The Untangling

the_Untangling

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” ~ Matthew 11:28-30 (NIV)

He was born in early June to a crowded room of doctors, nurses and specialists. I tried counting how many people were there, but I lost track after 15.

I had wanted an intimate, natural birth with my husband, doula, and midwife. Possibly a water birth. This resembled more of a circus.

At our 20 week ultrasound, we learned that our baby had duodenal atresia, a medical condition where the intestines are not properly formed. It would require surgery and a hospital stay. There was also a question of genetic defects and a chance of Down’s Syndrome. A flurry of doctor appointments and a tailspin of worry began.

“Why, Lord?” We had experienced a miscarriage with our first baby at just 10 weeks. The ultrasound technician’s words still haunted me. “I’m sorry, but there’s no heartbeat.” Our baby girl, as quickly as she had entered our lives, was gone.

We were covered in prayer. But what if God allowed another loss? I begged and pleaded. “Please don’t let our baby die. Please let our baby be strong.”

We were praying for healing in utero and hoping the tests were wrong.

It’s funny how God answers prayer. It’s never quite the way you expect.

During his seven week NICU stay, our son endured four surgeries. Each time they wheeled him off, I was confronted with the reality that I was not in control of this situation, his healing, or his life.

I’d like to say that I did nothing but pray and trust God. But that would be a lie. I worried. I paced. I yelled at God. I told him He’d better heal my son or else.

Our baby was hooked up to so many cords that holding him required the assistance of a nurse. The beeping and whirring of machines quickly became familiar. This was our new normal.

Doctors, nurses and specialists constantly floated in and out of his room. More anomalies were unearthed. A couple serious, others of no consequence. It would take us another year to separate one from the other. As first-time parents, it was especially terrifying. We never knew what was around the bend.

After the atresia was repaired and he began recovering, another obstacle was thrown our way. We discovered he had laryngomalacia, floppy airways which prevented him from drinking breast milk without aspirating. It took two surgeries on his larynx for him to be able to drink a tiny amount of milk without choking.

Finally, we were sent home with a G-tube (gastronomy tube) which allowed us to feed him directly through his stomach, and oxygen for sleep apnea. To say that we were not prepared for this would be an understatement.

We were tangled in cords. Leaving the house required precise timing, a portable oxygen tank, a Kangaroo pump, expressed breast milk, and my breast pump. Around the clock G-tube feedings took over our lives. We were walking zombies.

Over the course of a year, our son had over 90 doctor and therapy appointments as we ran down the laundry list of issues to address. Running and documenting G-tube feeds, attempting oral feeds, scheduling and running to appointments, submitting insurance claims, taking copious notes, pumping breast milk every two hours, this was now my life.

I had always taken pride in being self-reliant. I thrived on staying busy and planning ahead. I had deluded myself into thinking I was in control.

Nothing was further from the truth.

God used my son’s medical challenges as an opportunity for me to learn how to live in the moment, to be truly present and rely on Him for strength instead of myself. I had no other choice. I was beyond exhausted. This situation was more than I could handle.

He also taught me to be grateful for small victories and simple joys, even in the midst of waiting, wondering, and suffering.

He answered my prayers for healing my son. And at the same time, He freed me from the lie that I’m in control.

This truth is both terrifying and thrilling. My Savior is in the driver’s seat. I am not.

*****

After gulping down his entire bottle of milk, my son attempts to dive head first off the arm chair. It takes all my strength to keep him from crashing to the ground. A few weeks ago, he discovered he can scale the walls of his play yard using his toes. My husband jokes that our son is secretly a super hero. For a 14-month old, his grip is truly impressive.

He is stronger than I could have ever dreamed.

 

Resources:

Ronald McDonald House

Jackson Chance Foundation

 

Kelli Paskey

Kelli Paskey

Writer at Kelli to Uganda
Kelli Paskey is a storyteller with a passion for tales of love, hope and redemption. Her inspiration comes from the characters she meets every day. She is the author of poetry, short stories, lighthearted health articles and blog entries chronicling what God taught her while she was in Uganda. Her play, 10 THINGS YOU CAN DO ABOUT IT, premiered at the Bailiwick Director's Festival in 2006, which makes her realize she's averaging one play a decade. Graphic designer. Lover of laughing, live music, coconut lattes and learning random phrases in other languages. She lives in Chicago with three boys: her husband, son, and cat.
Kelli Paskey

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  • “This truth is both terrifying and thrilling. My Savior is in the driver’s seat. I am not.” Oh, this is the definition of my life! I love to have control and it is so hard to let go! What a beautiful story of the way God worked both in you and to bring a precious life into the world. Thank you for sharing this and reminding us to trust God and let go!

    • Kelli Paskey

      Thank you so much, Nicole! Letting go of control is one of the hardest things we have to do in our relationship with God. It’s something I find myself having to do continually. I’m so glad you were encouraged by our story!

  • Terri

    Hi Kelli, as a mom who breastfed because it was completely easy on my part, I am blown away by your dedication to pump and keep that supply train up and running for the g-tube. No small feat! Love that thought “small victories and simple joys, even in the midst of waiting, wondering, and suffering.” Not easy to do. Wishing you a day filled with many simple joys and peace!

    • Kelli Paskey

      Thank you for your kind words and encouragement, Terri! Pumping is definitely a lot of work and there were many times I thought about quitting. But God gave me the strength to persevere. 🙂

  • Gayl Wright

    Kelli, what a beautiful, heart-wrenching story! So much hard stuff to deal with. I’m not sure I could have done all that breast pumping. I never had much success with it. Guess we learn to do a lot when our child is involved. I’m so thankful God saw fit to care for your son and how happy and strong he is now. I think we all have control issues and it’s hard to learn that we can’t control everything. I hoped all my children would be healthy, but I have two sons with Muscular Dystrophy, one mildly and the other at age 24 uses a wheelchair most of the time.. It is so hard for them sometimes and hard for me to accept that I can’t make them better. But like you said,God is in the driver’s seat, not us which is “both terrifying and thrilling.” Thanks for sharing your story!

    • Kelli Paskey

      Thank so much for sharing your thoughts, Gayl! Wow, that must be challenging for both you and your sons. It can be difficult to accept that we can’t change certain things for our children. But it is neat to think that God carefully selected you to be their mother, and for them to be your sons! He definitely knows what He’s doing. 🙂

  • What a great ending to your post! Yeah! I think he probably is a super-hero, cuz it runs in his mum’s genes! Blessings to you for persevering in so many ways.

    • Kelli Paskey

      Ha ha, thanks Michele! 🙂 We are grateful to God for the many ways He’s healed our son.

  • So thankful for the end of this story and the beautiful way you let Jesus lead you through an incredibly challenging season.

    • Kelli Paskey

      Aww, thanks Lindsey! We are super thankful too!! 🙂

  • Thank you Kelli for your words here. My fourth baby had a NICU stay for a chest infection. I remember so clearly those first few days. And I, too, always wanted control. I get it. Thanks for sharing your story.

    • Kelli Paskey

      You’re welcome, Ashley! The NICU is such a hard place! Looking back I am incredibly thankful that my son didn’t have to stay longer. It could have been a lot worse and unfortunately is for a lot of people. Thanks for your kind words!