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.

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