Suffering with hope

Seeing the Unseen – Hope for Families Living With Unseen Special Needs

I stirred uncomfortably in my seat, struggling to accept the reality that this chair had my name on it for a reason. I sat there quietly and listened as the group went around sharing their personal journey of special needs. One family shared about their sweet boy living with a genetic disorder, bound to a wheelchair and feeding tube for the rest of his life. Life was hard in ways that I couldn’t even imagine, with griefs and sorrows that few can fathom. Another shared about the struggles and joys of raising their precious daughter with down syndrome, now grappling with the unknowns of what the future would hold. As we went around the room, I listened to stories of non-verbal autism, genetic disorders, down syndrome, and the vast array of special needs that each of these parents were navigating. Each shared a common denominator of a life they never expected, yet each story bore different challenges, griefs, fears, unexpected blessings, and countless unknowns. 

I related in many ways, even though I couldn’t fully understand the unique struggles of each diagnosis. And yet, somehow I still felt out of place.

But if this wasn’t our place, then where was it?

My chest tightened as our turn inched closer. What should we say? Should we even be here? Doubts and insecurities flooded my mind. Who are we to complain when our child can walk and talk? I resonated with the impact and complexities of the others’ stories, but I still felt as though we somehow didn’t belong. 

Suddenly it hit me – these parents had been given the high and difficult calling of raising a child with special needs, but every single one of them had special needs that were visible to the outside world. 

We didn’t. For the most part, we looked “normal” from the outside. Our child looked healthy. Sure, anyone who knew us well enough, knew that there was far more behind the scenes than what could be seen from the outside, but for most, they could look at our family and assume we had a relatively “normal” life. Even if they did see something a little “off” or an occasional outburst or odd behavior from our child, it was easy to assume that it must be due to bad parenting or a lack of discipline. 

Little did they know that most days our family was barely surviving. I looked healthy on the outside but battled daily chronic illness on the inside, our children looked happy and healthy, yet all four suffered from the same illness. Yet even those challenges paled in comparison to the life-altering effects of our child’s special needs that ravaged his brain, behavior, mood, emotions, and body on a daily basis – causing suffering and complexities that I can’t even begin to describe or share openly.

For us, we lived on the outside. Outside of normal, but also outside of the typical understanding of special needs. There are often no gofund me’s, support groups, or clear and concise diagnosis for a child sick with one of the many faces of mental illness. Not because the needs aren’t there, but because the needs are often misunderstood and they can’t always be shared openly in protection of the child. Even more despairing is the reality that very few doctors seem to know the cause or solution due to the complexities, unknowns, and variations of brain disorders. 

Therefore, our suffering is doubled as we navigate the life-altering effects of our child’s special needs, while also suffering from the loneliness, assumptions, doubts, lack of understanding, lack of support, and lack of answers. We desperately need help, but help is often out of reach. Worst of all, our desperation is rarely seen or understood by those around us – even those close to us. 

This is the silent and hidden world of unseen (or misunderstood) special needs. 

There are countless families who live in this difficult, lonely, and doubly painful place – those raising a child with the complexities and unique variations of mental illness, oppositional defiance disorders, anxiety disorders, high-functioning Autism, sensory disorders, depression, OCD, eating disorders, neurological Lyme Disease, PANDAS, and often, many of these combined. 

Too often, the hidden and complex special needs that arise from a brain disorder force families to live in the dark, misunderstood by the medical community, judged by those in the church, and void of state funding for medical care because the needs aren’t visibly clear. 

Instead of sympathy, compassion, and support, they often receive judgements and doubts; instead of insurance coverage, they spend every penny to their name in desperate hopes of healing; instead of sharing openly, they tread carefully for the protection of their child; instead of letting others in on their painful reality, they begin to self-protect from the added wounds of others.

If this is you, I’m so very sorry. From a parent who has walked an incredibly painful and lonely, journey of non-visible special needs, my heart aches for you. 

Although the face of your child’s needs may vary from ours, I hope to encourage you with a few truths that have given me comfort lately as I’ve read through an account of another hurting and desperate father in the book of Mark. He, too, knew what it was like to be a heartbroken parent, desperate to help his son, yet judged, hopeless, and utterly helpless to save his child. 

When even the experts can’t help

“And he (Jesus) asked them, ‘What are you arguing about with them?’ And someone from the crowd answered him, ‘Teacher, I brought my son to you, for he has a spirit that makes him mute. And whenever it seizes him, it throws him down, and he foams and grinds his teeth and becomes rigid. So I asked your disciples to cast it out, and they were not able’ (Mark 9:16-18). 

Now, let me be clear, I’m certainly not suggesting that mental illness is correlated to being demon possessed. Although I do believe that there are spiritual elements to everything we experience in life, the brain can be broken just as any other part of the body – but in a far more complex way. 

Nevertheless, I’ve related and found comfort on many levels in this account in Mark. One being, that when this desperate father brought his son to the disciples – the very men who had been casting out demons from others – even they couldn’t help him. 

Can you imagine this father’s grief? From childhood, he had helplessly watched his son turn into someone else as the evil spirit would seize him, not only torturing the child, but wreaking havoc on everything around him. At times, the father must have seen and experienced the true personality and character of his son, but once again, the spirit would overcome him and the damage would be done – physically, relationally, and socially. I can’t imagine many other things as painful and devastating for a parent to experience. Not only did he helplessly watch his child suffer for years and bear its damaging effects, they were likely judged and cast aside by society. And now, even Jesus’ disciples couldn’t help him (despite having helped many others). How hopeless and despairing he must have felt. 

A feeling that I’ve felt all too often.

Even in a country where there are many wonderful services and support for special needs, mental illness (especially in children) is still very misunderstood because of the complexities and various ways it can manifest. 

Personally, we have seen nutritional doctors, sleep doctors, behavioral therapists, occupational therapists, psychiatrists, psychologists, neurologists, chiropractors, naturopaths, autoimmune/Lyme Disease doctors, brain specialists, general practitioners, and anyone else who had the potential to find the cause and solution to his and our suffering. Yet, here we are, not much better off than we were thirteen years ago. Because our child’s challenges are a-typical and don’t fit neatly into a clearly understood diagnosis, we get passed from doctor to doctor, void of the typical support for families with understood special needs. On top of it all, the devastation that we’ve experienced has been fully seen and understood by only a select few, leaving us to bear much of the burden on our own. And after countless conversations that I’ve had with others who have cautiously shared their similar journey with us, I know that we aren’t alone. 

So where are we to turn when our options run out, our hope dwindles, and no one seems able to help?

To the same One the hurting father turned to as his final hope, the only One who sees and knows what no one else can – Jesus himself.

Faith in the impossible

Jesus said, “Bring him to me” (vs. 19).

When the boy was brought to Jesus, he asked the father, “how long has this been happening to him?” The father answered, “From childhood” (v. 21).

This boy and his father (and whatever family they had) had long-suffered. We don’t know how old his son was, but he was old enough to be past childhood. Most likely they had suffered years of pain, questions, guilt, shame, and the rejection of others. Why was their boy possessed by an evil spirit? What had they done wrong? They saw the looks of others and it didn’t take much imagination to know what they were thinking. As if their own pain weren’t enough, I assume that no one wanted to be around them and most made assumptions as to why this family was suffering at the hand of an evil spirit. Not only were they suffering, they were suffering alone as the world cast salt upon their gaping wounds. 

But now, after all those years, there was One standing before him who didn’t run, hide, or turn his nose up at what was too difficult, scary, and overwhelming for everyone else. Instead, despite knowing everything about this man and his son (past, present, and future), Jesus looked upon them with compassion and said, “Bring him to me.” 

Oh, the hope that this gives my weary heart. These heartbreaking circumstances may be too great for others and beyond the understanding of the wisest of the world, but Jesus draws near and says, “bring him/her to me.” I am strong enough; I am wise enough; and I see your suffering in ways no one else can. I have wisdom and hope beyond this world. All I ask is that you come to me in faith, trusting that I am able.

He wants our trust, but our faith is not where his power lies

The Father brought the boy to Jesus and said, “‘But if you can do anything, have compassion on us and help us.’ And Jesus said to him, ‘If you can! All things are possible for one who believes.’ Immediately the father of the child cried out and said, ‘I believe; help my unbelief’” (v. 22-24)!

Jesus calls us to come to him in faith, believing he is able, but his ability to heal is not bound up in the strength of our faith, it’s in the unlimited strength and wisdom of Christ himself. Why God chooses to heal some, while allowing others to suffer for a lifetime, is a mystery beyond us. But what we can know is that Jesus’ main purpose in healing the sick, lame, deaf, and blind was not solely to improve their life, it was to draw them to him to see that sickness wasn’t their greatest problem – sin was. And if Jesus had the power to heal physically, he had the power to heal dead hearts and resurrect them to have life in him (Matthew 9:5-6). Even those he healed on earth would still one day die a physical death. They’re greater problem was that they would also die an eternal death apart from his saving grace. As much as Jesus grieved the suffering of those around him and, at times, showed his power through physical healing, he ultimately came to bring spiritual healing, to redeem and restore to life eternal – life in glory that couldn’t be defeated by physical death, but rather, ushered in by it.

Therefore, we can and should plead for healing for our child, ourselves, and loved ones, and believe that God can if he chooses to. But we ultimately need to place our faith in the faithfulness, goodness, and will of our Heavenly Father, not in the answer we seek. If God chooses to not bring the healing we desire (or at least not on our timetable), it’s not because our faith is weaker than the family sitting next to us at church, it’s because he has purposes beyond what we can see in the moment. 

I admit, I’ve been tempted to believe the lie that God hasn’t answered our prayers for our son because of moments that I’ve struggled to believe he would after years and years of withholding those desired answers. 

But that would be putting my faith in the strength of my faith, rather than the strength of my God and the grace and forgiveness he has promised me through Jesus. Instead, I need to come to the Lord in honesty, asking for forgiveness for my lack of faith, and, like the father of this boy in Mark, cry out to God to help my unbelief and give me a heart of faith – whatever the outcome may be.

Over time, I have grown in gratitude for the hope of the gospel, rather than the strength of my faith. Jesus is where my hope is, and Jesus is where my hope is for my son – whether God chooses to heal him or chooses to sustain us in his illness.

Friend, if you have felt this burden, guilt, or shame, lift your eyes to Jesus – the Founder, Sustainer, and Perfecter of your faith. Our hope is not in the healing of our children, or what others think of us and our circumstances, but in Christ alone. He promises to provide all that we need as we humble ourselves and rest in him.  

“My sacrifice, O God, is a broken spirit; a broken and contrite heart you, God, will not despise” (Psalm 51:17). 

Jesus has the power to redeem what the enemy intends for evil

As a crowd gathered, Jesus commanded the spirit to come out of the boy. “And after crying out and convulsing him terribly, it came out, and the boy was like a corpse, so that most of them said, ‘He is dead.’ But Jesus took him by the hand and lifted him up, and he arose” (v. 26-27).

It brings tears to my eyes as I think about what this suffering father must have felt as he finally saw his son freed from the evil spirit that had tormented him for years. And yet, I feel an ache in my gut as I think about my own child, desperately longing for him (and us) to be freed from all that has tormented him since childhood – a prayer God has chosen not to answer as of yet.

But let me assure you, God has not been absent – he’s been good and faithful in so many ways. Not only has he used this deeply painful trial to draw us to himself, he has used this illness to bring our son healing in a greater way. 

After a year of praying over him, night after night, for God to give him a heart of faith if he had the ability to understand it, one night, that prayer was answered. After a long and painful situation, my son fell in a heap on the floor and cried out, “I want to change! I want to change but I can’t change myself!” As I shared the gospel with him again, he wept and begged Jesus to help him and give him a new heart. We prayed together and talked about how Jesus may not take his sickness away, but he could forgive his sin and give him a hope beyond this world. In that moment, a smile and joy filled his face that far outweighed the heartache that often weighed heavily over him. God had redeemed him – not physically or mentally, but spiritually. Although I didn’t know if it was possible, I was reminded that day that God loves to do the impossible and redeem what seems unredeemable. 

If he can heal my child’s heart spiritually in ways that are truly miraculous, despite so much going against him, he can heal him physically and mentally if he chooses to. But if he doesn’t, I can rest in the promise that our son will one day be freed from this illness and made whole in the presence of Christ.

I admit, it’s easy to let hopelessness and despair seep in as the painful effects continue to manifest in our lives. But God is at work – redeeming the pain in ways that I never could have planned or imagined. He is allowing our story to give hope to many others battling hopelessness and heartache and he is continuing to turn our earthly minded hearts heavenward, longing for healing, but mostly, longing to be with Jesus in glory. One day, we will finally be able to see the countless ways that he used this long, lonely, and painful journey (that the enemy has meant for evil) to redeem us to himself and show his glory to those around us. 

Satan has thrown his arrows that have wounded us deeply, but those wounds have driven us to healing in Christ. The enemy has worked hard to convince us that we’re outcasts and all alone, but the loneliness has driven us to know the presence and nearness of Christ in greater ways. Satan has tried to convince us that Jesus isn’t worth trusting if he chooses not to heal our son, but instead, it’s led us to place our hope more firmly in the healing that’s to come. The enemy has worked hard to destroy our marriage and family, but in our weakness, it has only revealed a strength beyond ourselves. Satan has tried to destroy our son in countless ways, but Jesus is stronger and he promises to uphold him, even if he has to physically suffer for the rest of his life. 

Have we walked through this unscathed? No, we bear wounds and scars that we will likely carry with us until we are made whole in the presence of God. Do we feel strong and unwavering at all times? No, we will likely collapse in exhaustion as we army crawl through the gates of heaven. But without a doubt, as I reflect back over the years, I can see that God has not only defended us and given us the strength to endure the wounds of the enemy and the pains of living in a fallen world, God has used every one of them to inflict the enemy instead. 

Friends, if you find yourself on this long, lonely road of unseen and complex special needs, I encourage you to not lose heart. Understanding, support, and help from others may fall short, but Jesus says “Come, bring him/her to me.” You may feel weak in faith and face doubts as you grow weary in the battle, but remember that the strength of your faith lies in the strength of Christ and his promises, not in yourself. You may continue to grieve the circumstances in front of you, but if you are a follower of Jesus, they will not have the last word. He is your light in the darkness, your companion in loneliness, and your comfort in grief. May these circumstances, that often feel hopeless, lead you to a greater hope in the One who sees, knows, and is able to do far more than we could ask or imagine. 

May we continue to fight the good fight of faith, holding fast to the hope we have in Christ as we inch closer to the moment when we will hear, “Well done, good and faithful servant. Enter into my rest.” 

We may feel unseen by the world, but we are seen by the One who matters most. And he will be with us until the end.  

Your companion in on the lonely road,

Sarah

You can read more in Jeff and Sarah Walton’s book, Together Through the Storms – Biblical Encouragements for Your Marriage When Life Hurts (spring 2020) here or on Amazon, or Sarah and Kristen’s book, Hope When It Hurts. To hear more of their story, you can watch the book trailer here- https://youtu.be/CFYFYuS-uwo.

4 thoughts on “Seeing the Unseen – Hope for Families Living With Unseen Special Needs”

  1. Wow…thank you! This eloquently describes the pain and isolation of my family through our own struggles with unseen special needs. Please join me in prayer as I am still praying for the salvation of my “twice exceptional” son, Michael Isaiah. And thank you again for your courageous transparency in sharing your struggles and your heart.

    Liked by 1 person

  2. As I read this, it felt like we were the same person😊. I can so identify with both the extreme challenges and God’s sustaining grace and faithfulness. It is rare that I meet or hear of someone with that commonality. (I would love to talk with you sometime. I am including my email, could you please not make public?) Thank you for sharing!

    Liked by 1 person

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