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.

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.

Messy

I've been thinking a lot about this Blog and what it's named. Been thinking about Art and Life and all that jazz.

The other day my amazing Husband picked me up some gesso from the store so I could re-paint a few things. As I was using it, little bits of paint splattered onto my hand, and then got wiped onto my sleeve. I was struck by the thought that I don't have a pair of paint pants right now...and I got sad.

Art can be so messy. I love when it is. I love when there are flecks of paint on my nails and on my clothes. I love the process of art. I love that you start with something and work until you create something new and unique that you like. It's a lot of fun.

So often when people look at a piece of art they see the finished piece. Something whole. Put together. They consider it beautiful. As they should, art is meant to be looked at and enjoyed.

When I look at pieces of artwork, I see the love and the process behind it. I wonder at the hours it took to make something, the work that went into it, the layers and layers of paint. I wonder if the artist thought about scrapping a project entirely and starting again. I wonder if they ever hated a piece only to have loads of people beg them to leave it alone.

Art is a messy, beautiful process.

Life is a messy, beautiful process.

God Art.

I wonder if He looks down at our lives and loves our messy beautiful selves. I wonder if He knows we are works in progress and cringes sometimes while He works on us.

It's a quickly going to be a new year.

I'll be honest, I'm not looking forward to it.

I'm not looking forward to the fight my son will have. I'm not looking forward to leaving my girl while I go to have him. I'm not looking forward to it, I'm just not.

I'm looking forward to finding out how God will move. I'm looking forward to finding out how close Blair and I will come through this.

If I look at this past year as a canvas, as an art project, I would paint over parts and start again. I would paint over the loss of yet another baby we didn't get to know. I would paint over the days this summer where I could barely make it to the bathroom before getting sick. I would paint over the day that I went to have an ultrasound and they "found" something...when I was alone in my car, crying because I didn't understand and didn't know who to call or what to do.

Here's the deal though, just because you paint over something, doesn't mean it goes away. Those layers will always be there. It will always be part of that painting.

I'm marveling that despite my messes, despite the long process, I am still becoming God's Art. I am still a masterpiece. He loves me, right here, right now. Even on my worst days (and believe me, days when I have to call a friend to come change my girl because I literally can't stop throwing up...that's a worst day).

It's important to remember I think. That Art is Messy. That even God's Art gets messy.

That I am still a Mess.

But with every day, with every brush of the Savior's paint brush I become more and more beautiful.

I've been trying to think of the best way to start this post. I've had a hard time with it. I don't articulate well these days and I don't ever want to sound unkind. 

We had an appointment yesterday and I haven't really talked about it (except for a select group of people). I know that I don't owe anyone anything, updates, thoughts, feelings...I share because I want to. However, I share when I want to. 

Seeing Tinman's cardiac pediatrician always just throws me off. It always just sorta sucks. I hate the echo-cardiograms and the ultrasounds, I hate visibly seeing his heart up on the screen. It's pretty clear at this point. You can see where the left of part of his heart doesn't work. Having Blair there helped so much yesterday and I'm thankful he was there. It still throws me off and hurts my heart. 

I was just done yesterday. I just wanted to ignore the whole world and cuddle Ellie and snuggle next to Blair. Nothing new happened, we didn't receive more or less information, I just wanted to be home and forget anything else existed. 

I'm having a hard time right now being graceful. Tactful. People wanted to know how it went and how we were doing and it's so sweet, so many people care, and I'm so so so thankful. Some days though...some days, I just...I'm angry. I was angry yesterday. At everyone. At no one. At myself. At any person who dared to message me. Wonderful people who care so much about Blair and I...and I just wanted to be mean. 

I didn't say much of anything to anyone, because it's very strange for me to feel this way. I'm used to people not knowing what to say. People did that after our miscarriages. People did that when I lost 50 pounds with Ellie. I realize people think I'm strong and that I'm handling this well and that they just don't know what to say and they care so they want to say something. 

My son will never have a normal heart. These surgeries prolong his life and give us so much more time than other people in the past have had, but he will always need to be careful. He will always need to be monitored. Unless someone gives him a whole new heart one day he will never be "fixed". Please don't say to me, at least there are surgeries. 

What terrible words...at least. 

Those words, never, in any situation, make someone feel better. 

I am thankful for the time we will have and already have had with our son. I am thankful that they will work on his heart and give us more time. I am thankful that medicine has come this far. 

I am scared. I am scared he won't make it through that first surgery. I am scared that the right ventricle of his heart will decide it's too much work and wimp out too (which, I found out yesterday is something we need to be watching for). I am scared that he will never want to nurse from my breast. I am scared that Ellie will scream every time she has to leave me, because she realizes that Mommy doesn't get to come home. 

I am scared and thankful and so full of so many emotions that some days it's all too much. 

I wish my Mother in Law could be home when he's born, so her calm voice of reason and her "we're going to make a plan and make it happen" attitude will help me on my emotional days. 

I wish I knew if after he's born if I will be able to go back to work and I don't know that yet. 

I wish that I didn't have to look into being induced because if for any reason I went into labor on my own and had my son in the car, it would be bad bad bad news bears. 

I wish and hope and pray a lot of things right now. 

Appointment days end up being bad days. Yesterday I needed to calm and quiet myself and sit at Jesus feet and tell him all these things and more. Because I know this will bring me and Blair and even Ellie closer to God. I know that we will reap in joy after these tears and hard times. I know that no matter what I feel God is holding me closely and whispering his love for me.  I know that it's ok to admit how scared I am, because once I admit that God can take it and remind me, "Fear not, for I am with you, I will not forsake you". 

I talk about this a lot. I'm going to keep talking about it. I know some people will not want to listen and that's ok. Waiting for Tinman to be born is like being stuck in a weird limbo where I know what's going to happen...and I'm just...just waiting for it. It's not my favorite place to be. 

I don't mean to offend anyone or upset them when I say that I might get a little distant from people. understand that as much as I push people away your support and love mean the world to me during this time. I just...I just don't always want to talk about it. It's so much easier to write about this all once I've had time to process this than to have to talk about it when I'm grocery shopping at Walmart. 

The more information we gather and the closer I get to welcoming my son earth side the crazier I feel I become. 

Please please please, I beg for your patience. That's all I know to ask for right now.

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. 

Recording this Journey

What a strange journey we are embarking on...

First we were like, let's get married, yayyy! And then we did. And then we decided (kinda) to have kids, and we got pregnant and were like, yayyy! And then we lost that precious baby...and God reconstructed our hearts and our minds. And we got pregnant again, and made it through the first trimester, and we were like yayy!! And then I got sick...but we had the most precious baby girl, so it didn't matter. And then we got pregnant again again, and then...we lost that wonderful baby as well. I went numb for a little while. Until we found out, for the fourth time, we were pregnant. We held our breath to make it past the first trimester and we did...and then.

And then seems to be our words. Maybe there will always be an And Then in our marriage. And then this happens or that happens or doesn't happen, who knows what our expectations will be from here on out.

I'm figuring out that nothing is certain. Nothing is set in stone. Everything is left up to my God and He's got His ideas of how things will go.

I feel like Blair and I are reading a book...watching our lives unfold together. We are the characters and God is writing along, throwing out some curve balls and plot twists. But my little brother likes to quote something "When God throws you a curve ball, don't duck, you just might miss something" (Yes Zeb, I quoted Extreme Days...get over yourself...what am I talking about, he doesn't read these! haha). Every curve ball God has thrown us has brought us deeper into relationship with Himself. Has revealed something we would have missed about Who He Is if we hadn't gone through it.

My son having HLHS (Hydro-plastic Left Heart Syndrome) is, somehow, going to bring us both closer to God.

But the truth is, right now, I don't see how. I don't know how. All I know is being scared and pushing through. All I know is taking day by day. All I know is praying. All I know is reminding myself and asking Blair to remind me over and over again that we will be ok. All I know is that I finally reached out to a support group, and while it was a good idea to do so, it's also hard to see their pictures and hear their stories and know that that is what is in store for us.

I am worried about Ellie while I'm gone with V (the affectionate nickname for our son), I am worried about Blair while I'm gone, I am worried about our bills, I am worried about people who are also going through hard things. I am worried people will not want to come see us hours away at the hospital, I am worried that people will stop inviting me to things. I am just worried. I am.

I don't let those worries consume me...at least not everyday, because I still have the most adorable little girl who needs me and right now, I need her. I cuddle her and rock her and cry sometimes when I do it, because soon, she's gonna be with Daddy an awful lot and I am going to miss her something fierce. (Let's be honest, I miss her when Blair and I go on dates and leave her with my parents...)

I'm trying to write more. I'm trying to record this. It's a journey and Lord Willing I will be on the other side of this mountain and won't it be awesome to see how we got through?

Won't it be awesome to see how my awesome God uses this for His Glory?

See, today, is a good day. And I need to remember that. I need to remember that God will see us through, I need to remember that He has a plan, I need to remember that today on December 8th, I was ok and at peace.

Just like I remember that last Thursday I  was not ok. When I saw his small little heart up on the screen a lump rose in my throat. When the Dr encouraged me to be near the hospital he will need surgery at I felt my eyes well up. When she asked me why we wouldn't opt for surgery while he's in the uterus and I explained that the risks, his death, were just to great, and she scoffed slightly, I was not ok. Just like I remember that yesterday when I reached out to other HLHS moms and dads and saw pictures of their tiny newborns hooked to tubes and machines and the scars...I was not ok.

Day by Day. Week by Week. I am going to commit to recording V's journey. I am going to remember...

God is good. All the time.
All the time. God is good.