Survival Guide: The Smiley Family
When I was 29 weeks pregnant with our third child, I was unexpectedly admitted into the hospital for early labor. I spent six weeks on hospital bedrest, leaving my 3 ½ year old and 21 month baby at home. The doctors concluded that something was different about this pregnancy and about this baby but they didn’t know what. Luke came five weeks early... arriving on my birthday. He was born with chromosomal and brain abnormalities and the rarest form of a rare syndrome, which only 30 people in the world have. Our geneticist actually printed googled information out for us because there’s just not much known about his syndrome. At 18 months, he was diagnosed with epilepsy.
When Luke’s journey began in my womb, my world shifted completely and everything I once knew as true wasn’t anymore. Life changed dramatically and continued to as the Lord drew me closer to Him than I had ever been before. The things I held onto so dearly in this life became fuzzy and dim and I realized that the truths I was believing were empty and were fading away with each passing breath of the ventilator that Luke was initially on.
He’s almost 6 years old now, is delayed in many areas, he cannot yet walk on his own and has difficulty speaking. His name means “bringer of light,” and that’s exactly what he does. He brings Christ’s light to this dark and shadowy world.
Initially, doctors prepared us for the fact that Luke would never see or hear or smile or laugh. They promised us all sorts of things. The future that they painted was dark and dismal and without hope. Today, Luke can see, hear smile and laugh. We have gotten to experience that God’s promises for us are so much greater than the world's. He has promised never to leave us and He reassures us that His grace is always, always enough. Now, doctors do not pretend to have any idea how Luke is going to be. It’s a giant question mark and that is okay.
What was something that others did that made you feel less alone?
My dearest friend in all the world came to visit me in the hospital before Luke was born and she gave me a Bible verse. And not just any verse but one that spoke directly and oh-so powerfully into my heart in a way that only God could orchestrate. The verse was 2 Corinthians 12:9, which is: "But he said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me."
This verse has radically changed my life. Using that verse, God began to comfort me in a way that the world couldn’t, with its empty words, hopes and promises. In the question marks, God showed me what my role was. He showed me that it was not my job to find out what was happening or what was going to happen. But to trust Him and His purposes. And to accept my weaknesses and not pretend to be strong.
Other things people did for us was pray. They prayed words that we couldn’t even muster. They prayed for those scary moments and for the bigger picture. They prayed us into where we are today.
What was the most unhelpful “word of encouragement” you received?
Oh goodness, it seems like I have a book full of these types of things. Here are the two that I hear most often:
“I know someone who had a child with something similar and they are totally fine now…”
“God doesn’t give you more than you can handle” (which isn’t Biblical at all). For 2 Corinthians 1:9 says “Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead.” And Psalm 55:22 says “Cast your burden on the Lord, and he will sustain you; he will never permit the righteous to be moved.”
When you go through something hard, you’ll find a lot of well-meaning people are quick to reassure you that “God never gives you more than you can handle.” But if you’ve ever truly suffered, you know that’s not true. At some point in your life, even if you think you’re ready for it, God is going to give you more than you can handle. And then what do you do?
For us that happened when our son Luke was born.
In the wake of that, in the depth of our despair, we had a choice: do we keep carrying this burden on our own and hope it doesn’t break us? Or do we consider the possibility that maybe we aren’t supposed to handle it all? Maybe what God really wants is for us to trust Him with our pain and be amazed when he turns it into something good.
Is there a mantra, verse, or symbol that has helped you persevere day in and day out?
For me, I come back to two big things from the Bible when I think about Luke. One is Psalm 139 when David is singing about God and says: “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made.”
God knows who Luke is. God made him. Embracing this truth helps me be okay with his challenges and accept the possibility that maybe he won’t “catch up” to other kids. Physically, Luke is who he is, and I’m okay with that because God is okay with that.
Beyond that, I also go back to God’s promises for heaven in Revelation 5: “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” How Luke is today is not how he’ll be in heaven. He will run and talk and sing… and I can’t wait to see it.
Was there a turning point when your outlook switched from despair to hope, or is it more of a daily rhythm of choosing?
When Luke turned three, that was such a huge moment for me. I remember thinking “if the doctors had told me that this is what our little baby was going to be like, I would have lived these three fear-filled years so differently.” Luke is an absolute delight. Even though things are very different and much more challenging for him and for our family than most others’ lives, Luke is an absolute gift from God.
We have so much peace and hope, knowing that we don’t know what the future holds for Luke. But we also don’t know what the future holds for any of us. Instead of being gripped by the what-ifs, we are reminded that God knows what our lives are going to look like and since our faith and trust is fully placed on Him, we do not need to live in fear.
How do you believe the church could best respond and minister to young sufferers?
We love the way our church has embraced our special needs son and accommodated him the best they can. For a few years, that meant keeping him in with the younger kids where he could crawl and play. Now it means watching him like a hawk as he gets into more and more trouble. Bottom line, they want Luke to know He is loved by Jesus exactly the way he is and are always looking for ways to show that to him.
What would you tell someone who is about to face similar challenges as you have?
My wife told me early on in all this how the divorce rate among couples with special needs children is over 80%. And it’s understandable why. So much of your life gets poured into the daily drama of your child that there simply isn’t time to nurture your marriage. Because of that, we’ve tried to make a conscious effort to not let our relationship whither away. We fail all the time, of course, but we try. The same goes for our relationships with our other children. We don’t want them to feel that because they have a special needs brother, Mom and Dad never had time for them. All this to say, we try really hard to actually NOT make Luke and his battles the centerpiece of our life. If we wanted, he could be in twice as many therapies as he is. We could be traveling the globe searching for miracle cures. But we’d be risking the overall strength of our family in the process, and for us that’s not worth it.
How do you celebrate small victories?
I pick up dinner and bring it home for just my wife and me to enjoy once the kids are asleep. We do this a lot actually. Probably too much. But it’s our way to venture out into the real world without leaving the comfort of our couch.
Based on your journey thus far, how do you imagine your future will look?
I have no idea. And I purposely don’t spend too much time thinking about the future, for when I do I get sucked into a downward spiral of sadness and self-pity and then I compare my life to others’ and I get stuck in an awful pit of despair. What I do know is that the future is most likely going to be hard and good as most good things are. And I do know that God will be with us, for every single breath.
How has suffering shaped your image of who God is?
When I was an early Christian and life was relatively easy, my Christian focus was centered almost entirely on salvation and God’s promises for eternity. That is when my faith would pay off, I figured. But suffering through the challenges of having a son with special needs has taught me that my faith is essential for the here and now. Suffering is inevitable. And the good news is that God equips us to handle that as well.
The more time I spend with Luke, the more I see my desperate need for Christ. Even though I can walk and I can talk, Luke is teaching me daily that there’s so much more to life than that. As my pastor says, there’s life and then there’s living. And while it’s wonderful to get things done and accomplish lots in this life, it’s not required from God. He doesn’t love me more when my days are productive. My worth is not based on what I do, but in my heart towards Christ. I am enough only because He is enough.
Even while Luke was in the womb, I have witnessed how my sweet boy has touched people’s hearts… deep down in their hearts where most people can’t see - and he does this even without words. Because he doesn’t have the words that pull deep on the heartstrings. So I can busy myself until there’s nothing left of me, in constant search of God’s approval over me, or I can rest in the fact that He adores me simply because He created me.
