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.