Help and hope during a disability diagnosis: The story of Hannah

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.

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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.

This post first appeared at ERLC.com

Join Me at the Sojourn Network Leaders' Summit

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Partnership is one of the defining characteristics of the Christian life. Our Lord knew we couldn’t do it alone. He created, called, and commissioned us to partner together for the sake of the gospel and for his glory. It’s not good for us to be alone. Our churches flourish through healthy partnerships. Because we're all better together.

So whether you're a church planter, a pastor, a ministry leader, a pastor's wife, or a woman leading in ministry, the upcoming Sojourn Network Leadership Summit is for you! The event will take place in Louisville, KY, on October 23-25, 2017.  I'm excited about being there and learning together with you about how churches flourish through collaboration.

The conference features keynote speakers including J. D. Greear and Dave Harvey as well as a number of exciting breakout sessions. In particular, I'm really excited about a Tuesday afternoon session entitled "Parenting a Special Needs Child" led by Pastor Orlando Cabrera from Summit Church in Naples, FL and the tuesday evening drop in group on children's and youth ministry.

Check out the conference registration page at this link. And if you're going to be there, I'd love to connect with you. Leave a note in the comments below, and we'll make time to get together.

Teaching Our Kids About Justice and Mercy

This post originally appeared at ERLC.com

Americans value equality and fairness. Our constitution states it clearly: "All men are created equal, endowed by their Creator with certain unalienable Rights." Fairness is a self-evident principle. We know every person should be subject to the same rules, without respect to ethnic heritage, class, or creed. It's engraved at the front of the highest court in our land: "Equal justice under the law." That's why civil rights organizations have fought so diligently for equal opportunity employment and to end unequal sentencing. For fairness to reign, we should all be playing by the same rules. 

There’s more to justice than fairness

Speak up for those who cannot speak for themselves, for the rights of all who are destitute.
— Proverbs 31:8

So, when American Christians think about justice, we immediately think fairness. It shouldn't be a surprise. It's our national heritage, but we're only half right. Biblically speaking, justice does involve legal and social equality. As early as the Exodus, God gives his people instruction about honest weights and scales (Lev. 19:36; Prov. 11:1). He commits to punish those who defraud others with unfair business practices (Hosea 12:7-8, 14; Micah 6:11)  But the Bible goes one step further.

The Scriptures teach us true justice also requires a special concern for the poor, oppressed, and vulnerable. Proverbs 31:8 says, "Speak up for those who cannot speak for themselves, for the rights of all who are destitute." If you've been afforded more but you don't share with those in need, the Bible makes clear this is unjust (Zech. 7:9-10). It's not just greedy; it's an injustice. You see, true justice requires more than surface level fairness. It requires compassion and generosity toward the oppressed and poor. True justice involves doing merciful, leveling work where inequity has occurred. 

Learning about true justice from Lucy

Our family is learning that doing what is good and right isn’t always the same as making things fair.

Raising a child with special needs alongside two typically developing children has given us a unique opportunity to learn about justice. We have three daughters, and they are all gifts. Two of our girls, Rachael and Elisabeth, are over-achievers (if you will allow me to be a proud dad). They make good grades and enjoy music and sports. Rachael has strong relational skills and leadership abilities. Our youngest, Elisabeth, longs to create and make the world more beautiful. 

Our middle daughter, Lucy, is different. Don't get me wrong. Lucy is wonderful, but she's also profoundly impacted by Autism. She has a poverty of cognitive and relational ability, and she's really needy in many ways. At the time of writing, she's ten years-old and not fully potty trained. It takes extra effort to help her transition from one activity to the next. Her unique needs often require we give her more attention and care. When we're on vacation, we have to take into account how much she can handle. Times at the beach are cut short by sensory overload. She needs longer breaks at amusement parks. Her special diet controls the kinds of restaurants we choose to patron.

Lucy's sisters love her, and they show great compassion, but I'd be lying if I told you the extra attention and accommodation Lucy gets is easy for them. Complaints about the inequality of their situation can become a refrain: "That's not fair. Why is what we can do always about Lucy? Why does she get all the attention?" Often I hear my wife say, "I never promised everything will be fair. But I will choose what is best for our family, and I will take into account what you need and what Lucy needs." Moments like those highlight one of the great gifts God has given our family in Lucy. Through her presence in our life, our family is learning that doing what is good and right doesn't always mean we make everything even.

In The Life We Never Expected, Andrew Wilson writes, "By being autistic, our kids draw mercy from others. It increases the currency of God’s qualities in general circulation." I love this quote, because it gives me a vision for how Lucy can bless our home. But I'm also aware compassion rarely comes naturally. It's a skill that must be learned. Not every family will be graced with a child with special needs, but we all have a responsibility to train our children in empathy, holistic justice, and mercy. Here are three ways you can be intentional about this with your family:

1. Consider your environment.

Parents want to give their kids every advantage. We're careful to choose the "best" neighborhood and schools. We seek out athletic and academic programs to help prepare our children for success and college scholarships. The trouble is this can, intentionally or unintentionally, divide our children from other kids who are different from them. It can reinforce selfishness, because it's nearly impossible to develop empathy toward someone who is different from us without first spending time with them.

Simply living in diverse surroundings is not enough to teach children empathy.

I'm convinced there are skills my typically-developing daughters wouldn't learn growing up in a suburban neighborhood unless Lucy was their sister. But you don't need a family member with special needs to expose your children to diversity. Would you consider joining a more ethnically or socioeconomically diverse playgroup? How about a school or youth group that doesn't have the nicest facilities but challenges its students to serve their community?

2. Teach your kids to move toward brokenness.

When Lucy throws a tantrum, the tendency for our other girls is to be embarrassed and avoid her. I want to teach them to be respectful, patient, and not complain when their sister is particularly needy, but I want more for them than that. I also want to teach them the skill of moving toward her rather than away from her. I want to teach them to look for what's wrong. I want to teach them to think with curiosity, "I wonder what has caused her to get upset. How can I help her? How can I serve my sister right now?"

I've discovered that for my children, living with an autistic sister on it's own isn't enough to engender this kind of love and patience. Megan and I have to model compassion for our daughters, and we have to explain to them how they should love and care. It's not only true in our home. Simply living in diverse surroundings is not enough to teach empathy. Be intentional about explaining it to your kids. Take time to explain the importance of moving toward brokenness and not away from it.

3. Teach them to cling to Jesus.

The just life God requires from us is humble and shows merciful compassion to others (Micah 6:8). But anyone who tries to live such a life will quickly see it's too big for them. Our only hope is found in clinging in prayerful trust to the one who has lived this life in our stead. So, finally, we must remind our kids how Jesus has shown mercy and compassion to us. Jesus valued our redemption more than he valued his own experience of fairness. As Philippians 2:6-8 reminds us, he, "being in very nature God, did not consider equality with God something to be used to his own advantage; rather he made himself nothing." Jesus moved toward our brokenness. He's the great leveler (2 Cor. 8:9): he was rich and privileged, but he became poor for us so we might experience the wealth of being made just in him.

If we’re going to share Jesus with the next generation, teaching them to do justice and love mercy is essential. If your family is weak in one of these three areas, press in. I’m confident your kids will grow to care more and more for those who are hurting and distressed, because such works testify to true faith (James 1:27). By faith, we can grow in compassion and empathy, because that’s the way Christ first loved us (1 John 4:19).

Family Friday Links 2016 Year in Review

This is our last set of Family Friday Links for 2016. Lets look back at 16 of our best links from the year. These are not in any particular order. Hope that some of these links maybe ones you missed or a reminder of a good link that you forgot about. 

  1. Ann Voskamp wrote a very strong blog to her sons about how to honor, care for and value women. A quote from the blog says, "When Christ stepped out of that black tomb, he still didn’t choose to first manifest Himself to prestigious officials, religious leaders, the Twelve, but instead He revealed Himself first to the women, He entrusted the veracity of His resurrection to the testimony of the women, He offered the privilege of proclaiming Christ as the risen Savior to the women, though no court at the time would accept their testimony. That’s how God loves His daughters with His regard."
     
  2. Danny Franks wrote a post on volunteers and the reason they don't continue. He asking (and answering) the question, "Why did their eagerness in orientation and their wonder in the first week of service not translate to a return trip and a lifetime of volunteering?" Leaders and pastors, learn from this.
     
  3. Our own Jared Kennedy had a post on the ERLC on kids and anxiety. He says, "Our goal shouldn’t be to change how they feel but simply recognize our kids’ emotions and affirm our love." While focusing on keeping our kids safe, we miss out on ministering to their hearts. As parents we need to focus on our kid's hearts, in order to see them grow and mature, not just their behavior.
     
  4. The Acts 29 Church Planting Network has a post from a church plant in Paris about the kids and church. It reminds us, "We must be intentional in our inclusion of Jesus’ youngest disciples." This is a great reminder for parents and pastors.
     
  5. Craig Jultila wrote a post on what to do when we feel like giving up. He says, "Honestly, there have been times when I was trying to crawl my way through the tunnel of difficulty hoping, praying, believing for a light at the end! It’s in those moments I must ask myself the following four questions to just keep going." Because we all, regardless of position or status, feel this way this post is helpful.
     
  6. Jason Allen had a post on tips for leading your kids to Christ. He wrote, "I feel the weight—and glory—of this stewardship daily and find immeasurable fulfillment and joy as I see my children taking steps toward Christ. I am sure many Christian parents feel the same way I do—awestruck by the opportunity and responsibility that is ours." His tips are helpful for both parents and those that work with kids.
     
  7. Jen Wilkin posted on the Gospel Coalition that talks about the value of children and the fact that  kids are our neighbors. Wilkin's writes, Because if children are people, then they are also our neighbors. This means that every scriptural imperative that speaks to loving our neighbor as we love ourselves suddenly comes to bear on how we parent. Every command to love preferentially at great cost, with great effort, and with godly wisdom becomes not just a command to love the people in my workplace or the people in my church or the people at my hair salon or the people on my street or the people in the homeless shelter. It becomes a command to love the people under my own roof, no matter how small. If children are people, then our own children are our very closest neighbors. No other neighbor lives closer or needs our self-sacrificing love more."
     
  8. I came across this blog post entitled There Is Grace in Disability by Kara Dedert at the site Special Needs Parenting. Kara says ,"God’s grace has sustained us in deep lament. God’s grace has kept us from walking away in deep struggles of faith. God’s grace allows Calvin to be filled with joy and happiness in his disability. God’s grace has shown us more of His love for us as we care for Calvin. God’s grace has surprised us with unexpected joy in difficult places. God’s grace has made eternal reality more clear and our hope in Christ more urgent."
     
  9. Here is an article from the Gospel Coalition by 18 year-old Jaquelle Crowe. Her article is entitled 5 Reasons Why Teenagers Need Theology. As a young woman, she gives good insight to parents and youth workers on how to help their students to love theology. Jaquelle writes:

    "I’m 18. I’ve studied and been taught theology all my life. It’s given me many things: a richer relationship with God; a stronger and more submissive relationship with my parents; a more discerning relationship with my friends; a more edifying approach to social media; a zealous desire to do my best in school; a biblical worldview; a bigger vision for my future; and a greater passion to follow God no matter what." 
     
  10. With the racial unrest that exists in our country, Thom Rainer had a guest post by Joshua Staub on how to help our kids process these issues. Joshua wrote, "When we shield our children from injustice, we become complicit in the tension." He goes on to list 3 things parents need to do to help our kids understand and grow. Parents, read this and help your kids.
     
  11. Our friend, Sam Luce, wrote a post on the problems with making kids say sorry. He writes, " The problem with saying sorry is sorry can be used to gloss over sin. Repentance digs deeper to the root of sin." Parents, this is a good post for you especially as your kids get older.
     
  12. Jen Thorn wrote a post on the dangers of a "parent-centered" home. She writes, "We hear a lot of talk about a home not being child-centered. But all too often, without us realizing it, our homes become-parent centered." Parents, this is a good read for all of us to consider.
     
  13. John Hailes had a post entitled "Raising & Releasing the Next Generation." He writes, "When we include teenagers in our ministry its messy. Sometimes putting them on the stage is even cringe worthy. However, its so unbelievably necessary for our ministries and the future of kidmin…" He goes on to list several reasons this is important. Pastors and leaders this is worth considering.
     
  14. NavPress has a post up on teaching kids about sex. It reads, "As Christian parents we can do much more than merely pass on information about reproduction. We have the opportunity of shaping the sexual character of our children. " Parents, this is a helpful list with helpful resources.
     
  15. Jonathan Parnell wrote a post on what parenting means. He writes, "When we begin to see our parenting through the lens of spiritual warfare, it reconfigures our work ..." He goes on to list the 5 ways in which this happens. Parenting is a struggle, just not in the way think; it's a spiritual struggle.
     
  16. Paul Tripp had a post on the Verge site about kids and missions. He is answering the question, "How early in my child’s life do I disciple this child for ministry and mission and what does that look like?" He answers it this way, "Everything you have is a potential means of ministry…The ideas are endless.” Parents, make mission and discipleship a part of everyday life. Pastors, train parents to do so.

What were your favorite articles from 2016? Please share in the comments section.