Saturday, February 25, 2017

Day 25 - Bea & Beck

As I walked through the halls of Lucile Packard Children’s Hospital waiting for any word on how my son was doing, I tried to remember why I signed up for this. As I looked around at all the other families in the waiting room, I could feel the sadness, the fear, the desperation. As I heard their stories over the course of my stay, I understood how not so long before, their lives were normal and yet now they were faced with the reality of watching their loved ones go through risky, but hopefully life changing surgery. They hadn’t voluntarily signed up for their experience. But my story is a little different.

In 2013, when we decided to adopt Bea and Beck we knew little about their heart conditions. All we knew was that the Lord had led us on a winding journey to them, for Him. As we took one step forward at a time, we weren’t concerned about what physical challenges we were accepting because we knew that if the Lord matched us with them, then He also knew all the plans He had for us and we knew that they were good.

"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11

Over the years, we have learned more about the complexities of both Bea and Beck's hearts and we’ve learned terminology we’d never even heard of before.

Bea: Dextrocardia, Single Right Ventricle, Pulmonary Stenosis, Heterotaxy Syndrome
Beck: Pulmonary Atresia, VSD, MAPCAs

These children were created fearfully and wonderfully by God.

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Psalm 139:13-16

God’s Word is comforting.

In April of 2015, Bea had her first major open heart surgery. (Glenn procedure)

We were thankful for the successful surgery and we looked to the future with hope and expectation for her Fontan procedure the following year after Beck had his first major open heart surgery (Unifocalisation + multiple other corrections-shunt, VSD closed, conduit) up at Stanford.

Fast forward back to my hospital stay with Beck in April of 2016. After 12 hours of waiting in a hospital an airplane flight away from home and the rest of my family, I was finally met with great news. Beck had miraculously received a complete fix and we could expect a complete recovery for his now repaired heart. We praised the Lord for the amazing story of Beck’s life and 3 weeks later, we would fly home to be reunited with our family and prepare for Bea’s next surgery the following fall.

After coming off the high of Beck’s surgery, we prepared for Bea’s with hope and excitement. But after her cardiac cath, we were faced with confusing news. The team of surgeons responsible for her care had decided that the benefits of any further surgery would not outweigh the risks and we would need to accept the fact that our daughter would not receive full correction like our son. In addition, we learned that she will need a heart transplant someday, heavy news for our hopeful hearts.

As I took in the reality, I asked my cardiologist about next steps, about getting on a list for a transplant, about a second opinion. He kindly, knowingly, reminded me to enjoy today with her, then enjoy tomorrow with her. He sees outcomes like this every day. It’s his job. He knows.

Scrambling for encouragement, I looked to the Word of God and there I found the same. I am instructed not to worry for tomorrow, but to trust the Lord today. He writes the outcome. It’s His job. He knows.

Processing and accepting the dichotomy of having one corrected heart and one that remains broken, both under my protective wing, it will be my aim to enjoy each moment I have with them both, to count both of these realities as blessings from the Lord. He created them with full knowledge of the outcome of their stories. He is the One who beckoned our hearts to go find theirs. His sacrifice for me is why I lay down my life for them daily and do so because of love.

"By this we know love, that he laid down his life for us, and we ought to lay down our lives for the brothers. But if anyone has the world's goods and sees his brother in need, yet closes his heart against him, how does God's love abide in him? Little children, let us not love in word or talk but in deed and in truth." 1 John 3:16-18

And so, it dawns on me, the answer to my original question in that lonely hospital waiting room. That’s why I signed up for this. I did it and I choose to do it still ongoing for this simple one word reason…LOVE.

"No one has ever seen God; if we love one another, God abides in us and his love is perfected in us."
1 John 4:12

As a father, I do my best, trying to balance preparing for the future and living like there might not be one. I know that in all things our God works for good and He makes us more like Him through trials. I know His promises and they give me hope as a father striving to express His compassion to my children in the same way He shows me.

“As a father shows compassion to his children, so the LORD shows compassion to those who fear him.” Psalm 103:13

So much has happened since sharing our story here last year. Things haven’t turned out quite as we had projected and yet, there are no surprises for the Author of this story. He knew what we were signing up for years ago when we blindly answered Him, “Yes, Lord.” He knew what He had planned and He knows what He has planned. There have been highs and lows and there will be more highs and more lows, we can assume, and so it goes when we leap by faith and follow Jesus. So it goes, when we answer a call to care for the least of these in His name, when we venture into the mystery of adopting a little one(s) with CHD. There is confidence in Him. And this is what He’s called us to for His glory and to express His love. So we do it all with trembling and joy and even continued hope knowing what we know now…and we would do it all again.


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