Eight years ago, our middle daughter, Lucy, was diagnosed with Autism Spectrum Disorder, ASD. Lucy is profoundly affected by Autism. Her sensory processing and cognitive function is severely delayed. It wasn’t until a little over a year ago that we finished toilet training, and we still help with most of her daily care tasks. We—usually my wife Megan—brush her teeth each night. And unless it’s Thursday, when we eat spaghetti, Lucy is not all that interested in food. So, we have to spoon feed or prod her to take another bite every 30 seconds or so.
These sorts of parenting tasks are normal for a toddler, but Lucy is 11 years old.
I’ve never been able to have a sit-down conversation with my daughter about her emotions. Lucy’s brain just doesn’t work that way. On the cold February day that Lucy was diagnosed, the psychologist told us the verdict, and then, with a deadpan expression on her face, she told us that 80 percent of couples who have a child with special needs get divorced.
I’m happy to report that the veracity of that specific statistic has been questioned in recent years, but studies show that the divorce rates among parents of children with disabilities are higher, and the risk of divorce lasts longer into adulthood than for parents whose children don’t. In that moment, we took the doctor’s words at face value. She essentially said to us: “Get help now!” Megan broke down crying immediately. What she had suspected for quite a while had been confirmed, and now she was grieving. Our life had changed. We’ll likely be caretakers for the rest of our lives.
While grief is a natural part of any special needs parent’s journey, it’s experienced differently by parents affected by Autism because of the range of possible outcomes. Many children with Autism grow up to be well-functioning adults. Most of these kids experience the social and communication struggles of Autism without intellectual delays. However, just over half, 56 percent of children with Autism have an intellectual disability as well. Our daughter fits within this category, but when she was three years old, we couldn’t be sure. So, we wrestled with conflicting possibilities for her future—possibilities that were and are outside of our control. Leading special needs ministry author Amy Fenton Lee writes about this predicament:
Should a mother grieve the life she envisioned for her child? Or should she buckle herself in for a bumpy ride. . . remaining hopeful and doing everything humanly possible to help her child reach their full potential? Sadly, the pressure is great to keep silent and process her emotions alone. Conversely, if she grieves publicly or openly conveys her concerns she may shape others’ view of her child. In fear of creating a self-fulfilling prophesy for her child’s future, a mother may remain tight lipped avoiding conversations revealing her daily realities.
As you can probably imagine, the way most parents of young children with Autism respond can vary from day to day. They experience conflicting emotions of grief and hope. Some days are filled with more sadness; others have more determination and hope. It’s certainly been this way for us.
A privileged man and his suffering wife
Recently, I’ve been processing the way our family grieved while studying the story of Elkanah and Hannah in 1 Samuel 1:1-20. As you jump into this passage, you see right away that Elkanah had a lot going for him. Elkanah had a legacy; his family heritage could be traced back four generations (v. 1). Elkanah was ambitious and wealthy; he was a man with enough money to pay two dowries and then support two wives and their kids (v. 2). Elkanah was also a religious man; he committed year after year to bring his sacrifices to the Lord’s tabernacle in Shiloh (v. 3).
The passage tells us that Hophni and Phinehas were the priests in charge of running worship services there. One chapter later, we discover that these guys were regular scoundrels (1 Sam. 2:12). When the people of Israel brought their sacrifices to Shiloh, they would steal some of the best cuts of meat for themselves instead of offering them to God.
By contrast—and I believe the author of 1 Samuel wants us to notice this—Elkanah carefully provided good food for his wives and kids. He was a caring provider and a family man. In his own day, he was the kind of man you’d want to emulate. But Elkanah’s wealth, his religious devotion, and his diligent care for his family couldn’t insulate him from suffering.
God brought suffering into Elkanah’s life through his second wife, Hannah. Verse two introduces us to her suffering in a matter-of-fact way: “[Elkanah] had two wives; one was called Hannah and other Peninnah. Peninnah had children, but Hannah had none.” Hannah was infertile. It wasn’t just that she didn’t have children. Hannah couldn’t have children. In verse five, the text says, “the LORD had closed her womb.”
Slow down for a moment and feel the significance of this. Hannah experienced the pain of grief. I’m certain Hannah expected to have children. She married a wealthy, strong, committed husband. She wanted to start a family. But kids never came, and it was painful.
In addition, I’m certain that Hannah also experienced awkwardness. When a couple desires to have kids but can’t, there are a lot of awkward moments. At Thanksgiving, unaware Aunt Edna might ask, “So, honey, when are you going to start a family?” And it’s hard to be around an overly fertile Myrtle at the women’s Bible study. I’ve known some couples who mark their calendar for the next Child Dedication Sunday as a day to sleep in. It’s just too hard to be there.
Hannah felt all of this, but I believe she felt fear. You see, in that culture a woman who didn’t have a son, didn’t have a future. Her welfare as she got older was dependent on her children. A son for her would be like Social Security and Medicare. If Elkanah died an untimely death, she couldn’t count on her sister wife to take care of her. She needed a boy who would grow to be a man and a provider. She needed a son to be her defender at the gate (Ps. 127:5). But she had none.
Elkanah’s pity versus true empathy
Hannah was hurting, and Elkanah could see it. What would he do? Now, it’s important to see—if you haven’t figured this out already—that Hannah is the hero of this story. The way she grieves, and the way she expresses faith in the midst of her grief is nothing short of amazing. She’s an example of how to practice lament.
One of the bad habits we learn in Sunday School is the tendency to identify with the heroes in the Bible’s stories and see them as our primary examples. But if I’m honest with myself, Hannah isn’t the person in this story with whom I should identify. I’m not really much like Hannah. I’m much more like Elkanah. And Elkanah doesn’t respond well to Hannah’s suffering.
Notice what Elkanah does. Verse five says, “But to Hannah he gave a double portion because he loved her.” It’s tempting to think Elkanah is being really sweet here. He genuinely loved her. As far as we can tell from the text, he didn’t blame her for her suffering, and that’s good. But then he begins giving her a double helping of food, and it’s hard to see how this helps: “Oh honey, I’m so sorry that you’re sad. Here’s another helping of mashed potatoes.” It’s sad. In that moment, Elkanah did just what most well-to-do, religious husbands would do. He plays God. He’s throws all of his resources at her problem, hoping against hope that he can write a better story for her. But his pity doesn’t help Hannah feel better.
To add insult to injury, what Elkanah does is a direct violation of God’s law (Deut. 21:15-17). Because Peninnah had born the firstborn son, the oldest who would receive the inheritance was the only one at the table who should have been given a double portion. Just as Rebekah favored her younger son Jacob (Gen. 25:28), and Jacob in turn favored his son Joseph (Gen. 37), so Elkanah disobeyed God and made Hannah his favorite. And, of course, the favoritism backfired.
Peninnah gets jealous, and she becomes vindictive. Verse seven tells us that she goads and provokes Hannah. You can imagine the things she said: “I don’t even know how I keep all of you children fed; there’s just so many of you!” This sort of prodding went on and on. Not just day after day, but month after month and year after year. Hannah’s emotional pain became so intense—especially at the annual feast time—that she would refuse to eat. So, Elkanah responds again in verse eight – and here is where it’s so clear in the text that he just doesn’t get it: “Hannah, why are you weeping? Why don’t you eat? Why are you downhearted? Don’t I mean more to you than seven sons?” Elkanah is essentially saying: “Baby, you’ve got me. Aren’t I enough for you?” Instead of grieving with Hannah, Elkanah makes her pain about him.
This is so convicting to me, because I’ve done and said the same kinds of things. After Lucy’s diagnosis, I immediately got to work—setting up therapy sessions, investigating government programs to help us pay for treatment. Those were good and necessary things, but what I didn’t do was stop and feel. In fact, I’ve tried to handle Megan’s pain with my work ethic or exasperation more times than I can count. And when I’m making Megan’s pain about me, she tells me that it just makes her feel distant—like I obviously don’t understand; like she hasn’t been heard.
One of my regular prayers for myself and the church—both my own church and the larger church—is that we’ll grow in empathy (Rom. 12:15). This is an especially felt need for families with disabilities. Some disability ministry leaders have estimated that 80 percent of people with disabilities are unchurched. And according to a 2004 Lausanne Committee paper, only five to 10 percent of the world’s disabled population has been effectively reached with the gospel, making the disability community one of the largest unreached—some say under-reached—or hidden people groups in the world. In my experience, it’s fairly regular for families to drop out of church after a diagnosis.
If you know someone who is currently going through a diagnosis process, one of the best things you can do for them is to be there, to listen without sharing opinions or ideas, to ask questions, and to allow yourself to feel the pain. Amy Fenton Lee suggests asking questions like these:
While I can’t know exactly how you feel, I do know the journey to a diagnosis is usually somewhat labored. Where are you emotionally at this point in your family’s journey?
Do you feel any relief having some new information to work with, or does this knowledge feel overwhelming?
In your experience or observation, how is parenting a child with this disability different than parenting a child without this disability? How is it similar?
How can I pray for you today? How can I pray for your child today?
Hannah’s profound faith
By the time we get to verse nine of 1 Samuel 1, Hannah is at the end of her rope. As soon as the festival dinner was over, she left the table and headed to the tabernacle to pray. She “came to church,” and she broke down in tears. Hannah’s instincts were good. When we’re hurting, God wants us to come to him. But, sadly, Hannah was let down again. Hannah was pouring out her whole self, body and soul, in sobs to the Lord. Then, old Eli, the priest, who was supposed to represent God’s compassion to his people, just judged her. He saw her disheveled and in tears, mouthing the words to her prayer, and he assumed she was drunk. He outright rebukes her, “Put away your wine” (v. 14).
Maybe that’s you. Maybe you’ve been hurting from a special needs diagnosis, and you followed your good instincts. You went to a small group or even your pastors, but it was just so clear they didn’t get it. They couldn’t feel your pain. Here’s the hard truth. Sometimes spouses will let us down. Sometimes pastors will let us down. But after we exhaust every option, God is still there, and he knows us in our weakness.
The amazing thing about Hannah’s faith to me is that she sees this truth, and she doesn’t demand that God make everything right in her life. I pray the kind of prayers that will fix my problems—“Heal my child. Get Lucy into that new school. Prevent our favorite therapist from moving away.” But Hannah is willing to give up the very thing that will help her circumstances. She prays (v. 10), “LORD Almighty, if you will only look on your servant’s misery and remember me, and not forget your servant but give her a son, then I will give him to the LORD for all the days of his life.” I read this and I think: “Hannah, what are you doing?” She’s got one shot at a son who can take care of her when she’s old, and she’s going to send him away into the ministry. Sister, that’s not going to help your financial situation!
But this is an amazing prayer because it shows us that being heard and known by God is more important for Hannah than changing her present experience. Psalm 63:3 says, “Your love, O Lord, is better than life. So, my lips will praise you.” Hannah is confident enough in God to let him write her story. Hannah is confident to seek first God’s kingdom and let him take care of the rest. And God shows up right on time. He reaches down into the ashes of her mourning and he brings resurrection! Look at verses 19-20:
Early the next morning they arose and worshiped before the Lord and then went back to their home at Ramah. Elkanah made love to his wife Hannah, and the Lord remembered her. So in the course of time Hannah became pregnant and gave birth to a son. She named him Samuel (1 Sam. 1:17-20a).
I love those words: “The Lord remembered her.” God answered Hannah’s request, and he gave her a baby. Then, Hannah named the baby Samuel. It’s a play on words. Samuel sounds like the Hebrew phrase “heard by God.” This baby was a reminder for her that even when no one else was listening, God heard her. While I want to grow in empathy, and I pray that the church will grow in empathy, that’s not where our hope for families with disabilities rests. Our hope is in the God who hears. God won’t always give us what we ask for, but he knows our pain. He hears us. And he delights in reaching down into our brokenness to make something beautiful out of our weakness—just as he did with Hannah.