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. ;)

Chapter Six: "Celebrate the Highs and Pray through the Lows"

Blair and I have a lot time to talk right now. We cover a wide variety of things and a lot of what I start to think about stems from that.

Today we were, of course, talking about our son.

I was asking him if I seemed to pessimistic, and he said that at times, yes, I am. I thought I was being realistic about what all is happening, but Blair just said "Sometimes, I wish you would be less...scared and more trusting." (Maybe not in those exact words, but that's what I got from his tone and as we talked more, I think this was what he was trying to say.)

As we drove home from the hospital tonight I wondered "Is this what Love really looks like?"

Let me back up here...

I didn't think a lot about this time while we were pregnant. I knew in my head that we would spend a lot of time at the hospital. I knew that it would be hard to see my son go through these surgeries. I knew that I wouldn't get to hold him like I wanted, or feed him like I wanted for a while. I accepted it.

But I didn't let it sink in, and I think this, in the end, worked against me.

Here is the truth. Cold and hard and fact: I was afraid of loving my son too much.

Afraid that if I gave my whole heart into loving him he would never wake up. Afraid, every single step of the way, that at some point we would receive that call. The one every parent dreads when they are away from their children. Oh the trust that Mama's must put in others and in God...

It was easier, for a time, to remain aloof, to think in facts, to make light of the good days, brushing them off. In my mind good news was fleeting and I was waiting waiting waiting for something that might never happen. I watched my husband and my family and his family celebrate every mile stone, as small as they might be, but my heart couldn't commit to celebrating with them. It was too afraid.

My sister in law, one of them, texted me the other day. I hope she doesn't mind me sharing this, but it's been resounding like drums in my heart ever since I read it. She said "...It makes me miss everyone more than I usually do but at the same time I feel closer to everyone as we all come together to celebrate the highs and pray through the lows."

Here is my family celebrating every weaned medicine, every open eye, every single bit of good news and here I was, his Mama, holding back. Waiting for the bad. Expecting it. Preparing for it.

Is this what real Love really is?

Committing to the highs and the lows? Embracing every single beautiful moment, moving forward, and truly loosing your heart to another human?

It's still widely thought that love doesn't hurt. Because I'm in a real place and because I can, I'm calling BS.

Yeah...yeah it would hurt to lose my son. Yeah it hurts every time I watch him struggle to cry. Yeah it hurts every time I see his blood pressure go up and can't do anything about it. Yeah it hurt to see him cut open, his heart beating there in his chest, pale, and un-moving except for that beating. Yeah it hurt to not be able to hold him. Yeah it hurt that he didn't move or open his eyes for ten days. Yes. Yes this type of love is so big and so crazy and so wonderful that it hurts.

Tonight I helped change his diaper twice. I...why is it so important and significant that I changed my sons diaper? Because he is my son and I love him and this is the first time I have changed his diaper.

Tonight I rubbed my lips and nose on his precious little head. I sang him songs that I sing to his sister and read my favorite psalms to him. Why is this so important and significant?

Because tonight, I just...I just stopped holding back. I just finally felt like this is my baby and this is his life and yes, yes scary things might happen with him. I just finally opened my heart to him and welcomed him in there no matter how much it hurts or might hurt. I don't want my son to remember all his life that his mom thought he was too fragile to love.

Let me repeat that, more for me than you.

I don't want my son to remember all his life that his mom thought he was too fragile to love.

He got his feeding tube put in today and he got the colostrum I worked and worked for. It just...felt like...Christmas morning and my Birthday and his Birthday and every other significant day ever. It felt big. So so big. And I celebrated and was excited and won't shut up about how beautiful he is and wonderful it is to see his eyes and stroke his hair and rub his legs and to sing to him and hear him calm...

Is this what Love really looks like?

Yeah. Love is celebrating the highs and praying through the lows and opening your heart to the possibility that it will be crushed like never before. It's so big and wonderful that it doesn't matter. It will never matter that my son might end up being the one who breaks my heart or that my daughter could break my heart...children have an amazing hold on their mama's. Whether they are on this side of Heaven or not.

My mind drifts back to Jesus on the cross. It drifts there a lot. His heart, God's heart, broke for us all that day. Sinners everyone. We, as children, have the ability to hurt the Lord like no other and He STILL did it for us, still gave up His life. It is important to remind myself: my children hold only pieces of my heart, my God holds all of it. And He has some strong super glue. With that glue I can love and love freely, no matter what might or might not happen, because the Lord can always glue the pieces of my heart back together and make it even more beautiful.

As we get older...we start to see love in new ways. I just never thought my children would teach me so much. I just had no inkling that my son, this barely two week old baby, would be able to teach me more about love in those barely two weeks than I've learned in three years of marriage.

Love is celebrating the highs and praying through the lows and opening your heart, no matter the circumstances. It's not just children either, husbands, wives, parents, siblings, friends all have the ability to hurt you so deeply that you think you won't be able to bounce back.

I refuse to live with my heart closed to love. Refuse to act like just because someone has the ability to hurt me (whether on purpose, or just through circumstances) that I won't love them.

It's Big and Wonderful and Scary and Awesome. It's Highs and Lows and every step in between.

And worth it.

Love is worth it.

Chapter Five: "Our God is In Control"

I hate that sometimes. I wrote the title and immediately was like "That's such a yuppie Christian thing to say. Ugh Madalynn."

Just because something is said a lot though, doesn't mean that it isn't true. This is truth.
God is in Control.

I remind myself of that a lot, I have to. We have so many ups and downs, I got sick, Ellie has a cold and will not be staying with us this weekend (and I will miss her something fierce), Blair finally admitted how useless he feels...how he was ok with me being sick because it meant he could take care of me.

We gave ourselves permission not to be at the hospital all night. We put our trust in our son's Doctors and Nurses and I told myself all afternoon, "God is in Control." I've heard it said that He's up all night so I don't have to be.

I find amazing comfort in that thought.

Some days, this just...this just sucks. Hard. A lot. More than I can describe unless you've gone through it. Not something similar, it. This. Hypoplastic Left Heart Syndrome. Open heart surgery mere DAYS after being born. Do you know what newborns should do? Poop meconium, nurse at my breast, and make little sounds in the middle of the night that make me smile. They should be crying moving, wiggling, I should be changing his diapers.

My reality: I. Have. To. Wait. And pray and talk to him and rub his fuzzy little head and be away. And I can't plan a dag-on thing. I have NO idea when we get to come home. None. And even when I do find out, I won't trust it. Yesterday he was doing great, by this morning, they were doing an echo because they weren't seeing progress as he should. By this afternoon he was ok. Seriously, what the hell?

We don't go day by day. We go hour by hour.
And we wait. So much waiting.

Look though, there has been laughter. God knew that we would need laughter.

The day he had surgery his godparents came and sat with us. I love them. They crack me up and it was so good to laugh with them during that time of waiting.

Like the time my amazing mother in law and Blair's Mamaw came to bring Ellie to see us. They took us back to Front Royal to get things and boy was it an adventure. We made wrong turns. We got lost. I had to pump in the car, hysterical. I had them rolling. "Oh Hello DC, this is my boob, yup, it's happening, move alone."

Or the night I was just having a bad day. I have this weird thing right now that when I cry, I would just rather be alone. Most of the time, this happens in the shower. Blair knows. He lets me and I love that. I jump in thinking "I'll cry for a little and get it out and be done and move on." God knew that I needed laughter. Basically, with pumping, I had not been emptying myself well enough and had a knot. I worked it out in the shower and then just shot milk for a good two minutes and I laughed and laughed.

Yes. That was a story about me milking myself. You know what? I want my son to know that story some day. Because dude, it's FUNNY.

Wednesday night My amazing mother in law brought Ellie in to have dinner with us, and then she and Blair went to see Deano. When they got back I had given Ellie a bath and put her in her footie pj's. Her pj's don't have good traction. My girl LOVES LOVES LOVES the elevators, she dances in them, and tries to push the buttons. When we all got in to say good bye for the night, she ran and completely wiped out and fell on her bum and hit her head. And the three of us just laughed and laughed and laughed. (She laughed to, by the way)

Yesterday, Blair's voice randomly cracked while he was talking to one of  Deano's nurses. I thought I was going to pee my pants.

Here is why these things are so important: because God is in Control. He knew, he so so so knew that we would need to fill our time with laughter. He knew we would need to allow ourselves to laugh.

I've been thinking about that all day. I was sick and came back early and slept and prayed and talked to people. If I were in control I would have completely forgotten about Joy and Laughter.

My God is so good that He doesn't forget those things.

I've been told how strong people think I am. Suddenly, I feel it. Don't get me wrong, they did their echo today and I was terrified they would "find" something. Being strong doesn't mean you're not scared though. I think it just means that you cry when you gotta (in the shower or wherever) and then you wipe those tears and say ok. Next battle. Bring it.

There are so many people I wish I could thank. So many who have no idea what their kindnesses mean to me. My cousin was here to day, haven't seen that kid in forever, and what did I do? Fought tears and asked to drive me somewhere. Without hesitation he did. (His girlfriend is so lucky to have him...shout to Carter who has actually subscribed to my blog...you are winning, just so you know)(and so is he). My parents, Blair's parents, friends from church, my older sisters, my big brothers...strangers I've never met in person...God is using YOU all to remind me that this is not something we are fighting alone.

God is using YOU all to remind me of His unfailing wonderful Control in my life, in Blair's, in Ellie's, in my Son's.

Literally every time I start to feel discouraged SOMEONE texts me. Every. Single. Time.

I am blown away by God's control. I am blown away by His love.

I am hiding there. Sheltered in His wings. Crying and Laughing when I need to.

I am thankful. More than anyone will ever know for the way this is drawing me close to God and closer to those who love me and whom I love.

DIY Paint Sample Craft, Ok Sure!

Hello People, I'm not dead yet. But look, it was Christmas time, we all know how that is! Granted I had some down time, but I used a whole bunch of that for Crafting! So today, I bring you your very own Craft DIY yourself blog post from yours truly! You should also know that this is not the only one that you will be seeing here!

So today's project was done on the first Snow Day, and it was all done with things I just happened to have laying around my room. The first thing I had laying around? Paint Samples.

So after searching the internet for forever, I decided to use them to make a picture for my house that said "Ok Sure" because when a certain someone asked me to be his Bride, that's what I said (articulate, right?!). My 15 year old little sister thinks this is hilarious, therefor, I needed to have it somewhere in my house. So I grabbed a cup of coffee and went to town. 

Great coffee cup, right?! Ha!

What I did was cut out circles. Big circles and then smaller ones. And then I started to combine colors. I'm not a really good craft planner, so most of these were just hap-hazard, and I wasn't really going for a color scheme. If you are more OCD (like my Beloved) I'm sure you could spend hours getting just the right color combo! Me however? I just threw them together. I did place them together BEFORE gluing them down (this was a big deal for me ok people!) It started to look a little something like this:

I used clear glue just because it was there. In hindsight, using a sturdier paper would have made for less wrinkles. After I got the circles glued together, I started placing them on the paper where I wanted them.

After I did that I used several green paint sample chips to make the letter Ok Sure. I glued those onto OTHER paint chips and THEN I glued them down to the paper. The final product looked a little something like this:

I had a lot of fun with this project, and the glue and frame and paint samples are all FREE! And if you really needed a frame, the Dollar store has some good ones! 

I'm excited to get to hang this somewhere in my house. I like the idea of making things to make my Beloved and I's house look like our home. I'm learning the difference. He likes the idea of me making things for OUR little house. I can't help but smile at all these wedding pictures I see where the bride is holding a sign that said, "I said yes" or the groom is holding a sign that says "she said yes". 

Me, I said, "Ok, Sure." :)

And I'm so glad that I did. 

The aftermath!