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

medicine for the HEART

In September, when we first starting hearing doctors talk about ACE inhibitors for Bryce, Erik and I did a lot of research. One of the most startling discoveries I made was the origination of Enalapril and other drugs like it.

Get ready for this: ACE Inhibitors are derived from the venom of the jararaca, a Brazilian pit viper.

PAUSE FOR REACTION

If you hate snakes as much as I do – though no one does – you might have just had a shiver run up your spine. It’s very unsettling, no?

Somehow I thought this fact in itself gave me more ammunition to believe God for complete healing, as opposed to needing any medication for Bryce. Something about “pit viper venom” just did not sit right with me and I couldn’t see myself thankful for such a thing.

On our drive home Wednesday I had plenty of time for contemplation about Bryce and healing and what I believe to be true. God is so faithful and I believe He is ALWAYS speaking. So I was tuned in and grasping for a specific word from Him.

God brought to mind a story from the book of Numbers. Remember the time that the Israelites’ camp was swarmed by venomous snakes . . . they bit the people and many people died. So Moses prayed for the people. Then the Lord told Moses to make a bronze snake and put it up on a pole; anyone who was bitten could look up at it and live. So Moses did as the Lord instructed. When anyone was bitten by a snake they could look at the bronze snake and be saved. (Numbers 21:4)

Today we see that same symbol reflected in medicine. This is the Caduceus, which looks very familiar to us:

And this is the symbol you’ll see on an ambulance, which is derived from the Rod of Asclepius:

In John 3:14, Jesus brings it home for us: “Just as Moses lifted up the snake in the desert, so the Son of Man must be lifted up, that everyone who believes in him may have eternal life.”

To me, this was a very profound story for God to remind me of. It wasn’t a story about God striking down all the snakes. Moses didn’t aim his staff at the people and command them to be healed. I would be willing to bet that the Israelites would have much preferred NO snakes and NO biting.

But God provided a way.

God provided an answer.

The same is true today. That standard is Jesus and He is lifted up in my life every single day. I choose to believe His word is true. I choose to hold Him up in front of my children. My kids need to see me looking up to be healed and freed and delivered. And then they will learn to claim that for themselves.

I’m not going to lie to you – It is very hard when the bite is real, when the wound is deep, when it really hurts – and when it’s your child. But I need my kids to believe this as much as I do:

Psalm 91:12-16
He will command his angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.
You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.
"Because he loves me," says the LORD, "I will rescue him;
I will protect him, for he acknowledges my name.
He will call upon me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
With long life will I satisfy him
and show him my salvation."

with all my HEART

We went to Dallas on Wednesday to get that miracle. I knew it wouldn’t look how I imagined it. God rarely does exactly what I ask him to do – though usually in a way I can truly appreciate.

We met Dr. Aliessa Barnes – a very young, normal, non-stereotypic doctor. She is absolutely amazing and I’m so grateful for the recommendation from Erik’s doctors. She had immediate rapport with Bryce and asked him very frank, pointed questions.

“Do you get tired before other kids when you’re playing sports?”
“Do you ever feel short of breath?”
“Do you ever have chest pains?”
Bryce answered NO to every question.

So she put down her clipboard and asked him to promise her he would never lie about any of these questions. She recognized that he is a smart boy and he probably understands that if he admitted to any of these things his mom would probably overreact :) She said, “Your mom gets to overreact because she’s the mom. But I promise you that I will never overreact and you can trust me with the truth.”

I was so moved by this and shocked with the thought that he could have been keeping secrets about how he feels. It seemed like Dr. Barnes didn’t believe him, which also made me very nervous. Bryce never did admit to any symptoms, so I’m going on faith in Bryce's word at this point. Dr. Barnes gave him her card with her number circled and told him to call her anytime if he has questions or feels funny.

She ran some tests of her own, coupled with the tests we had in September and decided immediately that medication is the correct option for Bryce.

Our hope was that medicine would not be necessary. To start down that road just seemed like the beginning of something we did not want to face with our children. Enalapril (Vasotec) is the exact drug that Bryce took twice a day until he was 9 months old; Erik took it from his diagnosis in 1998 until transplant in 2003.

Enalapril is an ACE Inhibitor that will improve the effectiveness of the heart by reducing the blood pressure that the heart must maintain. Basically, it will help Bryce’s heart not have to work so hard which will make it more effective. For me, the struggle is that Bryce will be on this drug for the rest of his life – it’s not like an antibiotic – you don’t just stop taking it.

Meeting Dr. Barnes was a great experience. I appreciated her decisiveness and her connection with Bryce. But in the end, her recommendation was not exactly what I’d hoped for.

So I had a long ride home to contemplate my theories on healing in addition to what I know to be true about my Father.

How many times in life have we all said, “Where is God in all of this?” Oddly enough, I have not asked that question in a very long time. God has proven Himself to me more times than He should have to.

The question I found myself asking all day yesterday and today is “Where is God GOOD in all of this?”

Turns out there are LOTS of answers to that question and it has brought me great peace to meditate on those things. Some revelations have almost taken my breath away – He is so good.

When we left Dr. Barnes’ office, as she shook my hand and hugged Bryce, she commented that this probably feels like the beginning of something we hoped we’d never have to face. I nodded my head and swallowed the gigantic lump I’d been fighting all afternoon.

But on the drive home it hit me – yesterday was not really the beginning. The beginning was actually January 1997 when the doctor delivered news to me that my newborn had 3 holes in his heart. I began a process of surrendering Bryce to his Father in Heaven every single day.

And yet, another beginning in August 2000 when I took Bryce in for his 6-month check up. After explaining that the doctor was going to look inside his heart, this sweet, 3-year old boy said to me, “Well, he’ll just see Jesus there.” That day, Dr. Sridaramont’s echocardiogram confirmed that the holes had completely closed. And we went forth in healing.

I believe I get to claim that same healing today – it doesn’t look the same, doesn’t feel the same – but it’s the same heart and it’s the same God.

I shamefully thought once to myself yesterday, “Well, I didn’t get my miracle.” Then I felt like God asked me, “So whose miracle did you get?”

That got me thinking about the hundreds of mothers out there that would love medication to be an answer for their child. How many moms are begging God right now for a miracle drug? How many mothers would prefer to have a child on this earth instead of waiting for her in Heaven and would be grateful in my shoes?

That shut me up pretty quick. We are very fortunate that this is our lot. I mean, seriously why not us?

Psalm 9

1 I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done. 2 I will be filled with joy because of you. I will sing praises to your name, O Most High.

that my HEART may sing

We are leaving at noon today to drive to Dallas. I believe I'm going there to get my miracle. I think it is waiting for me in a sterile, cold doctor's office. I don't think it will have balloons attached to it, or a card decorated with glitter and stickers. I don't think it will jump up and bite me and say "LOOK AT ME! LOOK AT ME!"

I think it will quietly come. I believe I will walk out stunned, but still not fully grasping how wide and deep and long is His love for me and my son.

I find it cool that I sincerely believe this. In the last few weeks, so many people I know and love have been going through tremendous grief and stress related to their health.

I know it happens - I've walked that dark valley before, too.

But today feels hopeful. And tomorrow feels like another venture in my quest to understanding healing. Tomorrow I will draw close to Him, and He will draw close to me.

I believe the miracle awaits.

Psalm 30
11 You turned my wailing into dancing; you removed my sackcloth and clothed me with joy,
12 that my heart may sing to you and not be silent. O LORD my God, I will give you thanks forever.