Like many parents of special needs kids, I assumed Lexi would be able to move into a group home not too long after she turned 18. This assumption was carried by me for pretty good reason — most of the people in charge told me that’s how it always goes. As it turns out, that’s rarely if ever how it goes.
A few months ago, a Community Mental Health worker told us in a cold government conference room that are no open spots for Lexi anywhere in the state of Michigan. Not the city or county… the entire state. Zero openings. She went on to tell us that yes, we can be put on a waitlist, but that Lexi might be on it for 10-30 years. In other words, Lexi would live at home until we’re too old to physically take care of her.
It’s not that we don’t want Lexi around — please understand that we love every moment with her. Well… most every moment. The demands of raising and caring for a person with special needs are numerous. Regular diaper changes, constant need for supervision, moments of stubbornness so strong that school has been skipped and doctors appointments have been rescheduled — these keep us on our toes 24/7.
When they broke the news to Brittany and I, we were overwhelmed. It took the air out of the room. As we both looked at each other in shock, Lexi played on her iPad, oblivious to the fact that our assumed life trajectory as we knew it had radically shifted.
There are zero openings in state run group homes for adult care. It’s not a county problem or a state problem. This is a national problem. A crisis. An emergency. It means that a significantly large number of adults with special needs have nowhere to go.
Nowhere.
Adults with special needs can be stuck on a waitlist for 10-30 years. For many families, it is truly a hopeless situation.
If I were reading this without any knowledge of what it’s like, I’d probably be thinking “what’s the big deal?”
The big deal is that life is not sustainable at the current rate. Fortunately, I have an amazing teammate who makes it possible to survive and thrive. Many, however, are single parents (as I used to be) whose lives orbit around what feels like an impossible situation. Our culture has categories for kids with special needs, but adults tend to be forgotten, even though they may live to be 60 or 70.
We have friends who are unable to take their 8 year old son son to the store. Fortunately, they can tag-team, where one parent stays home while the other grabs groceries. Parents of kids in these situations become superheroes of balance and flow, not because it’s easy but because it’s necessary.
Not only does a family unit need a break from the constant demand, the individual deserves the dignity of leaving the nest, even if it’s not a traditional path. Lexi is, strangely enough, an adult. One of her caregivers, a college student with a boyfriend, a car, and aspirations of becoming a nurse, is the same age as Lexi. It’s surreal to see them together. Both on very different paths, yet equally dignified as human beings.
When Brittany and I found out that the chances of Lexi spreading her wings and moving into a group home were basically zero, we felt hopeless. Both of us have experience in having to pivot and jump into plan B, but even we were disoriented for a few days. Then, as God stirred things up, something very odd happened.
Even though it was unlikely, Brittany and I toured a group home called Harbor House Ministries, just to see what was out there. More than that, we were looking for a way to advocate for our kid and find some way to make the impossible happen. Brittany is especially good at this.
I’ll never forget the moment we walked through Harbor House. Residents were comfortably spread around a large room filled with adaptive furniture and a handful of roving caregivers. A young resident greeted the director who was leading us on the tour, then welcomed Brittany and I. It was a special moment. Before I had Lexi, I was largely unaware and, honestly, didn’t care much about the special needs population. God has softened my heart through the years, now to the point where I’ll shed tears if I see someone with Down Syndrome walking through the mall with their parents. I’ll tell you this: people get scared when the big bald guy starts to cry a little.
Anyway, we were walking through Harbor House, with a mix of amazement and sadness. It was wonderful yet unlikely anytime soon that Lexi would be in a place like this. As we worked our way out of the living quarters, a resident sitting on a couch looked right at me. Without a voice, he spoke volumes to me with his eyes, which were full of life, yet enclosed in a body that kept him trapped. It wasn’t a smile, it wasn’t a cold stare — it was a soul-penetrating look that conveyed presence in the midst of pain. It was warm but not sappy. It was kind, but also spoke to the reality of where we were and why. I believe that God does not intend special needs. Rather, people have birth defects because we live in a broken world where DNA strands get twisted and mutilated, babies are starved for oxygen, and life-altering head injuries lead to the quasi-death of the son or daughter they had up to that point.
The resident looked at me and somehow encapsulated pain yet a hope based not on optimism but reality. Love and justice. Grace and truth. In his eyes, I saw something I recognized. In that moment, I was looking at the face of Christ.
We headed into the recreational building. The director showed us a wall that had the names of residents both current and former. “Some residents,” she explained, “moved to different facilities.” Every name had a date of birth. Some names on the wall had two dates. “Those are the residents who, unforunately, passed away while they lived here.”
A heavy moment took the room. The director sighed and said “We see each other as a big family.”
I had to look away. So much love. Too much love for me to handle in that moment. Across the room, they had a huge mural of the handicapped symbol that was made up of the faces of residents present… and past. I used to raise an eyebrow at that symbol, wishing I could use it to park a little closer. In this moment, it symbolized acceptance, embrace, and dignity. It was a holy moment for me.
We saw a few more rooms and were blown away at the services, the space, and the care that the facility offered to its residents. The director emphasized again that, to be sure, it’s quite unlikely that the state would put Lexi here because of a vast shortage. Yes, when a resident dies, a bed opens up, but those who have been on the list for 20 or 30 years take precedence over the new kids on the block.
I knew in that moment that God was speaking to me about a solution, but I didn’t like what I heard, so I pretended not to notice.
A few days later, Brittany said that she heard God talking to her about something. I said “me too, babe” (big mistake on my part). She said “oh good — you can tell me about it, because I want to see if He’s telling us the same thing.”
I said “you first”, but she knew better than that.
With a healthy level of fear, I told her that God was telling me that we need to build a group home for Lexi and others like her. We had the passion, the skills, and the drive to do it.
I cringed when she said “that’s what He’s been telling me, too.”
Why did I cringe? Because that wasn’t the solution I was looking for. It wasn’t a lack of faith on my part. It was fueled by faith, because I knew that God was calling us to this, and that He would make things line up all too perfectly. I just wasn’t ready for that kind of adventure. Selfishly, I thought Lexi would move into a home and I would have time to take the boys fishing. Plus, I kinda wanted to go to Europe with my wife next summer, or maybe take up golf.
Brittany and I held each other and prayed honestly, saying to the Lord that we didn’t want to do this, that it raised more challenges than we already face, and that it wasn’t what we imagined up to this point, HOWEVER, we love and trust that the same Jesus that brought us together was now bringing more pieces into the mix. We need not understand, just believe and be ready to move as directed.
Nothing happened for a few days. I sat on it, prayed about it, but that was about it. The idea of starting a group home was put on the back burner, partly because of the needs of the rest of our kids, and partly because it’s fun to ignore a looming project and fool yourself into thinking that if you don’t think about it, it doesn’t exist.
What fools we are, yet fools for Christ.
It hit me one morning in prayer: we would have an answer by August. That’s what the Lord told me. That, too, I sat on, not wanting to get the hopes of my wife up too high. We’d been on a rollercoaster already, and I wanted to go back to not thinking too much about it.
Then a chance conversation changed everything.
Brittany connected with Jess Ronne. You may know that name. Jess writes a ton about life, faith, blended families, and more. She also advocates — strongly — for families of special needs individuals. Ryan and Jess have an 18 year old son, Lucas, who has severe special needs. For years, Jess and her husband Ryan have advocated for individuals and families, since this is a situation that affects an entire household. Parents especially need support, and it’s the kind that our world isn’t quite up to par with yet. We need voices like hers to help us see the unseen. Raising a kid with special needs is not normal. It requires a whole different skill set that you have to learn on the fly. You can see her work here, her documentary here, and her blog here.
Anyway, as things tend to fall into place a little too perfectly, it turns out that Jess, Ryan, and their kids go to the same church we started going to this summer. Brittany had heard the name before but finally made the connection this summer on Instagram. They met in the church lobby and talked on a Sunday in August, connecting over the many similarities between our families. We’ve all lost spouses, we’ve remarried and blended families, and we have kids with special needs. That’s a lot of checkmarks on one list, yeah?
What was God doing? You’re starting to see it, aren’t you?
Brittany talked to Jess at length about the lack of housing and our heartbreak over Lexi’s new situation. After a few conversations and without going into too much detail, Jess said “I have good news for you.”
Then she told us about Hope Farm. Ryan and Jess had the vision of building a place for kids like Lexi to live and thrive in adulthood. Imagine our surprise when they invited Lexi to be one of the residents with Lucas, with space for at least two more.
We found out in August. God said we’d have an answer by August. Do you see how good he is? Why do we worry? Probably because we like control. This situation is out of our control. It’s uncharted and difficult. It’s not something that just anyone can handle. We can’t, at least not without God’s grace.
How does this coalesce with God’s calling for us to build a group home? Jess and Ryan bought a farm — Hope Farm, as it is aptly named — but it needs a lot of work. Guess who knows how to flip houses? Ryan, Jess and Brittany. Guess who knows how to get donations for auctions and fundraisers? Jess and Brittany. Guess who knows how to navigate government labyrinths like a pro soccer player? That’s right — Brittany. And guess who can string together a blog post to get the word out? Me, barely.
In other words, it’s even better than we thought. We get to partner with a family who is already on the path and combine efforts to make a vision become reality. How much better can it get? And not only does this answer the question for at least 4 adults in the state, it also becomes something that can be expanded by other parents who endeavor to do the same for their loved ones.
To be sure, it shouldn’t be this way. Our society is way too advanced to have to keep this burden squarely on the shoulders of a parent or two. We have hospitals, schools, and homeless shelters now because society recognized the need. In fact, history tells us that it was the church that had a hand in starting most of these organizations back in the day. It’s my prayer that the church of today will step up, just as it did with Methodist hospitals and Catholic charities, and start meeting needs that are largely ignored by the general population. I want to be part of that movement, and I want you to as well.
There are many ways you can help. Our biggest need right now is money. The house on the farm has good bones but needs some serious renovation. The barn will be home to a respite center that will serve many, but, as of now, it’s still a barn.
We’re doing for others what they cannot do for themselves. This is one of the marks of the gospel of Jesus, and it’s how the church and community can step up and bring the healing that our world needs. You don’t have to fix everything, nor can you, but, if you know me and my family, you can help Lucas, Lexi, and others live and thrive for the rest of their days, in safe care and full dignity.
I hope you’ll take a moment to watch this video, yah?
And, I hope you’ll take some time to pray about how you can help with our initial fundraising efforts.
Once again, Brittany and I are surprised and humbled by the adventure God has us on. We’re grateful for new friends and unexpected answers, and thankful for the calling that Jesus has for us. All glory to him. Consider yourself invited to be part of the solution with us.
I keep thinking about that resident who looked right at me and said so much without a word. Jesus was there. Jesus is here, aware of the overwhelming need, and hard at work healing a broken world. I want to join him in this, and I’d like you to come along for the ride.
Donate to Hope Farms here.