How I Honestly Feel about Having a Child with Down Syndrome and How God Honestly Feels about You
This month marks one year since our boy Ephraim was born. Ephraim has Down syndrome and wants to be your friend. He wants to smile at you and hug you with a chubby-armed neck squeeze. He’s a kind boy who raises both arms high to show how big he is.
The more I get to know Ephraim, the more I am taken by him. The simple fact that he’s alive still amazes me—in his first three weeks out of the womb he experienced congestive heart failure and open heart surgery. Today he is healthy with no lingering medical concerns.
I consider myself blessed beyond the typical range of blessing to have a child with Down syndrome. It is not a hardship, a bummer, a let down, or negative in any way. It is different than only having children without Down syndrome, but it is different in a good way. It honestly feels like I’ve been given a gift.
It was not always this way.
The news of Ephraim having Down syndrome was hard at first. I loved him no matter what, but his diagnosis came as a surprise, and processing it came in stages. I was afraid of Down syndrome and what it would mean for Ephraim and for us. I struggled to not think of Down syndrome when I looked at him.
Two realizations helped me process his Down syndrome diagnosis and not see Down syndrome when I look at him but instead see the dear son that he is. First, it occurred to me that Down syndrome is something that happened to Ephraim. Sure, it happened in the very first cell divisions in the womb, but it happened nonetheless. If you ever have a sweet baby and something happens to him, you very quickly take his side and protect him. This realization made me his joyful advocate in whatever challenges he would face.
The second realization was emotional. One day I looked at Ephraim and thought, “This baby is going to grow up and let me be his friend.” I teared up and apologized to him for being slow to come to the same level of compassion for him that he would naturally have for me. I said, “Thanks for letting me be your friend,” and he has had my whole heart around his chunky fingers ever since.
This process lasted weeks. I thank God that He brought me not only to a place of love and committed care for Ephraim, but also to a place of sincere compassion and friendship.
This love and compassion is how God has always felt about you. While we were yet sinners, Christ died for us, and that is exactly how God demonstrates His love and compassion for us to this very day. He points us to the cross.
The prophet Jeremiah mentions God’s love for Ephraim in chapter 31. Ephraim was the largest tribe in the northern kingdom and was therefore used as poetic shorthand to refer to all 10 tribes of Israel. Jeremiah writes beautifully of God’s steadfast love for Israel and Judah and how He will save the remnant who call upon His name.
The writer of Hebrews instructs us in chapter 10 to interpret the promises of Jeremiah 31 ultimately as promises for the Church. Abraham is our father too, as Paul writes in Galatians 3:7, “it is those of faith who are the sons of Abraham.” We have Abraham’s faith, and the promises for God’s people are promises for us.
Jeremiah 31:20 was on my mind when we named our son Ephraim.
“Is Ephraim my dear son?
Is he my darling child?
For as often as I speak against him,
I do remember him still.
Therefore my heart yearns for him;
I will surely have mercy on him,
declares the Lord.”
This verse was a comfort for Old Testament believers as they sought refuge in God’s mercy in the midst of suffering or sorrow over sin. It is still a comfort for God’s people today. In our sin, God’s law speaks against us to humble us. The brokenness of life humbles us too.
Yet God remembers you. His heart yearns for you. He will surely have mercy on you. He forgives your sorry soul, and He is near to the brokenhearted.
It will always be this way. His steadfast love endures forever (Psalm 136).
Unlike my weeks-long process of growing in compassion for my Ephraim, God’s compassion for His Ephraim, you, is there right away. You are His darling child. He remembers you still.