For you created my inmost being;
    you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.

My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.

Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

—Psalm 139:13-16 (NIVUK)

This beautiful Bible passage gives hope to many parents when they are expecting a baby or holding one in their arms.

Every birth is a wondrous miracle, and when that sweet little one is linked to you forever, you experience an awesome emotion that never goes away, not even after the baby grows up and becomes independent.

But if you are the parent of a child who has special needs or is born with congenital issues, would this passage still speak to you?

To walk through this journey fraught with challenges, we need hope.

How would you make sense of the phrase “fearfully and wonderfully made” (v.14)? Has God really seen the unformed substance of your baby, born with the Trisomy 21 syndrome, or with cerebral palsy, or without limbs, or without the ability to hear or see?

In the face of such human imperfections, how can a parent still behold the “miracle” of a baby?

And if we learn during pregnancy that our child is likely to be born with special needs, should we choose to keep the baby? And if we find out our baby’s special needs only upon birth—after months of joy, hope, and expectation—how are we to respond?  

Psalm 139 calls on us to press on, to hang on, and to trust God for the journey ahead, for ourselves as well as for our children.

But surely we will wrestle with the whys and hows of our baby’s condition.

We might be filled with guilt, wondering if we have done something wrong to cause it. Or, we might shake our fists at God, blaming Him for allowing this to happen.

In the face of such human imperfections, how can a parent still behold the “miracle” of a baby?

After all, He had seen the unformed substance of our baby. So why is He being so unfair to our child? We might also be overwhelmed by anxiety and worry, as congenital issues do not occur alone: our baby may struggle with a host of other health problems or may have to undergo one surgical procedure after another.

To walk through this journey fraught with challenges, we need hope. And that’s where we have to ask ourselves: “Where does our hope lie?”  

When Dara Fell Sick

When Dara, our second daughter, was 14 months old, she fell sick and slipped into a coma that lasted three months.

She had many brain scans done, each one looking worse than the last. The doctors gave her a very bleak prognosis—that she would probably spend the rest of her life in a vegetative state.

It was a dark and uncertain period for us, but one hope pulled us through: we believed that God was in control—that He knew what He was doing, even if the medical team did not seem to.

The greatness of our faith depends on the greatness of the one in whom our faith is placed.

We held on to this truth about God; it gave us hope and strength, and we did not give up on our baby.

As Dara was only a baby, the doctors had allowed me to remain at her side throughout her stay. Spending day after day in the hospital, without any idea how long it was going to go on for, was most depressing and wearisome.

We saw other children being warded for treatment, then leaving to go home. Child after child left, but we stayed on. The days stretched into weeks, then into months, and the outcome remained uncertain as the doctors changed one course of treatment for another. Then, as I hung onto God and onto all He had promised, I looked into the Bible for help.

A Call to Hope: Who is Our God?

Psalm 146:5 tells us: “How blessed are those whose help is the God of Jacob, whose hope is in the Lord their God.” The greatness of our faith depends on the greatness of the one in whom our faith is placed.

We believed that God was in control—that He knew what He was doing, even if the medical team did not seem to.

Similarly, our hope is only as good as the one we have placed our hope in. So, when life looks hopeless, we look to God, the One in whom we have placed our hope.

Taking a few moments, let’s allow these truths about our God to sink in.

Truth #1: God Made the Heavens and the Earth, and He Made Man.

Thus says God, the LORD,

who created the heavens

and stretched them out,

who spread out the earth

and what comes from it,

who gives breath to the people on it

and spirit to those who walk in it

—Isaiah 42:5

Truth #2: God is Sovereign Over All of Creation, Including Our Lives and All That Happens to Us.

Yours, O Lord, is the greatness and the power

and the glory and the victory and the majesty,

for all that is in the heavens and in the earth is yours.

Yours is the kingdom, O Lord, and you are exalted as head above all.

Both riches and honour come from you, and you rule over all.

In your hand are power and might,

and in your hand it is to make great and to give strength to all.

—1 Chronicles 29:11-12

Truth #3: God Loves Us and He is Faithful.

The steadfast love of the Lord never ceases; his mercies never come to an end;

They are new every morning; great is your faithfulness.

“The Lord is my portion,” says my soul, “therefore I will hope in him.”

—Lamentations 3:22-24

Truth #4: God is Our Help and Our Strength.

Fear not, for I am with you; be not dismayed, for I am your God;

I will strengthen you, I will help you, I will uphold you with my righteous right hand.

—Isaiah 41:10

Truth #5: Nothing is Too Hard for God.

As for me, I would seek God, and to God would I commit my cause, who does

great things and unsearchable, marvellous things without number.

—Job 5:8-9

Truth #6: God’s Grace is Sufficient for Our Circumstances.

My grace is sufficient for you, for my power is made perfect in weakness.

—2 Corinthians 12:9a

Truth #7: God is Never Late.

For still the vision awaits its appointed time; it hastens to the end—it will not lie.

If it seems slow, wait for it; it will surely come; it will not delay.

—Habakkuk 2:3

Our Hope in Him Changes Us

I actually started with Truth #4—that God is my help and my strength—and Truth #3—that He loves us and is faithful.

They showed me that I was not alone. It was a very personal revelation, and I sensed His presence and His comfort each day.

Through all these, the hope that we have in God has always helped us to stay the course.

And whenever the situation looked bad, like when a fresh brain scan showed further damage, the truth about God’s sovereignty and almighty power (Truths #1, #2 and #5) would reassure me of my hope and helped me to lean more deeply into God for strength even as we sought healing for Dara.

And at times when I felt like I was at the end of my tether, God’s grace would pull me through. I learnt to trust His perfect timing (Truths #6 and #7).

When I look back on this period, I realised that these truths about God were the best anchor in our storm.

They enabled me to be totally present for Dara—in the meetings we had with the medical team, in learning from the nurses how to monitor her situation, and in caring for her.

I sensed His presence and His comfort each day.

Miraculously, Dara did recover, and has gone on to achieve much more than anyone has expected.

As she suffered substantial brain damage, her development has been delayed. Today, she is still unable to read or count. But she can walk and talk. She runs, swims, and climbs; all her other faculties are working well.

She is able to feel a whole range of emotions, including compassion, anger, excitement and joy.  She loves people generally and trusts implicitly. She has learnt that when people are sick, she can pray for them.

In the 18 years since her sickness, Dara has continued to surprise us in many ways.

The road that we have travelled has been bumpy, especially for Dara. She had had many therapists working with her to overcome her physical and mental challenges. She has gone to schools for special-needs children, where teachers helped her to be where she is now.

Why should they be less thankful, he said, because their baby had an extra chromosome? God was still the giver of gifts and He was in charge.

There have been countless behavioural issues—and there still are some—which constantly challenged us. Things have been damaged at home, we’ve seen many tantrums, and we’ve lived through many occasions when we lost her in public areas. Through all these, the hope that we have in God has always helped us to stay the course.

A mum I know had a similar journey.

After being childless for years, she was ecstatic to discover, at the age of 42, that she was finally going to be a mother. But after the first few months of joyful expectation, she learnt that her child was going to be a Trisomy 21 baby, more commonly known as Down syndrome.

She was filled with self-pity and felt utterly depressed, until her husband reminded her that their baby was God’s gift to them.

Having hope in God will not take away our challenges as parents of special-needs children, but it does change how we face the challenges.

Why should they be less thankful, he said, because their baby had an extra chromosome? God was still the giver of gifts and He was in charge.

This mum spent the rest of her pregnancy—and the years that followed Abigail’s birth—learning everything she could about Down syndrome and how she could help her daughter develop every God-given potential she had.

And God healed some of the girl’s congenital issues at birth; He even gave her a stronger body than other children. In overcoming the many physical and mental challenges, Abigail and her parents have learnt to trust God fully.

Our Hope in God Keeps Us Going

Having hope in God will not take away our challenges as parents of special-needs children, but it does change how we face the challenges, and in turn change the impact they may have on our children.

…when we focus our hope on God, we are set free…

Learning to trust in God also means that we have the privilege to grow close to God and know Him personally as the disciples of Jesus did. (While the parenting journey gives all parents this privilege, I’d like to think that parents with special-needs children have the opportunity to surrender a little more frequently and deeply.)

We will then be able to say as Paul did, “Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong” (2 Corinthians 12:10).

We know that God does not make mistakes, nor will He ever overlook us in our troubles (Truths #5 and #7).

One day, we may know fully why God has allowed this trial to befall us. For now, we can only guess at some of the reasons why, as we experience God’s abundant gifts of grace along our journey. And we can hold on to the hope that “all things work together for good, for those who are called according to his purpose” (Romans 8:28).

When we focus our hope on our children and how they can improve or what they can achieve, it limits us in many ways.

But when we focus our hope on God, we are set free. Free from worry, anxiety, depression, and a fear of the future. God is able; we are reminded to always use God’s best to do our best.

Then we will be able to draw comfort and take delight from Psalm 139:16: “And in Your book were all written the days that were ordained for me, when as yet there was not one of them.”