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.

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.

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.

Contradictions

It's been a month since Dean's second heart surgery and we have been home almost a month. I have contemplated what to write and argued with myself about writing. Mainly because there is always so much to do. As I sit here, with Dean and Ellie both snuggled up in their beds (Hallelujah they are starting to go to bed around the same time together!) I look around and there is a pile of dishes in my sink, three piles of folded clothes, the trash needs to go out, and the play room is a war zone. And Blair and I have not spent much time alone. It feels selfish to sit and write when I could be snuggled up next to him. Or taking care of my house. Or sleeping.

I've been hesitant to write whats on my heart. I'm not sure I can articulate this well enough for people to understand.

We get asked a lot "How's it going, Dean being home?" I pause when asked that. The long and short of the answer is that it is both good and bad. It is both wonderful and terrifying. Beautiful and painful. An amazing blessing and absolute chaos.

I love our son. He has gone through so much and come out beautifully. His smiles warm my heart and he responds to me in the most amazing ways. Yet he is very very different from his sister. He is all my baby. He does not like most other people, he can tolerate them for a short time, but at the end of that time he makes it known that he wants to be back with me. It's almost like no one knows how to hold him as well as I can hold him. The closest person who's been able to calmly talk to him when he gets fussy has been my Mom. Go figure. I'm a lot like her.

The few times that I've left Dean with Blair, I have come home to either to the craziness of Dean crying or Blair pacing back and forth with him, because if he sits down, Dean screams at him. His face gets red, and goes from red to blue and he has actual literal tears in his eyes until I sit with him or rock him.

I love that he is calmed by me. I am terrified about the prospect of not ever being able to be alone.

I think I had some expectations about what life would be like after we got home this last time, and the reality of what we can home to was much different than I thought it'd be. It's summer time and I will not be going to the Beach, I will probably not be going swimming. I will not be going for long walks, and I will not be sitting in the back yard with my kids, playing in the grass. Dean doesn't like being outside. And one of his medications cause him to be sun sensitive. Ellie likes to go go go, I'm afraid of trying to coral them both, keep him from crying and keep her from running into the road. Even going to the Library (which I miss terribly) seems like too big of a expedition.

Part of this is the very real struggle of going from one kid to two kids. Truly it is hard. Everything is divided and harder and more. Almost every day, at some point, I have to rock Dean, talk to Ellie and listen to Blair. And I must make it all happen. I am a champion multi-tasker. Most moms are. Most women are.

Add to this the realization of how unhealthy my relationship with food had become and what it was starting to do to me physically and emotionally and my mind has been racing racing racing these past few weeks.

I am simultaneously praising God for the blessing of my children and husband and life and mourning the things I have given up. Desperately wishing for an hour to sit by myself and pretend that I can dwaddle and not think about anyone.  I mourn the loss of another summer. I mourn the loss of being outside. I mourn the loss of Dean's baby hood. I mourn the loss of friends who don't come see us because they are sick (which I love that they think of Dean first, but it makes me so sad for Ellie). I mourn the loss of just packing up and going places to visit people.

If we go anywhere we have to think about how long we will be gone and when we will be coming back. We pack medications and feeds and I'm worried that at some point I will say Peace Out because my son can't handle it. Or perhaps I won't be able to handle it.

This feels so isolating. I've entered into this world of Special Needs Momhood and it's a rough place to be man. It's lonely. And I hesitate to talk about it because everyone wants to tell me how grateful I should be that he's here still. Do you think I forget that? Do you think I don't know how much his life cost? Listen the other night I remembered what it was like when he was intubated but off the paralytics and he would cry silently. I had to grab Blair's hand and breathe slowly to calm myself down. Swallowing back tears. I have to remember how much it hurts him when I give him his shots, or that when he cries for me, it's because for so long we were apart. I know.

It does not diminish the fact that our day to day life is still hard. That I am still struggling. In part because I think my son is just a colicky baby. He's particular. He's stubborn. I love these parts of him. I know they are part of the reason he was ok after two open heart surgeries. I know he is strong.

And I know that I am tired. I know that I am constantly on. I know that my attention is drawn every which way. I know that "me" time, though important, most days has to wait. I know that at any given point in my day I will need to drop what I am doing to go "save" him. Or to keep Ellie from accidentally stepping on his head. I know that this has been a strain, even more, on my relationship with my husband who does everything he can to help me. He's literally doing the dishes as I type this. He's done the dishes about fifty million times today. He will continue to do them because he knows that that is a tangible way to show me love. Do you know what I would give for an hour truly alone with him? We'd probably nap...we did today. The four of us all curled in our beds as a celebration of our Independence Day.

Friends, why must we tell mothers that they must be grateful when they are trying to bare their hearts with others? Why must we tell them what to do or how to do it? Don't you think they are trying? Don't you think they look at their children with such joy already?

Those things never make motherhood less hard.

Until you do it, you have no idea.

It is the daily living. The day in and day out. The constant diapers and crying and trying to get the baby to nap so you can shower that make some days feel like too much. Add to this that our son is still recovering and has a very particular personality and man...we just don't know what the hell we are doing.

So this is where we are now. Surviving each day. Doing what we can when we can. Working as a team. Praying that we get through this year. Reminding one another, this is not forever.

This is not forever.

And yes, we will miss the time that our babies are this small, yes, we will miss their tiny fingers and toes. But I will be honest, I look forward to the day when I can send them out to play and fold laundry by myself. I look forward to the day when they go to the bathroom on their own. I will celebrate the day that both go bed at the same time and I all I have to do is kiss them and tell them I love them. When I can drop them off at a game or play or after school program and read a book by myself in the car. When I can go back to work.

Maybe those things make me selfish. But they're true.

Until then, I will survive. They will survive. And I will do whatever I have to do to get through each day, hoping and praying that my kids know that I love them. Even when I lose patience. Even when I get frustrated. Even when I yell at them. Even when I have to lock myself in the bathroom and put my head between my knees. Even when people want to remind me how grateful I should be.

If there has one thing I have learned from the past year, it's that the most contradictory emotions can exist at the same time. Joy can live with fear. Love can live with frustration. Thankfulness can live with the desire and need to have five minutes without someone touching me.

I mean, c'mon guys, have you seen Inside Out?

This is pretty much an accurate representation of my year thus far. 

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...

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

So much has happened. So much.

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

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

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

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

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

She met her brother.

Guys, she met her brother. 

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

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

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

My mind shifted into "whatdoIdowhatdoIdowhatdoIdo?!"

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

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

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

Lies.

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

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

We are home. But we are home with caution.

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

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

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

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

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

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

And that's enough.

I am enough, in Christ, for them.

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

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

I think we'll survive.

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

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

I. Am. So. Tired.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Just one more.

Chapter Nineteen: "Peace. Be Still"

Prepare yourself to be assaulted with feelings.

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

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

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

My Mommy.

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

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

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

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

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

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

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

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

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

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

Chapter Sixteen: "Be Like your Daddy, Son"

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

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

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

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

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

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

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

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

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

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

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

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

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

Be like your Daddy Son. 

Be strong and get better and come home. 

Chapter Fifteen: "Learning to be Held, Together"

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

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

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

I have learned to love Dean in whole new ways. 

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

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

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

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

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

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

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

That merely being held could be too much for him. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learn to be Held. 

Learn to allow Him to Hold you.  

Chapter Fourteen: "Hosanna"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Chapter Thirteen: "Broken Hallelujah"

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

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

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

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

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

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

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

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

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

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

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

And then...

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

I took a deep breath. 

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

Loved. 

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

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

And that's enough. 

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

They make it into something beautiful. 

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

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

Chapter 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