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.

Of Broken Hearts

I am not there yet.

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

Mostly, jealousy.

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

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

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

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

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

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

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

Be gentle with me, my heart is broken too.

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

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

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

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

Be gentle with me.

My heart is being operated on too.

Fierce.

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

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

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

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

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

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

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

And it. Is. Hard. 

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

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

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

And I forget to tell God "Thank You." 

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

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

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

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

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

Every day. 

So I will do it all again tomorrow. 

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

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

Because it's there. I know it is. 

Beach Glass

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

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

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

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

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

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

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

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

And I am not.

I am not.

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

So he can live.

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

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

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

I just feel worn down.

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

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

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

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

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

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

Inexplicable.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pockets

I have started and deleted at least three blog posts.
I have written countless things in my head and prayed for the time to get them OUT of my head.
I have explored topics and themes and thought about some of the "little" moments in life that have been happening, and some BIG moments in life that have been happening.

I have thought a great deal about Love and what it means and how we do it. Thought a great deal about how love is a choice and a hard one at that. How we chose to love our spouses, chose to love our kids, chose to love our family, our friends. Thought a lot about specific ways that people have chosen to love me, to love my small family.

I have thought a lot about love and a lot about loss. Because I have known loss.

We have become bosom friends. Nestled together. Loss of friends, loss of babies, loss of dreams and hopes. Loss has shifted the way I think, the way I handle things, the way I talk to God.

I woke up today wondering about loss and about pain. About why we chose to put a price on loss. "You have lost more than I have, therefore, your pain must be greater." No. We both have lost and that loss has created pockets of sorrow in our souls. Sometimes we can live and forget those pockets, sometimes our hands are stuck in our pockets, jingling those losses around like the key chains on my car keys. Sometimes those pockets are full and heavy and present. Sometimes they are light, the lint that is there...we barely feel it.

I've been having some of my own heart issues lately. Not physical ones, but spiritual and emotional ones. Ones that feel very very very big. Ones that make me a bad mother and bad wife and a bad Maddie. I drifted away from things I know I should be doing, forgetting the BEST things in pursuit of the GOOD things.

It is GOOD to have an empty sink, it is BETTER to have spent time with God.
It is GOOD to fold clothes, it is BETTER to lay on the floor and let Ellie climb all over me.
It is GOOD to work out and try to be healthier, it is BETTER to sit with Blair and listen to his day.
It is GOOD to tell people that I will be praying for them, it is BETTER to ACTUALLY pray for them.

I am working on bringing my heart issues to God and forgetting them there, Emptying my pockets of the sorrow and loss I have been carrying around for the past month. Letting go of the fear and the worries and expectations and pain that has rooted deep into my soul. It is a long hard journey. And to be very honest, I already want to quit, because some days, all my son does is cry and I want to scream. And while it is easy to say "I am thankful he is crying" it is another thing to LIVE that.

One persons pain and struggle does not diminish another.

It is what we chose to do with the pain we have that makes us all so different.
Do you give up? Do you let it ruin your life? Do you live in that?
Or do you get back up? Try again and again? Die to self minute by minute, because let's be honest, day by day is too hard...

I'm working on emptying my pockets of the sorrow and pain that I carry.
You should too.

You'll be lighter.

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 Seven: "Scars Upon Our Memories"

When we were home that first time I took Ellie and Dean to the Library. I couldn't help it, I wanted to show off. I love the people there and I miss it terribly and I was so excited to be home that I just wanted to show them all how beautiful and wonderful and strong our son was. When we went I overheard a woman talking to an older man, they were regulars, people we saw at the Library often. They were talking about writing and I overheard this small snip-it "you should write your story, that's why the Bible says so often to write things down."

I've remembered it and think about that often. About how I'm writing this story, about why I am writing this story. About people telling me that I'm a wonderful writer or that they are blessed by my words.

It amazes me that people read these things and are blessed by them. Especially because I'm awful at grammar and spelling and sometimes I jumble my words. I think of Moses. He was awful at talking and God still used his voice. Let me be like Moses, Father.

I wonder when Dean's story will come to a close. I wonder what the final chapter will be and how I will write that. I worry, as I will for the rest of his life, that the final chapter will be when he goes on to Heaven and leaves me here, waiting for him. I will always worry about that. I will constantly bring that before the Lord. I have to. Or the weight of it will crush me.

Each chapter of his story tells such a different tale, starts so differently. He had his second open heart surgery today. It almost feels that I was hardened to what was happening. What no one tells you when you have a child diagnosed with Hypoplastic Left Heart Syndromes is that it's not always the surgeries that will be hard, it's the recovery.

Surgery I can handle. You eat a lot, wait a lot, read a lot, maybe craft a little bit. You don't see your child cut open. You don't see them on the operating table. You don't see that part.

The part you see is the part that stings. Your child on a big hospital bed, pale and swollen. Chest tubes and dried blood stains. Their mouth hanging open, nose cannula taped to their face. You see the machines with the medicines, the nurses sitting IN their room, the lights dimmed. You see the IV's hooked in their arms, the Arterial line sewn in. You hear your child cry hoarsely and you can tell that they are in pain, it is written on their face...

That. That is the harder part.

We have weathered another storm. Gotten to the boat and then been asked to step out onto the waves. I wonder, when Peter did that, if his legs got tired from walking on the water? We know that Peter sank because lack of Faith, but I wonder if his legs were burning to. If his muscles were pushed beyond what he thought he could do and in that moment of weariness, if that is when he lost Faith.

Faith does not show itself when you are strong. It comes to you unbidden when you want to hid and run and throw temper tantrums. It reminds you that in the end there is One Winner and that you are following Him. It reminds you that the battle is not yours, but His, if you are willing to trust that He knows the best strategy.

If I could have given my son life any other way than this, I would have. Which is why I'm not the one giving him life, He is. And this is what He has chosen. This is the story that God has given Dean.

I write about this because one day I will forget. I will forget the machines and the endless waiting and how it felt to leave him at night to go sleep. I will forget that he looked awful after the Norwood and the Glenn and that all I wanted was to hold him. I will forget that life is precious and I need to treasure it. I think we all do. It is easy to. It is easy to forget that you are not promised tomorrow when there are bills to pay and work to go and chores to be done. It is easy to forget that there is joy in life when your child is in pain and you can't help them. It is so fragile. I write because I don't want to forget. I want to be Faithful. I want to push through this. I want to remember that we will not ALWAYS be in DC. I want to remember that next year Lord Willing we will be home and these will be but scars upon our memories. Scars are there, but they are not gaping wounds. We are in a place right now with fresh wounds. With hurts and fears. But Praise God, they are scabbing over.

They are scabbing over.

And my beautiful son will come back home. And we will struggle. And I will go crazy wanting to do everything. And Ellie will drive me batty. And Dean will cry while I make dinner.

And it will be part of this beautiful story.

 

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 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 Thirteen: "Broken Hallelujah"

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

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

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

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

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

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

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

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

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

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

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

And then...

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

I took a deep breath. 

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

Loved. 

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

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

And that's enough. 

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

They make it into something beautiful. 

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

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

Chapter 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 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.