebook before I told anyone else. How scared I was.

How all I wanted, more than anything, was for him to have a heartbeat.

How I cried when I first heard his heart beat.

How scared I was when I found out it was his heart that had an issue...how I wondered, in the silence of the night, if at any time, his heart would just stop...

I tell him how wonderful it was to feel and see him move inside me. To watch him grow. To bring him here, though in my soul I wanted him to stay in me, safe.

Someone reminded me today, that there is healing in the quiet. In the stillness.

My son's chest is still open. If he were moving, there is so much that could go wrong. It is hard not to hear him cry, but oh, am I thankful that this has given him a chance to live.

There are things that God is teaching me that I didn't know I needed to learn. Like how to be still. How to appreciate the quiet. How to accept it and live in it. How NOT to fill the silence. How to enjoy it and love it. How to see the deafening beauty that is the quiet hum of a machine. To see beauty in his open chest and swollen body.

I am reminded, daily, that he could be gone by now. When I look up from my book or my craft or my lists or as I get off the phone and see his little head there...there is a feeling of love that overtakes me. Of remembrance that this surgery has given my son a chance at life here with me, with Blair, with his sister, and Grammy and Mimi, and Grandpa and Grumpy, and countless Aunts and Uncles, and cousins.

Today I was reminded that the quiet means he is healing.

I couldn't help but think of the times God has seemed quiet in my life.

Put those thoughts together.

Maybe those times we think God is quiet, He isn't.
Maybe He's just leaving room for us to heal.

Embrace a quiet night.
Let it Heal you.  

Chapter Three: "He's There, just Out of Reach"

Last night we slept in real beds. It is amazing the things you take for granted. It was amazing to have pillows and blankets and get to sleep next to Blair. We so needed the time to be together, alone.

Blair is so patient with me. I don't understand how he is handling this so well, even though he assures me he's not really. I had a good friend remind me that when your milk comes in, there is a chance that your hormones might shift and cause you to be a little weepy. Oh yes, this is true. Blair has seen me cry about many things. Most of the time it's not even about Deano. I cried the other night because I bought him the wrong thing from the cafeteria for dinner.

I cried last night at four AM because I didn't have my babies.

Blair's Mom, who came from India to be here for us, brought Ellie to see us yesterday. I came out of a shower and there was my girl. My beautiful, healthy, running, toddling girl. So precious. And talking so much! Oh my heart! Oh my darling daughter!

I don't think anyone can fathom the guilt I feel not having either of my babies to put to bed. Can't know how excited I was to change Ellie's diaper (and it was even a messy one!) yesterday.

I have a newborn baby. And I got a good nights rest. I was up to pump, but I still got good rest. This is practically unheard of for a momma with a newborn!

My heart aches to have my children with me. When we stopped at our house to pick things up yesterday, I looked at the corner where his pack and play should be set up (it's not yet), and his dresser, and all the amazing things people have made for him and yes, I cried. I want them home with me. I want my babies.

I told Blair this morning it almost feels like we're on a surreal vacation, because we get to sleep so much, and don't have to lug Ellie's things all over, and I'm not constantly nursing our son.

But I wish I was.

All of my very soul wishes for my babies, I can't say it enough. I'm a Momma without her babies right now...I feel misplaced in the world.

I walk slowly still, recovering from his birth. I wonder what people must think of me, this slow woman walking to and from her car in the hospital. I want to shout and scream, "I just had a baby!"

As much as this is Deano's story, it's Ellie's too. My girl is spending so much time away from me. Oh Lord do I miss her. All the sudden she looks so big...Dc Children's Hospital has this little bear called Dr.Bear, it's their mascot. She loves him. All through out the hospital she pointed to them and said "Da Bears! Da Bears!" She was enamored with them. I held her up in a window and we looked and looked at them. I can't wait to see her be a big sister. It hurts me deeply that she didn't get to come see Deano before his surgery. I'm grateful that they were able to get it done quickly and successfully, but I wanted her to just see her "baby". Just once. And yes, it's out of fear that it might be the only time.

We aren't out of the woods yet. I celebrate each moment. Every day since Monday I wake up thinking "Thank you Father, for this day." Friday I kissed Blair good morning and said "We made it one more day. One more day."

Time has never felt so precious. We are living in the moment in an amazing way. Accepting enough Grace for the day. Thankful for the new mercies. Thankful for the prayers. Thankful for the love. Thankful for my family, for Blair's family, for the people who love us, my sister friends, and Blair's brother in arms. There are people across this country praying for my son, right this very moment.

How humbling. To be so loved. Whoah. Today one of the Elders from our Church drove out to DC to just see how Blair and I were doing, to pray with us. Just because he woke up thinking about us.

Writing this post, there are more tears.

I've gotten a lot of feedback about writing and sharing his story. I have to. I process things this way. And if my story and Deano's story can help others, why would I not? Look I've met so many other HLHS Momma's. Ones who have gone through this, are going through it, or have yet to go through it. My heart hurts for each and every one of us. My heart is angry at the sin in this world that has caused such pain and heartache. I am constantly reminding myself of God's sovereignty and His Great Love for us. I am constantly reminding myself that this is breaking God's heart too.

It feels like my babies are here, just so far out of my reach. My mama heart wants to do so much more for them, both of them. Especially for my beautiful swollen baby boy.

I have to remind myself, minute by minute, that if they are out of my reach, if I am unable to get to them the way I want to, they are not, nor will they ever be, out of God's reach.

So snuggle your babies, your children, close. Call them up please, tell them that you love them. Treasure the moments that are hard, that are difficult. Drop everything for them, please, if not for yourselves, do it for me. Do it for my Ellie girl who is being spoiled by Mimi, and for my Son who can't be held by me just yet.

When you go to sleep tonight, remember your children are held by the Ultimate Father. Remember that you are held by Him as well. Remember you are His Child and His heart is for you.

Remember no one is out of His reach.

Chapter Two: "I'm scared Daddy"

I keep thinking that we've reached the hardest part. I keep thinking, nothing can get harder than this moment. I keep getting proved wrong.

Yesterday there was a lot of waiting. We started our morning at 7:00 AM. I sat in a chair and held Deano (newest best nickname, I've been using it, it's totally sticking, will explain it later) and kissed him and played with his toes. Blair held him too and gave him kisses.

We walked with our son to an elevator and they took him down. We took our infant son and gave him to people who we were trusting to take care of his tiny tiny heart. I cried when we said goodbye, praying that it wouldn't be the last time we saw him.

We walked back and got ready for the day. Decided to go get breakfast. We ended up spending a lot of time in the cafeteria, holding hands, eating food (so much food), and of course, reading.

We were given this pager that could give us updates. We knew when he went into surgery, we knew how he was doing, we knew when he was on the bypass machine. Breathing. Hoping. Reading the amazing posts from friends who were praying, people I don't know who, people who I might never meet. Oh how precious. Thank you. All of you. Oh how amazing the body of Christ.

Deano's godparents came to see us. They came and sat with us, talked with us, laughed with us. I appreciated their love. We could talk about baby boy, we could not, we could go eat, there was no real plan and it was nice. Katharine gave me a big bag of crafty stickers and smash book, I had no idea how much I would need it later. I had made all these plans to bring coloring books and my art journals...none of that happened. Which is ok. It left room for God to use Katharine.

We decided to go out of the hospital to get lunch. I went up to his room to pump, just as we got done and decided to go we were informed that he was out of surgery and we could talk to the surgeon. We did. Everything went well according to him, it would still be a while before we could go see our son. We went to lunch. It was an adventure, but I was thankful for the time AWAY from the hospital.

Then we got back.

When we got to the CICU we were told he was back there and we could go see him.

Walking into his room took...took everything.

He did not look like my baby boy, and I was more than terrified, I was ashamed of myself.

I didn't want to touch him, I didn't want to talk to him, I wanted to turn from that room and not see his open chest or the tubes or the machines or his closed eyes or his pale skin. I wanted to run. I struggled hard not to just start sobbing, but tears leaked from my face.

I went to use the rest room and struggled to bring myself back into his room. I was quiet. I didn't know who to talk to, I didn't know what to say, I didn't know where to go. I honestly, and I am not happy about this thought, considered how to get out of the hospital to get home. I wanted to go home. I wanted to bring him with me.

And I couldn't.

Blair and I...we just sat behind him on a couch together. Nurses rushed around him, monitors beeped, there was nothing we could do for our son. We were very very quiet.

My mom and dad kept telling me to talk to him and I just felt this deep deep shame that I couldn't bring myself to do it. Blair insists that I give myself some grace in this, because I was very tired and cramping more and more. I couldn't bring a chair to his bedside, so I had/have to stand when I talk to him. After Blair saw me swaying on my feet, he insisted it was ok for us to sit quietly in the back ground and let them work.

I thought about Ellie. I wanted her. I wanted to hold her and see her and hug and hope. I wanted to remember that I had a child who wasn't in the hospital, who was "safe", who could hug me and throw tantrums. I just wanted her.

I texted my daddy. I told him how scared I was. I think I was telling my Heavenly Father that too.

If I could have, I would have crawled into my Daddy's lap and let him hold me. But I knew that if any of my family were here with us during this time, I would just completely lose it. He did offer to come, and the offer meant more than he knows.

It was such a reminder of God's love. Blair and I sat and held hands. Just sat together while they worked on our son. And I just told told my Father in Heaven "I'm scared Daddy."

And that was ok.

Things were...so sketchy for a time, and I'm sure there will be other sketchy times. As I write this nurses and a surgeon are draining some of the blood from around his heart because it's putting too much pressure there. I can't see what they are doing. But I am trusting they are doing it.

He was losing a lot of blood yesterday night. At one point, we were asked to step out while they x-rayed his chest. While they were out doing it, his heart beat dropped quickly. We stood in the hallway while an alarm sounded and ten nurses came running down the hallway, all alert, all ready to do what they needed to do for our little son.

We stepped out. I got some snacks for dinner, I'm not sure either of us could have eaten much. I pumped. We just sat. We both admitted to how scared we were...and talked about how beautiful it was that they could do all this for him. We Skyped with Blair's Mom and saw Ellie. I sobbed.

In one week, I have had my second child, been through more emotional stress than I ever thought possible, have found out that people all over the country are praying for us, and heard my daughter use actual words! Whew!

Blair and I couldn't get over how big she sounded! And oh how good it was for my heart.

Things, for me, got better after that. We came back to his night nurses, who just touched my heart. One of them told me she had a friend named Dean and they all called him Deano, and she apologized for calling him that and told me she would stop if I wanted her to. I didn't. I love it. I don't know why, but ever since I keep calling him my baby Deano.

He started to do better. His color improved and they got to clean him up a little tiny more. I'm more confident and ready to rub his hair and talk to him. It still is hard for me to stand by him. I go in little spurts. I rub his head and tell him not to get used to all this attention. I show him the milk I've pumped for him and tell him he needs to get better so he can have some of it. I wait. I sleep. I pray. I write down some of the texts I've gotten so I can keep them forever. I hope.

There are not enough words to tell you how terrifying and shocking it was to see him after surgery. My heart aches for the people who have yet to go through this, and for the ones who already have. I am working on accepting and forgiving myself for wanting to run at first. I am working on seeing myself the way others have told me they see me: strong, but strong in the Lord. I am working on resting more and drinking more water.

Minute by minute. Day by day.

Daddy, Father, Lord, I am scared.

It's ok, He says, I watched my son on a cross. I know this hurt. I hurt too. 

Breathe.

And Praise God, my son is Four Days old.
And those four days with him have been amazing.