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.

Sweet and Sour

So writing basically doesn't happen now. There is literally always something else to do, some one else to hold, another chore to be done. Someone is always crying and I am always exhausted.

I've thought about fifty million things I want to write about. I'm never sure what exactly is ok and not ok to talk about. I wonder if I am sharing too much, who actually cares, or what purpose writing serves. The truth is that for me to sit and formulate words here, it has to be worth my time.

Raising our son is exponentially harder than I ever possibly imagined. It goes far beyond his medical needs and to his very personality. He is a tough baby. Everyone sees him and comments how cute he is, how chill he seems, how nice it must be to have him home. Blair and I talk frequently about how much "easier" it was when he was in the hospital. He is demanding. He is particular. He is loud. He goes from "I'm ok" to "Holy crap should be go the ER because he's screaming so much?" Often people don't understand the depth of this. Because when we go out, to my parents or to other places, it's almost like he puts on an act so people thing I'm crazy for saying how awful of a baby he is.

But is he awful?

It is incredibly hard for me not to compare him to Ellie. When Ellie was a baby she was doing, or she did this or that. She had teeth by this age. She was still nursing. She would smile and laugh at us. Dean likes to be held (sometimes), he likes his own bed (sometimes), he wants a bottle (sometimes), he likes the swing (sometimes). I'm never sure what he really likes, it changes so often.

There are days where nothing I do consoles him and screams at the top of his lungs for up to an hour. I am afraid to go places and do things because I never know what his behavior will be like. Watching my rambunctious and adorable two year old while juggling him and his supplies and bouncing, rocking him to keep him calm is exhausting. If I don't have an extra set of hands, I rarely go out.

I have never felt so isolated in all my life. My list of places I do are very short. We go to Grammy and Grumpy's house, because he will tolerate my mom, and Ellie can play to her hearts content. My mom thanked me the other day for coming over...I'm not sure she understands the depth of gratitude I feel that her house is a safe space for us.

I do not to go to peoples houses. I do not go to parties. I do not commit to anything. Everything is a maybe and sometimes I have to say, "Hey, not today". Rarely do I make plans. And if I do, they are often changed. It is easier to just stay home and wait until 9:00 to do our grocery shopping than to even attempt it by myself with both kids. Rarely do I go to sleep before 9:30 and always I am up by 5:50.

All the sounds like I'm complaining.

I'm not trying to. I'm trying to lay out for people how insane I feel most days. Shoot, most mothers do. I'm no exception. But I have to be reminded from other people that what we are going through is a little "beyond" what most go through. I forget that sometimes. I forget that about our son.

It scares me how easily I get frustrated with him, because he's a baby. It scares me how easy is it to forget what he looked like when he came out of surgery, because it was scary as hell. It scares me that I lose patience with my children, who are innocent and don't know about anything but Mommy being mean. Ellie tells me "I sorry" now, when she bumps me, or spills something, or does something silly.

I love our son. I fight and advocate for him every day and will continue to do so. I always will. Letting that fierce love live side by side with the frustration I feel when I can't calm him down, is a hard hard pill to swallow. One minute I'm staring at him, realizing he's been alive for six whole months, and the next I would give anything to be able to sit in my underwear eating cereal pretending I don't have a son who might one day need a heart transplant.

Many days, I long for silence.

It is hard not to slap a label on him. Awful baby. Crazy baby. Psycho baby. I've called him the Devil once or twice too, I won't lie. Colicky. Lord Jesus...he is the type of baby I feel kids in high school should see. If they did, they'd never have sex. They'd be way to scared.

And yet...he is such a blessing. I couldn't imagine life without him. Couldn't imagine Ellie asking for anyone else first thing in the morning.

Life right now is sweet and sour. And I'm having a hard time surrendering the dreams I had for myself and for my kids. I'm having a hard time putting aside selfishness. I'm having a hard time being content. I'm having a hard time seeing "this is only a season." I'm having a hard time being gracious to people, I get frustrated easily, annoyed and jealous more often than I'd like to admit.

And yeah, I could end this on a "And that's why I give these things to God" note. But here's the deal, I do give these things to God, but...day to day living? Yeah. Sweet and sour. The sweet moments don't last long enough and the sour moments feel like they are never ending.

Young mothers are told constantly "you will miss this".

From the depth of my heart, please, here my plea, and stop freaking telling us that. We are exhausted, covered in poop, behind on our chores, behind on showers, feeling more like "Mom" and less like we have an actual name every single day. Yes. We will one day have grown up kids and we'll be like "Awe we used to change diapers and snuggle". But in the middle of a storm, sometimes all you need to hear is "Yeah, I remember that, it sucked." So yes, I'm so freaking excited for the day both my kids can pee and poop on their own. I'm so freaking excited for the day that accurately communicate their feelings. For the day that I can tell them I'm going to pee alone. Or at least shut the door because I know they won't kill themselves. I'm looking forward to those things. Let me. Let us.

I'm learning the sweet and sour way, frustration and love all wrapped up in one five minute span.

Anyways, Ellie needs to get down from her high chair and Dean needs...well, hell, I'm not even sure what he needs now. Hopefully I figure it out though because if I don't, I'm looking at about an hours worth of pure screaming.

Bring. It. On.

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.