Chapter Seventeen: "Let your Fear live side by side with your Joy"

I wish there was a formula for when I am going to have a bad day. I wish that I could wake up and know that today I would have to fight harder to be joyful. I wish that could battle better, hold onto the Promises more, take up my armor willingly.

I don't though. Some days I wake up and I think "what's the point of even going to the hospital?" Some days I wake up and want nothing more than to crawl back in my bed and stay curled up there. Some days by the end of the night, I would love nothing more than to say "I've pumped enough, I don't have to wake up every three hours tonight." Some days I want to shut out people...just like my son shuts his eyes and shuts down, that's what I want to do.

I don't know what happened yesterday but it was a day for me. I slept through alarms, messed up my pumping schedule, and when Blair tried to cheer me up I shut him down. "Oh. Sorry..." he said to me through text when I told him that his attempt to cheer me up really wasn't working. I didn't want to go see my son. I just...wanted to lay here in bed, pull the covers over my head and forget. I didn't want today to be happening. Didn't want to face the new challenges. Didn't want to go and hear more of the same...again and again. I couldn't find the Joy. And I was just Afraid.

We had so much information yesterday. It was the first time they even mentioned what we would have to do to get home. Feedings and tubes and trying to nurse. How if he puckers his lips shut that I should just back off because we don't want to do to much to soon. How he threw up while I was holding him, face red, gagging and retching. Have you seen a baby throw up? Not spit up, throw up? I hate it. It always freaks me out when he does that...I know how that feels. I can't do much but hold him and talk him through it and let him know I'm there. We talked about how before Blair and I can bring him home, we have to learn, well, how to do CPR. Just in case, the nurse said.

Just in case...

In case his heart stops, even after we get home. In case his oxygen saturation levels plummet. You know what I thought yesterday? What happens if we go home, and I have to rush him to the ER and I have Ellie and Blair isn't home? I have to plan for that. This is my life now. This isn't over. This won't be over for the rest of my life, this is the rest of our lives.

Yesterday, it was hard to find Joy.

I was annoyed and grumpy. I was cranky. I was hurting. I was sad. I was angry. I wanted to cry and scream and throw things and break things. I wanted to go home. Bu nott home home, back to this one room where we've been living for the past two months. I just wanted to lay here. I just wanted to cry. I considered calling my Mommy...because all the sudden, everything felt like too much, too big.

I couldn't find the Joy.

As the day wore on...we changed some things, talked to more doctors, more nurses. Waited and watched. Cuddled. I learned how to give him a bath...which is a whole new thing in and of itself...it has to be done a certain way because of the scar that goes down his chest. I put him against my skin for the first time, on my chest. He is seven weeks old and he doesn't know what it feels like to lay against his Mama's skin.

I am still very afraid. I don't know when I won't be. I don't know that I will ever not be afraid. An infection could put your kid in the hospital, it could kill mine. It is hard not to think about the future without a lump in my throat. It is hard to think of next week without my heartbeat speeding up. Every day feels like a bandage being ripped off. Every day I have to pick up the armor that I've been given, tell God that I trust Him and I have to fight.

And some days, that fighting is hard for me.

I wish I could tell you that something happened and my attitude turned around and I found the Joy yesterday. I didn't though. I just was negative and quiet. I thought I was going to go to bed with all these feelings pent up in me, an angry storm.

When Blair got to the hospital yesterday, he gave me a letter someone had sent me. "Let your fear live side by side with your joy" they wrote. "You are a joy filled person- keep that part of you even with the fear in your life."

It felt like I was being given permission to have a bad day. To recognize the fear and embrace it and give it over to God. It felt like an admonishment. Find the Joy, and when you can't- Look Harder. It felt like being told that it's ok to cry when I hold my son because he is so so so beautiful to me, and this is so so so scary.

I've wanted to go home with my babies from day one of his life. I want him and Ellie to meet with everything in my being and I want just one. One picture of the four of us together. It feels like every time one good thing happens, I'm ready to move to the next one. I can hear him cry, now I want to hold him. I got to hold him, now I want to do skin to skin. I got to do skin to skin, now I want to nurse him...it is hard to stop that thought process and remember, each thing is it's OWN Joy and I can WAIT in that. Bask in that. Stay there for a moment. Hold down the fear and anxiety with what is happening NOW and how NOW is good.

Fear and Joy are holding hands right now in my life, walking with me through this.  There is not one without the other, though I so wish that I was living without the one.

My reality. My life NOW.

There's a Need to Breathe song with the lyrics that say "God of mercy/Sweet love of mine/I have surrendered to your design". This has become a prayer and plea. That I could surrender to THIS plan. Partly because, I don't have a choice now. This is my son. This is his life. This is what we have to go through to give him Life. Every time I see his scar I am reminded that for him, life came through the knife. It just looks different for him. Which means it will be different for us.

Today. I am going to look harder. Because yesterday I was just blinded.
I will try again and again and again and again.
I will look harder, longer and then I'll stop there when I find it.
Because I don't know what else to do some days...