Truths that give Hope and Help for parents with special needs children

Though we didn’t realize it at the time, the day after Mother’s Day in May 2019, was a turning point for us.  Nothing would be the same after that.  Sarah was pregnant with our sixth child.  Though Sarah’s pregnancy had been difficult (the midwife had already turned her over to ob-gyns that specialized in high-risk pregnancies), she had had other difficult pregnancies and in the end everything had always turned out all right.  But that Monday she had gone to the doctor, knowing that something was up.  I think she had even packed a bag in case they sent her to the hospital.  Not that that should have been an ordinary expectation: she was only at 24 weeks gestation, far from her due date.  But that’s exactly what happened: things were so critical that they didn’t allow her to go home.  She went directly to the hospital.

When I came up to the hospital that evening, Sarah and I had a very important conversation with a doctor who told us that our daughter was not doing well at all.  They gave us the option of basically going home and letting her die.  For us that was not an option.  So the next plan was to keep my wife in the hospital and closely monitor the baby’s heart rate since the placenta was not providing adequate nutrition or oxygen until they would have to make the decision that Emma had a better chance outside than inside the womb.  She was small even for a 24-week unborn baby, so small that if she had been born then she almost certainly would not have survived.

This went on for about a month, but things came to a head on the evening of June 11, 2019.  I was there in Sarah’s hospital room when it happened.  The baby’s heartbeat was very faint.  When they called the doctor and she heard it, the look on her face told me that she had decided that now was the time to deliver the baby and she told everyone to get things ready.  Additional nurses came into the room and things began to move very quickly.  They rushed Sarah out of the room (they were literally running), pushed her bed down the hall and around a few corners and into an operating room.  I followed as far as I dare and then waited and hoped.

Our daughter was born about 10 minutes later.  I will never forget when I first saw her, there in that cage with all those monitors and lines and gadgets and devices.  Emma Hope Bass was born at 28 weeks’ gestation, 1 pound 7 ounces, and about 12 inches long.  Especially compared with our other children (our next smallest child came into this world weighing 8 lbs. 12 oz), she was super tiny.

She would spend the next four months in the NICU.  During that time, Emma struggled with significant issues with her bowel, in particular her small intestine.  She ended up losing a good bit of it and had to go through three major surgeries while in the hospital and one shortly after she had gone home.  Two of those surgeries were emergency ones.

The first surgery was one of those emergency ones.  Her bowel had twisted and part of it had died.  When we were in preop with our daughter, the surgeon (who was a Christian) told us gently but matter of factly that they might open her up and there not be enough bowel to support life.  Then a few minutes later they whisked her off to surgery.  We watched her go knowing that we might never see her alive again.  But I can tell you that God gave us peace that passes understanding in that moment.  

Though her bowel certainly gave us many anxious moments Sarah knew something else was up as well.  It was confirmed a couple of weeks before we came home.  Our daughter’s brain had not formed correctly due to something they called polymicrogyria and as a result she was expected to have significant intellectual and physical disabilities.  Those predictions have turned out to be correct.  An additional diagnosis that would come linked to this was cerebral palsy.  She also has microcephaly due to the polymicrogyria.  To this day, we don’t know why any of this happened.  Multiple tests have turned up with no conclusions.

Emma is now almost five years old.  We love our daughter.  We thank God for her.  But I have to be honest: it has been the most difficult thing we have had to deal with, and it’s not going away.  In fact, as our daughter gets older in some ways it will only get more difficult as we try to take care of her.  We will never be empty-nesters.  We will probably always have sleepless nights or less sleep than we would like.  When she is sick, we will always be wondering what is wrong with our daughter because she can’t tell us what is wrong.  There will always be hard decisions, innumerable doctors’ appointments, runs to the ER or urgent care on a regular basis.  And there are other things I would just rather not have to talk about.  But this is our life.

I wouldn’t wish this on my worst enemy. And yet I can honestly say at exactly the same time that I am thankful to God for this experience and our daughter.

But how do we process all this?  That’s the question that I want to consider with you for a few short moments: how do we as Christian parents process this kind of experience in a way that blesses our disabled children, builds up our faith, encourages hope, and glorifies God?  I do want to give some tips or advice to give you help, but first I want to start with some truths to give you hope.

Three truths to give you hope

Truth #1: It’s okay to weep.

We can feel guilty because we are sad that our children are the way they are.  We can feel guilty because we are disappointed that this has happened to them and to us.  There is this idea that if we really had the faith that we ought to have, we would be rejoicing instead of groaning.  The problem is that if you are stuck thinking that, it’s going to be very difficult to parent your children in love and hope and faithfulness.

But what does God’s word actually say?  It tells us that it’s okay to be sad.  It’s okay to mourn over the brokenness of our world, ourselves, and the disabilities that our children will struggle with for the rest of their lives.  This is not just allowable; it’s the right thing to do.  Our Lord said, “Blessed are those who mourn, for they shall be comforted” (Mt. 5:4). Of course there is a weeping without hope, and that is not what our Lord is talking about.  There is a worldly sorrow that leads to death, and our Lord is not talking about that.  But he is talking about weeping over the brokenness of this world.  He is talking about a holy reaction to what we know is not the way things ought to be.  We look at hurting people and we weep.  We experience losses and crosses, and we weep.  We ought to weep.  There is nothing holy or commendable about keeping a stiff upper lip and facing in an unfeeling way the reality that our children are suffering in very unique ways – and we with them.  In fact, there is a blessing from God marked out for those who weep and mourn.

But what about disappointment?  Is it okay to be disappointed?  Yes, I don’t see how you can mourn without it.  Andrew Wilson likens having special needs children to getting an orange when everyone else is getting chocolate.  It’s not that you don’t appreciate the orange; you just wish you had chocolate like everyone else, and you are disappointed.  He writes: 

Special needs, like the orange, are unexpected. We didn't plan for them, and we didn't anticipate them. Because our children are such a beautiful gift, we often feel guilty for even saying this, but we might as well admit that we didn't want our children to have autism any more than we wanted them to have Down's syndrome, cerebral palsy, or whatever else. Give or take, we wanted pretty much what our friends had: children who walked at one, talked at two, potty trained at three, asked questions at four, and went off to public school at five. We could have lived quite happily without knowing what Piedro boots were for, what stimming was, or how to fill out DLA (Disability Living Allowance) forms. So there are times when we're wiping the citric acid out of our eyes and watching our friends enjoying their chocolate, when it feels spectacularly unfair, when we wish we could retreat to a place where everyone had oranges, so we wouldn't have to fight so hard against the temptation to comparison shop and wallow in self-pity. We know that oranges are juicy in their own way. We know that they're good for us and that we'll experience many things that others will miss. But we wish we had a chocolate one all the same. In our case, that feeling has become less acute and less frequent over time. Our appreciation for the wonders of tangy citrus and vitamin C has increased, and our desire for milk fat and cocoa butter has diminished. But in our story, so far, it hasn't disappeared. I'm not sure it ever will. And that's okay. [Andrew and Rachel Wilson, The Life We Never Expected (Crossway: Wheaton, 2016), 35-36.]

Here is the way the apostle Paul put it: “…we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies” (Rom. 8:22-23).  The groaning that the apostle is describing here is groaning over the brokenness of creation.  All the pain and suffering and sickness and disease and disability that we experience is a product of a broken world.  What our children are experiencing is part of that brokenness.  And Paul says that we groan over it.  This is not something he just allows might happen, but something that will and must characterize the believer.  I think it was John Stott who complained that most of us grin too much and groan too little.  For if we really believe the magnitude of the redemption that Jesus is bringing and we compare that to the ways sin is still marring ourselves and the world around us, how can we not weep and be disappointed?  How can we not groan?

I start here – with weeping – because it’s often been observed that one of the mistakes people make with hurting people is to try to fix their problem right away by quoting a Bible verse or slapping a truth on them.  Though well-meaning and true, the reality that “God is sovereign, and this is his will for you,” doesn’t tend to come across as the glorious truth that it is but rather comes across as, Suck it up, buttercup.  We need instead to learn to embrace the glory of the truth as we groan in our trials.  We aren’t supposed to think that the truths of Scripture about God’s will and power and sovereignty and good purpose for us are meant to negate or do away with the very real disappointment and sadness we are feel when it comes to our disabled and special needs children.  We need to understand that God’s sovereignty and our sadness are compatible, and like the Passover meal, often the medicine of God’s sovereignty can only be taken well when it is first coated with the bitter herbs of sadness and disappointment.

By the way, I don’t want you to think that because I am putting this first, this is like some kind of list, so that we weep and then move onto something else.  Disability often doesn’t go away, and for many of our children will probably get worse with time.  Sadness is not something we will necessarily get over this side of heaven.  That doesn’t mean that sadness is the only thing that describes us or that we must always be robbed of joy.  The apostle Paul said of himself and his fellow apostles, that they were “sorrowful, yet always rejoicing” (2 Cor. 6:10).  I’m not saying this to encourage you to wallow in your sorrow.  But neither am I arguing that sorrow will or should go away.  We follow Jesus who was “a man of sorrows and acquainted with grief” (Isa. 53:3, KJV).  It should not surprise us if in following Jesus we find that we too are people of sorrow and acquainted with grief.

Doesn’t Job show us this?  “He rent his clothes and shaved his head and fell on the ground – and worshipped” (Job 1:20).  Some of us want to skip the first part and go right to the second part.  But this is the inspired record of Job’s actions: “In all this [including the rent clothes and shaved head and prostrate posture and all the emotions that went along with that] Job did not sin or charge God with wrong” (22).  Brothers and sisters, weep even while you worship.  It’s okay to be sad.

Truth #2:  God is in control (and you are not).

One of the things I never saw coming is how hard it was to keep saying goodbye to my children.  When Sarah went into the hospital and then got a room in the Ronald McDonald House so she could be near Emma (the hospital was about an hour and a half from our home), we had to farm our children out to grandparents because I was still working, and we couldn’t of course just leave them at home alone.  So the boys went to my parents and the girls to my wife’s parents, and this is pretty much the way it was for five months.  The problem was that my parents lived about 2 hours from the hospital, which meant that we only got to see them for a little time once every two weeks.  And then we had to say goodbye for another two weeks – again, and again, and again, and again.  That was extremely hard.  I still get emotional just thinking about it almost five years later.

And I couldn’t change any of it.

I have always said, at least since I’ve been a Christian, that God is in control.  But it is one thing to say this, and even to believe it, and it is another thing to have to believe it.  And I say it that way, because if you don’t really put your trust in the living God who rules in heaven and on earth and always does what he pleases for his glory and your good, and if you don’t believe that he will – despite all your limitations and mistakes – work all things for your good, then you won’t be able to parent your children with the kind of faithful, hopeful faith and love that we are called to live out.  Instead, you will likely end up a bitter, perennially disappointed, and angry parent.

My friends, don’t go there.  Instead, embrace the glorious truth, as Job did, that God will bring you forth as gold.  Believe that God is in control, and you are not.  

I’ll say more about this in a bit, but let me go ahead and say now that it’s important not only to believe that God is in control, but that he is in control for your good.  That’s what Romans 8:28 is all about.  But the entire Bible is meant to teach us this.  God doesn’t just bring suffering into our lives: he does so with loving and good purposes.  It’s what 2 Cor. 4:16-18 teaches:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 

Any affliction God brings into our lives, or the lives of our children, is done with the infinitely wise and loving purpose of preparing for us an eternal weight of glory beyond all comparison.

And the fact that God is sovereign means that he is providentially at work in our lives at every moment, sustaining us, guiding us, strengthening us, giving grace to us, supporting us, keeping us to the end.  We need to believe that and live upon it.

We also need to submit to it.  Have you ever thought of it like that?  God’s sovereignty in part means that he rules over us and over all our lives in the particularity of the daily decisions and choices, in the good things and in the bad things, and we are to submit to it.  This is not optional; this doesn’t depend on how we feel.  The reality that God is in control, and I am not, is impossible to really believe without submitting all your life to God – including how you care for your disabled children.  This is hard, exceedingly difficult, but I can tell you that when you are really able to do that, incredible peace is the fruit.

I want you to notice something our Lord says in the Sermon on the Mount.  This is what he says: 

No one can serve two masters, for either he will hate the one and love the other, or he will be devoted to the one and despise the other. You cannot serve God and money.  Therefore I tell you, do not be anxious about your life  (Mt. 6:24-25)

Why is the “therefore” there for?  It’s there to show us that anxiety is often linked with a failure to submit to God.  In other words, when we are submitted to God and his will for our life, then we are really in the position to trust in our heavenly Father, that he knows our needs and will care for us.  It is a hope-giving reality, isn’t it?  God is in control, and you are not.

Truth #3: The disability is for the glory of God and your good.

I can’t remember exactly when it was, but I think it was early on when Emma was in the NICU. I was walking out of the hospital after visiting her, almost dizzy from the emotional rollercoaster we were riding and trying to process everything that was happening.  And as I walked out of the hospital that day, I suddenly remembered the story of the man born blind from birth and the question the disciples put to Jesus when they saw him: “As he passed by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’” (Jn. 9:1-2).

That’s the question a lot of us end up asking ourselves, isn’t it?  Lord, why did this happen to me?  Why did this happen to our daughter?  Is it because of something I’ve done?  Is it because I’ve sinned?  Am I being punished here? And if you haven’t asked yourself that question, perhaps some other person with rather bad theology has asked it for you . . . like Job’s miserable comforters, or like the disciples in John 9.

Our Lord’s answer was the thing that brought great comfort to me and continues to do so to this day.  Now, I know that our Lord spoke this about a particular man who was born with the disability of blindness and not about my daughter. But because I know that God is in control of all things, and because I know that he loves me in Christ and has so from before the foundation of the world, I don’t think there was anything wrong in appropriating what Jesus said about him to our own situation.  And so I love our Lord’s answer and find it to be a hope-creating, faith-sustaining one: “Jesus answered, ‘It was not that this man sinned, or his parents, but that the works of God might be displayed in him’” (3).  

Why was the man born with this crushing disability that rendered him a beggar, an embarrassment to his parents, and a burden to the community?  It was not because his parents had sinned.  It was not because he had sinned.  Stop there for a moment.  We must not immediately jump to the conclusion that because suffering has come into our lives that God is out to get us because we have sinned.  This is no sign that you have messed up or that God is bringing your past to judgment.

Now it is true that God disciplines his children (Heb. 12), but the reason he does that is out of love to bring about the peaceable fruit of righteousness in our lives.  You might legitimately see what is happening to you as discipline; but one thing we must never say if our sins have been covered in the blood of Jesus Christ, if we are standing in his imputed righteousness before God, is that this is happening because God hates us and is punishing us.  That is the one thing we must never say.  

Why was the man born blind?  It was “that the works of God might be displayed in him.”  And that’s exactly what happened.  The blind man himself said it in his remarkable testimony: “Never since the world began has it been heard that anyone opened the eyes of a man born blind (Jn. 9:32).  Because of his blindness, he was able to be a witness to the glory and power of Christ in a very unique and incontrovertible way.  

God will not waste your sufferings or the sufferings of your children.  They are not present because you have sinned.  They are not a punishment.  They are because through them God will display the works of his power.  We know since God is sovereign that suffering doesn’t come into our lives without his purpose and permission.  But this also means that the suffering is not outside of his control, and that is good news.  For those who belong to him, to those who are in Christ, all our suffering is for our good.  

Because God is in control, we know that he not only brings the suffering but the blessing as well.  Michael Beates explains how this is the implication of verses like Deut. 32:39, which reads: “See now that I, even I, am he, and there is no god beside me; I kill and I make alive; I wound and I heal; and there is none that can deliver out of my hand.”  He writes: 

It would be one thing if he [God] only afflicted.  Such a horrific god would certainly engender fear and submission, but not love and devotion.  It would be equally horrific if he were a god who only healed, because that would mean he has no control over the afflictions that assail us.  But in this brief passage, God begins to reveal himself (and will continue with greater clarity) as one who is both the ultimate source and the ultimate solution. [Michael S. Beates, Disability and the Gospel: How God Uses our Brokenness to Display his Grace (Crossway: Wheaton, 2012), 32.]

A tendency is to dwell on all the bad things that we have to deal because of the disabilities of our children: the suffering of our children, all the inconveniences, the stares, the inability of others to understand, and a thousand other things.  But the reality that God loves us and is for us in Jesus means that we should look for unexpected blessings to come with them, remarkable ways to be witnesses of God’s power and burning lampposts for his glory and grace and love.

We have certainly experienced that with Emma.  Her smile is a witness in and of itself.  I don’t know how many people have commented on the fact that Emma’s happiness despite her suffering makes them want to endure their own trials with more joy and steadfast hope.  We have had opportunities to witness for Christ and our hope in him in places and to people we would never have been able to otherwise.  And I think of the impact Emma’s disabilities have had on my other children, how it has made them more compassionate with those like Emma.

Yes, it’s hard.  But it’s not just hard, because with the thorn comes the grace.  We should expect to experience what Paul experienced after pleading with the Lord for the thorn to be taken away: “But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong” (2 Cor. 12:9-10).

As William Cowper put it in his memorable hymn:

Ye fearful saints, fresh courage take;

the clouds ye so much dread

are big with mercy and shall break

in blessings on your head.

Judge not the Lord by feeble sense,

but trust Him for His grace;

behind a frowning providence

He hides a smiling face.

These are big truths that can take a lifetime to learn.  I am thankful God is patient with us!  But let’s try to learn them in a way that is practical, that makes a difference in our lives.  And with that in mind, let me end with four tips to give help to those of us with special needs children.

Four tips to give you help 

Tip #1: Maintain a personal walk with God.

Jesus in the Parable of the Sower talks about people for whom the cares of this life choke out the fruit of the word in their lives.  This is certainly possible when you have special needs kids.  There are just so many things that have to be done in addition to everything else that you can easily justify in your mind the abandonment of prayer and the daily intake of God’s word in your life.  I think most of us can identify more easily with Martha than Mary, can’t we?  However, we need to be desperate about seeking God on a daily basis, so that even if it means, like Susanna Wesley, draping the apron over your head to have some space to yourself so that you can talk to God, we need to do that.  

The thing is that we won’t be able to face the challenges of life apart from the grace of God.  And though I thank God that he often blesses us with mercy and grace even when we don’t ask for it, the instruction of Scripture is that we should expect to receive it when we ask for it, and we have not because we ask not.  So, brother and sister, walk with God.  Read his word, feed on it, pray it.  

Tip #2: Focus on your marriage.

On one of our first trips to the neurologist after we had been home with Emma for a bit, the neurologist strongly advised us to make our marriage a priority.  The reason, he said, was that having a child like Emma tended to be hard on marriages.  I’m sure that he had seen some of them dissolve and that’s why he was so insistent that we work on our marriage.

I am thankful for those words of advice.  Trials can certainly bring a couple together, but they can also drive them apart.  There are plenty of opportunities for sin when we are dealing with hard things.  Selfishness tends to get the better of us, and harsh words can be spoken in a moment of weakness and frustration and anger that can’t be taken back or unheard.  

So, brothers and sisters, work on your marriages.  Take time for dates.  Let your spouse know that you love him or her.  Be intentional about your relationship.  Our children are important, but a healthy marriage is the very best environment for our children, especially for children with special needs.  Do you want to bless your children?  Bless each other first.  There is a reason why Eph. 5:22-33 precedes Eph. 6:1-4.  Be examples of the relationship that exists between Christ and the church.  It is then that we can bring up our children in the nurture and admonition of the Lord.

Tip #3.  Take care of yourself.

Now, I am not a fan of the self-care movement.  In our day, it has been taken to an extreme and been used to justify all kinds of selfish and even sinful acts.  I hate that.  After all, if Jesus prioritized self-care, we would all be in hell.  However, we shouldn’t think that we can burn the candle at both ends and think all will be well in the end.  John Owen, the great Puritan, in later life regretted abusing his body with lack of sleep during his college days.  So we need to take care of ourselves if we want to take care of children who need extra care.  In an article for 9 Marks, Pastor Eric Brown says this for pastors with special needs children, but which is applicable for all of us, pastors or no: 

Whenever you can, sleep and eat well, exercise, and find ways to relax. Tend to your own soul, develop friendships. Cultivate relationships with your fellow elders, others local pastors, or just wise Christian friends. You need regular reminders you are not alone. [https://www.9marks.org/article/pastoring-a-small-church-while-parenting-special-needs-children/]

To give an illustration in my own experience, I’ve always tried to be an early riser, but when Emma came along, we ended up having to get up a lot during the nights.  It just became impossible to get a full night’s sleep (and to this day, unless we have a night nurse, it still is).  As a result, it sometimes became necessary to sleep in in the morning.  I felt guilty about it at first, and certainly you can take this to an extreme, but you have to get sleep if you are going to operate.  I had to get over the guilt of sleeping in so I could care for my daughter.  

Brothers and sisters, within the context of serving others, take care of yourself.

Tip #4: Don’t neglect your other children.

We have six children.  Emma is number six.  Emma takes a tremendous amount of time.  She can’t feed herself.  We have to prepare her food every morning and oversee all her feeds, whereas my next youngest daughter who is eight years old can make herself an omelet.  Emma has to be dressed and thankfully the rest of our children dress themselves.  And so on: you get the picture.  It would be easy to forget that we need to pour our lives into our other children.  Brothers and sisters, if we have other children, let’s not neglect them.  It’s not that we would intentionally do that, but our time is limited, and we can lose track of it as it gets poured into our children with special needs.  Make some time with each of your children.  Go on a bike ride with them; take them out to eat.  Do something special with them; invest in them.

Conclusion

Two thousand years ago, God sent his Son into this world.  He did not send him into this world to be famous or to have an easy life.  Rather, “a root out of dry ground; he had no form or majesty that we should look at him, and no beauty that we should desire him” (Isa. 53:1-2).  And his life was marked by hard things constantly: “He was despised and rejected by men, a man of sorrows and acquainted with grief; and as one from whom men hide their faces he was despised, and we esteemed him not. Surely he has borne our griefs and carried our sorrows, yet we esteemed him stricken, smitten by God, and afflicted.” (3-4).

But thank God, he did not come merely as a martyr, or as an example of how to endure disability and other hard things.  He came to deal once and forever with the problem of sin and the curse of sin and all that flows from that, including disability.  For “he was pierced for our transgressions; he was crushed for our iniquities; upon him was the chastisement that brought us peace, and with his wounds we are healed.  All we like sheep have gone astray; we have turned—every one—to his own way; and the LORD has laid on him the iniquity of us all” (5-6).  

In bearing our sins, Jesus Christ fully satisfied God’s holy justice on our behalf so that all who put their trust in him can be reconciled to God and make right with him (2 Cor. 5:21).  And this ought to make a real difference in our lives, should it not?  The curse has been overcome in Christ.  My hope is not that my daughter’s disability will be miraculously removed in this world.  My hope is that because of Christ she will be raised one day with a body that has been redeemed from all the effects of the curse.  My hope is that because of Christ God loves me, and loves me with an unbreakable, never-ending love that will lead to never-ending, ever-increasing joy in his presence forever.

And so in the end, the gospel is what gives us hope.  We can weep because the cross means that one day we will weep no more.  We can put ourselves in the grip of God’s sovereignty knowing that the Sovereign is also our Savior.  We can know that he will work all things for our good, precisely because that’s his promise in Christ.

So brothers and sisters, keep on keeping on.  “Be joyful in hope, patient in affliction, faithful in prayer’ (Rom. 12:12).  We can parent our special needs kids in hope because Jesus died for us, rose from the dead, and will come again to make this reality true:

No more let sins and sorrows grow,

nor thorns infest the ground;

He comes to make His blessings flow

far as, far as the curse is found.