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.