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