To the mom who’s just received a Down syndrome diagnosis

It’s been a year since we first learned that our baby likely had Down syndrome. The news came in amidst a deluge of overwhelming news that left me weeping on a bathroom floor. Our 20-week ultrasound appointment showed that he had a serious heart defect, severely restricted growth, and brain issues. We hadn’t done any prenatal screenings, but Down syndrome was also suspected.

The doctor gave us the prognosis that he’d be fighting for his life, and my world came crashing down. I was in shock. I’d previously had four healthy babies from four easy pregnancies. I’d vaguely been aware of the struggles that other parents have gone through… but those were other parents. How could this be happening to our baby? How could this be happening to me?

Those next few weeks were excruciating. The pregnancy itself was physically rough. But on an emotional level, I barely had enough energy to drag myself out of bed. Continuing the girls’ lessons was hard, cooking/cleaning was hard. Really, everything was hard.

The news was devastating to me, but the isolation I experienced only magnified my insecurities. For days, the people closest to me were silent, unsure of what they should say so nothing was really said at all. I felt God’s presence and trusted that He had a plan bigger than mine. But at that time I desperately needed shoulders to lean on, something tangible to let me feel that I wasn’t alone.

To make matters worse, I made the mistake of going on the internet to learn what the world has to say about babies like mine. The internet is such a mixed bag, but much of what stuck out to me about Down syndrome – or any baby with an abnormal diagnosis – had me drowning in negativity and selfish doubt.

Am I the reason this is happening to my baby?

Is it selfish to have him fight for his life?

Will he be a burden to our family and on society?

How will the world judge my son? And how will they judge me?

I’m not strong enough for this – why me?

When I was in that low pit of debilitating sadness and despair, I needed truth to be spoken into me. I didn’t need the world’s view on disability, I needed Jesus’. So this is my contribution. These are some of the greatest truths that I wish would have been spoken into me when I first heard about my baby’s medical frailty and Down syndrome diagnosis.
1. This baby is your baby second, God’s baby first.

God has loved this baby since before the foundation of the world with a love that is unconditional and eternal (John 17:24; Psalm 86:15; John 15:9-17). God has created your baby in His image, fearfully and wonderfully made, and knows everything about him – down to the tiniest details of his genetic makeup – and including all the days of his life from the point of conception (Genesis 1:27; Jeremiah 1:5; Psalm 139:13-16).

This is not about you – and you are not the reason for your baby’s condition.  Let go of any guilt you’re shouldering. You cannot own the details surrounding your baby’s conception. The task of science is to explain the physical world, but it will never be able to comprehend the ways of an all-knowing, all-powerful God.

Sin is the reason for the illness and death we see in this world. When a baby is disabled or when a pregnancy is determined to be nonviable, it is a symptom of Adam’s original sin of disobedience and its effects upon the rest of humanity. When sin entered the world, with it came sickness, imperfection, and death (Romans 5:12). God didn’t cause your baby to be disabled or weakened or nonviable, and God isn’t punishing you in this trial. Sin breaks God’s heart because it breaks our relationship with Him and His perfection (Genesis 6:5-6). We live in a fallen world that is wounded by the consequences of sin.

2. God’s plans are above our own, and no life occurs apart from the purpose of God.

God is able to remove sickness, disability, and death if He wills. But He often allows difficulties or tragedies to happen so that He may be glorified through them (John 9:3; John 11:4). God’s plan for your baby is greater than anything you could ever imagine. We are so weak in ourselves, but God loves this child in ways that you will never comprehend.

You cannot take it upon yourself to make the decision of when to end life. You are 100% not selfish for allowing your baby to live. There is no such thing as a child who is not worthy to live. Even when it’s dressed up in lab coats with prestigious degrees, the world’s wisdom is paltry compared to God’s. The world is centered on the self; you need to look beyond yourself. God will use every bit of your baby’s story to work together for good, and He will turn tragedy into victory (Romans 8:28; John 16:33).

I know it’s so hard. Mama, I know that right now in this moment this may feel like the biggest devastation of your life. I’ve felt some of your gut-wrenching pain, too. But please trust that this is so much bigger than what you see. You have to allow yourself to trust in Him and set your heart and mind with an eternal perspective.

3. Every child is a blessing, not a burden.

Every child is a blessing and reward from the Lord (Psalm 127:3-5). God has created us all different, with unique skills and abilities. He has set out a unique path for us all. He has made your baby just the way he is for a very special purpose.

But it is a choice to recognize your baby as a blessing and gift from God. Don’t be stuck in expectations for what your baby’s life should look like. And don’t let fear limit you from experiencing all the possibilities that your baby will bring – to you, your marriage, your family, and to the world. God is sovereign and He will march out ahead of you, guiding your work as a mother, and His blessing will light up the darkness (Isaiah 58:6-10).

4. I pray that you may see things as Jesus sees them.

We live in a culture that’s hell-bent on measuring human value through a disgustingly narrow lens. Having no real interaction with the special needs community before my son’s diagnosis, I was appalled when I learned that termination rates in America are estimated to range between 67% to 85% when parents are given a positive prenatal diagnosis of Down syndrome! (According to this Healthline article, Denmark’s Ds termination rate is close to 98%. And in Iceland, it’s nearly 100%. Please stop and check your pulse if this doesn’t break your heart, too.) When parents learn that their unborn baby will be born with physical deformities or a genetic disorder, doctors often encourage “fetal termination” out of the argument that life wouldn’t be easy. Or in other words, today’s culture bases human value on its perception of a person’s usefulness to society. Worldly wisdom is self-serving and follows what one thinks is wise in our own eyes (Proverbs 3:7).

Jesus sees things entirely different. Every baby – at every stage of life and in every capacity – is infinitely loved and valued by God. He doesn’t need human strength, knowledge, or ability to accomplish His work.

As Romans 12:2 says, “Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect.” The world’s messaging can be deafening and distorting IF YOU LET IT. Don’t let it lead you astray and leave you hopeless. You and your baby will be judged by the world. But God uses the foolish and weak in the world to shame the “wise” and “strong,” so that no one may boast before Him (1 Corinthians 1:27-29).

You must stand firm in truth, Mama. You must stand in confidence and not fall prey to the world’s way of thinking. I pray for your strength and endurance to withstand the persecution that comes with walking in obedience to the Lord.

5. You are not alone in this.

My heart breaks for you, knowing how overwhelming things are in this moment. I know what it’s like to grieve the loss of the life you expected for your baby. I felt like my world came crashing down around me and the shock left me feeling broken.

Even though I had my faith – and even in hearing God’s voice saying “I AM WITH YOU” – I felt so isolated during those first weeks after receiving my baby’s diagnosis. It felt like people cared, but few in my life could truly relate. If there aren’t people in your life reaching out to support you, know that they just might not know how to.

Whether it’s the shock of a diagnosis of Down syndrome or other disability, or the unimaginable heartbreak of a miscarriage or nonviable pregnancy, there are so many mothers who have walked the same path as you.

A few weeks after our diagnosis was given, I ran across Angie Smith’s story. Angie made the brave decision to remain pregnant with her daughter, Audrey, even though she had a fatal condition called anencephaly, where parts of the brain and skull are missing. In her book, I Will Carry You: The Sacred Dance of Grief and Joy, Angie details her experiences through carrying her daughter to term, and the eternal perspective it gave her. Although no two stories are ever the same, I felt connected to her brave journey with her sweet daughter. Knowing that this woman went through such devastation and came through on the other end stronger and closer to God gave me so much encouragement.

And I pray that I can give others some of that same encouragement by pointing you to Him. My brokenness last year gave me the deep-in-my-soul insight that I’d never be strong enough, capable enough, or anything enough without His strength to hold me up.

Miracles often look different than you think you’d want. For those first weeks following my son’s diagnosis, I prayed for God to remove the circumstances from my life. I prayed for Him to heal my son’s broken heart, to make his brain whole, to remove his disability. I wrestled and fought against God’s will because I wanted my own ways. But of all the miracles God allowed me to witness over this last year, the greatest was what He did in my own heart. Through the devastation, God drew me closer to Him than ever before. He allowed me to start grasping a bit of the width and length and height and depth of Jesus’ love that surpasses knowledge.

Mama, no matter what you’re facing in this moment, God is there with you in the trenches. It’s normal to feel that you’re not strong enough to handle this on your own, because by ourselves we’d never be enough to face our goliath. But God’s in the business of pushing us outside our comfort zones and beyond our own capabilities so that we feel our need to be fully reliant on Him. In your weakness, Christ’s power will be made perfect (2 Corinthians 12:9). He will always fill in for any inadequacies you’re fearing and will always provide what you need. He will be your shield and your refuge, your protector and friend. But you have to trust in God’s character more than your circumstances.

He loves all His children. He loves you and your baby. You are so not alone.

For this child I have prayed

When God spoke to me

On grief and brokenness

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