I've never really experienced true shock and denial before. That moment you're presented with news, and your response is no, that's impossible. That moment where you ask the person to repeat themselves because surely you misunderstood them. I've never felt that before. Not when Judah was only a few months old and we were told he had a rare blood disorder. He had been sick so much we were just relieved to finally know what was causing it. Not even 2 years ago when we found out he had cancer. When they told us he had the blood disorder they said there was a possibility he could develop cancer. So I've never experienced that. That is, until this past Tuesday.

Our boys do one of those hybrid homeschool things (they attend the school 2 days a week, and we homeschool them the other days). And this school is awesome. They've been so kind and supportive to us over the years. The month of October has been spirit month (like spirit week, but spread out over the month since most of the kids that attend this school only come on Tuesdays). So each Tuesday this month the kids have been allowed to come to school dressed up for different themes. This past Tuesday was pajama day. What was really neat is, as many of you may know, over the years we have collected pajamas and donated to the Children's Hospital. So our boys' school joined in on this and asked families to bring new pajamas and DVDs with them to donate. So it was so cool Tuesday morning when I dropped the boys off at school to see this pile of pajamas and DVDs that had been collected.

When I came back Tuesday afternoon to pick them up the school had asked if I would come inside, and not go through the carpool line. Apparently, they had something they wanted to give us. I got to the school and went in and got the boys and then found one of the directors and she had this potted flower, balloons, and a gift bag filled a movie, candies, snacks, and several gift cards to restaurants for our family. Our family had just recently celebrated Judah's 2 years post-transplant anniversary, and they wanted to celebrate with us. It was such a sweet and kind gesture from them.

I walked the boys out to the car with these gifts. It was sunny. There was a cool crispness to the air. Life was good.

We had just turned out of the parking lot when my phone rang. I don't like talking on the phone but it was Vanessa, and I like talking to her, so I answered it. The first thing she said was 'Am I on speaker phone?' Depending on the situation, that can be a good or bad question. Perhaps she wants to whisper sweet nothings in my ear and doesn't want the boys to hear. Or maybe she's going to ask about doing something that the kids would find fun and if they find out about it they'd obsess it. Or it could be bad. There was pain and sadness in her voice. It sounded like she'd been crying. Crap.

I took her off the car speaker and said what's wrong. She said I just spoke with the Dr. It's not good. His cancer is coming back and he needs another transplant. She's had some success treating this kind, but she doesn't want to lie to us, it's more difficult to treat and the statistics are not on our side.

I didn't believe her. That's not possible. Life is good. We just celebrated his 2 year anniversary. They told us last week the results looked 'perfect'. Clearly I'm misunderstanding something. It was only for a few a seconds, but I was in shock and denial. I couldn't believe what I was hearing. I didn't believe what I was hearing.

'Say all of that again', I said. She couldn't. She was crying. But I didn't need to hear her repeat it. Those sobs I heard over the phone told me all I needed to know. So I joined her in crying.

In those early hours after this news I've come to better understand groanings too deep for words. Through sobs all I could muster to God was 'Why?'

I've sensed the war raging inside of me between the Spirit and the flesh. I know what God says. I know the promises He's made. But the flesh fights back. God isn't good. He isn't in control. He doesn't love us.

These last roughly 36 hours have been somewhat of a blur. Lots of tears, lots of conversations with Drs, insurance, family and friends, and there's this cloud that is now just hovering over us.

And if I'm honest, there's a wall that has surfaced. It's been hard to pray. I've literally had moments where I tried to pray but the words just weren't there. My flesh wants me to be angry with God. But in the midst of this pain and sorrow, and the blurriness of the last 2 days, God has slowly been chipping away at that wall.

Tuesday evening my parents came over to be with us. At some point my mom responded to a group text she's on with her brothers and sister and some other family members. There's a relative on this group text that she didn't realize was on there and this relative reached out to my mom. This relative lives in Charleston, and has a separate apartment at their home that they'd be happy for us to use. It has 2 bedrooms, 1 1/2 bathrooms, a living room, and a kitchen. And get this. When we looked up the address, the house is only a few blocks from the hospital (and also Riverfront Park). Wow.

Chip, chip, chip. God began to chip away at that wall. That news was like a nice breeze across your face when you're in the scorching desert.

Our church is currently studying through the book of Exodus, and this Sunday we'll be at the parting of the Red Sea. But originally that wasn't the plan. That was supposed to happen last week. But then about a month ago we ended up restructuring the series, which moved this part of the text to this coming Sunday. After receiving the news we have I can't think of a better place in scripture to be than at one of the most desperate moments in scripture. The Israelites are finally out of Egypt. The thing they have longed for for so long. But now they find themselves in a barren land with a sea in front of them, and an angry Pharaoh and army behind them. That's not how it was supposed to go, right? But nothing is impossible for the Lord. And He would prove that in this moment.

Chip, chip, chip. God continues to chip away.

Later Tuesday evening I got a text from our worship leader with what he was proposing as the final set list of songs for church this coming Sunday (we hadn't announced any of this news yet, so he didn't know what was going on with us). And I honestly didn't pay that much attention to what he sent me. I trust him and so I just wrote back and said looks good. Wednesday I had to do some yardwork, so I decided to download the songs onto my Spotify app to listen to them while I worked. I spent the next roughly 25 minutes crying my eyes out...while doing yardwork. I'm sure anyone who saw me thought I was crazy. The songs were exactly what my soul needed to hear. Listen to some of these words:

Sovereign Over Us (Aaron Keyes)

"There is strength within the sorrow
There is beauty in our tears
And You meet us in our mourning
With a love that casts out fear

You're the lifter of the lowly
Compassionate and kind
You surround and You uphold me
And Your promises are my delight

Even what the enemy means for evil
You turn it for our good
You turn it for our good
And for Your glory
Even in the valley You are faithful
You're working for our good
You're working for our good
And for Your glory

Your plans are still to prosper
You've not forgotten us
You're with us in the fire and the flood
Faithful forever perfect in love
You are sov'reign over us"

A Mighty Fortress (Heartsong)

"And tho' this world with devils filled
Should threaten to undo us
We will not fear for God hath willed
His truth to triumph thru us

A Mighty Fortress is our God
His kingdom is forever"

Do it Again (Elevation Worship)

"Walking around these walls
I thought by now they'd fall
But you have never failed me yet
Waiting for change to come
Knowing the battle's won
For you have never failed me yet

I know the night won't last
Your word will come to pass
My heart will sing your praise again
Jesus you're still enough
Keep me within your love
My heart will sing your praise again

I've seen you move
You move the mountains
And I believe
I'll see you do it again
You made a way
Where there was no way
And I believe
I'll see you do it again

Your promise still stands
Great is your faithfulness
Faithfulness
I'm still in your hands
This is my confidence
You've never failed me yet"

Every Mother Every Father (Porters Gate)

"Every mother every father
Called to raise up sons or daughters
May your heart be patient
May your mind be clear
May our God be with you and calm your fears"

Red Sea Road (Ellie Holcomb)

"How can we trust
When you say you will deliver us
From all of this pain
That threatens to take over us well
Well this desert’s dry but the ocean may consume
And we’re scared to follow you

Oh help us believe
You are faithful you’re faithful
When our hearts are breaking
You are faithful you’re faithful
Oh grant us eyes to see
You are faithful you’re faithful
Teach us to sing
You are faithful you’re faithful
You’re faithful

We will sing to our souls
We won’t bury our hope
Where He leads us to go there’s a red sea road
When we can’t see the way He will part the waves
And we’ll never walk alone down a red sea road"

We Will Feast in the House of Zion (Sandra McCracken)

"We will not be burned by the fire
He is the Lord our God
We are not consumed by the flood
Upheld protected gathered up

In the dark of night before the dawn
My soul be not afraid
For the promised morning oh how long
Oh God of Jacob be my strength

We will feast in the house of Zion
We will sing with our hearts restored
He has done great things we will say together
We will feast and weep no more"

Gosh. My flesh wants to be angry at God, but despite my unfaithfulness, He lovingly and faithfully continues to chip away that wall and draw me to Himself.

I could list several more of these examples that have occurred. I could mention how on this exact date 2 years ago when Judah was in the PICU, Vanessa posted about a mom she met whose child was also in the PICU. This child, according to the Drs., wasn't going to make it early on. And yet, here they were, some 200+ days since first being admitted to the hospital, and they were about to release her from PICU because she was doing well. In that post, again, that just happened to be posted exactly 2 years ago so that it would pop up on Vanessa's facebook memories today, Vanessa said this “I need not be afraid of the miracle maker. The Author of life.”

Chip, after freaking chip. God is relentless. I can't deny His sovereignty. Yes, this absolutely sucks. It's terrifying to think that maybe our child won't make it this time. I'm reduced to tears every time the question crosses my mind, 'was that the last time I will experience this with Judah?'. Knowing what the transplant process is like...knowing the pain Judah will be in...knowing how exhausting that road is...it is overwhelming to think about the fact we have to walk it again. But I can't deny God's sovereignty. I can't deny that He is orchestrating this. There are too many things that have happened in just these past 36 hours that it would be absolutely foolish to write off as chance, or luck, or coincidence.

And if God is orchestrating this. And if He's never before proven Himself to be unfaithful or not good, then all I can do is cling to the hope that He is good. That He is in control. That He loves me. He loves Vanessa. He loves Cai. And he loves Judah. In fact, He loves Judah far more than Vanessa or I can or ever will. And His plan for us is far better than any plan we could ever imagine.

Hospital Life and Judah Update: Week 1

I sat in my favorite hammock chair pouring my heart and tears out to the Lord. Today was the day we were beginning our hospital life helping Judah fight 2 different forms of leukemia before his bone marrow transplant. I remembered how the very first time I walked into the clinic holding my 6 week old beautiful blue baby bundle, there was a guy that Hart knew from college. He fought leukemia as a child and was back for his yearly check-up. He had just had a baby boy. Something most cancer patients know just won't ever happen for them.

I remember at that moment the Lord whispering to my heart, I can do all things. See, what good I can do.

In my trembling fear gazing at my newborn, I wondered, "Was this foreshadowing things to come?" If so, God was telling me that He had it. Nothing is impossible for him.

I sit tonight after our first week of chemotherapy admitted in the hospital in awestruck wonder of God's goodness. I know it will get harder. This is just the first week of 5, but truly I feel so utterly blessed. There were tons of hard moments this week. We had to go back to surgery 2 days after to replace a central line that Judah had pulled out. We had to fight Judah to get oral meds into him. Chasing a toddler around hooked to a sensitive IV line and heavy pole that constantly was getting caught on things and wasn't long enough to keep up with how fast he was moving was EXHAUSTING. There were moments of intense frustration and little sleep. But there was SO so SO much good that all I can do is praise the LORD!

Walking into this week, I had the pleasure of being able to worship at church one last time for awhile and the song, "Christ be all around me" by All Sons and Daughters and it was one of those moments where I had to lift my hands and everything in me said, "YES! This is what I need." Christ before me, Christ behind me, above and below me. All around me.

And He has been. He has covered Judah like a shield. He has allowed Judah to be remarkably unphased by chemo thus far and I'm so grateful for this so very tiring week.

We had the body of Christ visibly around us in friends bringing meals to the hospital (SUCH a help!!!), sending us encouragement in many forms (texts, chocolate, links to songs, small gifts for me and the boys, financial giving, visits), having family help out, and the hospital staff here at Palmetto Richland has been so fun and positive, and helpful! It's really been amazing!
 

God is with us! He is before us and paving the way of complete healing for Judah!

Thank you for continued support and prayers! Because of you, we are being held up and sustained! 

Stunned by His Faithfulness

photo cred

I was hot and flustered trying to put Judah's carseat into the van in the middle of July. She scared me as she said my name which I barely heard over the music and thinking about how I was going to wrangle my wild child into his carseat. It was my neighbor and she wanted me to come over to her driveway to give me something.

I was on my way out to drop the boys off at a friend's so I could go show houses and running a bit behind schedule.

As I pulled into the drive way, she came out with a small rectangular piece of paper in her hand. As she got closer, she held it out to me and said, we just wanted you to have this. Get that baby well.

It was a check for $1,000.

I was stunned. 

We love these neighbors so much. They are like my kid's 3rd set of grandparents. They have watched my kids run around barefoot to pick blueberries in the back yard and have seen my little daredevil's tricks on the trampoline over and over again. They have given popsicles over the fence and taken them when this frazzled mama just needed a couple hours to clean the house. They have gotten mail and fed our dog when we were out of town.They have been sweet family right next door for the last 7 years, but I didn't expect this.

In all honestly, I didn't expect any of this.

Some 20-something year old man halfway across the world giving my baby a chance at new life. A neighbor handing me a check for too much money to go towards all the added expenses coming up.

And suddenly, I see right up close that God sees my heart and knows my fears and wants to show me He is bigger. When I pray and ask God to be CLOSE; He is. He gives and provides and uses His people for His glory and leaves me speechless, because I am too used to the mundane to see this God that is able to move mountains. So he proves it to me as he stuns me out of complacency. He is the giver of life, of new life, of needed things to help relieve stress and mostly, he is my God the One who also had me read this passage this morning before all this happened and as I reflected on it again this evening, I can't help, but see this verse jump out before me.

"The living, the living, he thanks you, as I do this day; the father makes known to the children your faithfulness." Isaiah 38:19 

If you would like to find out more about Judah's health updates check out his FB page! If you would like to know more about his giving, go here!

Be Near

This trial is different. I have a confidence going forward. I know it will only be a season. Trials don't last forever. I can trust God. All things I tell myself all day long.

I know this, but it doesn't stop the heaviness that can fall upon you in an instant.

I spent the majority of the day reading a book. The first book I have read in a long time. Once I get into a book, I have trouble putting it down. I'm just like my Gramie that way.

I had no anxiety or worry really floating around in my mind. I was just trying to finish my book between episodes of my children bursting through my bedroom door.

Then suddenly it was there. What was that? Why did it suddenly come on me? Where is this coming from? 

I felt the weight of it. All of a sudden I wasn't normal. All of a sudden I didn't want this life with a child diagnosed with pre-leukemia. I wasn't like everyone else. I was alone.

The darkness enveloped me and I tried pushing it away to no avail.

Kissing the boys goodbye, I grabbed my car keys and went to meet a friend. I admitted the haunting heaviness that I was carrying. I didn't want it. I wanted to be light and free and not heavy laden.

Why was my life full of trials? Why me, Lord? 

In the 7 years we have been married, we have experienced what many don't experience in a lifetime. One year of newlywed bliss, then a little one surprisingly coming 9 months later. Financial burdens, cars without A/C in SC heat, one car family, past health trials, struggles through fostering while simultaneously growing life inside of me. Second son born, then hospital life and a diagnosis we thought was the end.

It's felt like one string after another, yet there has always been joy and blessing in the middle of it all. All of it has melded our family together and closer to the Lord, even when he has felt distant.

I finished my book and grabbed my journal. I knew what was wrong.

"Lord, I want to know you CLOSE in the midst of this trial with Judah's health. I don't want to question what you are doing or why. I just want you to be near to me. I don't want to be complacent. I want to be moved by your spirit & love you deep. Please don't be distant. Let me know more of you. Help me to hunger for you, Lord, to feast in your Word. Draw me in Lord & cradle me now. I need you Lord. Be near." 

I was tempted to put it aside and turn off the light. But, I grabbed my Bible instead. I flipped it open to the Psalms and read exactly what I saw first. Psalm 73.

This Psalm starts out by saying, "Truly God is good to Israel, to those who are pure in heart. But as for me, my feet had almost stumbled, my steps had nearly slipped. For I was envious of the arrogant when I saw the prosperity of the wicked." 

That was it. I was envious. I wanted normal. I wanted to not be the mom of the child that would die if we didn't go through a bone marrow transplant. I wanted to be able to have an easy life, free of trial and coast right on through, enjoying whatever riches we could achieve and live right on however we desired.

Without Jesus. My feet had almost stumbled.

God brought me to this exact Psalm to show me what that life would be like apart from him. It was not worth being envious over. Their life seems easy and best, but it brings death. There is no pain and everything appears to be perfect. They are normal. Nothing appears to be wrong on the surface. But it is far from desirable.

"Nevertheless, I am continually with you; you hold my right hand. You guide me with your counsel, and afterward you will receive me to glory." v. 24 

"Oh, Lord, you are holding my right hand. Even now reading this exact passage. You led me here. You are guiding me with your counsel. Thank you, Lord!" 

"Whom have I in heaven, but you? And there is nothing on earth I desire besides you." v. 25

Straight up conviction like an arrow to my heart. I wrote in my journal, "...there is nothing on earth I desire besides YOU."

How I fall short of this! Forgive me Lord! Be in front of me. Let me desire only you on this Earth.

Only Jesus.

I can't be normal, because God loves me. He wants me near and He wants me to inherit more than anything on this Earth could give. He wants to give me himself.

Heaviness gone. God was near right now leading me to himself.

"But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all your works." Psalm 73:28

God is promising to be near to me. That is where it is good. He is my refuge. And I have to make it that way. All this is happening in my life, so that I may tell of all His works!

Who am I to doubt that? 

photo cred from Pinterest

All There

He lay there belly first in the sand with his smiling face lifted up to the sky. I looked down at him, unsure if I was really ready to get sandy and wet. There was something about him I couldn't help, but take in.

He was all there. He was not worried.

I have bore many worries ever since we got the news over a month ago that he was pre-AML right as we turned the corner of his 2nd birthday. Despite my trust in God, of course the worry as his mother comes down in dark waves that take you to depths you don't want to go alone. Ever.

As I stood looking at him and seeing how happy he was, knowing this would be the last time he would be at the ocean shore for quite some time before his transplant, I couldn't help but be reminded of how I should be more like him. He was doing the exact thing that God wants me to do. Be all there. No worries about the future.

I sat down next to him and let the sand sift through my fingers, enjoying the water splash over us and ebb back again. We were there together and I allowed myself to be all there until the fears crashed back in trying to rob my joy yet again.

The irony is that I do trust God. If the worst thing happens. If my child died. I still believe God is good. That he loves me and that he knows what is best for me, but I would live with an ache that would never erase, and I know I would never be the same. And I'm not sure I would be a person you would want to live with.

I never thought this world would be my world, even as I walked in and out of the cancer clinic passing the little bald heads as we went in and out for labs. I saw in their faces the heaviness of seeing their child's life on the line and I wanted to understand, but didn't know how. I was always lighter. I don't think you really know until it's your reality and you feel the weight of what it means on your shoulders.

Even with all the questions swirling in my mind, I know that the grace of God is given in the exact portions you need it, exactly when you need it. I cannot fathom how His redeeming grace will be with me as we walk this road together. But without a a doubt, I know it will come at the exact moments I need it, because it's happened already.

Sitting in that room for the first time, meeting the transplant doctor and hearing all the things that could possibly happen to your child as he plays innocently on the floor with toys, I did not cry. I have no idea why. In fact, the doctor was worried she didn't adequately explain everything, because in that moment, God's grace was filling me with peace despite what I was hearing. He has Judah's life in the palm of his hands! I have no choice, but to walk forward and trust Him, that he is good!

I often wonder what it would have been like to be the Israelites lost in the wilderness. They knew the Promised Land was right on the other side, but they didn't want to trust God. They were content to sit in the hot, blazing desert where they could control little around them, than to follow God into the land that He was giving them rich with milk and honey.

I remember once digging my heels in and refusing to go where God was taking me. How can this be God's plan? How can He be doing this to me? None of this makes sense. This is NOT right? What on earth is happening? 

The surgeon scribbled onto a pad of paper what my insides would look like and explained I would wake up with a bag stuck to my skin. I was septic and it was poisoning my body very quickly. They had 4 hours to rush me into surgery and save my life by removing my entire large intestine, so ulcerated from colitis it couldn't even function anymore. It had burst. As a 20 year old college student, I could not even fathom how the heck this strange situation came into my life and how God would use something like this to prepare me for this time with Judah. I didn't go through that trial willingly. God gave me no other option and I was mad about it for awhile. 

I missed my exit as I listened to his coordinator tell me the news I had been waiting to hear. They had chosen a donor and they had sent the paperwork to Europe to be then delivered to my donor who would receive the call that they had, in fact, the exact same protein as my wild 2 year old little boy. They were his match. When could he donate?

I was filled with a relief and a heaviness all as the same time. This was real. This was happening.

I can't say what will happen at the end. This is a story that God is writing and I'm flipping the pages of the book as fast as I can trying to read about what happens next in the plot. You get to follow along with me and see the rawness as it comes.

I know one thing for sure. I want to be like the little boy belly down in the sand not a care in the world with a zeal for life that stops you in your tracks and makes you sit right down in that surf, get sandy and wet, and try to remember what it was like as a kid again with no worries in mind. It's here where God wants us. It's in this place of trust as we pour out our fears to Him, knowing that He is the good good Father and He will take me, Judah, and you into that Promised Land, whatever that looks like and wherever he has it. This side of Heaven or the other. I trust you, Lord Jesus with my life. And I trust you Lord with Judah's life. Will you trust him with yours? Make us new, Lord. 

This is one of many to come as I chronicle our journey through bone marrow transplant with my 2 year old Judah. My voice as a mother through it all. Check out Judah's facebook page for the most current updates.

Judah Jet's Journey: "You need to write!"

There are times in my life, usually when I am least expecting it, when I know the Lord tells me to do something. One of those moments happened this morning as I was listening to the sermon in church and praying about what our pastor was saying. The sermon was on Romans 12 and Matt was specifically talking about how each of us are apportioned unique gifts to use and often times those look different in different seasons of life. As I was thinking and praying about this, I said, "But Lord... I can't use any of my gifts I normally would in this season!" 

This season. This season is one that is 100% pulling me out of my comfort zone. Literally. Yes, I am worried about my 2 year old diagnosed with pre-leukemic cells and developing Acute meyloid leukemia and going through a bone marrow transplant. Who doesn't worry about all that means?

Right before the bone marrow biopsy that revealed our not so lovely news

But one of the things I am dreading most is the loss of physical comfort (shallow, huh?!), leaving our home for an extended period of time and not being together as a family (not so shallow, I suppose). In addition to having to sleep in the hospital on that terrible narrow couch (dread) in horribly tiny hospital rooms, being up all night with a possibly vomiting/sick child, making my child sick with chemo, not being at HOME for something like 5 months, at the earliest, being without my husband and oldest son. Being away from our church body and friends, showering down the hall in the communal bathroom because we can't share a shower with Judah. Shallow stuff like that. It helps to focus on the shallow sometimes because the hardest stuff is too overwhelming to think about all at once.

Before I could even finish my prayer about how I can't use any of my normal gifts in this crazy season, I heard from the Lord, "You need to write!"

Wait, WRITE?!

Ummm, I don't consider that a gift. In fact, I've felt as if I have had nothing to say for almost 3 years now, hence why I haven't posted very much. Blogging used to be my thing in a way. My outlet and I had a voice. But for awhile now I've sat down to write, but just couldn't push publish, even if what I thought I wanted to say could be shared. It was as if the Lord silenced me for 3 years and now, suddenly, I know I need to speak and write through this.

Writing means being vulnerable for all to see on the internet. Then there are the comments from people who like to then respond by giving me advice as if they know exactly what I am going through. And it's not like I am incredibly talented at gram-mah... or something. (HA!) Then there's the question, but who really wants to read what I have to say????

Opening myself up from the secluded hiding place I have been in away from Blog Land, takes a deep courage I must muster up, because this time, I'm not sure what I have to say is going to be all that lovely. This time you are going to see a mom in the midst of a trial no mom wants to face with her family, a child going through a transplant in which there is an 80% survival rate. (shudder)

But Lord, if writing is what you want me to do, I will do it. I will be raw and open and honest and let you see this ugly sinful heart I have and how it's only because of Jesus that I can still have joy even with all that is about to come, even on the worst days.

Lord, go before me. Give me your words to speak. More of you, less of me.