Discharged

After 78 days of fluorescent lighting and air conditioning, Liam has felt the sun on his skin and breathed in the open summer air. On June 3, we left the Helen DeVos Children’s Hospital and came home to be one family in one place.

It was a surreal feeling, pulling into our home with a welcoming party of family and friends that have been vigilantly praying for us and supporting us both practically and emotionally through these first 11 weeks. We didn’t know if we would ever make it to this point, and feel blessed beyond all measure. We get to love on our little Liam all the time now, without having a foot in 2 camps and balancing our time at home with Caden and Callie with our time in the hospital with Liam.

And yet, the NICU is the safest place for him. He won’t outgrow his central apnea, and at the push of a button a team of medical professionals literally comes running in to assist, using measures unavailable to us at home. Today Yesterday 2 days ago (time is flying) we had to respond to an apneic episode that wasn’t too unlike what we have seen several times already – he got mad, stopped breathing, turned purple, and wouldn’t respond to any stimulation encouraging him to start back up. Only the difference this time was instead of pressing a button on the wall and stepping back while the medical team responds, Mackenzie shouted up to me in Callie’s room, so I could sprint down the stairs to our newly labeled Emergency drawer, grab the CPR bag and go breathe for Liam, while Caden sat at our feet watching.

When we moved to Nashville in 2017, we had it all planned out. We would live there for 2 years while I got my sales experience and Mackenzie taught, then go back to Indianapolis where I’d work up the ladder at Roche corporate. Right at the 2 year mark, we loved it there and realized we had no intention of leaving anytime soon, despite the initial plan. But what we realized is that we had moved there with a temporary mindset. Since we were only going to spend a couple years there, what’s the point of getting connected to community? Why try to develop lasting friendships or make our mark? From that point forward, we decided to be all-in, regardless of how much longer our stay in Nashville would be. We regretted not making that decision sooner.

I think that temporary hesitation is a pretty natural human emotion. From what we’ve read of other families dealing with life-limiting diagnoses where you don’t know how long you’ll have with your child, or if you’ll have any time at all, it’s quite common to disconnect from that child to protect yourself from heartbreak. Why give your heart and your love to someone that you know could be taken from you at any time?

We don’t know how long we will have Liam – it could be days, it could be decades. But each and every one of those days will be filled with gratitude and we will be all-in. This road will be hard, now medically complex and logistically complicated. There will be things in our life that we can’t do anymore, or that will look differently from what we had imagined. Our other kids will grow up with a very different perspective than they would have otherwise.

So what does being all-in from the start look like for us in this new chapter of Liam’s life? For our family, it means turning the neighborly love that’s been given us outward to others, because in times like these you realize why the gospel of Jesus Christ is never more potent than when you receive the love of a neighbor.

The perspective shift that struck Mackenzie and I upon Liam’s diagnosis was immediate. All at once, the many pursuits that this world has become so engrained in, that have become routine and unchallenged pursuits really, were laid bare and revealed as empty. These “good” pursuits – comfort for our families, pleasure, wealth, image, status, an easy life, etc – will never satisfy. So what will?

“Teacher, which is the greatest commandment in the Law?”

Jesus replied: “‘Love the Lord your God with all your heart and with all your soul and with all your mind.’ This is the first and greatest commandment. And the second is like it: ‘Love your neighbor as yourself.’ All the Law and the Prophets hang on these two commandments.”

We have been on the receiving end of the “loving your neighbor” part in very real ways for many months now. Our kids have been occupied for us every day that’s been asked. We have hardly made a meal in 6 months, our house has been cleaned and grass mowed, we’ve received gifts and flowers and words of encouragement. Our medical team has cried with us and poured their hearts into Liam’s. Communities that we don’t even know have come around us in support. We’ve been raised up in prayer since day 1 and are regularly reminded that people are continuing to pray with endurance. I’ve not always been one to ask for help, and recently we haven’t needed to. We’ve had neighbors that have been loving us by seeing a need and acting, by coming alongside – whatever state we’re in.

To all those that have been our neighbors in this time, we cannot tell you how much life it’s given and how thankful we are. We have been held up by all of you. Let this not be the end of the story. Seek new neighbors, find people in need and step into the gap with them to show the love you’ve been given. This world is filled with pain and brokenness in need of that same love that’s been given to us.

As for being all-in with Liam, we will wake up in the nights, sterilize syringes until the measurements wear off, and swap out oxygen canisters every week. He will cost us a lot – our time, energy, emotions, money, focus. He won’t care for us in our old age, he’s not going to give us grandchildren. He won’t ever tell us “I love you”. He can’t do anything for us except cost more and more as the days stretch on. The thing is, that doesn’t change his value at all. He exists to be loved. And loved is what he will be – by us, and by all of you.

How remarkable that sounds, and yet we are all Liam. We have been put here by a creator God, for whom we can provide nothing. We can only cost Him. Nothing we can do will ever earn or lose the love He gives us, because He created us to love us. It even cost Him his son Jesus, so that He could be with us forever instead of separated from us. (Read this paragraph again, lest you lose the importance of it in my long-windedness.) We can do nothing for God, yet he loves us.

We live in light of that knowledge, and our own decision is how we respond to that truth. Will we respond by loving Him back, and our neighbors as ourselves, or will we turn inward and love ourselves, pursuing fleeting desires that won’t satisfy?

1 John 3: “This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers and sisters. If anyone has material possessions and sees a brother or sister in need but has no pity on them, how can the love of God be in that person? Dear children, let us not love with words or speech but with actions and in truth.”

Joshua 24: “Now fear the Lord and serve him with all faithfulness. Throw away the gods your ancestors worshiped beyond the Euphrates River and in Egypt, and serve the Lord. But if serving the Lord seems undesirable to you, then choose for yourselves this day whom you will serve, whether the gods your ancestors served beyond the Euphrates, or the gods of the Amorites, in whose land you are living. But as for me and my household, we will serve the Lord.”