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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