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.

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.

Chapter Twelve: "There is Glory and a Story"

Tonight I started writing this in my head while I went down to get our laundry from the dryer. I talk to myself when I do this. I probably sound crazy. Most of the time what I talk/write to myself never even gets written out. I usually end up taking a whole different angle or don't even write what I was thinking about.

So what have I been thinking about?

This is long. This whole healing process is long. My son takes a long time to heal. Blair and I joke that he will be our pokey child. I'll tell Ellie and Dean to get their shoes on and Ellie will be in the car honking the horn ready to go while my son sits and cries because he doesn't know if he wants to put his left show on or his right shoe on first. He sets his own pace and his pace isn't quick enough for me.

I feel like I am chomping at the bit...and at the same time, I feel so guilty about stuff.

I feel guilty that I don't call the nurse twenty times in a night, especially when I get up to pump.
I feel guilty for thinking about quitting pumping, I hate it, I hate it so much, but know that this is best for my baby boy. So I keep going...
I feel guilty when I don't go at 8 AM every morning to go see him.
I feel guilty for forgetting the medications he is on and all the things they have done for him.
I feel guilty that I don't ask more questions.
I feel guilty that I don't stand by his bed for the hours that I am at the hospital with him.
I feel guilty when he cries while I pump, that I am not there to calm him and the nurse has to.

You can tell me I shouldn't feel guilty, but I still will. I will still have to work through those feelings. Slowly offering them up to the Lord. This is all I can do.

I don't have much to offer right now. I don't have time to help others, I rarely respond to people who I know care deeply, I feel like I'm sucking at keeping people informed. I'm not talking about the general public, I'm talking about family...at the same time, I feel like I text and tell them too much and they get annoyed with me...

We are in a terrible state of limbo right now. Caught between he's not just out of surgery and he's not out of Critical Care yet. It's an awful place to be. Some days he does well, some days he has small set backs, some days the changes they make for him are so small I have to slow them down to make sure I caught what they are doing. It's infuriating. Then I have to relay those things to Blair, because that amazing man is still working 40 hours a week, and he counts on me to tell him what our boy is doing. Sometimes I forget. I feel terrible when he comes and the nurses tell him something that is new for him but old for me. It embarrasses me.

I go through a wide range of emotions right now. Crazy things throw me off. Finding out they would fortify my milk with formula threw me into a funk last week. (That's a whole post in and of itself...) I meet a million doctors a week it feels like, all of them telling me new things about my son. Like they are watching his bilirubin levels because he was getting jaundiced. Found that out today. Or that he is STILL going through withdrawal from his medications. He was sedated for so long...so very long. He finally gets to be a "normal" baby now and they are trying to help him "catch" up.

Information. Overload.

I have to be so careful about my heart and my head colliding. I have to daily come to Jesus and lay down these things. Because this is hard. Especially because this is hard.

We have, in general, come to believe that if something hurts or that because its hard that we have this excuse to sin. That because this isn't fair, because we are sleep deprived, or someone we love hurts that all the sudden we can say or do or think what we want.

Can we though?

My son hurting is not an excuse to be angry at God. It is not an excuse to be mean to Blair or Ellie or my family or anyone for that matter. It is not an excuse to forget that my friends are hurting and might need a listening ear as well. It is not an excuse to withdrawal and let my Bible collect dust. It's not an excuse to be a jerk.

I am very careful about where my heart is when I talk to people about what we are going through. While it is hard and scary and there is so so so much unknown, sin is still sin. Worry is still sin. Self-deprecation is still sin. Hurtful words are still sin. Complaining is still sin.

It's not that I'm not talking about how I'm feeling (hello, I have a blog, I tell you guys a lot of stuff) I'm just trying to be careful about where my heart is when I do. And if I haven't talked to God about something, shouldn't He be who hears my feelings first?

Look I talk to God at three in the morning when I'm Zombie pumping next to my semi-asleep husband. I let Him know how much I'd rather be nursing my infant son and how much this hurts (physically now, I'm not even talking about the emotional part of it)(also, yes, I talk about pumping, because exclusive pumping is new for me and different and I still wish I were nursing my baby boy). I talk to God about how I hate that I'm not going back to work, but know how unfair it would be to my boss and my co-workers and mom. I talk to God about how I can't even think about next week...Blair tried to talk to me about me working from home and I almost lost it. Next month feels so far away and unattainable. I'm glad Blair can think about those things, one of us needs to.

There is a balance that I am working on finding. Between sounding like I'm complaining and simply explaining what is going on in my head and heart.

My son's heart surgery and recovery is not an excuse to sin. It is not an excuse to worry or forget God's promises.

I repeat 2 Corinthians 4:17 to myself like an anthem right now, "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison." I mentioned that verse the last time I wrote I think, and here it is again. I write it everywhere and repeat it. Reminding myself that there is Glory at the end of this epic battle my son is fighting. There is Glory and a story and love and grace and the opportunity to offer hope to others.

There is no pain or hurt big enough in this world that God can't handle our lives. So using it as an excuse to sin is a cop-out. I'm not ok with that. I'm not ok with just getting by and saying "Oh it's ok right now because things are hard." Things will always be hard in someway.

I want my life to mean so much more. I want to not just get through this, but to overcome it. I want to be a Conqueror! I want to be MORE than a Conqueror! Gosh darn it...I've gone through too many "hard" things and used them as an excuse to be a jerk. In loads of ways. And especially to my Heavenly Father.

And I love Him to much to do that. And I love my kids and my husband too much to do that. I want my son and daughter to know that no matter how they are hurting that sin is sin. But it doesn't have to be that way. We don't have to balk against the things this world throws at us, we just have to accept that Christ is there to see us through.

If I want them to learn that, it starts with me.
So this is me. Not using my hurt and pain as an excuse.
So this is me. Accepting that Christ will see us through this.

Are you?

Chapter Eleven: "The Hardest Thing"

Want to hear something hysterical?

When I was 15 almost 16, I thought the hardest thing I would ever have to do was to move from where my family lives in Virginia Beach to where we live now. I thought I wouldn't survive it. I thought I would hate my parents forever.

When I was 19 going on 20, I thought that the hardest thing that I would ever have to do was to get through college and figure out what I wanted to do with my life. I thought I wouldn't ever know "who" I was and I spent a lot of time figuring that out, and not always in the best ways.

When I was 22, I thought the hardest thing I would ever have to do was find a man who would want me after all the crap I had done. I didn't think it was possible for a man to love me. I made fun of those who tried. I gave up when I realized Blair actually did love me.

When I was 22, I thought that the hardest thing I would ever have to go through was losing a baby at nine weeks. I thought my heart would irrevocably break and I wouldn't ever be able to function again. I spent months crying and asking Why, and forgetting God's control. I was terrified when I found out we were pregnant with Ellie, convinced that if "it" would happen again, I'd never recover.

When I was 23, I thought the hardest thing I would ever have to do was to survive the birth of my daughter. I thought that I would never feel like me again and thought that Blair and I would never be "us" again.

When I was 24, I thought the hardest thing I would ever go through was a second miscarriage. This one I would push down, hide my feelings, run away so that I didn't have to feel. I felt jaded, cheated...this had already happened once...I couldn't wrap my brain around the fact that it was happening again.

Now. Here I am at 25, with a month old son still in the hospital after he had open heart surgery.

Why is this hysterical?

Because each of those things were the hardest things when I was going through them. Each thing stretched me and pushed me and amazingly, I got through EACH thing. Regardless of that fact that I thought I never would. Looking back, I realize how short term each of those things were. How temporary. How amazing. How God used those things to shape me into be more like Christ. How I grew.

"For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison". 

-2 Corinthians 4:17

The days have dragged on for us. Each one blending into the next. I cannot believe we've been here for a month. I cannot believe my son is a month old. I keep thinking that the "hard" parts are over only to get slammed with another hurdle we have to overcome. Another hurdle my son has to overcome. Some days, man does this get to me. 

Monday was so rough for me. I'm not sure where my heart was or my head were, but it wasn't right. It certainly wasn't focused on the Lord. I felt defeated, scared, frustrated, and weary. I crawled into my husbands arms and he held me while I cried, while I told him over and over again, "I just wish we were all home, I just feel useless, I just want to take this from our son." 

In those deep secret moments it is hard to remember that this is a light momentary affliction. It is hard to remember that one day, something else will come into our lives and I will think, "This is the hardest thing I've ever gone through." It is hard to remember that one day I will look back on this and see God's hand through it all, not that I'm not seeing it now. 

In the midst of the storms though, we often forget that sun light ever existed. 

It does though. 

Already I am seeing God shape me. Already I am seeing God use our son's life to touch others. Already I am growing from this experience, in ways I never thought possible. God's glory is profound and will not be stopped. I see it. 

Seeing it and feeling it though are two different things. 

I am fighting every day to make sure that my heart and head collide, and when they do, I make sure that the Truth is there. I have to or else I'd go mad...

When I think of how I felt that summer I was 15...I laugh at my younger self. How silly...to think moving would break me. I want to tell my fifteen year old self, "Just wait, ten years from now you will watch your child struggle to hold onto his very life...shut up and move. You're fine." At the same time...for me, then, it was the hardest thing I've done. I needed to go through that to know how to process my emotions. Do you know what I did then, to help myself cope? I wrote, painted, and colored. 

Do you know what I am doing now, to help myself cope? I am writing, painting, and coloring. (Seriously...I hand out coloring pages to his nurses all the time...they think I'm a genius and I let them think that...) 

My point is...life is hard. We go through things that we think we will never make it through. We struggle and cry and rage and have good days and bad days. We think our hearts will break and never be whole again. We think that we have nothing left to give. We think that we are at the end of our strength. 

But...we do make it through. We do survive. We do love again. We are made Whole. We do have more strength than we could ever imagine. 

On the worst days here, I repeat that verse to myself. Light. Momentary. 

The Glory that this little family will see at the end of this...all I can hope and pray is that we bring people closer to Christ. We share our struggles and joys and I share these thoughts and emotions. Don't miss what I'm saying. Don't miss Who is getting me through this. Don't miss Who is healing our son. 

This is hard. As of right now, it's the hardest thing I've ever gone through. 

So I can't help but be on the edge of my seat to see what God will ask of me next...

I can't help but wonder...will I ever think back on this time and think "Man, that was nothing compared to this!" 

Maybe. Maybe not. 

All I know is that I wasn't promised that it would ever be easy, only that He would walk with me through it. I take a lot of comfort in that. 

Chapter Eight: "Let There Be"

Imagine there is nothing. Just, nothing. No sun no light no dark nothing. No time.

But there's God.

He's there and He decides He wants to make stuff. Loads of stuff. Atoms and Giraffes and Bears (even Teddy Bears) and Hair and Sun and Air and Nitrogen and Balloons. He simply speaks and everything that we know to be, is. Because He says so.

When He did this, He saw everything.

He saw so far forward into the future that He saw a little tiny baby boy whose heart maybe needs a little bit of help. He saw how much that little baby would struggle, He knew that baby wouldn't survive without some help. So He started a Chain of Events.

First He made medicine and x-rays and hospitals where people with compassion decided they wanted to take care of other people. Then He made microscopes and gave people the talent and drive to figure out how to cut into people to help fix them. He knew that sin would be so crazy in this world that it would eventually affect our bodies and He wanted to help. So He sent people. Doctors and Surgeons and Nurses and Technicians and Janitors and Policemen.

Born to this world was a little girl, who grew up to be a woman, who went to school to be a doctor, who started to look at hearts, who started to look at little kids hearts, who meets moms and explains "This is what we found, this is what we can do."

Born to this world was a little boy, who grew up with younger siblings, who struggled to know who he was, who was lost for a little while, who met a girl who fell in love with him and he decided he wanted to be a man and they got married, and had a baby girl and then found out they were pregnant with a baby boy and that baby boy would have one ventricle in his heart.

God set it up. Boom boom boom, like a bowling ball, He set up the pins and set in motion what is happening right now.

He did this on the very first day that He created the world. He said "Let There Be" and there was.

There was light and dark and fish and birds and animals and grass and trees and science and math and time and day and night and there was Dean Blair Jaques V. Right from the very start of this world God was writing my little baby boys story.

How freaking cool is that? 

Pretty freaking cool.

Chapter Seven: "Dear Ellie..."

Dear Ellie,

This is as much your story as it is your little brothers. You don't know this, but you are giving up so so so much so that Daddy and I can be with him. You won't remember so I want to tell you, because it is important.

You are such a little girl. So tiny still. I feel like your little brother will take very much after the Carrigan side of things, as you took after the Jaques side of things. He might outweigh you pretty quickly. You will always be the big sister though. You will always have 20 months of life on him and trust me, that 20 months will go a long way at some point.

Don't forget that I had you first. Don't forget how precious those 19 months of just you and me and Daddy were. Don't ever, even for a minute, think I don't love you as much now that you have a brother.

My heart grows to hold both of you, in big big ways.

I want you to know that people love you. Uncle John and Aunt Kackie who watched you while I was in labor, giving up their Super Bowl Sunday to come take you. Mimi who flew all the way from India to meet your brother and to be here to play with you...I can't tell you how wonderful it was to know that you were with her. That she was with you. Grammy and Grumpy who might have you for a month or two while we wait and see how baby brother does. All of these people love you, so much.

None of them are Me though.

I feel guilty Ellie. I feel like less of a Mommy because I can't do everything for both of my babies. I miss you during the week in the worst ways. I'm terrified I'm going to annoy Grammy because I ask after you all the time. I'm terrified that she will resent having to look after you for weeks while I'm here at a hospital. (She assures me this is not the case...but she's your Grammy, not your Mommy, and I don't want you to ever forget that). (So for now, it's fine that she gives you ginger snaps with whipped cream).

I have to fight every day to remember that this is what God has given us. I have to fight every day to remember that in Christ I am enough, and I want to fight, because I want you to know that. You are loved. You are enough. You are strong. You are beautiful. You are kind. You are a Daughter of Christ and His love for you is BEYOND what I will ever be able to tell you.

But if I don't believe those things for myself, I know you will never believe them for yourself.

So I fight.

We're fighters Ellie. We come from some strong women, women who have been through the ringer and come out stronger on the other side.

You and me, girlfriend, we're going to come out stronger from this.

I'm going to ask so much of you one day, especially when it comes to your little brother. I'm going to ask you be kinder and gentler to him. I'm going to ask you to protect him and watch out for him on the bus and while you guys are at school. I'm going to ask you to take care of him when I can't, and I'm going to ask you to stick up for him when I'm treating him like a fragile baby doll. He's not. My head knows this, but my heart doesn't yet. Be his Big Sister. Stand up to me sometimes too.

Already you are giving up so much time with me and Daddy. Already you are making sacrifices of love, already you are showing your little brother how much you love him, simply by letting me and Daddy be here while the Doctors fix his "owies" as you like to call it. Already you are strong and teaching me to be strong. Already you show me so much compassion when you snuggle me while I cry, just because I have the privilege of holding you.

We are going to argue one day Ellie girl. We are going to fight and scream and be so so angry at each other. I might not like you and you might not like me. In fact, I promise that we won't like each other for a while. I also promise that at the end of the day, there is nothing you could do that would make me love you less. Never. My Mama said that to me once and I will say it to you, because it's truth.

You won't remember the long weeks without us, you won't remember the Facetime calls or the Skype Dates. You won't remember the tedious car rides where you tell me "ow ow ow" just because you want out of the car seat.

You won't know that I cried the other night because I just wanted to be home with my babies, you won't know that my heart hurts every time I had to leave you.

You wouldn't know any of this, unless I told you. And I want to tell you Ellie girl.

Because your brother is fighting a battle. Because you and me and Daddy...we are all fighting a battle.

And without you, you brave strong beautiful little girl, we wouldn't make such a great team.

Deano's story is your story too Ellie.

Don't forget that.

Love,
Mama

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.

Chapter Two: "I'm scared Daddy"

I keep thinking that we've reached the hardest part. I keep thinking, nothing can get harder than this moment. I keep getting proved wrong.

Yesterday there was a lot of waiting. We started our morning at 7:00 AM. I sat in a chair and held Deano (newest best nickname, I've been using it, it's totally sticking, will explain it later) and kissed him and played with his toes. Blair held him too and gave him kisses.

We walked with our son to an elevator and they took him down. We took our infant son and gave him to people who we were trusting to take care of his tiny tiny heart. I cried when we said goodbye, praying that it wouldn't be the last time we saw him.

We walked back and got ready for the day. Decided to go get breakfast. We ended up spending a lot of time in the cafeteria, holding hands, eating food (so much food), and of course, reading.

We were given this pager that could give us updates. We knew when he went into surgery, we knew how he was doing, we knew when he was on the bypass machine. Breathing. Hoping. Reading the amazing posts from friends who were praying, people I don't know who, people who I might never meet. Oh how precious. Thank you. All of you. Oh how amazing the body of Christ.

Deano's godparents came to see us. They came and sat with us, talked with us, laughed with us. I appreciated their love. We could talk about baby boy, we could not, we could go eat, there was no real plan and it was nice. Katharine gave me a big bag of crafty stickers and smash book, I had no idea how much I would need it later. I had made all these plans to bring coloring books and my art journals...none of that happened. Which is ok. It left room for God to use Katharine.

We decided to go out of the hospital to get lunch. I went up to his room to pump, just as we got done and decided to go we were informed that he was out of surgery and we could talk to the surgeon. We did. Everything went well according to him, it would still be a while before we could go see our son. We went to lunch. It was an adventure, but I was thankful for the time AWAY from the hospital.

Then we got back.

When we got to the CICU we were told he was back there and we could go see him.

Walking into his room took...took everything.

He did not look like my baby boy, and I was more than terrified, I was ashamed of myself.

I didn't want to touch him, I didn't want to talk to him, I wanted to turn from that room and not see his open chest or the tubes or the machines or his closed eyes or his pale skin. I wanted to run. I struggled hard not to just start sobbing, but tears leaked from my face.

I went to use the rest room and struggled to bring myself back into his room. I was quiet. I didn't know who to talk to, I didn't know what to say, I didn't know where to go. I honestly, and I am not happy about this thought, considered how to get out of the hospital to get home. I wanted to go home. I wanted to bring him with me.

And I couldn't.

Blair and I...we just sat behind him on a couch together. Nurses rushed around him, monitors beeped, there was nothing we could do for our son. We were very very quiet.

My mom and dad kept telling me to talk to him and I just felt this deep deep shame that I couldn't bring myself to do it. Blair insists that I give myself some grace in this, because I was very tired and cramping more and more. I couldn't bring a chair to his bedside, so I had/have to stand when I talk to him. After Blair saw me swaying on my feet, he insisted it was ok for us to sit quietly in the back ground and let them work.

I thought about Ellie. I wanted her. I wanted to hold her and see her and hug and hope. I wanted to remember that I had a child who wasn't in the hospital, who was "safe", who could hug me and throw tantrums. I just wanted her.

I texted my daddy. I told him how scared I was. I think I was telling my Heavenly Father that too.

If I could have, I would have crawled into my Daddy's lap and let him hold me. But I knew that if any of my family were here with us during this time, I would just completely lose it. He did offer to come, and the offer meant more than he knows.

It was such a reminder of God's love. Blair and I sat and held hands. Just sat together while they worked on our son. And I just told told my Father in Heaven "I'm scared Daddy."

And that was ok.

Things were...so sketchy for a time, and I'm sure there will be other sketchy times. As I write this nurses and a surgeon are draining some of the blood from around his heart because it's putting too much pressure there. I can't see what they are doing. But I am trusting they are doing it.

He was losing a lot of blood yesterday night. At one point, we were asked to step out while they x-rayed his chest. While they were out doing it, his heart beat dropped quickly. We stood in the hallway while an alarm sounded and ten nurses came running down the hallway, all alert, all ready to do what they needed to do for our little son.

We stepped out. I got some snacks for dinner, I'm not sure either of us could have eaten much. I pumped. We just sat. We both admitted to how scared we were...and talked about how beautiful it was that they could do all this for him. We Skyped with Blair's Mom and saw Ellie. I sobbed.

In one week, I have had my second child, been through more emotional stress than I ever thought possible, have found out that people all over the country are praying for us, and heard my daughter use actual words! Whew!

Blair and I couldn't get over how big she sounded! And oh how good it was for my heart.

Things, for me, got better after that. We came back to his night nurses, who just touched my heart. One of them told me she had a friend named Dean and they all called him Deano, and she apologized for calling him that and told me she would stop if I wanted her to. I didn't. I love it. I don't know why, but ever since I keep calling him my baby Deano.

He started to do better. His color improved and they got to clean him up a little tiny more. I'm more confident and ready to rub his hair and talk to him. It still is hard for me to stand by him. I go in little spurts. I rub his head and tell him not to get used to all this attention. I show him the milk I've pumped for him and tell him he needs to get better so he can have some of it. I wait. I sleep. I pray. I write down some of the texts I've gotten so I can keep them forever. I hope.

There are not enough words to tell you how terrifying and shocking it was to see him after surgery. My heart aches for the people who have yet to go through this, and for the ones who already have. I am working on accepting and forgiving myself for wanting to run at first. I am working on seeing myself the way others have told me they see me: strong, but strong in the Lord. I am working on resting more and drinking more water.

Minute by minute. Day by day.

Daddy, Father, Lord, I am scared.

It's ok, He says, I watched my son on a cross. I know this hurt. I hurt too. 

Breathe.

And Praise God, my son is Four Days old.
And those four days with him have been amazing.

Chapter One: "But I Can't Keep Him Safe Out Here"

It somehow didn't occur to me that I would go into labor on my own with baby Dean. In my head, we had a plan and by golly we were going to stick to that plan.

By golly we did NOT stick to that plan.

To tell Dean's birth story we have to back up to a snow storm that postponed a Dinner Theater I helped direct/Write/throw together as a fundraiser for my little sisters. When we picked a new date because of the snow, I knew we were cutting it awfully close to my induction date.

We also have to talk about one of the best woman I've had the privilege of knowing: Stephanie Conley. We all knew she was sick, that God was calling her home, none of us knew when. God knew. The Monday after my Card Shower, she got to go home to the Lord. I was so thankful I had the week of work off to grieve and be there for her kids, who are practically like family to me.

That Friday we had our Dinner Theater. It was great. Exhausting at 28 weeks 5 days pregnant, but it was awesome. I was so glad I was able to help my sisters. That Saturday, I was able to go to Stephanie's Celebration of Life. I got to play with her Grandson. I got to hug her kids. I got to cry as I heard stories about her children eating breakfast together after she'd gone home to Jesus. It was beautiful. I wore an actual dress, she would have loved it, would have been so proud of me for looking like a girl with no paint on me anywhere!

These events are important, because when I woke up Sunday morning, I felt off. Uncomfortable. I went to Church (also keep in mind Blair had been at Drill that Saturday and most of Sunday, because you know, stuff always happens when he's at Drill) and tried to sit still, but I couldn't. My lower back just...hurt. I knew this could be a sign of labor, but was nervous to say much to anyone. My mom, however, I think she knew something was up. I was greeted by people, given some amazing Cinnamon Rolls and a red hat for my boy, and was prayed over by the Elders of our Church, joined by my parents and Blair's Father.

I could spend so much time just on that alone...how powerful that room felt...how the very presence of the Lord was there...I feel like that's a whole other blog post though. Maybe one day. :)

By the end of Sunday School I was uncomfortable. Ellie went home with my parents, Abbie came with me to get our stuff "just in case" and by two thirty I was at my parents house, and I was feeling contractions. Blair's unit was able to be released early and he was on his way to get his things and to come to my parents house. I jumped in the shower because the back labor was really starting to make me VERY uncomfortable. Blair got there, and we timed a few contractions while my dad watched the Superbowl game and my mom made food. Around five thirty we decided that maybe we should go to DC.

I was nervous about going in. Mainly because with Ellie, I had a lot of back and forth labor and it just took a while for my body to kick it into gear. My mom and Blair were very encouraging, and Blair was adamant that we go get checked there. My dad and Blair and Mom packed up, we called Ellie's "Uncle Jon and Aunt Kackie" to let them know she needed to be picked up, and away we went.

When we got to the hospital, they checked me and I was at 3 CM. I walked around the hallways for what seemed like forever with my mom and Blair. His Dad and my Dad watched the Superbowl Game in the waiting room. Dean was more excited than I've ever seen him, and my Dad was worried about me and the baby.

Through all this, the entire thing, my Daddy has been my Daddy. It's amazing to his love for me, our son, and Blair. To know that this is a reflection of our Heavenly Father's heart for us. This could also be a whole other blog post.

I went back to be checked around ten, had dilated to a four, so I was admitted, once again, to be on the safe side.

There was blood pressure taken, heart monitors put on him, contraction monitors put on me, blood drawn and BOOM. It was time, apparently, for me to labor.

All night the nurses kept asking me if I felt the contractions, the answer was always no. I had a lot fo back pain, but I was able to get some rest, ONCE we were able to monitor babies heart beat.

Let me tell you, this boy is a stinker. All I wanted was to lay on my side and go to sleep! Every time I did we would lose his heart beat and the nurses would have to come in and mess with me until they found it again. I was uncomfortable for a lot of the night. We had one nurse who FINALLY found his heart beat while I was on my side and then there was sweet sweet rest. Thank you Jesus!

I continued to have contractions I couldn't really feel and continued to dilate all morning. I spent a lot of time on Facebook being goofy and a lot of time texting other people. Quite frankly, for a while, I was bored. I watched movies and listened to music. Blair played a lot on his computer. We chilled.

Around ten, I stopped making progress on my own. We were given the option of using Pictocin. After talking to Blair and my Mom, we went for it.

While we waited for them to get it all set up, I had a few moments. All the sudden, this was real, all the sudden we were going to be serious about getting him out. All the sudden things were out of my "control" and he would be on the outside...where I can't keep him safe. I wasn't ready, I told my Mom, I wasn't ready. I cried. She came and hugged me and we prayed and Blair held my hand. I took a deep breathe, we began the pict and so began the hardest labor of the two I've had.

Pictocin is brutal. At first I thought, ok, I can handle this. Ok, this isn't so bad. Ok, this is doable. It helped me dilate, I felt more contractions, everything was going well. I had a lot of friends praying for me because they knew how important it was for me, personally, to have a vaginal birth with little to no intervention. Around two, after some good laboring,my pict level was at 10 and we had the option to break my water.

We broke my water.

And it felt like all hell broke lose.

I stopped being able to breathe through contractions. I felt baby boy move down and the doctors even told me that he was. (I did not need to be told, I felt it, I promise!) The pictocin made my contractions fast and STRONG. With Ellie, I had a build up. I would get cold and then as I got warmer I knew a contraction was coming and could mentally prepare my mind. With the pict contractions, they just WERE. I had no build up. I clung to my mom and Blair. I didn't want them to leave my side. I was checked, was dilated to about a six/seven and told to labor through those contractions to bring baby boy down more.

It hurt. It hurt like hell. It was brutal. I thought, there is no way I can do this this way. I can't even relax between contractions, I felt like I couldn't breathe. If Blair or my mom were not holding my hand during those contractions I felt lost.

I begged them to make it stop. Around three I thought I just couldn't make it through. I begged them and begged them to help. Blair held my hand the entire time and told me to look in his eyes while I contracted. I remember thinking how handsome his eyes were, and remember the smile on his face as he would tell me good job. I also remember snapping at him at one point when he told me to stop fighting the contractions. I very loudly told him I wasn't fighting. He didn't take it personally. I love him so much.

My mom also held my hand. She kept telling me how wonderfully I was doing, that I was the only one who could bring him here. She helped me relax my shoulders and my forehead, taking the tension away from those areas and getting me to focus on bringing baby down. I kept telling them I couldn't do this, I couldn't do this, that it hurt, it was different, that I couldn't do it.

I remember this utter feeling of helplessness and hopelessness and feeling like this labor would last forever. I tried to talk to the Lord, to call on Him, but I just couldn't. I tried to tell Blair to talk to Jesus, I remember telling him to ask Jesus to help me through. I could see in Blair's eyes the prayers he offered up for me.

I would have gotten an epidural if not for my mom and Blair. I begged for it, Blair knew that's what I was asking for. At one point he said to me "Maddie, you don't want that. If you get that, you won't feel him the same way you felt Ellie and you loved feeling Ellie. You can do this." If he hadn't reminded me...well, who knows? I did ask for the laughing gas though, and was so mad when it felt like it took them too long to get it to me.

I ended up not even being able to use it. It freaked me out too much. I would have contractions and put the mask on my face and try to suck it in and couldn't. I felt like I was suffocating. It scared me more than it helped me. I think this was close to four.

By four, I felt pressure and I was just so so so done. I bore down a little, felt him move, and yelled for my mom and Blair to bring the doctor's in. When she went to check me she told me she felt a little cervical lip. She pushed it back and that was it. I felt him move down. I knew I wanted to push. So I did.

Oh Lord have mercy the confusion and drama! Ha! She was yelling for the other nurses to get the babies doctors and telling to stop pushing. There was no way I could not not push! But I did! Normally, I probably would have been like, Nope! I'm pushing. But for my son...I knew my son needed those doctors. So I breathed hard. I looked at Blair at my mom. I did what I could, but it got to a point where I couldn't hold back anymore. I felt him crown, the doctor was literally holding him in, I was yelling, people were running every which way and she said GO! Push! I pushed.

Not for long though. I think I gave one or two good pushes and I felt my son come into this world. And to my amazement and delight, they laid him on me. And oh was he beautiful.

And oh was I terrified.

With Ellie, we had a good 30 minuted together, she laid on my chest, she latched on. My son was there mere minutes before they needed to evaluate him. Blair went to the corner with him, my mom held my hand while I was shaking and crying. I could hear him cry. They were checking for tears and reminding me to deliver the placenta. I bore down and it came out with no issues. The next thing I know I hear "Let his Momma hold him."

I was preparing my heart to not be able to hold him after his birth. I was preparing to hear the worst.

God gave me the best.

My son wrapped up in a blanket in my arms, I got to kiss his face and tell him I loved him and stroke his cheek. He calmed at the sound of my voice and oh oh oh he was so so so beautiful.

And then they had to take him.

And I cried.

And My Mommy held my hand and told me how brave I was and how beautiful I was and how proud she was.

4:14 pm on Monday, February 8th, weighing 7 pounds 8.8 ounces, here was my son, Dean Blair Jaques, yes, the Fifth.

I said the hardest part was holding him in, but that's not true. After being checked out by the NICU he was prepared to go to Children's Hospital CICU.  They packed him and before he went over, they brought him to see me. 

He was in a big plastic box, there were tubes already in him and oxygen on his nose. And he knew my voice and I got to tell him I loved him and stroke his cheek. Twice.

Twice.

And then, they took my son to another hospital, and I couldn't go with him. 
And this was the hardest thing I have ever done. 
To watch my son leave. 
To not be able to go with him. 

God knows my heart. And He knew there were certain things that I just said "Lord, if you are willing, please let this happen." Every single one of those things happened.

I went into labor on my own and wasn't induced.
I did not have to use cervidal or cytotec to soften my cervix.
I did not have to get an epidural or a c-section.
I was able to hold and kiss my son, twice, after he was born.

Dean's birth story, and his story from now on, is to be told in chapters.
Chapter One, I can't keep him safe out here, but oh oh oh, the Father Can.

No News Is Good News

Thanks for all the love, support, calls, and texts today.

Basically, no news is good news. Our boy's heart looks pretty much the same as it did last month, which is actually good! It means there are no new complications and we can keep him baking in there for a while yet!

We are scheduled to be induced in DC February Ninth and are looking forward to seeing our son (I'm really hoping he has his Daddy's dimples!). Until then, I still go see lots of doctors to keep an eye on him and me.

There have been a multitude of people who have helped watch our Ellie girl while we were at appointments, and I can't even begin to tell you how much that means to us both. The prayers, listening ears, and hope that are thrown our way sure make this easier to deal with.

The closer we come to having him in the outside world, the more nervous I become I must confess. There are still a lot of unknowns. There are still a lot of risks. He's still my baby boy. I beg for patience and understanding, especially if I don't return phone calls or texts right away.

We are pretty tired tonight (as are my parents I imagine, who made the trip out to DC with Blair and I...which means more than either of them will ever know), so I this is probably all I'll say before drinking some warm tea and passing WAY out.

There are many blessings in this storm we are weathering (like he fact that we will be able to see Blair's Dad before baby comes, with the possibility that he might get to meet his grandson!) and we are sure to count them.

Regular pregnancy is certainly starting to takes it toll on this Momma too. I am BEAT by the end of the day. Our boy is getting bigger and bigger (he gained an estimated pound from last week to this week..I need more protein and less chocolate!) and rolling from side to side gets harder and harder.

We have around 20 days until we get to meet this guy, and THAT is when our REAL battle begins.

What I Pray For

Many people will not like what I'm about to say.

Please bare with me and wait until the end.

Please keep in mind this is my personal blog, and I am writing to share/process this journey.

Please be kind.

I am not praying for God to miraculously heal my son. I am not praying that when he is born he will not need surgeries and that his heart will be healed. 

You may pray for these things if you'd like, but please, refrain from telling me you are doing so.

I promise you, I have reasons.

I believe that God is big. Bigger than you or I could ever imagine. I believe that if He wanted to, He COULD heal my son, in a heart beat (no pun intended there). I believe that God raised people from the dead, healed them by His touch, cured the diseased, and made the blind see. I believe He is the same God today that He was then, and if He wanted to, He could do whatever He wanted.

For some reason (one I may never know) He has chosen my son, our son, to have a heart condition. One that really won't ever be truly cured unless there are major advances in medical science (totally possible! Please pray for that!) or by a completely new heart.

Every month, a lot of times two or three times a month, I go to a Doctor's office, lay on a table, get some goo put on me and they check on his heart. I lay there uncomfortably and see exactly what the doctors are talking about. Half of my sons heart doesn't work. I see this. Every. Single. Month.

When I went in December, maybe...to be truthful, I was hoping that the ultrasound they showed would be wrong. I was hoping I could get in the car and call about five million people and say "See, look, God HAS healed him!"

But this is not what God did. This is not my sons story.

There are lots of people praying for miracles. Lots of people who have loved ones going through terrible battles who would love to see God's hand in their lives...in the way they WANT to see God's hand.

I am...am asking a lot of God right now. I am asking for strength, and patience. I am asking for Joy in the middle of what could possible be something terrifying. I am asking for Guidance, to do the right things as we go to have our son and as he prepares for his surgery. I am asking that no matter what I keep my eyes and heart focused on this Big God who has chosen us and my son to do Big things.

But I do not need to ask God to miraculously heal him. Because maybe to God that means my son goes to Heaven before I do. Maybe to God, THIS is our miracle, that we get to draw deeper and deeper to Him in this, our time of utter dependence on Him.

I am praying for God's Will to be evident in our lives and in our sons life, and that We, as a Husband and Wife, as a Mother and Father, glorify Him, no matter what the outcome, no matter how hard, no matter what.

If my son is born and they find out that his heart is fine, Praise God.

If my son is born and whisked away because half his heart doesn't work, Praise God.

If my son doesn't survive birth, Praise God.

If my son doesn't survive the first, second, third surgery, Praise God.

If my son survives and thrives for 20 years and developed complications later, Praise God.

It is easy to say these things now, hard as they may be, but it will so much harder to live them out. Please...please pray that We glorify God in this situation. Please...please pray for the Doctors and Nurses that will be taking care of our son. Please...please pray for the other families who just spent Christmas and New Years in the Hospital, praying that their child's numbers get good enough to come home. Please pray that Blair and I have the opportunity to pour Hope into other families facing the same challenges. Please pray that God's Will be evident and that we accept it with Grace and Beauty. Please pray that we rely on the Lord and the amazing Support that we have had during this time. Please pray that my emotions stay in check when they induce me, that the Lord give me a Spirit of Strength and Hope, that I do not fear. Please Pray for Blair as he misses work, and tries to take care of me, Ellie, and our Son. Please pray that Ellie have such a grand time with others that she doesn't realize how long Mommy has been gone. Please pray that the she is taken care of so well that I don't even have a second to worry about her. Please pray for our own hearts, as we see our child hooked up to tubes, with a scar down his chest. Please pray that we budget well, that our finances stay secure while we are in the hospital.

Please Praise God with us, that we have had our son as long as we have had him. Praise God that we have seen an out pouring of love and support.

Life, in and of itself, however God chooses to bring it, is a Miracle.

We don't need one my friends, we already have one.

Thank you.

Baby Growing, Mother's Day, Middle of May!!!

Well friends I feel like it's been a long time since I last wrote anything to you. We've been awfully busy. My new job, Blair's new job, growing a baby, no biggie. :) Not to mention that when I DO have days off I feel this incredible need to be SUPER productive. So I end up scheduling myself for about a billion things. I promise you I'm trying to slow down...it's just not so easy.

As always, I've been thinking about five million different things that I want to share with my few friends who follow this blog (are you following me? I would love for you, I really love sharing my thoughts). I am trying to think of the best way to organize these thoughts and make them coherent. It's not easy, especially with the Ellie STEALING MY BRAIN. Seriously, Baby Brain, it's real. In fact, let's start there!

I have become VERY dyslexic as my pregnancy progresses. I mix up letters and numbers and words like it's my job in life. When I'm researching something for the Library or looking up a book for a patron, I end up typing it all backwards. I have to re-try quite a bit. So in advance, I apologize for all grammatical and spelling errors. I should let the Fairy Godmother read these before I post them...it would probably cut back on me sounding illiterate.

This past Saturday I took pictures for some of my very favorite people (side note, why, at the END of my pregnancy have I decided that spending all this time taking pictures for people is a good idea? Oh yeah, I love it...got it...). We walked FOUR miles. And I did the WHOLE thing. I won't lie, for me, this was a big deal. It helped me sleep and walking is such an amazing thing to help with labor. What's more, those pictures turned out amazing and I love them. Plus that family is one of the best. No joke. I even let the mom use my camera to document me. My husband has been on a lot of my photo shoots lately, and I love it. I love when he comes with. We both got thousands of bug bites, but it was so so so worth it.

I feel very big now. We're almost 34 weeks and man...I marvel at how big she is, and that she will just get bigger. How did God DO this? This right here, what I'm doing, makes me feel like more of an artist than anything I've ever created before. I'm helping to MAKE a HUMAN. How...how can this not blow your mind? Even on the worst of days when I just want to skip to the part where I push her out...I can't help but think about her in there growing and moving. She's so funny, so full of personality. We went to see Shrek the musical (which my younger sister Evie was in and who did an AMAZING job) and Eleanor LOVED it. Very rarely does she move that much! I think we have a future theatre/musical geek on our hands.

I celebrated Mother's Day, and herein lies a small rant. While at Church, I heard someone make a comment when I raised my hand to signify that I am mother. While it was not the right time or place to call said person out, I so badly wanted to. Being pregnant, counts. You. Are. A. Mother. What's more, even if I hadn't been as pregnant as I am, I would have raised my hand. Cara counts. To tell the mother of a lost baby, whether miscarriage or still born, is to deny that she had life inside her. To deny that life...is unacceptable. And mean. And cruel. Being pregnant with Ellie certainly helped this year, however, I still felt the sting of our loss. Because my plan for this year, was to actually have a physical baby to hold, and not just a memory.

For the record, if you know a woman who suffered a loss in any way, and it's mother's day, make damn (yes, I used that word, get over it) sure to tell her Happy Mother's Day. And if in your opinion said person is NOT a mother, keep it to yourself. You have no idea how your comment will affect her. I'll get off my high  horse now, but that one comment I heard behind me really...well, it got to me.

We are doing really well. Pregnancy wise, moving, in general is getting harder and harder. Even flipping from side to side at night takes a lot of me. I think it's hysterical, Blair sometimes...not so much. I'm pretty sure I woke him up last night because I moved his pillow because it was "trying to eat my face"? He grumbles, but he will always scoot over or help me adjust the thousands of pillows I sleep with. He's a trooper, I love him.

Stretch marks have finally decided to REALLY show up. It seems as though in the past two days I've gotten these beautiful lines marking up my belly. I love them. I love the evidence that I am carrying life.

Let's talk about yoga for a second, because I love yoga. I wish I was going more frequently. I feel very good about myself and my baby after we go. Everything hurts less. :) I also like that most of the poses are things I can bring home and do on my own. My instructor is wonderful and adorable and makes me feel incredibly at peace. (In fact, after this, I'm gonna go do some stretches...things be tight up in here yo!)

All in all, we're just getting more excited. I keep praying about labor, and trusting in my midwife and listening to Blair when I feel crazy (which has been rather frequent I must admit...) I'm drinking lots of red raspberry leaf tea and another tea called NORA tea (Nettles, Oats, Raspberry leaf, and Alfalfa) and I feel strong. Most of the time. Sometimes, when I'm still for too long and then start going again, I get weird and move really slowly. I've got the pregnant waddle down, even though I try really hard to walk normally.

It's already the middle of May and June is almost here! I keep in mind that Little Miss might decide to come in July (which I can TOTALLY see her doing because she's half Blair and he's stubborn like you would not believe) just to mentally prepare myself that I might not be "done" when the calender says I should be. Babies come when they're ready. I'm ok with that.

I will really try to post more! I have lots of things that happen and I think, "That would make a great blog post" and then I get home....and Eleanor says "SSSSSSSSSLLLLLLLEEEEEEPPPPPPPPPPP" and I must admit, I'm willing to oblige the little goober. :)

Full

There are all these little things that are happening that just make me smile. Conversations that I've had, people who've stopped to see me, encouragement right at the right time.

I think about how my husband and I realized how incredibly selfish we are with and for one another. If we have spare time, we want to be where the other is. Three times Blair has come by the Library just to see/be near me. He showed up today and confused the heck out of me.

"What are you doing here?" I asked.

"I wanted to give you a kiss." He said. And then he did.

Our schedules have gotten much busier than we are used to. I work more now that I have been in MONTHS and I LOVE it. It just means that we don't get to spend our afternoons together the way we used to. It's all worth it though, because I love what I'm doing now. He sees this, knows it, and embraces it.

Today I saw a friend I haven't seen in a LONG time. She said "I love seeing how much you love Blair and Ellie." First of all, I love that she called them both by name, and second of all, I love that my actions speak that loudly. I want people to know who I love. I want people to know about my Faith and about these two people who mean so much to me. They are gifts, shouldn't we treasure our gifts? I've been thinking all day about that conversation. It kept me smiling.

Tonight my little brother took me to get frozen yogurt for cutting his hair. He looked at me and said "You're not the same Maddie as last year." All these things in just one day, my heart feels full.

We are officially in the third trimester. Ellie Girl feels huge, shoot, I feel huge. It freaks me out a little that she's not done growing and that I'm going to get even bigger. I can't imagine that it's true. I still get sick in the mornings, but I'm so tired of talking about throwing up, that I just ignore it when it happens. I've gotten to this divine acceptance that THIS is what pregnant looks like for me. I have two choices, complain, or accept it. While some days it's hard to accept, still, most days, I just take care of business and carry on. I like it better that way. Having two or three nose bleeds in a week tends to make me a little (read, a lot) fussy, but I'm really really trying to control that attitude. I know there are plenty of women who would love to have what I have sickness wise if it only meant that they were pregnant.

All the sudden I've got this voracious appetite. I want all the foods all the time, expect first thing in the morning. By ten though, man...it's like a food monster lives in me. At night, I feel like I get so hungry I could eat and eat and eat. I'm trying to remember all the things that are super good for us though. I may not have been able to eat well the first two trimesters, but hopefully I can now.

I've also been treated to a pedicure and a steak dinner in the last week. It amazes me the amount of wonderful people that surround us. I told Blair that we've got to start getting out more, if only because truly, people miss us. It goes back to that being selfish with one another. We're entirely too content laying next to eat other in bed reading or talking about books. However, I know that there might be a time when we really won't have all this time for one another, so be patient with us as we try to make the most of it now.

My heart feels full today. Almost like I was empty and needed some words of love without even knowing it. It's amazing to me how God works things together to fill us, even when we don't know we were running on empty.

Battling Irrationality

I am not to much of a coward to admit that I get scared.

I think that cowardly people are the ones that don't admit when they are scared. I think that by admitting you are scared you take power away from what it is that is making you scared, and you allow others into your mind where they can calm those fears.

I grew up around childbirth. I went to school and would come home to a baby. I looked through the Bradley Birthing Method book at a young age. When I was 19, I saw my best friend push out my God Daughter, since then, I've seen four other births. It's something that I've talked about, read about it, know about, am educated about.

However, I have never given birth myself. Not to a full term baby. So no, I don't know what contractions feel like, I don't know what it feels like to need to push, I don't know what it's like to get to a point in labor where you just think, "What the hell am I doing?" And yes, just like that. The sensations will be all new to me, something different that I've never experienced.

And I am not to much of a coward to not admit that the thought of giving birth at the end of June/maybe July, kinda scares me a little. I mean, ok, maybe I need to rephrase how I'm wording this. I just have an incredibly high respect for it, sometimes, though, that respect borders on irrational fears.

I am not scared of what my body can do. I am not scared of what God has created me to do. I am not scared of the pain, it is temporary, fleeting, and worth it to hold my daughter.

I am scared of what I don't know. I am scared of all the "what-ifs" and basically, the things that are out of my own control.

Here is how I am battling these fears: talking, listening, praying, trusting in those who know more than me. Trusting that my midwife has all the knowledge she needs to help me bring my daughter into this world. Trusting that my husband will be by my side, eager to help (where he can), knowing that he will encourage me. Talking about these fears with my Husband, asking him to listen to me, however much invalid or unlikely they are. Listening to those who have done this before, who tell me that it really truly is all worth, regardless of if your birth goes how you planned it or not. Praying that no matter what does happen, God is glorified through this experience, and that His ultimate goal for us is achieved. To bring into this world a life we've been blessed with.

In the past year I've been around and experienced a lot of those unknowns. Tragic things, hard things that cut you to the core. I've seen grieving mothers, grieved myself, and grown so much because of it. I have a very clear idea, in my head, how I want things to go to bring Ellie Girl into this world. Certain things I do know, like I just want to be home surrounded by my Husband, Mother, Best Friend, and a midwife who lets me labor, and is there as my just in case. I want to trust that my body can handle this. I know that I can do it, and I know in the throes of labor I'm going to try to convince my Mommy, my Husband, and my Best Friend, that I can't do it, that I won't do it, that I don't want to do it any more. I know in my heart, that each person in their own way will tell me that I can, that I will, and that I have to.

I'm finding out that the people who surround you before your labor and during it matter so much. That if I didn't have my Husband and Mother and Best Friend and amazing Midwife, I'm not sure I would be given leave to trust the way that I want to.

My crazy hormonal pregnant mind day dreams a lot about what could happen, what might happen. Each time I start to panic slightly about what I can't control, I remember something. God is in control. He's in control now, and He will be in control then. Regardless of what happens, or doesn't happen, He is still there. Why do we all seem to think in these moments of desperation that He just isn't there? I'm guilty of it. But I don't want to be.

I imagine myself in my bedroom at four in the morning, hanging onto my husband, crying because I can't, and I pray in those moments that I hear that still small voice who says "You know, you're right, you can't, I can, because I Am." THIS is what I want to remember to stop these irrational fears. THIS is what I want to remember while surrounded by the people I have gathered to be my birth team. THIS is what I want to remember IF we have to transfer. THIS is what I want to remember IF she is breech and the little sucker doesn't turn. THIS is what I want to remember IF nothing goes like how I want it go.

That I serve I Am, and in those moments, I'm surrounded by His Love. 

By the way, I love love LOVE this picture.

SCORE

You know, I'm pretty sure there comes a time in every young woman's newly married life where she thinks to herself "I married the very best man in the entire world". But, well, I really did. I mean, really. Blair is the best. In my head, he's better than you would ever know.

I mean, there are lots of reasons. There really are. I would like to title this post "Score". :)

• So as far as getting sick goes, it's gotten better. I've been really tired and there are still some things that trigger my stomach and make me vomit. One of these, is dishes. I don't know what it is, I think part of it is that our kitchen is so small and contained that if there are ANY food particles in the dishes it just makes me crazy. So SCORE one, Blair ALWAYS does the dishes for me. And if I look at him and say "They made me sick, if you do anything today, please do dishes." He does it. I feel bad sometimes, because he works hard and work has been iffy for me for a while. So on top of my husbands 40+ hours, he takes care of me. 
• SCORE two, we were talking about when Baby Ellie comes in June (possibly July) and I confessed something that I'm a little worried about. We like to sleep a lot. We go to bed early, Blair gets up early and we just really like the way we get to sleep a lot. So with a new baby...sleep kinda....well, it just doesn't happen. There is no set schedule. There is no bed time. There is no system. At least not a little while. When I told Blair that I was worried about this, this man...Oh this man, he says "Maddie, it's not a big deal. I'll stay home with you two as long as I can, and when I go back to work, we'll make it work. We'll nap when we can. If you have to wake up in the middle of the night with her, and you need me to be awake with you, tell me. If you don't, it's ok. Just don't tell me to go back to sleep and then wake me up because you found out you did need me. I'd rather just be awake with you."
  I'm not sure he knows how much that meant to me...
• SCORE three, he loves talking to Ellie. It's hysterical. We've gotten to that fun point where she moves and wriggles. I can tell you the exact times that she gets excited, and there are certain places that she gets excited about. The other day though, Blair put his face right down close to her and talked and she freaked out. Baby knows Daddy's voice. I consider that a huge SCORE.
• SCORE four, he massages my back. I got the best birth ball from a friend and I sit on that sucker like its my job. I had a moment yesterday when I got real nauseated and I knew I needed to take a medicine before things got out of hand. Sometimes, it's hard, because it tastes bad, and I have to be very careful when taking it. Blair sat in there with me and rubbed my back while I tried to swallow it down. Labor is gonna be a breeze with him there. 
• Now we come down to SCORE number Five, he let me order Chinese food last night. :) 

I'm part of these groups on the Facebook that talk about HG and how they deal with their sicknesses. Some of them talk about how they don't have super supportive husbands...and I don't know how they survive. Never once have I felt like Blair wasn't there for me, or that he doubted how I felt about my body. Never once has he made me feel bad for not being able to work as much, and never once did I doubt that he was excited about his daughter. Sometimes, now, he just looks at me and smiles. She's getting so very big and moving so so so much. Every little noise I make he wants to know why. 

It's just...we've learned a lot this pregnancy. We've learned a lot about each other, what we want, and don't want. I've learned a lot about myself and about how to let people love me. 

And Blair...man...someone give the man a cold beer. He's winning.