A friend reached out to me recently and asked for help in how best to encourage their children to ‘adopt a heart of love and sacrifice’ for their younger brother with Down syndrome. We all get fielded lots of questions and ‘what do you think’s in our life, and despite how much the query may feel like it’s in our wheelhouse or our sweet spot, these questions ought to foster both joy and sobriety.
Joy in that we have people in our lives who are willing to ask us questions. It presumes that there is a depth of relationship and reciprocity. They are saying, “I want you to speak into my life and help me do this life thing better. Please help, I’m listening.” What a gift and joy.
And yet there is also a great deal of sobriety that ought follow. “Who am I to speak words of direction or correction into the life of another soul?” We all see through a glass dimly; we all know how fragile and fickle our own frame is. Each life is unique, each circumstance is particular, each perspective is limited.
And so with any counsel we provide, we must ask the true counselor, the Wonderful Counselor, for help. We ought not cringe in fear, stick our head or talents in the sand, but rather lean into Jesus, ask for help, and seek to reach out a firm and gracious hand, knowing that not only do others need us, but we need them. In our service to others, we often find manifold mercies in return. As we aim to cast light and life onto the paths of others, we find our own path enlivened and enriched.
So back to my friend’s query: how best to encourage siblings who have a brother or sister with Down syndrome or some other disability. I will offer three insights: Gospel Gratitude, Patient Endurance, and Genuine Time.
Gospel Gratitude
We are all prone to grumble and complain. A child with a brother or sister with special needs struggles, like Mom and Dad, with complaining, blaming, ‘Why me God?’, “It’s not fair!’ I have three kids and my youngest has Down syndrome. My middle son doesn’t have a typical brother to play football with. They will throw the ball in the backyard but my middle son is more a coach than a fellow teammate, as he patiently teaches and models the very basics of how to catch and throw the ball. When they wrestle, it’s a lot of fun, but my middle son knows he can’t get too wild or crazy or his younger brother could really get hurt. “Why God? Why did I get stuck with a brother who can’t do all the other fun things that my other friend’s brothers can do?”
The remedy for this is Gospel Gratitude. God does not treat us as our sins deserve. The child needs to be reminded, by example and by instruction, that life is a gift. We are not promised healthy bodies or ‘typical’ siblings. And in reality, none of us are typical. We are all unable, all in need, all broken. “There is no one righteous, no, not one” (Romans 3:10). When we model for our kids a heart of gratitude because of the Gospel, we remind them that God is gracious and doesn’t treat us as our sins deserve. God sends the rain on the just and the unjust, and Gospel Gratitude helps our kids navigate the disappointments and challenges of having a sibling with a disability. We are all doing better than we deserve.
The Gospel also teaches us that God works through weakness. The Gospel is a theology of weakness and welcome. God welcomes the weak, the poor, the crippled, and he welcomes them into the Kingdom. Jesus’s public ministry was so often to those on the fringes of society, those deemed undesirable, unimportant. But God tells us the kingdom belongs to these. So if we are modeling and training our kids to follow Christ, we must remind them how God works through weakness. Jesus secured our salvation through being despised, rejected, broken, killed. In God’s economy, suffering is redemptive. Help your kids see how reality is ‘the beautiful broken.’ None of us have it all put together: only Jesus. And he willingly gave it up, emptied himself, to bring us to God. Gospel Gratitude is a foundational attitude that we as parents need and that by God’s grace, we need to instill in the hearts of our kiddos.
Patient Endurance
With Gospel Gratitude flows Patient Endurance. If the Gospel is a theology of weakness and welcome and God works through our suffering and uses our weaknesses and the weaknesses of those around us, like our siblings with a disability, to grow in our hearts humble gratitude, then it will take time, lots of time. And that time will involve lots of things that we probably wouldn’t naturally prefer. In a culture of fast food, quick fixes, and instant gratification, we will need to teach our children the art of Patient Endurance.
We all desire things to go smoothly, no hiccups, no curve balls. But life seems to throw us lots of curveballs. And we need to teach our kiddos that “God is the blessed controller of all things” (1 Timothy 6:15). “No plan of [His] can be thwarted” (Job 42:2). And if we are desiring for our children to be oaks of righteousness and not noxious weeds that spring up over night, it will take lots of time, lots of Patient Endurance. As the funny old proverbs says, “A mighty oak was once a young acorn that stood its ground.”
Genuine Time
One thing that all children need is time with Mom and Dad. And one thing that disability does is suck time. Things take longer, there are more appointments, there are more accommodations and modifications. And siblings, by default, will feel the suck of this time, perhaps more than Dad and Mom. When Mom and Dad had kids, they signed up for, “My Life For Yours.” But for siblings, they didn’t really have much say in another kiddo being added to the family. And so when a child with a disability enters the family, that child will naturally suck more time. And I use that word suck with intent. For the siblings, that sucking of time, can really suck. It’s no fun. “Why do Mom and Dad have to spend so much time with him or her and all their special this and that?” “That’s not fair!”
In those moments, as much as we need to model and teach our children Gospel Gratitude, we also need to provide them with Genuine Time. When we say Yes to one child, it can often feel like we are saying No to another child. And so if we are not pouring deep affection and care into all our children, they will feel the drain, the suck, the tank hitting empty. And so Mom and Dad, we need to give them Genuine Time.
I use that word genuine because the likely origin of this word is ‘beginnings and birth’, like in genesis. We need to give our children time that begets life, that produces deep roots and connections in their hearts and minds. This will be different for every child, but Mom and Dad know their children best, and they know what will feel like Genuine Time for each of their children. It may be a special Daddy/Daughter date, all fancy, getting dressed up, going out to eat, dancing the night away. Or it may be as simple as riding shotgun on the way to Home Depot, talking heart to heart as you share a bag of Skittles. It may be taking your son fishing and listening to his heart and seeing how he lights up when he has your undivided attention as you try to squish a worm onto a hook or get the lure unsnagged for the umteenth time. Genuine Time breathes life into the hearts of our children. And when our children with disability require more and more time, we need to strategize and make creative plans to provide our other children with Genuine Time.
One other potential origin of the word ‘genuine’ is knee. Knee in latin is genu. The possible etymology here is that of a father placing his child on his knee, signifying that this child is genuinely mine. ‘He belongs to me.’ Fathers, Dads, do your children, all your children, feel that genuine heartbeat of yours for them? “My Life For Yours.” It will involve sacrifice and creativity as the hours in the day don’t change, but pray, trust your Father in heaven to give you what you need, and find ways to provide all your children with Genuine Time. Let them know, Mom and Dad, that it is good for them to be with you, that you enjoy them, that you take delight in them, that they are the apple of your eye, the object of your affection.
So those are three encouragements, three considerations as I try to help a friend in the Lord navigate how best to cultivate a heart of love and sacrifice in their children. Gospel Gratitude: help your children see how we are all weak and we are all welcome into God’s kingdom because of the finished work of Jesus Christ. Patient Endurance: train your children to see the beauty of a long obedience, how in this world Jesus promised us trials, but He also promised to be with us and shape us through those trials. Genuine Time: our kids, those with a disability and those without, need genuine time with us, to feel our affection, to experience our love, to know they belong.
The family of God is a beautiful diversity friends. The Body of Christ is composed of many members, each one set in place, appointed by God, placed by God, right where they belong, for the health of the body and the glory of God. May our children see God’s good design in blessing them with a sibling with a disability. May God help them look to Jesus, see with new eyes, and hear Christ’s promise to one day make all things new.
The Rugged Beloved 