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Grieving with Hope: When Your Child Has An Unexpected Diagnosis

Updated: Jun 17, 2023


Grieving with Hope When Your Child Has An Unexpected Diagnosis By Rachelle Keng, MD  Becoming a mother opens vulnerability to grief, especially when our children are different than we expected. Unexpected detours are humbling as a mother. When my daughter was diagnosed with Angelman's Syndrome, I became vulnerable to the daily griefs of motherhood. But as I died to myself and began to live for Christ, I learned how to grieve with hope. Our reaction and response to bad news reveals where our true hope lies. Mary, the mother of Jesus, was a "special needs mother" who was given a daunting assignment.
How do you respond when your child is given an unexpected diagnosis? How can you grieve with hope? Rachelle Keng, MD


Grieving with Hope When Your Child Has An Unexpected Diagnosis

By Rachelle Keng, MD


Becoming a mother opens vulnerability to grief, especially when our children are different than we expected. Unexpected detours are humbling as a mother. When my daughter was diagnosed with Angelman's Syndrome, I became vulnerable to the daily griefs of motherhood. But as I died to myself and began to live for Christ, I learned how to grieve with hope.


Pregnancy loss is an obvious grief of the womb. But less obvious is the grief experienced by mothers who receive an unexpected diagnosis for their children.


Perhaps your child is on a different developmental path or dealing with a chronic illness. Perhaps your child has a disability or a birth defect diagnosed on an ultrasound. Or perhaps your adult children have gone wayward despite your efforts to bring them back. Perhaps addiction has taken away your true child. Every mother grieves some type of dream for their children.


Many griefs of motherhood are not part of the original parenthood signup.

But you know what?


God has a plan - especially for unconventional motherhood. Mary, the mother of Jesus, did not sign up for supernatural motherhood either. She was chosen for impossible motherhood. No matter what she did right, her son would still be crucified on a cross.


In many ways, Mary was a “special needs” mother. She could not change the path that had already been given to her son. Mary lived a public parenting journey under the scrutiny of strangers who did not know the whole story. Her son was labeled unfairly as "a son of immorality" (John 8:41). As she mourned her son at the cross, she must have wondered if this was truly God's plan. It must have been so different from what she may have expected when she was visited by the angel Gabriel.


Thirty-four years prior, the angel Gabriel had visited Mary to tell her she was with child. Young Mary was inexperienced, but she was also willing to carry the son of God in her womb. The precious babe was born on a romantic night in a stable under the twinkling stars. As she cradled her child, she saw the promise, not the cross.


Because how could this young Mary know that her son would be beaten and killed in front of her?

In His mercy, God spared her of the details.

How would this young Mary know that her son would be the hope for all of eternity?

In His love, God had a plan for Mary raising a special son.


Similarly, God knows your needs and your child’s needs.

He may have given you a diagnosis, but He also has a plan.

His mercies are new everyday and He loves you.


It won’t help you to know about tomorrow as much as it will help you to know who holds tomorrow.


The moment you heard the news that your child had an unexpected diagnosis, did you feel numb? There was trauma in this moment, and it is important to recognize it. It may have felt like God was far away, but He was not. He was in that room with you when you found out that your life would be changed forever. And through the haze, He continues to reach out His hand to hold you and your child. He is not finished with you. He is only beginning.


As you react to life-altering news, you choose how you will respond.


Mary's reaction and response to the news of an unplanned pregnancy teach us how we can navigate an unexpected diagnosis for our children. She is known for her prayer in Luke 1, the Magnificat, during which she praises God for this unexpected blessing. However, was this prayer of praise her first reaction to the news of an unplanned pregnancy?


Mary's Initial Reaction:


1. Her first reaction to Gabriel was a question of logistics.


When told that she would give birth to a son, Mary was afraid. She asked, “How will this be, since I am a virgin? Mary had been given a diagnosis- not a prognosis. Not only were the logistics unclear, Mary had a lot to lose. Would she lose her fiancee, Joseph? Would she be stoned for claiming a pregnancy from a supernatural source? The logistics were not clear during Gabriel's visit.


If you have been given an unexpected diagnosis, the first question parents usually ask is, "How can this be?" You may have had no risk factors to suggest that this diagnosis would happen. It's okay to wonder not only how has this has happened. The normal reaction is to defiantly race through the "jungle of unknown diagnoses" with a machete in hand. But when you get a minute to process your surroundings, soak in the rich blessings that you would have missed at the perimeter of the jungle.


2. She took the time to get used to her new normal.


Mary had a few days to process her diagnosis before she met Elizabeth. Although the Bible does not tell of Mary’s emotions before she praised God in the Magnificat, she may have worked through some of her emotions by the time she saw Elizabeth.


If you have received a diagnosis that has shaken your world, take some time to grieve.

It is okay to be in shock, to deny it is happening, and to wonder where is God.

It takes time to get used to the new normal.

You will get there if you keep asking God to meet you.


3. Mary's found a trusted friend who would see her diagnosis as a calling.


After the angel Gabriel visited Mary, she went to visit her cousin. Elizabeth was also pregnant with John the Baptist. A "voice in the desert," John leapt in her womb to announce Jesus in-utero. During Mary's first trimester, she stayed with Elizabeth. Mary would have much to grieve in these few months - the loss of her beautiful figure, the loss of time with Joseph before parenting responsibilities, her plans were no longer going to be her own. Mary needed to be around people who would encourage her with the honor of the calling she had been given.


Surrounding yourself with positive people is very important as the news sinks in. Those who are walking with God will inspire you to see detours not as dead ends. They will help you see brokenness as an eternal treasure.


Mary's Response


After she held onto the news for a few days, Mary met with Elizabeth to tell her the news. It was during this time that she prayed the Magnificat. As we look at Mary’s prayer in Luke 1:46-48 (NLT), the Magnificat, we have a better idea of how to navigate the shock of an unexpected diagnosis:


1. Mary chooses worship.

She recognized her posture when she called herself “His lowly servant girl.” She did not think of herself as someone who was entitled to a perfect life. Instead, Mary saw herself as God’s servant. She chose to praise God’s character. She called Him Mighty, Holy, the One who had done great things for her, and the one who had shown mercy to those who fear him (Luke 2:46-50).


If you see yourself as God's servant, you will see His purposes as your own purposes - even when His purposes involve our brokenness. God can accomplish more through our brokenness than through our perfection. A special needs mother empties her own agenda so that God's plan becomes the most important itinerary.


2. Mary chooses to focus on God’s character over her circumstance.

Her circumstance was uncertain at the point that she sang the Magnificat. Would she be a single parent? There were so many reasons to fear. But in Mary’s moment of fear, she spoke of God’s character (vs 49-51). She described God as Mighty, Holy, and Merciful. Mary recalled God’s heart for exalting the lowly. She praised God for His justice and His mercy to the humble.


Becoming a special needs parent is humbling. The circumstances may seem senseless at times, and this is when we must call on God's character. Justice is important to Him. Mercy is His name. Remember who He is, and you will begin to see His daily fingerprints.

3. Mary knows God’s Word and chooses to trust in His promises.

The Old Testament scriptures prophesied that the Messiah would be born by a virgin in Isaiah 7:14. So when Gabriel told Mary that she was the chosen one, Mary recognized that she was part of this covenant many generations later.


God has promises for special needs mothers as well:

His grace is sufficient for our daily weaknesses.

His power is made perfect in our childrens' weakness (2 Corinthians 12:9).

His mercies are new every morning even when we live the same day over and over again. (Lamentations 3).

Suffering leads to perseverance, and perseverance leads to character, and character to hope - a hope

that is more profound than a cure. (Romans 5: 3-4)


We may want rescue from our unexpected diagnoses. Perhaps Mary did too when she was initially afraid of the angel’s message. But as we see in Mary's prayer, she embraces hardship. She chooses to be humbled by it instead.


Unexpected parenting weaves our hearts with God’s. Our hearts are humbled in hardship as we empty ourselves so that He can fill us. We may need Him in ways we never needed Him before. We see our children the way He sees us. Our appetites change as we hunger for heaven where their bodies and minds are no longer affected by disease.


A diagnosis is not the end of the world if we believe in a world outside of ours.

For the finale will be even sweeter for those who have needed Him the most in this life.

According to Isaiah, one day, in heaven at last:


Then will the eyes of the blind be opened

and the ears of the deaf unstopped.

Then will the lame leap like a deer,

and the mute tongue shout for joy.

Water will gush forth in the wilderness

and streams in the desert.

The burning sand will become a pool,

the thirsty ground bubbling springs.

In the haunts where jackals once lay,

grass and reeds and papyrus will grow.

And a highway will be there;

it will be called the Way of Holiness;

it will be for those who walk on that Way.

The unclean will not journey on it;

wicked fools will not go about on it.

No lion will be there,

nor any ravenous beast;

they will not be found there.

But only the redeemed will walk there,

and those the Lord has rescued will return.

They will enter Zion with singing;

everlasting joy will crown their heads.

Gladness and joy will overtake them,

and sorrow and sighing will flee away.

Isaiah 35:5-10 (NIV)


In heaven, broken bodies will leap. Mute tongues will shout for joy. Addiction will no longer rule.

Harmony will be sweet.

Jesus will not let you grieve forever.

He is our hope.

Hold on, my friend.



Grieving with Hope When Your Child Has An Unexpected Diagnosis By Rachelle Keng, MD  Becoming a mother opens vulnerability to grief, especially when our children are different than we expected. Unexpected detours are humbling as a mother. When my daughter was diagnosed with Angelman's Syndrome, I became vulnerable to the daily griefs of motherhood. But as I died to myself and began to live for Christ, I learned how to grieve with hope.  Our reaction and response to bad news reveals where our true hope lies. Mary, the mother of Jesus, was a "special needs mother" who was given a daunting assignment.
Mary and Elizabeth, a surprise pregnancy, an unexpected diagnosis. Rachelle Keng, MD

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