Currently I am taking a rather fascinating class delving into the topic of God and Suffering, called “The Theology of Suffering.” For my final project, I am taking on a specific topic under that category–Disability.
I’m endeavoring to uncover questions like, “Why does God allow children, and adults, to suffer with disabilities?” “Is disability part of God’s plan, or part of what’s broken and wrong in the world?” “What place do the “disabled” have in “God’s Story”?” “How can care-givers of those with disabilities view this type of suffering in light of what God has done, what he is doing, and what he will do?” And some other questions.
In 2001, when my son started to struggle with a rather severe case of regressive autism, I wondered not just what was going on with him, but why? What was the point? I have to say, it all seemed like a mistake. My faith was shaken; not because I thought I should be able to have the child of my dreams, (this was a sad part of it too,) but because seeing my child suffer so badly made me question what God was really like. After a period of grieving, I had to find out more.
Our son went from meeting all his developmental milestones ahead of time (rolling over, sitting, walking, talking), to not even answering to his own name for days on end, not reacting to pain in any normal way, not speaking to us, and not even calling us “Mommy” and “Daddy” any longer. I didn’t know where to turn, on many levels, and I wondered why God would want to kill me by breaking my heart, day-by-day, as my son sank into frustration, fear, pain, and despair. At times I felt hopeless.
We don’t live near family, and I’d like to say our church, and other Christians, were helpful, but almost no one reached out in any way that was truly or consistently supportive, or meaningful. Experiencing disability and struggle has a way of isolating us, and creating more hopelessness to wade through.
Instead, the opposite can be true. The disabled have much to teach us about hospitality, a characteristic of God, both individually and as a community.
The primary text I’m reading for my research is Vulnerable Communion: A Theology of Disability and Hospitality by Thomas E. Reynolds. What an interesting book!
Here are a few nuggets I’ve gathered:
• The “disabled” are a picture of human weakness and vulnerability, from which we can learn about the human condition, and God himself. They teach us about the goal of Reliance, versus our misguided and typical goal of “independence.”
• These people are at the center of God’s love, and made in God’s image, they display attributes of God. They help us to see the true nature of God–One who made himself weaker and vulnerable, and still is vulnerable to us. (This vulnerability is epitomized in the historical event, and saving action of Christ’s sacrifice on the Cross at Calvary.)
• The “disabled” give us the opportunity to learn, practice, and experience hospitality, and “do for God” (Matt: 25:40 “And the King will say, ‘I tell you the truth, when you did it to one of the least of these my brothers and sisters, you were doing it to me!”)
This is a topic close to my heart. Uncovering more about it has helped me to not just understand my son, and his struggles better, but to understand God, his character, and his intentions.
Now I’m wondering, “Is it time to write a book on this?”
Please leave your thoughts on this topic, or comment in any way.
May God bless your heart,
Lisa
I work with someone who has a son with Down’s Syndrome. When he found out his wife was pregnant, before he knew about the disability, he prayed that God would allow him to be a father that never took anything for granted and celebrated every single milestone in his son’s life. He prayed to love his son and be the best father he could be.
When he found out his child would have Down’s Syndrome, he prayed that others would not be scared of him because of his syndrome, but instead see the love of Christ in a child so vulnerable and open.
Through his son, he has gotten answers to both prayers. Yesterday, at age 6, his son communicated to them for the first time using a flashcard system that they have been working on for months and months. Every step like that causes rejoicing and thanking God for His wisdom and faithfulness.
His son also has the Christ-given ability to change anyone’s demeanor. Whenever my co-worker takes him anywhere, people who seem to be “grumpy” at the grocery store will stop and say, “wow, what a beautiful son you have” and smile. The son responds to this, and usually goes to give them a hug (he is normally INCREDIBLY shy). This has, on multiple occasions, caused the other person to cry tears of joy. The interaction usually ends with the person telling my co-worker’s son, “your father is a GOOD MAN.”
My co-worker is constantly saying how blessed he is and how he has seen the love of Christ through his son every single day. He and his wife are now looking to adopt a child with Down’s Syndrome from Foster Care because “they have so much love to give, and can’t imagine raising a ‘normal’ child now.”
God is working. I don’t know how. I don’t have any answers. But witnessing this relationship has made me revel in the love of Christ.
Alicia,
Reading this was a total blessing. This story, and ones like it, just don’t get enough attention. But these stories create joy and hope. They warm the heart, and I believe give us a glimpse of God. wow.
They also make us question what “normal” is. Thank you SO much.
Lisa–
If you do write a book, you might want to consider reading about Jean Vanier and the L’Abri communities. Very applicable to this, and to “spirituality”–Nouwen lived in a L’Abri community at the end of his life as a caregiver. There’s video at Rostad on Nouwen with video of him with Adam, the man he worked with…
That said, doing a book on this will change your life. It will make you dig into places that have healed, or at least scabbed over, and relive a good bit of pain. On the other hand, as Alicia just did, it will demonstrate tangibly that other parents of disabled children are not alone. That by itself may be enough reason to write it–as a kenotic sacrifice to bless many, many others with the comfort that you have received, and will receive, from God in the process.
Keep us posted!
Laurie
Beautifully written, Lisa. It also made me wish I’d lived closer to you when my twins were being dx’d with Sensory Processing Disorder (for anyone reading, SPD is not on the Autism spectrum but something like 90% of people with Autism also have SPD). I think we all ask “Why?” when confronted with suffering, our own or others’–as well we should. Think about it: to which friends are you closest, the ones who only see you smile or the ones who’ve stuck with you through pain? The latter, of course. If we want to get closer to God, we must not turn down His invitation to suffer with Him. Does anybody else know better what it’s like to have their kids rage at them, fight all efforts to love them and communicate with them, and have everybody else shaking their heads at the child’s “obnoxious” and often injurious behavior? God sure does. When we put our suffering at God’s feet, we see how our own behavior has made Him suffer, we seek to follow Him more closely and break out of our self-fixated trances. Suffering is not necessarily punishment; it is more often an invitation to cooperative closeness with our Creator and Redeemer. Families like yours who confront pain with love rather than fear or whining give us an illustration of exactly *how* we are made in God’s image.
Parents like me, however, who whine…
Erin,
I love this (what you wrote) and couldn’t agree more- “When we put our suffering at God’s feet, we see how our own behavior has made Him suffer, we seek to follow Him more closely and break out of our self-fixated trances. Suffering is not necessarily punishment; it is more often an invitation to cooperative closeness with our Creator and Redeemer.” Thank you.
Oh, you haven’t heard me whine? I’ve done every emotion, a bunch of times, including terribly dark ones. I’ve been all broken apart. Being-in some ways-on the other side of the worst of the grieving process, I think this has been a very rough journey, but a blessed one too. This, of course, doesn’t mean I always do the right thing, or that I don’t get frustrated with the situation or the walls we run into. The surprise is that I learned about God in plenty of ways I wasn’t expecting to learn. Nathan himself taught me some of these things too. Really amazing.
Laurie:
Yes, I have been checking out Nouwen a bit. Thanks for the tips on those references.
Hi I too am struggling with the same issues you are my son is going to be 4 in a couple weeks. We just had his IEP review today and the teacher and speach therapist just kept saying theres no way hes Autistic I couldnt believe waht they were saying It made me mad I have a Phychiatrist diagnosing him and these 2 whom dont even have a clue what they are talking about telling me impossible they are nuts they only have him 4 days a week 2.5 hrs a day its his routine and yes hes going to be funtional at those time its all about the routine. Now if I could get pass this point in our journey I would be able to stop blaming God I havnt been faithful in my walk these pass few months i feel so hopeless What to do where to go I really am lost in this and very emotional as well our county doesnt have a support droup at all
i dguesss what im saying is I know the everyday struggles and I praise you for where you are in your journey Keep us in your prayers I too will be lifting you up in mine.
Thanks for writing, Bonnie.
You are getting your son help early. This will make a HUGE different for him, for the rest of his life. May God bless you.
As a mom, you know your child best. Your child has rights, and you must continue to be strong and advocate for him. Your strength needn’t come from you. It takes the Supernatural kind, Bonnie. :) And 2.5 hours a day is nominal interaction, yes! They don’t have all the data.
Be the squeaky wheel and continue to explain what sort of help he needs, and the goals you want for him. You can dispute their recommendations, and negotiate. I would first, firmly but peaceably, reiterate his needs, (do this in written form and make copies to keep), and note the places where he needs the most assistance. You may even want to video tape him while he’s having his worst moments and “riding the spectrum”… (as I say sometimes) to show his areas of need. So, change up his routine, and have the camcorder ready.
Dear friend, be assured, God suffers with you. Also, God’s own son was subjected to immense suffering. God’s been in your spot as the suffering parent. And as your spiritual Father is not immune to your suffering as his child.
I would pound my fist on the ‘chest of God,’ and cry out “why!?” or “How could you not take care of us?” The Bible is full of laments, and telling God one’s true feelings. These people were not / are NOT punished for this. There is nothing wrong with questioning God, and telling him how you feel. You can do it, knowing his love for you won’t change, and you can also ask him for strength, and clarity.
It’s probably the case that the why question can’t be or won’t be answered. Maybe our place and perspective as finite creatures is the reason for that. And now I wonder if I was asking the wrong sort of question. Regardless of the whys, God does have a response to our suffering. He goes through it with us; and he became flesh to do that in history as well.
Maybe the worst part of our family trails with autism (for me) was how I responded, at first, by thinking God was Someone that I couldn’t trust. That is a spiritual issue, and it can be profound. Bonnie, I truly believe this is the key to going through suffering, and a determiner of how it will shape us: That is -Will we consider God Someone we will trust? Or will we try to make it alone? The first way leads to live, and the second way leads to a slow death.
The book “Can God be Trusted” by John Stackhouse was of great help recently.
As you continue to love and care for your boy, keep this in mind: I was right where you were. Intervention, therapy (the official kind and working with our children at home) makes a huge difference!! In a few years you will be surprised how far he has come. Set the bar high for him, and persist, and pour your love into him.
May the Lord’s face shine upon and give you peace, may his love and presence surround you, and dwell with you.
-Lisa
It’s L’Arche, just for the record. Lisa – YES on the book. I think the thing to realize is that your son won’t be “cured” or “normal”in Heaven. To say that makes him less the image of God (literally “ungodly”) as he is. Instead, I believe, his gifts will be freed of their negative aspects (as will all our gifts) and our perceptions will be redeemed so that we can see the particular truth about God that he’s been showing us all along. And why not start trying to see it now?
By the way, a wonderful narrative exploration of this topic is Kim Edwards’ “The Memory Keeper’s Daughter.”
Yes, L’Abri (French for “the Shelter”) is an evangelical Christian organization founded by Francis Schaeffer.
The name “L’Arche” is French for “The Ark”, as in Noah’s Ark. It’s an international network of faith-based communities centered on people who have developmental disabilities. L’Arche communities typically include homes and day programs.
Thank you Doug about the heaven part-what a salient point. I was just reading this very thing about heaven, in a related article about Nancy Eiesland.
I hope in heaven, I am (and we are all, more like my son), actually. If that is the case, there will be less in the way as we commune with the divine, there will be more trust, and unfettered authentic love toward God and others.
I thought L’Abri was the place in California where all the sabertooth tigers died.
uhmmmm…..
I thought L’Abri was a place where people can go to find and read books, and also borrow them for a few weeks.
It is hard to say what we will be like in heaven. I have seen disability from both sides. I was considered permanently disabled before God chose to heal me and I have a son with PDD-NOS (autism spectrum, severe language issues).
The reality is that we all become disabled if we live long enough and yet we know that some of these things will be healed in our resurrected bodies. I personally would love to have a full conversation with my son in heaven.
I think the issue is that people are still defining others by their disability or ability. What difference does it make if some does or does not have Down’s Syndrome or autism or traumatic brain injury or whatever. That does not define who they are. It only defines part of how they can express who they are. God sees beyond the outer and superficial. Disabilities fall into that catagory, so do abilities.
God allows disability for the same reason He allows everything else – it leads to His ultimate will being accomplished. Sometimes that is people learning compasion. Sometimes that is people learning the fallen state of the world. Sometimes that is the ministry from the disabled. Sometimes it is totally a mystery. But we must accept that it is completely within God’s control. It is not an accident or a mistake. It has a purpose.
This is the crux of faith.
Well put, Chuck. Thank you very much.
I think you are onto what more parents of autistic children come to realize eventually. I wrote a book if you would like to use it as a guided inspiration for your own. It is on amazon.com “Lessons From Joshua: God Whispers Through Autism.” by Barbra Goggins. Copywrite 2010. More parents need to hear what we have to say.
Thank you.
Well said, everybody! I am amazed by everyone’s faith. I am exploring the boundaries of my own faith by learning from you all and finding out what God’s Word really says about this topic. I don’t have children, yet…we’re among the last of our friends who don’t, so the hope and expectation is that it comes soon! I don’t really know anyone personally who has a disability, though several people I know have been sick with physical and mental illnesses. It wasn’t until a few months ago after beginning Kay Arthur’s book, “Lord, I want to know You” that I pondered this subject beyond the ocassional prayer in fear for my future children. For the first time, I was totally convicted that nothing–NOTHING–is outside of God’s ultimate control. As I shared my new revelations with my closest friends, I was met with stares and silence. One friend, a leader/elder in our church opposed me quite passionately with many convincing arguments and theologies…I held my own, but I have to believe I lost some respect from my dearest friends that day.
But I stand firm. I also believe in God’s healing power and have witnessed his healing and deliverance power. Both are true. As my beloved pastor says, “God is purposeful in both everything He causes and everything He allows.” I’d like to say I always believed that. I just believe it more, now. There is a scripture from the Old Testament when God’s response to Moses is something like, “Who made men’s mouth? Who created them deaf, mute, blind or lame?” We all know the answer to that. We also know every human has a right to proclaim that we are “fearfully and wonderfully made” in God’s very own “image.” And, Jesus responded to the pharisees about the blind man that was healed, that it was neither because of the man’s own sin, his parent’s sin or anyone else’s that he was born blind. It was for God’s own glory that the man was created. And, Jesus healed him! He didn’t always heal everyone, though.
Too often, we go through our lives not embracing God’s purpose and plan for our lives, when it involves hardship and suffering. We want all the good stuff, but would rather do without the “bad.” But after all the suffering he had gone through–from being beaten and sold into slavery by his own brothers, to falsely accused and imprisoned for a decade–wasn’t it Joseph who boldy proclaimed that what his brothers meant for evil, God meant for good so that many could be saved. It is truly inspiring.
You are all truly inspiring. My prayer used to be in fear of what God may allow in my life…especially with regard to a child born with some type of disability. Now, I want to embrace more and more, a trust and confidence in Him that He knows what He is doing. It’s no joke and it’s no mistake, the life He’s given us as are all the things that happen within. We will have the grace we need to abundantly live, when we stay near Him.
Thank you so much for sharing your lives and your wisdom so that I, too, can benefit.
Thank you for replying, Brenda.
You seem like a person who would give a child a good home. God will provide.
Maybe consider a Burmese family adoption. There are so many. since 2 years ago, All the Burmese are granted U.S. citizenship. (Based on political asylum) They only need money to make it to this country. Those poor people have lived without a country-in a squalid camp-for 25 years.
http://www.openingdoorsinc.com/Adopt%20a%20family.htm
burmeserefugee.org
Myself, my wife and one of our two daughters are disabled with emotional and mood disorders. It is a great encouragement to read of all your struggles, your love, your faith, your courage, your desire for, and sharing of, knowledge, information and wisdom on the particular disabilities you all encounter, your of openness in sharing your lives in this community of the disabled. I was recently asked. What is the Gift of Bipolar disorder? In other words what has this disability given me. What a wonderful question to be asked. Besides a a deeper love for my family, and myself, and more understanding of the reality of some disablement in every person, I have the gift of hope-in-the-moment-to-moment -present. Thank you all
It is an honor to read this. Thank you for sharing that, and may God bless you richly.
Magnificent site. Plenty of useful info here. I am sending it to a few friends ans also sharing in delicious. And naturally, thanks for your effort!