Today Jack is three months old and all things considered that’s a huge accomplishment for him. During these past three months Jack has had 6 hospitalizations, 10 ambulance rides, 3 life flights, and over a million dollars in medical bills. Seriously. We’ve made over 15 trips to Seattle, Beckham missed 19 days of school and I missed 35 days of work. We’ve had fast food more times than I care to keep track of and we’ve had 0 nights of good sleep. Just this week alone we spent 4 more days in the ER at Kadlec before getting discharged yesterday.
But today, three months into Jack’s life, none of that matters. We’re just happy he’s alive. It’s hard to find the words to describe the last three months because there aren’t any. It’s such an unusual experience that I don’t think anything can prepare you for, and yet it’s also a common experience to some extent. Three percent of all babies born in America have some kind of issue at birth. That tells me that we’re not special and that millions of parents have gone through what we’re going through. It still doesn’t make it any easier.
But over the last few months we have seen God show up again and again and again.
Let’s start with that pile of medical bills. At this point in Jack’s medical journey we’ve only had to pay less than $5,000 out of pocket. Insurance covered a lot but there was still way over $300,000 that we were going to have to find a way to pay. Washington state has a program in which, regardless of income, Medicaid will foot your medical bills, for an entire year if your baby was lifeflighted to a NICU. At least I think that’s how it works, I’m still not really sure, all I know is that God made a way for a $300,000 bill to disappear before it even showed up.
God’s been showing up in our nurses and doctors at Seattle Children’s Hospital. We’ve dealt with probably over 50 medical professionals by this point and all of them have been world class in their treatment. They’ve literally been a shoulder to cry on and an ear to listen. We have the privilege to be working with the world’s leading expert on PMG and you’d never know he’s so brilliant because along with his wisdom comes a huge dose of humility.
God has shown up in our friends and in their homes. They’ve welcomed our boys, particularly Maverick, with open arms and an open fridge. They’ve become like second moms and have shown them the same love and care they do for their own children. Our friends have cleaned our house, taken care of our lawn, cleaned toilets, brought groceries, hauled stuff to the dump, cooked meals, wrote cards, and shared encouraging verses and songs with us. Most importantly our friends have prayed with us and for us. Not once or twice but daily. Faithfully coming before God on our behalf and on Jack’s behalf.
One of the biggest ways that God has been proving His faithfulness and showing up is in each diagnosis that Jack receives. It seems every time that it’s not as bad as it could have been. Even the diagnosis of PMG is not the worst, he has it bilaterally (both sides) but it’s not around his entire brain. He has early onset epilepsy but he doesn’t have cerebral palsy.
Despite three different diseases and multiple hospital trips, God has been so faithful to us. When Jack was first flown to the NICU at Seattle Children’s I didn’t think he’d make it to three months old, yet here we are. It’s only three months and in some ways not a big deal but when I think about what God has brought us through in these 90 days I can’t help but feel like it’s a HUGE deal.
There are days when I feel like losing all hope, when the pressure feels insurmountable, when friends and family and God feel distant but in those moments I’m comforted by Lamentations 3:17,21-22:
“My soul has been deprived of peace; I have forgotten what happiness is. Yet I call this to mind and therefore I have hope. Because of the Lord’s faithful love we do not perish, for His mercies are new every morning.”
I’ve been reminded again and again of the story from John 4 in which Jesus heals the son of a royal official in a most peculiar way. All Jesus did was say to the father:
“Go, your son will live.”
I’ve been repeating that over and over in my head…
“Your son will live”
“MY son will live”
“JACK will live”
It’s a miracle and a promise that I am clinging to. The story concludes with the man believing Jesus and then going on about his business. I want to have that faith. A faith that hears a promise, believes it, throws its shoulders back and keeps going.
As this summer season carries on I’ll be writing more about our day-to-day experiences over the last few months and sharing different things that we haven’t told many people yet. I feel so compelled to share Jack’s story and to share of what God has done and is doing. My goal is to make His name famous.