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Guest Post: A Thankful Heart

14522310_10103802597491112_2101148165_o *a special post from a special guest* Hi there! My name is Courtney. I'm a daughter, sister, wife, and mother of two. Most people know my most defining role of the past three years is as a "heart mom," a mom fighting the world of congenital heart defects while encouraging her brave three year old in his fight against Hypoplastic Left Heart Syndrome.

Caysen was born in 2013 after a pregnancy that went smoothly until about 33 weeks. I began having health problems uncharacteristic to my norm, and after MRIs, spinal taps, extensive blood work and multiple specialists; it was determined I had optic neuritis. My body was attacking my optic nerves and taking my vision. After receiving my diagnosis, my mom turned to me and said "there's something special about this baby". It was literally attack after attack, and ironically we had NO idea of his heart defect until after birth. What foreshadowing that sentence had!

Caysen was born "healthy" and we took him home thinking our troubles were behind us. After 15 hours at home he began panting, and it was worrisome. We rushed him back to the hospital where I will never forget the NICU team coming out to us, shaking their heads and barely able to make eye contact with us as his situation was so grim. He was crashing and during the crash he had brain bleeds, liver damage, his lungs were sick, and his kidneys took a hit. This is where we learned of his diagnosis and that it was incompatible with life.14528176_10103802597471152_38629298_n

You see, HLHS essentially means half a heart. The three stages of surgery for it are called "palliative care". If he stabilized, he could potentially sit for the surgeries and have a shot at living a good twenty years or so with half a heart and then potentially need a transplant. There of course are many risks, but the other option was to let him pass.

It is here where we met some of the most encouraging nurses (Heather included!), and where we met doctors with such strong faith and hope in God that they would grab our hands and pray with us over his little incubator all while machines clicked and whirred keeping him alive and allowing him to heal and hopefully sit for his first surgery.

We have walked a long and grueling path over the past few years. Initially we were told Caysen wouldn't make it. God said otherwise. He had his first surgery, then we had a problem with his patched up stents in his heart at five months old. He crashed again. We were told the pump of his heart wasn't good. They told us then we would need a transplant. Then our cardiologist made a last ditch effort in the cath lab doing an intervention procedure and relaxed the heart. Again, God said otherwise.14518237_10103802597436222_1384129447_n

After a grueling third open heart surgery and recovery, complications have now led to us being listed on the heart transplant list.  We continue to recognize God's hand in everything and His perfect timing. God has the ultimate plans and holds our future.  He has shown it time and time again!

Throughout our entire journey we as a family have learned so much about our faith in God. Just when you think you can't take anymore, you're beaten down from the journey and utterly exhausted - you will find God will give you exactly what you need to carry on. You may not know how, but when you least expect it God provides the way. We've learned so much about God's timing versus our timing, and how His timing doesn't always make sense but when we look back you can see how that timing saved us from another complication or difficulty. God is never late.14569204_10103802597456182_879538776_n

We have learned when the pain is just too much to bear, check your perspective. The greatest lessons often come during life's most challenging trials. What can you walk away with? Better perspective? Strength? A reminder to take things one day at a time? To be present in each moment, no matter where you are - even if living in a hospital away from your family - because we aren't promised anything and it's a blessing to still have your child? Find the good. Find the joy. Anne Lamott once said, "joy is the best makeup". Putting a smile on your face can change the whole outcome of your day. On the bad days you might have to look exceptionally hard to find the joy, but choose joy.

Praising God through the storm is difficult, but such an intense form of worship. When the world is crumbling around you, still praising Him and acknowledging His goodness keeps your mind and heart on track. It allows you to lean into Him in the valleys. If you can do this, the view from the mountaintop will be that much sweeter.

I would be honored if you felt led to follow and pray for Caysen's journey as we wait for a new heart. We can be found at Caysen's Heart Updates on Facebook. But most importantly I want to encourage you all today. Everyone has pain and suffering and turmoil, it's impossible to escape in this broken world. It's up to you how you choose to respond to it. I, for one, couldn't have made it this far without my hope in God and our future promises! Such a comfort to know He has this all figured out and a beautiful eternity is the end result!

“Yet what we suffer now is nothing compared to the glory He will reveal to us later.” ‭‭Romans‬ ‭8:18‬ ‭NLT‬‬

Update: When I contacted Courtney back on September 22nd, I could’ve never anticipated what would transpire by the time this post was composed and published.   When she sent it back to me, I knew it was perfect, but not the right time. So like all our posts, I waited for the Lord to nudge me when to share it. Allow me to share what occurred in the meantime….

The call came on October 13th. Caysen received his new heart in the early morning hours of October 14th. He came home with his family on November 13th. After a lifetime in the hospital, going home was a process. Courtney said, “Caysen spent the ride home telling us he didn't want to go home. I think he was confused as he just didn't feel like he lived with us anymore. When we told him Daddy would mow - his attitude changed completely and he was more than excited.”

I asked Courtney if she knew how many days of Caysen’s life have been spent in the hospital. She answered, “Hard to say. This stay was our longest at 184 days. Before that it was 86. Our NICU stay was 72. We had another at least 60 days inpatient between that too, and that might be minimizing.”

This little baby and his family touched my heart over three years ago. The optimism and strength at work in their life is evidence of their relationship with the Lord, their unwavering faith and trust in Him. From the earliest days of their hospital stays, Caysen’s room was filled with praise and worship music. It can be difficult to find something to praise the Lord for when nothing seems right, when your baby is in critical condition facing more unknown than known. But we don’t praise and worship because of our circumstances, we praise and worship for WHO GOD IS. We don’t let our circumstance define God. We let God define the circumstance. And we’ve had the blessing of seeing that demonstrated in The Allen Family.

I pray Caysen’s story brings joy to your holiday. I pray you are encouraged to see God’s hand at work in the trials. I pray your heart overflows with gratitude. And I pray this precious boy inspires you to enlist as an organ, eye and tissue donor. May Caysen’s journey in getting his new heart bless your heart this Thanksgiving.

“After transplant our life quality has changed SO MUCH. He is happy and chatty and interacts with people…….So thankful for life outside of a hospital. For God bringing us a happy heart to allow us more time with Caysen.”- Courtney Allen

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The Meadows in Massachusetts

Monday afternoon I grabbed my computer along with one of the piles in the office and set down at the kitchen table to start paying bills. This is usually a task tackled in the office, but that place looked too scary. Piles and piles of papers had accumulated over the last three weeks, and I only had the focus for one at a time. We use Excel to record our transactions in our check register and we use our Discover card for nearly every purchase we make. So when it comes to balancing, I have two statements to balance, our Discover statement and then our bank statement. Dave would greatly disapprove of this process, but it’s worked for us for about twelve years now. We use our Discover card as many others use their bank debit card (so we don’t have one of those). Every single charge goes into our check register, so when the statement comes in, the money is there and we have accrued some nice cash back rewards for items we needed to buy anyway. The only downside, is again, we have two statements to balance, but utilizing Excel, we can easily filter those Discover transactions and typically complete the process proficiently.

I grabbed my green highlighter and started marking off line-by-line the items recorded. It quickly takes me back to recent memories. The joy stirs around inside my heart as I recall them. There was the charge from the theater when we went as a family to see Disney’s Inside Out on our anniversary. There was the charge from the department store when Brooklyn and I went on a little shopping spree. Then my mind and my heart had the joy to revisit several places, like Dave’s Diner, Plimouth Plantation, Martha’s Vineyard Gourmet Café, Fenway Park and The Duck Tour, oh and how could I fail to mention, Dunkin’ Donuts, as our good friends refer to as “Dunkies”.

It was more than touristy destinations. Those transactions indicated where we went and what we saw. Those places represent a trip that the Lord took us on to change us and grow us in who He wants us to be and what He has called us to do.

This can’t be chalked up to coincidence. How insignificant it seemed to Brandon and me at times that we felt we needed to change our domain name. And honestly, I searched my heart before the Lord repeatedly if it was a spirit of pride fueling our efforts to acquire it. I mean, you can see why, it’s my name. I was concerned for the possibility of being self-absorbed.

Then there was that roadblock. Yes, heathermeadows.com was available, but after four months of offers to purchase, the owner thought he was dealing with a real estate group and threw out a whopping $10k price tag. With my own soul searching, and then this news, it just seemed that the Lord was directing us away from it. Still yet, our spirit felt otherwise. He has called us to share our story. So share it. And share it we did. Doing the very basic task He called us to do, resulted in heathermeadows.com not being bought, but being given, and not only a domain given, but an opportunity given, to travel 1600 miles away to do what God has purposed us to do, share our story.

Brandon and I pressed in, seeking the Lord for what He specifically wanted us to share in our time in Massachusetts. We knew He had orchestrated this opportunity. Our desire was to be used by Him to not only share our story, but to speak into hearts a message He knew each one needed.

Every moment there was like Christmas morning; many gifts slowly unwrapped, revealing His love, goodness and the excitement of His plans.

Brooklyn and I had a delightful Saturday morning with the women of the East Freetown Congregational Christian Church. We sat around the table and enjoyed good food, loving interactions, and the sweet presence of the Lord as we got into His Word for a devotional and prayer. The women were personable, relational, transparent, humble, and had the hearts of a servant. Did we all really just meet? It didn’t seem like it. I was among friends, sisters in this family of God.

Never did we feel like visitors. We were welcomed in and met with the sweetest hospitality. We had the opportunity to participate in Joel and Lori’s traditional Saturday afternoon lunch with their best friends from high school, John and Kevin. The evening held another treat, getting to feed horses, (and a cute donkey who is in love with his neighbor pen mare), grill out eating some more amazing food, and fellowship with fellow followers of Jesus all hosted by Brad and Christine, who make you feel like you’re one of the family. Really. I mean one of the family. Christine wanted me to let her do my laundry, and let me tell you, she was serious. She also had Brooklyn over a few days later and coordinated a trial ride for her through a State Forest.

We were received in such warmth and such love. We were shown much generosity, rarely able to pay for our own meals.

Here we came to give. We were asking the Lord to pour us out to others. You’ve read how much we received, but that was just in the first two days. There’s more.

God graciously anointed the message. His Word was delivered with passion, conviction, and love for His people. There was an assurance that we were used as He desired. But I’ve learned something. When we walk in obedience to Him, we’re always going to be getting more. I was prepared to minister to the hearts of His people. I didn’t anticipate how greatly they would minister to mine. I went ready to serve, ready to be used, ready to give, but I got far more than I gave.

There was the mother of the young boy who was born with a congenital heart defect. It touched my heart the memories she shared with me, and the chance to meet her now healthy little boy who stood beside her. Then there was the missionary who shared her heartbeat and passion for Japan with me. A blessing to hear the reports of how God has provided for her to minister.

A special song was beautifully delivered specifically in ministry to us. A young couple visited with me after service, sharing their desperate journey to find a kidney. We had prayer and shortly after I received a message from Chuck, “We know God has plans for us. We plan on sharing with the church on Sunday.” An ultrasound photo said it all.

There was also a visitor, who came up to Brandon after service and explained that he was late for his church, and decided to pull in for service. He didn’t have time to speak to me, but wanted Brandon to know how the message spoke to him. With his hospital bracelet still on his wrist, he explained to Brandon that his baby was in the NICU and how timely the words were that he came to receive.

Call it a reason to retreat

I got some dreams that are bigger than me

I might be outmatched, outsized, the underdog in the fight of my life

It is so crazy to believe

That you gave me the stars put them out of my reach

Called me to waters a little to deep

Oh, I’ve never been so aware of my need

You keep making me see

It’s way beyond me

Anything that I got the strength to do

In over my head keeps me countin’ on You

I’m leaving the sweet spot, sure shot

Tradin’ it all for the plans You got

It is so crazy to believe

You take me to the place where I know I need You

Straight to the depths that I can’t handle on my own

And the Lord I know, I know I need You

So take me to Your great…

Take me to Your great unknown.

~Beyond Me- Toby Mac Publishing: © 2014 Achtober Songs

The Meadows went to Massachusetts and God did some pretty awesome things in us while we were there. To be honest, we got gut punched the minute we departed. In the process of catching our breath, we know there is great opposition for us to have more experiences like the one in Massachusetts.

It’s way beyond me. I’m definitely the underdog. I’m certainly aware of my need. And I know that whatever I can’t handle on my own, He can. And I’m brave enough and determined enough to pursue whatever that is. I want Him to take it all.

In freedom we live

As one we cry out

You carried the cross

You died and rose again

My God, I’ll only ever give my all

~Hillsong United- Take It All

But each day the Lord pours His unfailing love upon me, and through each night I sing His songs, praying to God who gives me life.     Psalm 42:8 NLT

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Charles is registered with the Mass General Transplant Team (617) 643 7193

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