my HEART transplant

Another truth that will take a lifetime to learn…..I believe those were some of my last words on my last blog post – two years ago.  Strangely, that does feel like somewhat of a lifetime ago.  Isn’t that always the case when you are learning a hard lesson?  I was writing about my Aunt Sarah who died of breast cancer in 1991:

“And the truth is, Sarah did not spend her time believing FOR something. She believed God would heal her, but her faith was not in the healing. Her faith was in the Person who could change her circumstances in a breath. And knowing full well that He just might not do what she was asking. To me, that is the most staggering, mind-blowing, amazing kind of faith. She believed God was going to heal her, but decided that even if he didn’t, she still believed HIM.”

Honestly, my heart learned this truth in a moment.  But it’s taken much longer to begin applying this truth to my life and to our journey with Bryce’s heart disease.  What I shared in March 2013, was just the beginning of a new walk with the Lord for me.  When this profound truth finally dawned on me, my entire perspective began to change.  For the first time in years, my relationship with God became less about my needs and prayers and more about Who He is.  There were times it felt like an arm wrestle with God.  Other times I have been ashamed to feel like a teenager storming into my bedroom and slamming the door.  But mostly, it’s been a moment in life where I’ve been still and letting myself truly understand for the first time just how good He really is.  Even when the healing isn’t quick.  When the wound continues to go deeper.  And understanding never comes.  HE IS ALWAYS FAITHFUL.

I have never once questioned, “why us?” when it came to Bryce inheriting heart disease.  I shudder when I hear people ask that question.  Because why NOT you?  Why NOT me?  None of us are immune to hard times and sickness. 

During Erik’s illness in 2002-2003, literally hundreds of people prayed on our behalf that our children would be delivered from the curse of heart disease.  This was my daily prayer as well.  And at one point, I honestly thought I heard God clearly say that my children would be spared.  I finally stopped asking for it and just started joyfully and whole-heartedly thanking the Lord for my kids’ healing.

Then my towers fell.  We found out Bryce wasn’t delivered.  He wasn’t healed.  I had heard wrong.  Or I only heard what I wanted to hear.  Not only was he diagnosed with cardiomyopathy at the age of 8, but now we were looking at a heart transplant in his late teens or early twenties. 

Suddenly I felt very silly. I felt tricked and I thought that every precious moment I had spent with the Lord had been false.  A joke.  He must have been embarrassed for me as I poured out my heart believing such a wrong thing.  Did the angels roar with laughter?

I cringe to admit the depths of despair I discovered in myself.  But my thinking was so off base!  And man was the devil more than happy to start singing that song all day everyday – what a fool you are, Jennie!  You imagined it all!  There is no real intimacy with God, sucker.

First let me say with fervor and complete repentance…..It is a VERY dangerous thing to make any assumption about something God is saying that doesn’t come straight out of the Bible.  Yes, I believe He speaks to me in intimate ways that are not printed on the page.  But when you start believing something like “my son is healed because God said”, you have to readjust your thinking.  This is exactly where I got stuck – for a very, very long time.  The truth that Aunt Sarah taught me (that took 20 years to sink in) was that I was trusting in the healing and not the Healer.  I had to come to the place where even if He doesn’t heal Bryce, I’m still going to trust in God and know that he is always good and always faithful.  No matter what.

In September 2014, we got excellent news at Bryce’s doctor’s appointment.  The echocardiogram showed that his heart was less enlarged than it had been and that he appeared to be growing into his heart.  We had never heard news like that before.  The doctor was cautious, but extremely happy with the results. The first thing I always do when Bryce and I leave Children’s in Dallas is call my mother.  Her reaction was what you would expect.  She said, “Well, praise the Lord!”

In that moment I felt such conviction because of my reactions on the countless prior occasions when the news had not been good….and I thought, “Yes, but praise Him anyway!”  That was when the real experience happened for me and when I finally started applying Sarah’s truth to my life.

Yes, praise the Lord that Bryce is growing into his heart.  But even if he wasn’t, praise the Lord!  Again, conviction flowed out of me and the repentance I felt in my heart was overwhelming.  I asked God again and again to forgive my lack of faith in the last several years of dealing with this and I thanked Him for His patience in teaching me and giving me the time and strength to finally get it.

In March of this year, we got more good news.  Once again the echocardiogram showed that his heart was less enlarged but also, it was functioning better.  In other words, the 3 medications Bryce has been taking were doing exactly what they were supposed to – allowing his heart to function better.

And the absolutely best part – for the first time ever a cardiologist said MAYBE Bryce wouldn’t need a transplant down the road.  I just cried and laughed.  And cried.

When I called my parents on the way home to tell them the news, they were in tears.  Just weeks before, they had attended a prayer meeting and prayed specifically for Bryce and against the curse of hereditary heart disease.  This was their answered prayer.  This was the healing.

My heart rejoices every day that we got that good news.  It was such a relief to hear the medicine was working and I felt a huge burden lift off my shoulders.  Is Bryce healed?  I don’t know.  And I might not know until the other side of Heaven.  And you know what – that’s okay! 

I’m going to praise the Lord today and tomorrow.  I’m going to praise the Lord when we get good news and when we get bad news.  Because He is the same no matter what.  He didn’t bring the sickness.  He didn’t create it or ordain it.  We live in a sad and fallen world and people are always going to get sick.  But He has a purpose and a plan for us and nothing can change or alter that. 

My journey is not over.  Understanding and learning about what God says about healing may always be one of the most fascinating things to me.  Maybe because I’ve seen it go both ways many, many times.  There is no explanation.  There is no pattern.  There is no magic formula or scripture.  And I have decided to cut my humanity some slack and realize it will NEVER make complete sense to me.

But HE NEVER CHANGES.  He is always good.  Oh friend, if you are going through anything like this I encourage you to press in to Him.  Even when you don’t want to – actually, ESPECIALLY if you don’t want to.  He will reveal Himself to you in precious ways, and with the peace that surpasses your understanding.  Don’t be hard-headed and rebellious like I was.  Let the truth set you free earlier rather than later.

I don’t know why I waited so long to share this.  I think it might be because Bryce just graduated from high school and is registering for classes and looking for apartments in another city.  He’s healthy.  He’s happy.  He’s embarking on a new chapter in his life.  And maybe I thought this was a good time for me to do the same.

Ezekiel 36:26

I will give you a new heart and put a new spirit in you; I will remove your heart of stone and give you a heart of flesh.  And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws.

 

 

    

 

 

the HEART of Sarah

My Aunt Sarah was diagnosed with cancer when she was 41. I was just a kid so I wasn't in on all the grown-up conversations between my parents and grandparents about her prognosis or the difficulties she must have had being sick and raising two teenage daughters. Her death stunned me. Then seeing my Grandpa and Grandma so utterly grieved.  Worrying about my cousins and imagining how deep and sad their loss was - It was a hard time for my family.

Aunt Sarah was one of the most Godly women I’ve ever known. What I didn't know about her then, I have learned from her daughters over the last 21 years. And it seems the older I get the more Sarah's life impacts me. She was the ultimate homemaker and mother. But the thing that I find most amazing is that she believed until the moment she died that God was going to heal her.

On the morning of December 20, 1991, Jimmy Evans, their pastor and family friend went to visit Sarah for the last time. He sat by her bedside and said goodbye. At one point, Sarah said to him, "Jimmy, where is your faith?" That moves me to tears every time I think about it. Where is your faith? Hours away from death, and that was her question.

We know that we will never fully understand healing on this side of Heaven. But I think it’s an important topic because the Bible is pretty clear that we are to ask for it and expect it. I think God wants to teach us something about that and for some of us it’s a journey to get there. I walked this valley with Erik 9 years ago and could write volumes about how Erik was healed even though he never recovered from heart disease and finally had to have a transplant. And now with Bryce, I find myself not knowing exactly how to pray……So I look to Sarah’s story and I know this is where it starts for me.  This is where my search for understanding began so many years ago and it's through Sarah's walk that I'm finding the truth.

And the truth is, Sarah did not spend her time believing FOR something. She believed God would heal her, but her faith was not in the healing. Her faith was in the Person who could change her circumstances in a breath. And knowing full well that He just might not do what she was asking. To me, that is the most staggering, mind-blowing, amazing kind of faith. She believed God was going to heal her, but decided that even if he didn’t, she still believed HIM.

I think in Bryce’s situation, I let my faith become centered around a promise that he wouldn’t get sick. And it turns out that putting your faith in anything but God is the fastest way into confusion and anger. His ways are not my ways….another truth that takes a lifetime to learn.

I know eventually I will have more to say about Bryce’s heart and the direction all of this is headed. For today, all I can think about is that young woman whose faith never wavered, because her faith was not in her healing. Her faith was in the Healer.

Isaiah 55:8-9

For my thoughts are not your thoughts,
neither are your ways my ways,
declares the LORD.
As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

hems of my HEART

When I woke up this morning I was thinking about July 16, 2003. This is not a date I think of regularly, thank goodness. It is one of many days that felt very devastating at the time, but has now disappeared into the fabric of who I am and what makes me tick. So it’s a poignant day, but I don’t dwell on it.

Strangely, I thought of little else today. So I am going to tell the story.

July 16 was 13 days after Erik’s heart transplant. He had been released from St. Paul a miraculous 11 days after his surgery, and we were busy driving back and forth from the hospital to my sister’s almost every day for blood work and check-ups. This particular day was his first time in the cardiac rehab gym and he amazed me with 2 miles of brisk walking on the treadmill. We laughed and joked as he lifted weights and actually broke a sweat for the first time in 7 months.

Our physical therapist, Allison, was super-cautious and really serious about this huge milestone for Erik. But the two of us were just like teenagers goofing around and arguing over where we were going to dinner that night with Matt, Kelly, Sarabeth and Amanda. I remember feeling so happy that we were only visiting the hospital and would be leaving as soon as Erik’s therapy was over. (There is no better feeling than walking out of St. Paul hospital with Erik. To this day, I still want to run before someone stops us.)

As Erik wrapped up his workout, I went to the bathroom to freshen up and get ready for the 45-minute drive back to Frisco. When I came back into the room, Allison looked concerned and asked, “Is Erik diabetic?” I said no.

I sat down next to Erik and he was looking up at the ceiling and mumbling to himself. It was in that instant that I realized something was really wrong. I yelled to Allison, “Call a doctor!” Then Erik’s head started twisting violently to the left and I realized he was having a seizure.

Allison grabbed Erik around the waist and lithely took him to the ground on top of her, then rolled him onto his back. There he proceeded to seize for more than 10 minutes. They called a code blue and people started running into the room from every direction shouting orders. Two older black ladies grabbed me and dragged me from the room.

All I remember is that one of them buried my face in her rather large bosom as I screamed and cried. I might have been a bit hysterical. You can laugh here – it’s sort of funny to me, too.

In a moment they rushed Erik from the room on a stretcher and one of the doctors shouted, “We have to get an airway.” I think that’s when I snapped into auto-pilot. I grabbed my cell phone and called my brother-in-law Matt. And he said they would be on their way.

I followed Erik to the ER and in minutes our hero Dr. Yancy came running thru the double doors. We made eye contact for a split second and the look on his face frightened me more than anything else. For more than an hour they tried to get Erik to stop the seizures. He stopped briefly, but when they got him to the MRI lab he started again.

It was the most brutal afternoon of my life as doctors attempted to stabilize him. He was literally thrashing on the table. They wouldn’t even let me in the room, but I could hear his screams from the hallway. In the midst of these seizures, Erik was fighting against the doctors and nurses, ultimately bruising some of them pretty badly.

Finally, they sedated him and the seizures stopped.

Dr. Yancy came out to talk to me and said he had no idea what was going on, but that it had to be one of three things: 1. A massive stroke; 2. A brain bleed; or 3. An allergic reaction. Then he said Erik would be going back to ICU and they were going to keep him sedated for at least 24 hours so they could run some tests.

This was on a Wednesday.

I really thought this was it. After all the previous months of harrowing experiences at St. Paul, I thought this was finally the day I’d been afraid of. The scariest moments prior to this had been quiet and sad – Erik sleeping and me next to him holding his hand and waiting. But July 16 was loud and terrifying and vicious.

Hours later when I was able to catch my breath, there were a few thoughts that started going through my head:
Thank you Lord that Bryce and Lexi were not with us when Erik had the seizures!
Thank you Lord that we were at the hospital and not at my sister’s or driving down the tollway!
Thank you that Dr. Yancy and all our other doctors were close by!
I began to feel overwhelmed with gratitude for a God that knows ahead of time what is going to happen and intervenes in ways that make the moment survivable.

July 16 was the day I figured out what the word SOVEREIGN means. Without a doubt, I finally got it.

On Thursday, the MRI revealed that Erik had spots on his brain caused by an allergic reaction to cyclosporine, his immuno-suppressant. Thank God above there is more than one of these types of drugs, so Dr. Yancy was able to just change his prescription and released us from the hospital on Friday. How about that!

So I had to tell a really long story to get back to today. I woke up thinking about July 16, 2003. But this time a fresh thought was going through my mind in regard to this story. It’s from one of my favorite chapters in the Bible and one of my favorite details about the Lord . . . “He hems me in . . .”

Psalms 139 says, “You hem me in—behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain. Where can I go from your Spirit? Where can I flee from your presence?”

He hems me in . . . He was there before me and He’s waiting up ahead of me. Nothing touches me that’s not filtered through his hands. Nothing about my life surprises Him. He knew when I was formed in my mother’s womb that my son would one day have hereditary heart disease and that my life would look the way it does now.

God knew when I went to bed last night that he would awaken me this morning with Psalm 139 and tie it back to an experience 7 years ago that was very profound for me. God also knew I would learn a new song this morning in church that must be based on Psalm 139.

He hems me in . . . . and loves me enough to give me a new song to sing.

Highest Place
by the Desperation Band

Lord You searched me. And you know me. You hear all of my thoughts. No point in hiding. Lord you found me. So completely in need of You. I cannot run from You.
If I go to the heavens or down below, You are right there waiting. If I rise on the wings of the dawn I will find You waiting.
You are in the highest place. You are in the falling rain. You are on the mountain peaks and valleys speak wonders of your name. You are in the perfect sky. You’re in every breath I breathe. You’re in every moment life seems to pass me by. You’re my Prince of Peace.
You're everything You're in everything. You're in every part, it all ends and starts with You my King.

our HEART journey begins

Spring Break 1998!

Erik and I were both full-time college students and parents to the sweetest little 14-month old boy you’ve ever seen. I don’t know how we were getting by on $500 per month, but it was working for us. My grandmother had died on March 2nd after a very sad battle with cancer and it was a windy, dusty March in Lubbock, Texas.

But we were getting out of town for spring break and we were EX-CITED!

We left Bryce in Tahoka with Mom and Dad, then drove to San Antonio to spend the week with Erik’s brother. We partied like we were – well, 24-year-olds. We went to the lake, went dancing, went to a Spurs game, drove to Kings Inn . . . . . and just relaxed. We were both fighting a small cold, but otherwise had a complete blast.

We got back home on Friday, picked Bryce up then went home to start getting ready to go back to school and our full-time jobs. But Erik just couldn’t shake that cold and no amount of Sudafed and Tylenol seemed to help. On Sunday he started throwing up. That was a little weird.

So I decided to take Erik to the emergency room. Thankfully, Abby and Chris were close by and could take Bryce for the night.

They did blood work, x-rays, and an EKG and confirmed that Erik was in heart failure. Most people don’t really understand what heart failure is, and we certainly didn’t. I remember the ER nurse showing us his chest x-ray and saying “That’s the biggest heart I’ve ever seen!” It was really enlarged, but we had no idea what that meant.

Slowly everything started adding up – Erik’s shortness of breath walking across the campus to class; this cold that in hind sight he had been struggling with for several weeks; the swollen feet; his inability to lay down flat . . . . .

They admitted us into the hospital and we went to sleep for the night.

Early Sunday morning a cardiologist came in and told us that Erik had dilated cardiomyopathy and needed a heart transplant in 6-9 months in order to live. I won’t even try to describe that moment, so I will continue to just state the facts.

Mom and Dad peeked in toward the end our conversation and I asked them to wait outside. When the doctor finished I asked him to relay that information to my parents in the hallway. My mom says the doctor came out and said to them, “The kids got a bad break.”

A bad break. To say the least.

Over the course of the next 6 months, we visited many different doctors all over the state of Texas. We finally found one that gave us a glimmer of hope – Dr. Clyde Yancy, who would turn out to be one of my favorite people in the universe.

Dr. Yancy explained that a heart transplant is never best-case scenario, so we would do everything possible to postpone transplant for as long as we could. He started Erik on five medications, including Enalapril and Coreg, which came to be known in our house as “the miracle drug”.

The Coreg actually began to regenerate and heal portions of Erik’s heart. It was miraculous and even Dr. Yancy seemed shocked at its success. Although I guess he wasn’t really surprised because the Coreg did exactly what he hoped it would – postponed transplant for 5 years.

Later that spring, Erik was stable and out of heart failure and we went back to life as usual (kinda). And that is how our heart-journey started. It seems like a million years ago and so much of our story is yet to come. But Spring Break 1998 is where it started.

Fast forward to Spring Break 2010. Bryce is 13 now and we have 2 daughters, Lexi (10) and Ryan (4). We are going to Dallas over the kids’ spring break so that Dr. Barnes can start Bryce on Coreg, the miracle drug.

And a miracle is exactly what we need. I try not to continuously compare Bryce to Erik, but in this case I hope there IS a similarity in the way their bodies react to Coreg. I am believing the Coreg will regenerate and heal Bryce’s heart and that we can go back to life as usual. I believe the end result in Bryce’s story will be much different from Erik’s, and won’t be written for many years.

Today, I’m grateful that I am not consumed by this portion of our journey. That in itself is a miracle.

Because of the LORD's great love we are not consumed, for his compassions never fail. Great is Your faithfulness! Lamentations 3:22

HEART ache

I can’t talk to anyone out loud, so I’m venting into cyber-space. I have to get to a happy place.

Bryce’s doctor called. The results of the 24-hour monitor they gave us on Feb 19 came back. He now shows to have an arrhythmia.

Here’s where my mind starts filling in the blanks. Here’s where I think I already know what’s going to happen because I’ve seen it all before. Here is when it’s hard to fight and believe for anything different.

This is like, ultra-dramatic . . . . but I feel like I’m facing my life-long nemesis in this heart disease. There is so much familiarity in this situation that it feels like a person I don’t like showed back up again in my life and I have to deal with them. I know this thing and I absolutely hate it.

I know what I believe about blessings and curses. I know what I believe about healing and God’s faithfulness. The unexpected twist is that I feel too tired at this moment to apply myself.

We’re going to be okay – I keep saying that and I truly believe it. The question is, how far down this road will we have to walk?

two HEARTS

When Bryce was only a few days old, the Keys came to visit. In our small little duplex, we all crowded around the living room and passed that sweet baby around. Everyone held him, kissed him – we talked and laughed and wished Grandpa were there. Eventually, the conversation led upstairs to the finally-finished nursery decked out in Coca-Cola and polar bears. I showed Sarabeth and Amanda everything from the precious quilting my mother had made to the teeny little Nike shoes we bought for him.

At some point, we wandered back downstairs and my mother said, “Bob is praying for Bryce.” We peeked over the railing and saw that Uncle Bob was rocking Bryce and praying softly. It was such a profound moment for me – that someone else would pray so earnestly for my child. It brought tears to my eyes and I felt that it was a very significant moment in Bryce’s life.

In the years to come, we called on Uncle Bob to pray for many things. He interceded for us through sickness, healing and even sat with me in the waiting room when Erik had his heart transplant. Uncle Bob has stood in the gap for me and my family many times over the last 37 years.

And today, or soon, he will be leaving this earth and joining his Heavenly Father.

I never got to ask him what he prayed for that day while he held my baby. I wonder what he asked for and what blessings he claimed for that child. While I don’t know exactly, I do know that Uncle Bob would have prayed for God’s will in Bryce’s life. He would have prayed for wisdom for Bryce’s parents and he would have prayed that someday Bryce would make Jesus the Lord of his life. And I’d bet you anything he prayed for Bryce's health.

“. . . . and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.” James 5:16

I’m overwhelmed to be reminded of this today. And I stand in agreement with Bob’s prayers in Jesus’ name.

Today I feel sad that Uncle Bob has endured these months of decline due to cancer. I’m sad that Sarabeth and Amanda are going through this for a second time. I’m sad that Bryce’s heart isn’t perfect.

But amazingly, there is peace in the fact that the Lord has all of us in the palm of His hand. That he has ordered our steps in this life and that nothing takes Him by surprise. I feel joy that I have a huge family that is sad right along with me – yet rejoicing in the hope that we have all been called to.

This week, one heart has begun its life’s battle. And another heart is finally headed home.

Uncle Bob, thank you for ALL of your prayers and support for us. Thank you for all you’ve taught me about dignity and humility. And thank you for the legacy you’ll leave in Sarabeth and Amanda. I love you.

my HEART tonight

Here we are 3 months after my last post. I think I mentioned before that my spirit seemed frozen in time since September when a doctor told us Bryce’s heart health was headed in the wrong direction. That feeling of being suspended in mid-air never went away until 2 days ago . . . we had a crash landing and the plane is on fire, but thankfully everyone has survived. There are worse things.

I’ve been in a state of POUTING for several months now. An adult version of stamping my feet on the ground and demanding a recount. I think I’m over that tantrum now, though, because something much more important than my feelings and my dreams has taken over.

That’s the life of one of my children. Turns out I value his life more than my own and I’ve decided to get up off the ground and start fighting/living again. Wipe off the tears and the smudged face and start engaging in the battle.

There’s a history here that I have not gone into regarding hereditary heart disease. That explains my obsession with it and my compulsion to blog about it. I will attempt to delve into that history at some point.

For now I want to share that my 13-year-old son was officially diagnosed with heart disease and the doctor said a transplant is probably in his future.

When I say that, it’s spoken as a fact that the doctor did INDEED say that. However, I remain convinced that this is not true. I am not accepting this prognosis. We will comply with everything our awesome cardiologist tells us to do – but we will not accept that this is Bryce’s destiny.

We have a long road ahead of us. Many hours of prayer and intercession await us. We probably have a few trips to Dallas still to come, and maybe some uncomfortable discussions. I know some of what’s to come because we’ve done it before. Maybe that will make it easier or make us smarter. Guess we will see.

For tonight, I’m only blogging about this to declare my God given authority over the life and body of my child. Erik and I stand united as the heads over Bryce and we stand guard over any enemy that would seek to harm him. God’s will be done here – which will result in health and healing.

Tonight I feel off, unable to communicate the way I like to. But I just needed to get this off my chest and into the blog universe. I’m speaking blessings tonight of miraculous things to come and the working of His mighty strength.

Lord, give me strength to bear this heartache tonight. Help us find rest. And please continue to bless my sweet Michael Bryce.

“The righteous cry out and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34:17