A Fragile Life Worth All Our Love

My oldest son is four years old and communicates only two words — the “m” sound for “more” and the “b” sound for “bubbles.’’ After we pray and sing each night, I tuck him into bed and his giggles tell me that he is comfortable, safe, and not interested in going to bed anytime soon after I hit the lights.

He may never have the ability to tell me, “Thanks, Dad,” but he doesn’t have to. Levi has Down syndrome and numerous complex medical needs. He is a beautiful gift from God, and I can’t adequately express how much I love him.

It’s now eleven o’clock and Levi is finally asleep. After he drifted off, I could connect him to his pulse oximeter and feeding pump to monitor his heart rate, oxygen, and provide him continuous food throughout the night. I check the oxygen tank at his bedside, making sure it’s ready in an emergency, and I ensure the video monitor volume is up and prepared to echo machine alarms or Levi’s cries throughout the night.

I sink into bed. Finally, sleep. It’s been a full day caring for our son. My wife and I are spent. Like each day, it was filled with joys and sorrows as we strained to help our son eat, play, accomplish basic tasks, try to communicate, and ensure that all his medical needs were met. It’s been a hard day. My mind, body, and spirit are tired. But a good tired. The kind of tired when you know you spent your energy on something valuable. It’s been a good day.

One Path Ahead: Life

I was 21 years old when I sat in a high-risk pregnancy clinic with my wife after her level-two ultrasound. Doctors told us Levi had all the markers for Down syndrome. After declining an amniocentesis, we were ushered straight away into the next room where a genetic counselor told us we had “options.” She explained we were too far along at 22-weeks pregnant to terminate in Minnesota, but they could connect us with someone in Chicago or Phoenix. My wife and I sat shell-shocked — first from the news about our son’s diagnosis and second from the attempts to exterminate him.

We walked out with only one path ahead. Life. We didn’t need more tests, more counseling, or more information. Levi deserved life, not primarily because of the joy he could bring us nor his potential quality of life, but supremely because God says his life has value, worth, and purpose. Period.

We knew our son was a living human being (Job 31:15), given life by God (Job 12:10), created in God’s image (Genesis 1:27) with a purpose (Proverbs 16:4), intricately formed by God (Psalm 139:13) with no mistakes (Exodus 4:11) and made for God’s glory (Romans 11:36). God alone has the right to give and take life — not us. God chose us to be Levi’s parents and would provide every ounce of grace to love and care for him.

Every Life Has Value

We have been fighting the battle against abortion in a unique way for almost five years. Rarely do we get to be involved in organized efforts, but that doesn’t stop us from fighting. Our lives are a living billboard declaring God’s truth that every human life has value, worth, and purpose.

I am not going to sugarcoat it: This is a long road with many tears. Four open-heart surgeries, extended stays in the hospital, a trach and ventilator, feeding tubes, medical bills, in-home nursing care, doctor visit after doctor visit, and therapy after therapy. It pains my heart to watch Levi struggle to do so many things that come so easy for most children. Living with disability has and continues to be emotionally, financially, and relationally costly. And God gives more grace. We are living the truth of Psalm 126:5: “Those who sow in tears shall reap with shouts of joy!”

As we have experienced over and over again the abundance of his steadfast love and nearness, a common phrase in our home has become “let’s bask in the faithfulness of God.” There is an intimacy with Christ known only through suffering. We have truly tasted and seen that the Lord is good. What is a lifetime of sacrifice now when we have an eternal weight of glory coming (2 Corinthians 4:17)?

God Will Supply Every Need

God continues to take us beyond what we thought we could endure physically, emotionally, and spiritually, and he has been our rest, joy, peace, satisfaction, and delight. God is still manifestly good, and he continues to do good (Psalm 119:68).

There are countless families like ours. Unique circumstances yet similar challenges. To parents and caregivers of children with disabilities, I plead with you to keep fighting. May you soak your soul in God’s word as you fight to believe his blood-bought promises (2 Peter 1:3–4). He who called you is faithful, and he will surely keep you and strengthen you for the task he appointed to you. And be encouraged that in faithfully loving your child, you are glorifying God and might be saving the lives of others.

Disability continues to hit new families across the world. To parents that never imagined this challenge, you will be faced with a choice, life or death. Fight for life, knowing that the sorrows will be deep and the cost will be great. And if you are in Christ, your joy will be greater, and God promises to provide the strength and grace you need every moment of every day (Philippians 4:19).

God will not turn away from doing good to you (Jeremiah 32:40).