After: In The Flames

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

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

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

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

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

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

We get to simply be a family.

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

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

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

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

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

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

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

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

I am praying that it refines me.

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

Take Four

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

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

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

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

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

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

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

And I am tired.

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

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

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

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

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

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

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

I am tired.

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

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

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

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

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

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

I am tired.

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

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.

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.

Just How Real IS the Struggle?

I think often about what I'm going to write here. I'll have a thought or something will happen and I will think, "That could be a good blog post." I further evaluate it and think "Is this worth writing about? Worth sharing?"

Will it help others? Will it glorify God? Will it let people into our lives?

And right now, most importantly, will my kids want to read this and be proud of their mother?

I've started and erased and rewritten fifty million times this week. I know I need to write something because there is a storm residing in my chest and maybe if I wrote it would let up. Maybe.

I do not feel like me. I don't feel...functional. I'm having a hard time going to sleep and hard time waking up. I'm having a hard time just being in the hospital room with our son. I am having a hard time justifying, everyday, needing a break. I am having a hard time, most days, breathing. I've never been one of those girls who needed to be around someone, but right now, when Blair is not with me, I feel like I am constantly fighting off a panic attack. Sometimes I feel that way even with I am with him. I had to put my hand on his chest last night to remember to breathe, in and out.

I am pessimistic. I am frustrated. I am angry. I am grieving for the life I wanted for Ellie and for Dean. I know it. And please, oh please, stop asking me how I am. Because the question makes me struggle. How much do I tell them, I wonder. How much do they really want to know?

Nurses and Doctors they ask this all the time. I don't know how to tell them that though I am glad they are caring for my son, with all of them there it makes him less and less like mine and more and more like a condition and I want to take him away from all of them. I don't know how to tell them that I am afraid to be alone with Dean right now because he HURTS and I can't do much to help him.

I feel like they gave me back a different baby after this surgery. He won't smile at me, and why should he? He's been through hell. Rubbing his head does not calm him, talking to him does not calm him, holding him does not calm him...so in a desperate attempt to help him sleep all I can do for him is push a button and ask for more drugs for him.

I feel like an awful mother. Everyone keeps telling me that it's ok to have bad days, but my bad days have strung into a whole week of "I'll try again tomorrow" and so I try again tomorrow and when I fail I feel like it's not even worth trying any more. If I am not with Dean I want to be sleeping. But if I sleep too much I feel guilty for not being with our daughter, who I miss terribly. She's going to be two this month. Will I be there for her? I don't know.

I heard lots of stories about how easy life gets after the Glenn and people keep telling me that. Maybe it got easier for them, but for me, it feels like it got increasingly harder. I heard stories about being home five days after. We've been here a week and there has been no talk of discharge, oh, wait. There has. But only because we are coming home with a medication that I have to inject him with. Two times a day until further notice I must give my son a shot. Grand. I'm so excited to be inflicting more pain on my kid, but hey, it's ok, because he gets used to it!

He gets used to it...

I don't want him to get used to it. I am angry that we had this tease of life at home and now here we are, back in DC. I am angry that I can't give people more information. It's more of the same. Hurry up and wait. If there were updates people, I'd give them. But there are none.

Blair suggested I go home for a while. Ha. Let's pile more guilt on top of the guilt I already feel. We'll have guilt cake, it'll be great.

In one 24 hour period I had three friends tell me they missed me, and then my husband told me the same thing as well. Don't worry guys, I miss me too. When I find me, I'll let you know, because this crap attitude I have is getting old.

I want to go home. I want to be home with my Ellie, I don't want my parents to have her any more. She's so tan right now. She's so precious. And I'm missing it. She has no idea what she's giving up...no idea how much I miss her...no idea how guilty I will feel about having to leave her with her grandparents for so long, no idea how jealous I am of my mother for spending every day with her. How angry I am that I am not there to pick her up in the morning, to hear her "Good morning, where Deedo?" My children are not only missing out on having their mother, they are missing out on one another. I am not looking forward to the awful adjustment period that we have together every time we come back from the hospital. I hate that I just wrote that sentence.

And I know I know, you shouldn't feel guilty, this is what you have to do, we're here for you if you want to talk, take it easy, you're doing a good job, we're praying for you, God is there when you aren't, people love you...does that about cover it? Right? Am I missing anything that someone might want to say to us/me? I feel like I've stopped trying to talk to people because I don't want to hear any of this any more. We've been here four months. We were home a total of two weeks and five days, and not consecutively. And I understand these are all ok emotions to have as long as I do not sin in them. Listen, I know the stuff ok. I know it. And I'm not asking people to even go the opposite where they tell that this sucks (I already know that), or that next year will be so different (I know that too) or to take things one day at a time (I do that).

I don't know what I need from people right now. I don't know what I need. I don't know how to be a good mother right now (And before you tell me that I am, somewhere in the back of mind I know that too, I just don't feel that way right now). I don't know if I am very strong right now (once again, please don't try to affirm how strong I am, I'm blatantly telling you, right now, that I'm not, telling me I am only makes me roll my eyes and want to sucker punch you. #truth).

I am trying to find the balance between "I'm being whiny about this" and "this truly has hurt my soul and been harder than I ever imagined". Did you know it's 10 and I haven't been to see our son yet? It is 10 and I haven't been to see our son yet. My feet feel like boulders. I feel chained to this circumstance. I am angry for Blair and for Ellie and especially for my son.

Did you know, I've had friends have babies while we've been here? I had to pray through a lot of things. The unfairness of it all always came unbidden when these precious babies were born. Oh, you were home a week after birth, that must be nice. Oh, your child isn't struggling with pain because they had their chest and sternum cut ok, how wonderful for you. It was a cycle of hurting for my son and being happy/angry with them and then feeling guilty again for being angry that other people aren't struggling.

I don't even know why I'm even telling anyone about all that. I don't even know what I'm writing right now. Maybe this is some desperate attempt to function better today. Maybe this is some last ditched effort to pull myself up by my boot straps and get to the hospital and be with my son. Do you want to know how real the struggle is?

Really real.

It's really really real.

And that's where I am.

I'm just in the middle of a really big struggle.

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 Six: "I Hate Some Chapters"

I am wondering how to accurately describe a feeling. How to tell you about hugs and family and love. If you've never known what it is like to love without hindrance or conditions my heart goes out to you.

There are so many things right now that I want to record. I want to write down. The way it felt to see my brothers, to be hugged by them, how it felt to be near my older sisters, all of them, the amazing love and grace Blair and I were shown all weekend. I want to tell you all what it was like to watch my family, my favorite people, all be in a room looking at our son, who years ago, wouldn't even be alive. Some of them cried. I didn't, not really, I was to excited. I tell you I have never had an audience while changing a diaper until this past Sunday!

Saturday my family was celebrating my amazing younger sister graduating High School, we paused to take a family picture. We were all there. Except Dean. I went inside and was talking to my mom.

"What's wrong sweetie?"

Moms know man. Moms know.

I wanted Dean home this weekend. I didn't want him at the hospital. I have never struggled with him being there like I have this last time. I have struggled to go into the hospital. Struggled to stay in his room. Gone back home more than I normally have. My heart was angry and hurting and longing for the freedom that we had at home. Frustrated that I spent two weeks without Blair, getting to know our son, and before he got to come home and do that, we were back in the hospital. I didn't want my family to have to plan how we were all getting to the Hospital in DC, I just wanted to drive over with our boy. To spend the whole day with his family, to get to know them. I just needed to lay my head against her and have a moment to cry, to grieve for the life that my son is missing while he has to heal.

I want the doctors to be definitive. I wanted answers last Monday. I wanted them to tell me a plan and stick to it. I was angry at them. Frustrated. Annoyed because it felt like they were not giving me answers. I watched Dean turn blue last week and then start breathing incredibly fast and I had to sit and watch and do nothing. I told the doctors at Rounds the next morning "This is not ok, I need answers. What are we going to do." It is agreed that we are going to look to do the next surgery soon. Tomorrow the doctors and surgeon have their big pow-wow and decide WHEN.

I want them to do it. I want it to go smoothly, because I want to be back home. For good.

I am telling a story. Dean's Story. Ellie's Story. Blair and I's story. All these chapters.

I was thinking today about Chapters in books, how some you love and you are sad when they end. How there are some that you hate and can't wait to get to the end of them.

I'm not a fan of this chapter. My reserves feel shot, weary once again. I keep trying to "fill my cup" and believe me, seeing ALL of my siblings together CERTAINLY gave me enough strength for the week...but I will be glad when this chapter of our story ends and we get to the next one.

Pause: Facts versus Feelings

Today I sat in the parking garage for thirty minutes before coming up to my sons hospital room.

I sat and tears just poured down my face. It felt like my feet just wouldn't/couldn't move. All of my will power was just drained. The thought of getting out of the car and into the elevator and up to the lobby and walking to his room just felt like stones on my chest.

Do you know what it's like to not be able to breathe?

It was that feeling. All the sudden the world was too big and his heart was too small and I was just stuck here, in a dirty dark parking garage in my car, crying.

When we're here, he doesn't feel like my baby. He doesn't feel like he belongs to me. The bars on his bed feel like a cage, keeping him in and me out. It's not truly that way, it's just how it feels. Which is why I don't stay there, in that feeling. Because it is only a feeling. And facts, sometimes, outweigh feelings.

The fact is, this is where he needs to be. Not just that he has to be, but needs to be.
The fact is, we knew this was a possibility, a reality. We accepted that.
The fact is, we got to go home for two+ weeks total, and some babies don't get to go home ever.
The fact is, I don't have to like this, I just have to show up. Even if that means I take too many walks. Even if that means I spend an hour in the cafeteria slowly eating my food. Even if I have to sleep some where else at night.
The fact is, my son knows when I am in the room, he knows my voice, he knows my face, this is enough.
The fact is, this year is going to be hard and difficult and rough, but it is only one year. What is one year compared to Eternity?
Facts.

I have to deal in facts when the bad days come rolling in, one by one, waves that crash into my heart. I tell myself, one day at a time. One more day. Each day has added up tenfold and felt like one more day of pain. Every time his heart races, so does mine. Every time he drops his oxygen saturation levels, I find it harder to breathe myself. His heart and my heart, connected in ways that only other mama's who have heart babies will understand.

They poke and prod him. Temperature checks when he was sleep, blood pressure cuffs that piss him off. When he was sound asleep. Nose cannula on his face and stickers on his chest, measuring, monitoring everything. Watching closely.

What choice do we have? To go home and wait? To watch his color change at home where there is no extra oxygen to put him on?

Our life now. This is our life. My head has accepted this. My heart still hates it.

If I could give him my whole heart and take every needle, every surgery, every day spent inside these four walls that are becoming home, I would.

I wouldn't even think twice.

My adorable little Gimpy Heart Baby. My precious son.

I wish I could give you my heart.

Part Two: Chapter Five: "I Can't Give Myself Grace"

I am waiting for nine thirty. At nine thirty I can give Dean his Flecanide and then curl up in bed next to my little snuggle buddy.

Ellie watched too much TV today. No one, including myself, got dressed today. We hung out in our pajama's. At one point, Dean was asleep and I was falling asleep on and off on the couch while Ellie "watched" (I use that term loosely, there were many wipes lost to this 30 minute time period) Daniel Tiger and Masha and the Bear.

This weekend one of the pastors at our church came and took care of the yard for us. It is no longer a jungle. It is amazing to see people physically being the hands and feet of Jesus. I am trying to wait patiently during this time...because I want to one day help others the way that we have been helped. It feels awful not being able to give back. Seasons. I remind myself this is a season.

I am learning what it truly means to give yourself grace. What I've found is that I suck at it. I don't want to give myself grace. I don't know how to. Which is why I rely so heavily on my Heavenly Father. The grace I could "give" to myself is crap. The Grace He can give me is infinite and glorious.

His grace knows when I am at the worst point in my day. When I look around and think of the million things I wish I could do. When I look longingly at my "art corner" and wish I could work in an art journal, or a painting, or just sit there in general. Alone. My heart in these times is selfish and self-seeking...

His grace meets me when my son wants only to be held and I remind myself how for a month straight I couldn't hold him and it hurt my soul deeply. Grace happens at the crossroads of "this is what I wanted" and "this is your reality". It allows me to listen to my sons crying and remember that he was silent for so long. There are blessings in his screams.

Grace rubs my back when I am changing yet another diaper, Ellie kicking her feet in the air, running from me because she thinks its a game, the only one I have "time" to play with her. Grace knows that I feel guilty for not doing more with here and for her. As though I am trying to catch up on 70 plus days where I was without her. As though I can take back the months I missed seeing her grow. When my mom understands the way she talks more than I do.

In the middle of the night when my eyes are heavy and my heart is missing Blair and Dean is screaming yet again and I don't know how to help settle him, Grace finds me, hugs me, tells me that yes, dawn will come. We will make it through another night. It tells me that I am not a bad mother...this is whispers frequently and lovingly to my wounded mama soul.

I cannot give myself grace. I do not have the mental capacity nor the fortitude to do so. I am too tired. I am to concentrated on making sure I don't hurt my little girls heart by being to abrupt with her. By dismissing her needs...when she so clearly still needs me. Finding the balance between my two children, especially given Deans heart, has been challenging and trying and daunting and exhausting.

And it has been beautiful. To see him look up at his sister and stop to study her. To see her pat her lap and ask for her "Deedo". To hear her pray at night for the people she loves, Grammy, Grumpy, Mama, Daddy, Deedo, Uncle John, Kackie, Abbie, and usually Daddy again.

At the end of the day I do what I think every mother does: their best. And sometimes (everyday, really...) their best falls so short of what God intended. As we all do. This is where His beautiful, life saving, soul soothing Grace steps in. A reminder. I do not have to be enough because Christ is enough in me. It is a balm to my soul on these days where I feel I have failed my children.

Do not give yourselves Grace, oh my Mama-In-The-Trenches friends, my struggling to conceive, my first time mama friends and third time mama friends, ASK Him for it. Rely on His Grace. His Grace is not flawed or marred. The price that comes with it is that you surrender your lives to Him. Rest in Him. Find Love and Strength and Grace through him.

Realize that none of us, no matter where we are in this life, can do it on our own.

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 Two: "Bad Day"

You know what?

I didn't have the greatest day ever.

I've been analyzing it, trying to pin point where it all went wrong, why it felt like I couldn't change my attitude. Why I wasn't more grateful, more thankful, more joyful, more patient, more kind.

Here I am 25, with two kids here on Earth, two in Heaven, and I can't figure out why today, I was so angry. Why playing with Ellie wasn't enough. Why holding Dean wasn't enough.

Especially because I of all people should know how fragile having children really is. I should be more thankful, more joyful, more patient, better, right? In my head at least, yeah.

Ellie spilled a bottle of milk that I'd just pumped today and I yelled at her. Dean got incredibly fussy and I just thought in my head "Will he never stop crying?" Blair asked me if I had any intentions of going back out to the kitchen to finish dishes and I wanted to leap at his throat and kill him. I'm not saying these things because I'm proud, I'm just telling you this is life. This was my day.

How many others had days like this?

How many others felt like they failed because they didn't "love the little moments" or be "thankful to be holding their kids" or "find joy in the mundane things"? How many moms wondered what was wrong with them for wanting to pee alone? Or for wishing they could go back to the days before they had kids so that they could just sit somewhere and not think? How many moms felt like they failed some crazy expectation that they are supposed to have it all together?

Look, I'm not some super mom just because I have a little gimpy heart baby. I wish I could tell you that I stare lovingly at Dean and think "Oh thank you Lord"...while I still do that, more than often I think "Kid, what in the world could possibly have you THIS upset?!" I wish I could tell you that I am great with Ellie and help her learn and do things...most of the time I have days like today, where we watch ten to many shows on Netflix...

People keep asking me how I am, how we are doing. The answer is always the same. Some days are better than others.

Life has become chaotic and hectic and scary. It has become harder and rougher. Blair and I have less time for one another and we can pretty much forget having time to ourselves, or sleep.

Our new normal is hard.

And some days, we struggle.

And it's ok.

Because we always get up the next day.

Some days that's all we can do.

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."