Take Four

I have officially started and deleted three blog posts, maybe the fourth one will break me out of the weirdness I've been in. Writers block has me hard and I'm not always clear on what I want to write about or how to make it cohesive.

I worry that people will get tired of hearing what I have to say. There are a million and one blogs out there. There are a million and one writers, most are far better than I am. Most are better at conveying their thoughts than I can ever hope to be.

I am afraid that people will find my life boring. I'm a mom now. What's more, I'm a mom under house arrest until cold/flu/RSV season is over. Very rarely do I leave the house. Very rarely do we get to go anywhere together as a family. We don't even get to go grocery shopping together. I take Dean to his appointments or possibly Grammy and Grumpy's house when I'm really feeling lonely. I cancel plans with people who tell me they have colds in the hopes that we never bring it into this house. Blair goes to work, he comes home.

I stick so closely to our routine and schedule because my children (bless them) have started taking naps at the same time. And Lord Help me, that hour of quiet is LIFE to me. LIFE. It's what gets me through the day. If we make it through nap time I can make it until bed time and God help us all if the routine is thrown off. And this is all I have to write about right now.

Nap time and quiet time, kids TV shows and routines. I change diapers for a living and I clean. I constantly clean. Because if I do not clean the house will erupt and chaos will ensue and DEATH DESPAIR DESTRUCTION. Most of the time I realize what a blessing this is. My baby boy will be a year old soon. Whoah. The weight of that does not escape me.

Mombie though is a real thing. I find myself putting off showers (because I'm not going anywhere and honestly, I'd rather sleep). I either ignore people or I talk too much and end up complaining. My friends don't ask me advice that much any more because I have "so much on my plate already".

My husband is bi polar and while I don't talk about that much on my blog, it affects me in huge ways. He's been great about taking his medication, but the weather and the long hours and being couped up at home and stress all play into his moods. Some days I don't know who I am waking up to. Some days I don't know who will be coming home from work.

And I am tired.

I am tired of bills and appointments and blood work. I am tired of calling and emailing a million times to get his medications straightened out. I'm tired of the crippling guilt I feel when he goes a day or a week without one of his medications. I am tired of hearing of another CHD Death.

Two babies. Two babies died this month and everyone is arguing over people they will likely never meet. People being mean and petty and name calling and I'm wondering how long my son will live. Wondering if he will be next. Wondering if his heart will last. We've made it a year. A whole glorious amazing scary tough hard ridiculous year. I've done things I never imagined I would have to do and I cannot fathom that we have had him almost a full a year. 365 Days. Wow. It gives me chills to write that.

The Heart Community is amazing. You will find some of the most amazing people there. I've made some crazy amazing friendships through support groups and messages. We are friends. We are family. And when one of us in the heart community hurts, we all hurt.

I follow stories of babies who are fighting, who are on ECMO, who need miracles. I follow a young man who is on Hospice and I follow babies who have had heart transplants. I hope for them. I root for them. I pray for them. I hurt for them.

There is a lot of life in these groups. Success stories and encouragement. But there is Death as well. And I live with that. I have to. I embrace it. I have to. Because Death is part of Life and I hold it close to my chest and whisper "please not us, please not us"...knowing I have little control over it.

I've been hesitant to write about this. About the Death that I see. People do not want to know about the death. They do not want to know that it could be my son. They want to think the best and I'm so glad that they do because I'm cautious and scared still. Learning how to live life fully while watching the health of your child is a hard thing.

When my friends have Heart Caths or procedures...I'm like a mad woman checking for updates. My parents ask about the different kids and stories now. They pray for them too. And when they come out of these procedures and operations I'm elated. I am joyous. Because if they keep making it we can keep making it.

I am tired.

A bone weary tired that most of the time I can forget. I have been blessed with space and time to be able to work through my feelings, to be able to draw and create, to talk to people. I workout and I grocery shop by myself (probably because we can't as a family haha). I have friends I text and talk to, I know I'm not alone.

But on the worst days...it feels like we're in a life boat and we are very very far from the shore. Very far indeed. Hematology appointments get me every time. They throw me into this funke. They stuck him five times today. Five Times. I held his legs and arms down while he turned red and tears ran down his face. And I have to pretend he's not my kid. I have to pretend that it's ok. I have to pretend that this is what every parent does. I have to pretend that he won't remember any of this. I have to pretend like it will be over and we won't have to go back next month. I have to pretend he's not my son or I think I would go mad.

Even in the middle of this I had to stop writing and go help Blair while Dean vomited.

I hate CHD's. I hate HLHS. I hate that I see so many parents say good bye to babies. I hate that I watch people struggle. I hate watching techs dig around in my sons arm to get the blood to flow. I hate that babies need heart transplants. I hate it.

And every now and again I need to say how much I hate it. How much I hate all of this. How much I feel was stolen from us knowing that it was so much could be given to us. I hate how much it stretched me out of my bubble, how it it ruined things for me (I get so weird about peoples 20 week scans...you see gender...I see organs). I hate how much it made Blair and I argue, how stressed we both were (and really, are). I hate how much we had to be carried by other people. How often we had to and have to ask for help.

It all makes me a better person, but that doesn't mean the growth didn't hurt.

I am tired.

Tired of seeing Death so often. Tired of seeing hurting babies so often. Tired of people being so petty about the stupidest things. And physically...y'all...I could go for a nice. Long. Nap.

Contradictions

It's been a month since Dean's second heart surgery and we have been home almost a month. I have contemplated what to write and argued with myself about writing. Mainly because there is always so much to do. As I sit here, with Dean and Ellie both snuggled up in their beds (Hallelujah they are starting to go to bed around the same time together!) I look around and there is a pile of dishes in my sink, three piles of folded clothes, the trash needs to go out, and the play room is a war zone. And Blair and I have not spent much time alone. It feels selfish to sit and write when I could be snuggled up next to him. Or taking care of my house. Or sleeping.

I've been hesitant to write whats on my heart. I'm not sure I can articulate this well enough for people to understand.

We get asked a lot "How's it going, Dean being home?" I pause when asked that. The long and short of the answer is that it is both good and bad. It is both wonderful and terrifying. Beautiful and painful. An amazing blessing and absolute chaos.

I love our son. He has gone through so much and come out beautifully. His smiles warm my heart and he responds to me in the most amazing ways. Yet he is very very different from his sister. He is all my baby. He does not like most other people, he can tolerate them for a short time, but at the end of that time he makes it known that he wants to be back with me. It's almost like no one knows how to hold him as well as I can hold him. The closest person who's been able to calmly talk to him when he gets fussy has been my Mom. Go figure. I'm a lot like her.

The few times that I've left Dean with Blair, I have come home to either to the craziness of Dean crying or Blair pacing back and forth with him, because if he sits down, Dean screams at him. His face gets red, and goes from red to blue and he has actual literal tears in his eyes until I sit with him or rock him.

I love that he is calmed by me. I am terrified about the prospect of not ever being able to be alone.

I think I had some expectations about what life would be like after we got home this last time, and the reality of what we can home to was much different than I thought it'd be. It's summer time and I will not be going to the Beach, I will probably not be going swimming. I will not be going for long walks, and I will not be sitting in the back yard with my kids, playing in the grass. Dean doesn't like being outside. And one of his medications cause him to be sun sensitive. Ellie likes to go go go, I'm afraid of trying to coral them both, keep him from crying and keep her from running into the road. Even going to the Library (which I miss terribly) seems like too big of a expedition.

Part of this is the very real struggle of going from one kid to two kids. Truly it is hard. Everything is divided and harder and more. Almost every day, at some point, I have to rock Dean, talk to Ellie and listen to Blair. And I must make it all happen. I am a champion multi-tasker. Most moms are. Most women are.

Add to this the realization of how unhealthy my relationship with food had become and what it was starting to do to me physically and emotionally and my mind has been racing racing racing these past few weeks.

I am simultaneously praising God for the blessing of my children and husband and life and mourning the things I have given up. Desperately wishing for an hour to sit by myself and pretend that I can dwaddle and not think about anyone.  I mourn the loss of another summer. I mourn the loss of being outside. I mourn the loss of Dean's baby hood. I mourn the loss of friends who don't come see us because they are sick (which I love that they think of Dean first, but it makes me so sad for Ellie). I mourn the loss of just packing up and going places to visit people.

If we go anywhere we have to think about how long we will be gone and when we will be coming back. We pack medications and feeds and I'm worried that at some point I will say Peace Out because my son can't handle it. Or perhaps I won't be able to handle it.

This feels so isolating. I've entered into this world of Special Needs Momhood and it's a rough place to be man. It's lonely. And I hesitate to talk about it because everyone wants to tell me how grateful I should be that he's here still. Do you think I forget that? Do you think I don't know how much his life cost? Listen the other night I remembered what it was like when he was intubated but off the paralytics and he would cry silently. I had to grab Blair's hand and breathe slowly to calm myself down. Swallowing back tears. I have to remember how much it hurts him when I give him his shots, or that when he cries for me, it's because for so long we were apart. I know.

It does not diminish the fact that our day to day life is still hard. That I am still struggling. In part because I think my son is just a colicky baby. He's particular. He's stubborn. I love these parts of him. I know they are part of the reason he was ok after two open heart surgeries. I know he is strong.

And I know that I am tired. I know that I am constantly on. I know that my attention is drawn every which way. I know that "me" time, though important, most days has to wait. I know that at any given point in my day I will need to drop what I am doing to go "save" him. Or to keep Ellie from accidentally stepping on his head. I know that this has been a strain, even more, on my relationship with my husband who does everything he can to help me. He's literally doing the dishes as I type this. He's done the dishes about fifty million times today. He will continue to do them because he knows that that is a tangible way to show me love. Do you know what I would give for an hour truly alone with him? We'd probably nap...we did today. The four of us all curled in our beds as a celebration of our Independence Day.

Friends, why must we tell mothers that they must be grateful when they are trying to bare their hearts with others? Why must we tell them what to do or how to do it? Don't you think they are trying? Don't you think they look at their children with such joy already?

Those things never make motherhood less hard.

Until you do it, you have no idea.

It is the daily living. The day in and day out. The constant diapers and crying and trying to get the baby to nap so you can shower that make some days feel like too much. Add to this that our son is still recovering and has a very particular personality and man...we just don't know what the hell we are doing.

So this is where we are now. Surviving each day. Doing what we can when we can. Working as a team. Praying that we get through this year. Reminding one another, this is not forever.

This is not forever.

And yes, we will miss the time that our babies are this small, yes, we will miss their tiny fingers and toes. But I will be honest, I look forward to the day when I can send them out to play and fold laundry by myself. I look forward to the day when they go to the bathroom on their own. I will celebrate the day that both go bed at the same time and I all I have to do is kiss them and tell them I love them. When I can drop them off at a game or play or after school program and read a book by myself in the car. When I can go back to work.

Maybe those things make me selfish. But they're true.

Until then, I will survive. They will survive. And I will do whatever I have to do to get through each day, hoping and praying that my kids know that I love them. Even when I lose patience. Even when I get frustrated. Even when I yell at them. Even when I have to lock myself in the bathroom and put my head between my knees. Even when people want to remind me how grateful I should be.

If there has one thing I have learned from the past year, it's that the most contradictory emotions can exist at the same time. Joy can live with fear. Love can live with frustration. Thankfulness can live with the desire and need to have five minutes without someone touching me.

I mean, c'mon guys, have you seen Inside Out?

This is pretty much an accurate representation of my year thus far. 

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.

 

Part Two: Chapter Six: "I Hate Some Chapters"

I am wondering how to accurately describe a feeling. How to tell you about hugs and family and love. If you've never known what it is like to love without hindrance or conditions my heart goes out to you.

There are so many things right now that I want to record. I want to write down. The way it felt to see my brothers, to be hugged by them, how it felt to be near my older sisters, all of them, the amazing love and grace Blair and I were shown all weekend. I want to tell you all what it was like to watch my family, my favorite people, all be in a room looking at our son, who years ago, wouldn't even be alive. Some of them cried. I didn't, not really, I was to excited. I tell you I have never had an audience while changing a diaper until this past Sunday!

Saturday my family was celebrating my amazing younger sister graduating High School, we paused to take a family picture. We were all there. Except Dean. I went inside and was talking to my mom.

"What's wrong sweetie?"

Moms know man. Moms know.

I wanted Dean home this weekend. I didn't want him at the hospital. I have never struggled with him being there like I have this last time. I have struggled to go into the hospital. Struggled to stay in his room. Gone back home more than I normally have. My heart was angry and hurting and longing for the freedom that we had at home. Frustrated that I spent two weeks without Blair, getting to know our son, and before he got to come home and do that, we were back in the hospital. I didn't want my family to have to plan how we were all getting to the Hospital in DC, I just wanted to drive over with our boy. To spend the whole day with his family, to get to know them. I just needed to lay my head against her and have a moment to cry, to grieve for the life that my son is missing while he has to heal.

I want the doctors to be definitive. I wanted answers last Monday. I wanted them to tell me a plan and stick to it. I was angry at them. Frustrated. Annoyed because it felt like they were not giving me answers. I watched Dean turn blue last week and then start breathing incredibly fast and I had to sit and watch and do nothing. I told the doctors at Rounds the next morning "This is not ok, I need answers. What are we going to do." It is agreed that we are going to look to do the next surgery soon. Tomorrow the doctors and surgeon have their big pow-wow and decide WHEN.

I want them to do it. I want it to go smoothly, because I want to be back home. For good.

I am telling a story. Dean's Story. Ellie's Story. Blair and I's story. All these chapters.

I was thinking today about Chapters in books, how some you love and you are sad when they end. How there are some that you hate and can't wait to get to the end of them.

I'm not a fan of this chapter. My reserves feel shot, weary once again. I keep trying to "fill my cup" and believe me, seeing ALL of my siblings together CERTAINLY gave me enough strength for the week...but I will be glad when this chapter of our story ends and we get to the next one.

Chapter Sixteen: "Be Like your Daddy, Son"

Sometimes I imagine Dean reading these one day. I think, what would I want him to see? What would I want him to know? 

This week, I just wanted to tell him, "Be like your Daddy, son."

Be strong. Carry burdens for others, the way your Daddy is carrying this burden with me right now. The way he holds me at night, in my worst moments, when I am scared that I am going to lose you. 

Be compassionate. The way he holds your sister, plays with her and loves her. The way he snuggles her close in the mornings when she's here in DC with us, even when he wants to crawl back into bed. 

Be observant. Know the people around you, what would make their hearts happy, what would touch them. Know how to help others through the days that are hard and know when you need to let them cry or distract them. Your Daddy is so good at this. 

Be like him, Dean, and watch what he does. He might not realize this, but he is an amazing example of what Christ is like son. See Christ gave up everything for us. Even his life. Your Daddy has done much of the same. 

While I'm at the hospital with you, watching, waiting, praying, your Daddy is working. And he is working hard. He making it so that the three of us, you, me and sister can all have a home together when you are healthy enough to be home with us. While I wait, he works. 

Oh son...these days are long. And they hurt us, especially your Daddy. He is afraid of not being here when he needs to be, not knowing he is exactly where God has called him to be. He is afraid that I will need him and he will be at work. To be honest, some days, I'm afraid of the same thing. And there have been days. Days that don't go so well where I am alone, waiting. Wishing that I had his calm presence there with me. 

People say that your daddy is a small guy, but to me, he is the biggest, the best. His shoulders are big enough to carry you, me, and your sister. His arms are strong enough to hold me up when I can't stand and gentle enough to hold you and your sister when you are small and fragile. 

Be like your Daddy, Son. He is showing, right now, how to be a Man. Teaching you how to take care of your family that Lord Willing you will have one day. He is teaching you to give yourself up for others, the way Christ gave himself up. And the best part, my beautiful boy, is most days he doesn't even know it. 

Your Daddy is learning to be like His Daddy, your Grandfather. The older he gets, the more we grow as a family, the more your Daddy says "Oh, I understand my father more." And the more that your Daddy understands his Dad here on Earth, the more they come to understand our Heavenly Father. 

Son...we love you. So very much. Everyday that I spend away from you hurts. Every night that you are not in my arms hurts. Every moment of everyday I am aware that you are still in danger of not leaving that hospital. I cling to hope like a woman drowning in the ocean, unsure of what is before me and beneath me, but knowing that there is life so long as I hold on. 

This is what we are doing, Daddy and I. We are clinging to a lifeline, a hope, a promise in Jesus that there is Victory over death and the grave. No matter how many days or weeks we have you here, we know that Eternity is so. Much. More. THAT is where our hope is. THAT is the piece of wood we cling to in this ocean. 

Be like your Daddy Son. 

Be strong and get better and come home. 

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 Nine: "This Freaking Sucks"

It has been approximately 27 days since I got to properly hold my son.

Twenty. Seven. Days.

Maybe it's because I'm pretty sure I have a sinus infection and I'm cranky, but emotionally, today, I feel kinda shot to hell.

Just saying.

Most days I do well. Most days are ok. I've really made peace with the fact that if not for these surgeries, if not for this surgery, my infant son would have died. This fact never makes this suck any less.

I understand that people love us and are praying. I understand that people want to encourage us/me and tell us to be strong. I understand and I am thankful. Some days though, my favorite people are the ones who are like "Dude, your baby is sick, that freaking sucks."

Yeah, it does.

I can't describe to you how this feels, the best way to say it is that I miss my son. Even though he's in the room with me. I'm not acting like he's already dead, please, don't think that. He's not. He's alive he's alive he's alive. Every day is a miracle.

I'm missing out on his newborn stage. I'm missing out on sleepless nights, the grossest poops known to all man kind, and oh man, I'm missing out on nursing him. Those are some crazy small silly things but I miss them. I miss them so much. Even though he is so near me, he still feels so far away, and I miss him.

I have been fighting not to be jealous. I know so many other new babies. I know so many "new" mommies and my heart breaks when I see their pictures and their posts. Even when I was pregnant I would have trouble holding my friends babies...I knew that this was not the story we would have with our boy. No, I don't think where we are now makes me less of a parent (or at least I remind myself that it doesn't) but it hurts like crazy. I want to be snuggled up at home with my Deano and my Ellie. I want to be adjusting to a life of four instead of three. Right now I feel like my family is spread out, we're thin. Stretched. Will we be stronger because of this? Oh yes. Does the stretching out hurt? Like hell.

I am strong. I will continue to be strong. My strength though does not diminish the fact that this is just so rough.

He cries now. You can watch him screw up his little face, it gets all red, and he opens his mouth...but there is still no sound. He still doesn't make sounds. It has been 27 days since I heard my son cry. When he does again, I know the tears will flow that day for me as well. I understand that the silence means he's getting better (and he is!) but I miss his noises. It is a terrifying thing to see him try to cry...his chest heaving.

The worst part? When he cries, I can't pick him up. I pat his bottom and rub his head and tell him I'm here and that I won't leave him and I sing to him and I tell him stories about his Sissy and my arm falls asleep and nothing else in the world matters in those moments. I just want to make it better for him.

I just want to take this from him.

If I could, I would. I don't care that he won't remember it. I don't care that he won't remember the pain. I don't care because right now I know he is in pain and he's just a little guy...he's just my little guy...

Look this sucks ok? I have a lot of Faith and Trust and Hope, and I know God is here every single minute of every single day and guess what? It still freaking sucks. God knows that.

And maybe, today, all these emotions are springing from sickness and a splitting headache, but I don't think it matters. While there is much hope and much joy to be found in these days of waiting with my son, there's also a lot of just...crappy days.

God said there would be.

So yeah.

This freaking sucks.

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 Four: "Think of Quiet as Healing"

When it comes to my kids, I think, like most moms, I'm a doer. I want to DO things. Things that seem unimportant to you mean the world to me.

I see other moms right now with their babies, big ones, small ones, fresh from the womb ones...I see them holding and snuggling their babies. I fight against being jealous, though I am. I give that up and remember how my life is so richly blessed. I take that to Jesus. Daily.

Right now my days consist of being in a hospital room with my husband and my now week old son. We bring our kindles (We read), our computers, I have a bag of craft things. We listen to music, I post things to Facebook, I text my friends. I Skype with my beautiful girl. Today, I paid a bill, planned our month in finances, organized a list of people who are willing to help watch our girl, called my mother in law, called my Mother, planned, wrote lists, and crafted a cute name tag for Deano's bed.

I had uninterrupted time in the quiet of the day.

There was no Ellie talking about bears, no her getting into something she shouldn't or climbing on a table. She wasn't pitching a fit, she wasn't whining or singing. She wasn't here to dance to the music Blair played for a short time.

There was no Deano waking up, demanding to be nursed, crying because he was wet, needing a diaper change. There was no Ellie trying to kiss Deano for the tenth time, no her trying to pick him up. He doesn't coo, he doesn't cry, he doesn't stir. He is still.

This room is still. This room is quiet save for the many machines that monitor and beep and keep my sons heart and lungs and kidneys working. There is a low hum in his room. Often this place is just so quiet.

I chafe at it. It gets under my skin. I talk to Blair about everything and nothing to fill the silence. I talk, but not too loud, afraid that if I do I might miss the slightest sound. I play music, worship songs encouraging me to draw deeper to Christ, but not too loudly, because this space feels as though there is something there, just on the brink, and if anything is too loud we will not hear it.

I want to hear my son cry. I want to hear him coo. I want to see his eyes. I want to snuggle him close. Hold him to me and whisper my love to him, my love and God's and Daddy's and Ellie's. I still do that, I talk to him all the time. I joke him about his "girlfriends" (nurses) and remind him that he will under no circumstances be a player. I told him about the day I found out I was pregnant, how I told Amanda through Facebook before I told anyone else. How scared I was.

How all I wanted, more than anything, was for him to have a heartbeat.

How I cried when I first heard his heart beat.

How scared I was when I found out it was his heart that had an issue...how I wondered, in the silence of the night, if at any time, his heart would just stop...

I tell him how wonderful it was to feel and see him move inside me. To watch him grow. To bring him here, though in my soul I wanted him to stay in me, safe.

Someone reminded me today, that there is healing in the quiet. In the stillness.

My son's chest is still open. If he were moving, there is so much that could go wrong. It is hard not to hear him cry, but oh, am I thankful that this has given him a chance to live.

There are things that God is teaching me that I didn't know I needed to learn. Like how to be still. How to appreciate the quiet. How to accept it and live in it. How NOT to fill the silence. How to enjoy it and love it. How to see the deafening beauty that is the quiet hum of a machine. To see beauty in his open chest and swollen body.

I am reminded, daily, that he could be gone by now. When I look up from my book or my craft or my lists or as I get off the phone and see his little head there...there is a feeling of love that overtakes me. Of remembrance that this surgery has given my son a chance at life here with me, with Blair, with his sister, and Grammy and Mimi, and Grandpa and Grumpy, and countless Aunts and Uncles, and cousins.

Today I was reminded that the quiet means he is healing.

I couldn't help but think of the times God has seemed quiet in my life.

Put those thoughts together.

Maybe those times we think God is quiet, He isn't.
Maybe He's just leaving room for us to heal.

Embrace a quiet night.
Let it Heal you.  

Chapter Three: "He's There, just Out of Reach"

Last night we slept in real beds. It is amazing the things you take for granted. It was amazing to have pillows and blankets and get to sleep next to Blair. We so needed the time to be together, alone.

Blair is so patient with me. I don't understand how he is handling this so well, even though he assures me he's not really. I had a good friend remind me that when your milk comes in, there is a chance that your hormones might shift and cause you to be a little weepy. Oh yes, this is true. Blair has seen me cry about many things. Most of the time it's not even about Deano. I cried the other night because I bought him the wrong thing from the cafeteria for dinner.

I cried last night at four AM because I didn't have my babies.

Blair's Mom, who came from India to be here for us, brought Ellie to see us yesterday. I came out of a shower and there was my girl. My beautiful, healthy, running, toddling girl. So precious. And talking so much! Oh my heart! Oh my darling daughter!

I don't think anyone can fathom the guilt I feel not having either of my babies to put to bed. Can't know how excited I was to change Ellie's diaper (and it was even a messy one!) yesterday.

I have a newborn baby. And I got a good nights rest. I was up to pump, but I still got good rest. This is practically unheard of for a momma with a newborn!

My heart aches to have my children with me. When we stopped at our house to pick things up yesterday, I looked at the corner where his pack and play should be set up (it's not yet), and his dresser, and all the amazing things people have made for him and yes, I cried. I want them home with me. I want my babies.

I told Blair this morning it almost feels like we're on a surreal vacation, because we get to sleep so much, and don't have to lug Ellie's things all over, and I'm not constantly nursing our son.

But I wish I was.

All of my very soul wishes for my babies, I can't say it enough. I'm a Momma without her babies right now...I feel misplaced in the world.

I walk slowly still, recovering from his birth. I wonder what people must think of me, this slow woman walking to and from her car in the hospital. I want to shout and scream, "I just had a baby!"

As much as this is Deano's story, it's Ellie's too. My girl is spending so much time away from me. Oh Lord do I miss her. All the sudden she looks so big...Dc Children's Hospital has this little bear called Dr.Bear, it's their mascot. She loves him. All through out the hospital she pointed to them and said "Da Bears! Da Bears!" She was enamored with them. I held her up in a window and we looked and looked at them. I can't wait to see her be a big sister. It hurts me deeply that she didn't get to come see Deano before his surgery. I'm grateful that they were able to get it done quickly and successfully, but I wanted her to just see her "baby". Just once. And yes, it's out of fear that it might be the only time.

We aren't out of the woods yet. I celebrate each moment. Every day since Monday I wake up thinking "Thank you Father, for this day." Friday I kissed Blair good morning and said "We made it one more day. One more day."

Time has never felt so precious. We are living in the moment in an amazing way. Accepting enough Grace for the day. Thankful for the new mercies. Thankful for the prayers. Thankful for the love. Thankful for my family, for Blair's family, for the people who love us, my sister friends, and Blair's brother in arms. There are people across this country praying for my son, right this very moment.

How humbling. To be so loved. Whoah. Today one of the Elders from our Church drove out to DC to just see how Blair and I were doing, to pray with us. Just because he woke up thinking about us.

Writing this post, there are more tears.

I've gotten a lot of feedback about writing and sharing his story. I have to. I process things this way. And if my story and Deano's story can help others, why would I not? Look I've met so many other HLHS Momma's. Ones who have gone through this, are going through it, or have yet to go through it. My heart hurts for each and every one of us. My heart is angry at the sin in this world that has caused such pain and heartache. I am constantly reminding myself of God's sovereignty and His Great Love for us. I am constantly reminding myself that this is breaking God's heart too.

It feels like my babies are here, just so far out of my reach. My mama heart wants to do so much more for them, both of them. Especially for my beautiful swollen baby boy.

I have to remind myself, minute by minute, that if they are out of my reach, if I am unable to get to them the way I want to, they are not, nor will they ever be, out of God's reach.

So snuggle your babies, your children, close. Call them up please, tell them that you love them. Treasure the moments that are hard, that are difficult. Drop everything for them, please, if not for yourselves, do it for me. Do it for my Ellie girl who is being spoiled by Mimi, and for my Son who can't be held by me just yet.

When you go to sleep tonight, remember your children are held by the Ultimate Father. Remember that you are held by Him as well. Remember you are His Child and His heart is for you.

Remember no one is out of His reach.

So Much Love

38 Weeks.

Belly? Henna'd. Huge. Uncomfortable.

Sleeping? What is that? Does that really happen? Can I roll from the left to the right side? No. If I don't do it fast it doesn't happen and I end up stuck on my back. I am a turtle.

Feeling? Hormonal. There were tears this week about wipes. There was anger at my husband about...well, wipes. And other assorted stupid stupid things.

Blessed?

Yes yes yes.

I feel the prayers. I feel the support. I feel the encouragement. Today I was surrounded by women and friends from my church who just...it was amazing. It made it all the more sweet that two of the people who made it happen have been going through some difficult things themselves. They still took the time to make this Card shower come together. Oh the sweetness.

I said it with Ellie, and I'll say it with baby Dean, I feel like Mary, treasuring all these things in my heart. The women who hug me gently and let me know they are praying. The ones who smile at me in church and tell me that me posting about my babies, ALL my babies, made them cry. The texts, the emails, the cards, the understanding. The offers to watch Ellie. The people who are coming home.

I am overwhelmed.

I am humbled.

We might not have to buy gas for the entire month of February. Wow.

We have money for food, groceries and elsewhere. Wow.

I have a book of support, prayers and verses (and some other pretty hysterical notes to make me laugh, hashtag whodidthat?). I have pictures. Ellie ended up with a bear (not intended for her) that she has been toting around and loving on. We have the most amazing artwork of the Tin Man for baby Dean's corner of the room. All the sudden, I really want to set up "his" space so that I can look at all the beautiful things meant for him.

Oh we are just...ready now. I'm ready for him to be here. I'm ready to hold him, I'm ready to fight, I'm ready to find out how God is going to use this little dude and his story for so many amazing things. I'm also very very ready to NOT be pregnant any more (seriously, the random projectile vomiting has got to go, I'm over it!).

From the very depth of my soul, to the people far and wide who are praying for us, I cannot begin to tell you how much you mean to me. I was telling a friend that we just don't know how well baby boy will do and she said "But Maddie, a lot of those other babies, while I'm sure they're loved, they may not have the power of prayer behind them like this baby does." It's true. So much power. So many good thoughts. So much love.

So much love.

What a wonderful way to end a hard week.

What a wonderful feeling to wrap myself in and dream of.

A Christmas Time Thought

Every now and again I have this thought, "Lord, why my son? Why my family? Why us? Why me?"

I can't help it, it's in my nature (the human part of it anyways). I've been working on taking my thoughts captive (shout out to Katharine for holding me accountable for real and entering into an awesome discipleship relationship with me) and the last time I had this thought, we were in church.

It popped in there while we were singing Christmas songs. It's a normal happening in December. You hear them all over. When did I stop listening to them though?

We sing about a King come down from His throne, about a Father letting go of His son, of angels, and Emmanuel. On the radio we question, Mary, did you know?

Did she?

I think about Mary a lot right now. Especially after having Ellie, even after we were pregnant with our first baby. I think about the way the Nativity is portrayed and how it all always seems too perfect to me.

Labor was awesome, but it was hard. I looked a hot mess afterwards. Most woman do. I believe Mary did. When they laid Ellie on my chest in all her grossness and glory, it was awesome. I wonder if that's how it looked for Mary.

I wonder if she had problems getting Jesus to latch on and nurse. I wonder if Joseph knew what to do to help her while in labor, like Blair knew how to help me. I wonder if a Midwife was found to attend Mary or if she went for it like some of my friends have. I wonder when she started crying, because Lord knows, at some point she probably did.

I wonder if she thought about these things while Jesus was on the cross. I wonder if it ever entered her mind "Why my son?"

How could she know while she was in the throes of laboring to bring Him to this world that He would save it? How could she know that while she nursed Him as an infant, I would pray to Him for strength when my son was diagnosed with something that, though can be helped with surgeries, would affect him for the rest of his life? I don't think she had any idea. I don't think she could have carried that...

I think Mary was like me. I think she had her moments. I think she had good days and bad days and watching her son die on a cross for loads of people who she didn't even know might not have been a good day for her. I hope she took her thoughts captive though. I hope she caught that one and changed it like I did.

Why my son?

Why NOT my son? Why CAN'T God use this for His glory? Why WOULDN'T He chose my little family to point to Him during this crazy ride?

Believe me, I have my days and moments. I talk about this a lot right now. I'm researching Congenital Heart Defects and Hydro-plastic Left Heart Syndrome and finding out that it's really not that common. I'm finding out that yes, there are surgeries to help our son, but that he might always have issues.

I am going to fight though, to keep in mind that God does what He wants. And my response is to bring Glory to Him. No matter the circumstances.

Or maybe today was just a good day.
Maybe tomorrow won't be.

Maybe the day Jesus was crucified was a bad day for Mary.
But Oh Man...Oh Man, she was around the day He came back. 

And that, my friends, was a good day indeed.