Lilly and Cystic Fibrosis

Hard days never truly touched me while I was growing up as a Pastor’s kid in a small town in rural Michigan.

I thought I would get married and have a family and be happy and undisturbed by suffering.

When we had our daughter Lilly, I was sure that I’d have a healthy baby. Not because I thought I “deserved” it, but because the thought of the alternative was too much to bear. I had not context for a world that had a lot of pain.

She was born with no complications, but was very tiny. I thought,”Oh, she’ll gain weight in no time after I nurse her!”

She didn’t.

She had no chub, not even after 6 months.

She cried a horrible cry after she ate. Her belly was hard and distended. Her poop was oily and greasy, like bacon grease. I felt in my gut that something was wrong.

I told the doctor all about my concerns at her next visit. This doctor looked right at me, gave me a condescending laugh, and said, “You are a typical paranoid first time mom.” As well as, “Your milk isn’t fattening enough. Stop breastfeeding and give her formula.”

I knew in my bones that he wasn’t right. So, I found a new doctor. I told him all of my concerns and he took everything into consideration.

We spent the next week running tests and everything seemed fine, until he said, “I’d like to send her to have a sweat-chloride test. It’s to determine if she has a disease called Cystic Fibrosis.”

We went to the Children’s Hospital and had the test.

Then I got the call from her doctor a few days later. I was changing Lilly’s diaper.

“Hello?”

“Hi, Mindy. It’s Dr. White.” His voice sounded sad and my heart was beating out of my chest. “I’m afraid the test for Cystic Fibrosis came back positive.”

The world stopped.

I don’t remember a lot about what I said during that phone call, but I remember poor Dr. White listening to my crying and panicked questions.

I called Lane in a panic, right in the middle of his school day. He came home and we tried to figure out what life was going to look like from there on out.

I began reading about CF and read things like “incurable disease”-“early death”-“lung transplant”-“life expectancy 35 years”……in the middle of reading about the horrors of CF, I looked over at her. She was in her bouncy chair, slobbering all over a toy. She looked at me and smiled and started bouncing wildly.

In that moment, God whispered something tender into my heart. “She is still here. You are grieving as if she is gone. Her life is in your care, and I chose you to be her mom. I love her more than you can possibly imagine, and I will not abandon you.”

I believe it was in that moment that I realized I’d have to cling to God in a way I never had before. It was necessary, it was air. If I didn’t I would tumble into deep fear, and I had a job to do.

Lilly was 8 months old when she was diagnosed with CF. We spent the next three years learning a new normal, with cupboards full of medications, hospital visits, a new vernacular, and a new rhythm of life.

By the time she was three, we felt we had it down pretty well. So it begged the question: what do we do about more children? It’s complicated with CF. People with CF should never be around other people with CF. They easily pass communicable diseases to one another and if they are together for any length of time, they will become sick. Very sick. I was advised that “if” we were to have another child with CF, to not allow them to hug or kiss. Which, of course, is impossible.

Our options were limited. Abortion of a “fetus” if CF was detected during pregnancy was even suggested. That broke my heart that perhaps some families considered this as a viable option. As if my right to an “easier” life trumped a CF baby’s life.

So, it came down to choosing to have another baby and trusting God with the outcome, come what may. Or, being content with one child. Adoption down the road, perhaps?

I remember sitting with Lane on the porch swing, watching Lilly play, and saying, “Honestly, I think I’m ok with just her. It’s not what I imagined for our lives, but I’m content just being her mom.”

Time passed and we prayed about the “big gamble”….have another baby and take our chances or call it quits?

It was honestly a matter of trust. Did I trust God enough with what should come? Do I believe that He is good, will never abandon me, and will be enough in all situations? Sure, I “believed” it….but did I BELIEVE IT.

We decided to trust God, feeling like He wouldn’t allow me to throw in the towel with children just yet.

I got pregnant with Wills and struggled mightily with fear of the unknown. I constantly had to choose to put my trust in God, minute by minute.

I begged God to allow him to be healthy. William was born on May 9, 2007. Everything went well and I tried to simply enjoy this newborn in my arms before worrying about the future.

And on the day that Dr. White called me with his cord-blood test results, his voice sounded excited. “I have WONDERFUL NEWS! William does not have CF. Not only that, he carries NONE of the CF mutated genes. He is a perfectly healthy baby!”

We were in Wendy’s. Lane and I sunk to the floor and cried with desperate relief. I just kept repeating, “Thank you, God. Thank you, God. Thank you, God.” Wills was two weeks old.

I knew that Wills was my last biological baby. Sure, I had to grieve the fact that I wouldn’t carry any more children. But, I felt like I was granted an extra blessing by having Wills in the first place. He was extra! He was bonus! And he was HEALTHY! We felt we could close the chapter of child-birthing and feel as blessed as ever.

The desire to adopt came much later. We chose to adopt because we felt called, it was a desire to be obedient. A desire to be part of a redemption plan in a broken world. A desire to be part of something bigger than ourselves. We weren’t trying to grow our family, we were actually totally content with our little family of four.

I’ve learned that when I am living in full submission to God, I have a growing desire to please Him and bring Him glory. I want to empty myself so that He can fill me. My heart begins to break for the things that break His heart. And when I live in this state of open-handedenss, God moves and works.

So while selfishly, I would’ve loved to stay in a place of ease, where God wouldn’t ask anything else of me, after all, hadn’t I passed the test of trust?  I knew however, to do that would be to close my hands and live in disobedience.

It’s been through the darkest of times, the valleys, the depths of despair, that God has taught me the most. And I’ve felt the blessing that comes with brokenness, and joy can live with pain simultaneously.

Lilly is now 13. She is the perfect picture of health and vitality. I believe with all my heart that is God’s protection and blessing. He’s granted her health and it’s freed us up to say YES to the difficult road of adoption.

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Eyes to See

The Old Testament can be tricky to read and beyond reading the big stories of the Old Testament, it’s tempting to overlook the words in between, and go to the New Testament where we feel more at home.

But there’s so much goodness in these ancient texts, so much to learn about God here. And as challenging as it can be, it’s worth pushing through and seeing what God will teach us here about who He is.

In the Old Testamnet, if you are going off of your knowledge learned in Sunday school, you might have vague memories of some of the bigger stories like the 10 Commandments or David and Goliath. You also may think that the Old Testament characters are something like heroes, and that God chose the best of the best.

If you’re familiar with your Bible, you know this is not true. At ALL. Especially with David. He was insignificant and least likely off all men to take the throne of Israel. He had a heart that reflected God’s heart. Yet, there was Bethsheba and that whole debaucle. But David still had screw-ups after this massive failure, yet over and over the Bible speaks of God’s steadfast love for him, as well as David’s heart being fully devoted to the Lord.

David always comes back to God. Always. His failure gives him great sorrow, not because of the consequences, but because He has sinned against His God. “Against you and you alone have I sinned and done which is evil in your sight.” Psalm 51:4.

Second Samuel 24:18-25 and First Chronicles 21 give parallel accounts. The account in First Chronicles offers more details of David’s failure that resulted in pestilence on the land and people of Israel.

Chapter 21 begins, “Then Satan stood against Israel and incited David to number Israel.” He then told Joab, the Commander of David’s army, to carry out the command of the census. Joab disagreed with David, but since David was King, he couldn’t refuse. So the census was taken and reported to David.

“But God was displeased with this thing, and he struck Isreal. And David said to God, ‘I have sinned greatly in that I have done this thing.'” (1 Chronicles 21:7-8).

The King taking a census doesn’t exactly seem sinful or worthy of harsh punishment…but it wasn’t the actual census that was sinful, it was of course David’s heart in the matter. Perhaps it was David’s pride and military ambition…but either way, David did something that was not commanded by God.

In nearly all of David’s dealings, He inquires of God first. Then takes action. In this instance, he took action but did not wait for God to give the command.

With God, obedience is of utmost importance.

The land of Israel was struck with a great pestilence and many died. God also sent an angel to Jerusalem to destroy it. “…but as he was about to destroy it, the Lord saw, and he relented from the calamity. And he said the the angel who was working the destruction, ‘It is enough; now stay your hand.’ And the angel of the Lord was standing by the threshing floor of Ornan the Jebusite. And David lifted lifted his eyes and saw the angel of the Lord standing between heaven and earth, and in his hand a drawn sword stretched out over Jerusalem.” (1 Chronicles 21:14-15).

At this point, we get this tingle of a memory from another story, Abraham and Isaac. When God stops destruction and death at the very last second, a hand raised with sword in hand,  the blow of death anticipated. God intervenes and relents, giving mercy.

Because David is penitent, his plea for mercy is granted. Here is where the site of the threshing floor that David purchased for “full price” is so significant. He buys the site of the threshing floor, makes an alter, and offers burnt offerings to the Lord. The pestilence is lifted and David is once again reconciled with God Almighty.

This site is later identified as Mount Moriah (2 Chronicles 3:1), the same place Abraham was told to sacrifice his only son, Isaac. The same place that God chose, through David’s son Solomon, to build His holy temple.

This threshing floor location is significant to God. It is here He passes judgement, listens to His people, grants mercy and forgiveness, bestows blessing, and redeems His people.

God never wastes these words found in the Old Testament. It is so tempting to overlook the significance of these accounts, and to not put in the effort to look beyond and see the story God is telling. Even the site of this threshing floor, a place bought with a price, a place where judgement is due but God makes a way for fellowship and forgiveness with His people. A place that God chose to set up residence.

Here, in the middle of pestilence and sin, God makes a way for His children. It foreshadows the events to come almost 500 years later, when God would send His son Jesus to make a way for His children to have communion with Him, through the line of David.  Judgement is imminent until the Cross. He rescues us. He paid full price. At the cross, he grants mercy and forgiveness, bestows blessing, and redeems His people once and for all. A dirty, hard threshing floor; a rough, crude cross. Each make a way for those in Christ to have forgiveness of sin and communion with our Creator.

So if you’re reading the Old Testament, ask God to give you eyes to see and ears to hear. Every part of His word allows us to learn more about Him, who He is, and His steadfast love for us .

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Welcome to the Threshing Floor

Last year I began reading through the Old Testament, slowly and purposefully. In all honesty, my reading faltered from time to time because I felt I wasn’t walking away enriched and encouraged, like I often did when I would spend my mornings in the Psalms or the gospels or any of Paul’s letters. But I kept feeling the prompting of the Holy Spirit to keep looking, asking God each morning give me eyes to see.

There were moments I literally laughed out loud (2 Kings 2:24), when a group of boys were taunting Elisha, he cursed them, and suddenly two “she-bears” came out of the woods and “tore forty-two of the boys.” I mean. Wait, what?

However, I also kept coming across the term “threshing floor.” This is an Old-Testament specific phrase, and only mentioned twice in the New Testament. (Matthew 3:12 and Luke 3:17). The threshing took place during the harvest, where the grain was removed from the husk and the false grain was separated from the wheat in a rather violent beating process. Afterwards, in a process called winnowing, they would toss the stalks up in the air in hopes that the wind would carry away the rest and they only had the good, valuable stuff left. (Paraphrase, David Reagan, “Learn the Bible”)

Over and over the threshing floor was mentioned, and I paid special attention because it seemed so symbolic. Indeed, the threshing floor symbolizes a place of both blessing and judgement. In 2 Samuel 24:18-25, David is going to build an alter to the Lord on the threshing floor of Araunah the Jebusite. (Jebusites were the previous inhabitants of Jerusalem, and some still lived there.) Araunah was fully prepared to give the King the site, as well as oxen for the burnt offering.

Then David says, “No, I will buy it from you for a price. I will not offer burnt offerings to the Lord my God that costs me nothing.”

So often we lay down our “offerings” to the Lord and it cost us nothing to do so. All throughout the Bible, when God chooses His servants, it costs them everything. When fear and doubt creep in, we are often tempted to take control to help God out. We end up making a mess of things, yet God in His infinite grace, still accomplishes His will through us.

And it always, always, costs.

 

When we had the first inklings of adoption, I said to God, “Ok, I’m up for adoption. But I’m thinking, like, drop a baby at our doorstep, like they do in Lifetime movies, and I will say, ‘Wow! A baby! Let’s adopt him!'” He’d of course be perfect and everything would be tied up with a pretty bow. And, best of all, it would cost me nothing. In other words…obedience without sacrifice.

God gave me the opposite story. This journey has been long. Arduous. Painful. Humbling. I’ve been filled with fear and doubt and have faced more spiritual attacks in four years than I have in my entire life. But it’s also taken me to the hard, dirty surface of the threshing floor. I’m the stalk that has been slammed to the ground, tossed in the air, and stripped of the worthless fibers that padded my life. And the valuable kernels have fallen to the ground, and gleaned for His glory.

So from now on, I will not offer burnt offerings to the Lord my God that cost me nothing. Because I’ve learned that in the threshing, in the pain of the price, God proves to be more than enough. Not just enough…bountiful. A deep, inexhaustible well that fills the soul.

And I’d rather have the valuable kernels that are gathered and used, than the worthless chaff that the wind carries away in the smallest of breezes.

Oh to be people of God who refuse the easy way and instead we say, “I will not offer my offering to the Lord that costs me nothing.” And gladly surrender all that we have to the Lord our God.

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