This giant humongous post is dedicated to my Obi Light!
If you make it to the end, you’ll discover communicating all of this was probably more for my sake than it was for you reading it. Thank you for taking the time and journeying with us.
This past summer after almost a year of beautiful church planting and finding out we’re having another baby, our hearts were shattered by some unexpected news. News I’ve wanted to keep off social media for the protection of my most precious Obadiah for as long as possible.
I’d rather share the highlight reel, but I’ve been amazed at how people rally around the joy and suffering we all face here in this space called social media. We can journey alone or journey together and while I really didn’t want to share, I’m committed to journeying together (plus my husband says this is good for us :). I’m thankful for another avenue to share God’s faithfulness as we continue to lean into him on our journey toward miraculous things.
Obadiah was diagnosed with autism spectrum disorder after we realized something seemed to be stealing from our perfect boy who had been reaching all his developmental milestones and very quickly began losing them. We didn’t even know something like this existed.
We had no idea it would be ASD. And since it was, we have never been the same.
Nothing is worse than when something harmful happens to your children you can’t control. This has profoundly impacted us. It’s impacted what we used to think about things, our perspectives, our faith, our everything. And after a season of depression, darkness and despair, something has been produced in us that nothing else could’ve. My weak faith has become strong and more fierce; there is still more to come of its power, I can feel it.
Here’s a bit about what ASD means for our family:
- We won’t stop believing by the power of prayer, early intervention of gut health, neurological health and school/therapy that Obi could outgrow or be completely healed of this diagnosis. In-fact, since we began early intervention, Obi has only progressed, nothing has gotten worse. The regression has stopped. Even his diagnosis Dr. says he’s not where he used to be months ago. It’s a miracle! And we’ve only just started. Kids have and continue to come back from ASD.
- We’re committed to supporting Obi at every stage of life to the best of our ability.
- He’s just turned 3 and we caught it right at 2. He’s not been on the earth long and his future includes much more than a diagnosis or label. We’re fortunate that he has more developmental normalities than deficiencies. Like all of us, he deserves to be known for more than what he struggles with.
- The saying goes, “once you’ve met one child with autism, you’ve met one child with autism”. The spectrum is large, very large, no two are alike. We don’t get to know how things will shake out for Obi (probably the best and worst part) but we do know the healing process has already begun (we caught it early). There’s no denying the improvement we’ve seen, not just improved skills from the right support/therapy, but actual neurological healing. We work hard for his neurological health. We won’t put limits on God’s healing and his future!
- Our family is committed to Jesus and committed to community. It’s not easy to share what we’ve chosen to share publicly. But we committed to authentic community, where we love and allow ourselves to be loved….which means we choose to be vulnerable during the storm and not just after it (something we as Christians often struggle to do). We’re choosing to feel and embrace all the ups and downs that come with this life that doesn’t often go according to our plans. We’re people of faith AND our hearts are broken over this. We feel the darkness and the light. I’ve never been more sad about anything else in my life. And I’m not afraid of that. Being sad isn’t the opposite of walking a passionate and purposeful life with God…we share in his suffering. We’ve put a stake in the ground to show our children that we as pastors and leaders are human and experience heartbreak and pain. We’ve needed the love and support of the community God is allowing us to lead at our amazing Kalos church! The church is powerful in moments like these. It’s why we’ve given our lives to reach the world through the local church.
- It’s gut wrenching as parents to grieve the loss of dreams we had for our child, dreams we watch our friends continue to have for their kids who don’t have a diagnosis. We’re instead, committed to new dreams and adjusted expectations. Obi is fighting, growing and learning everyday. We’re so proud of him. None of this is his fault. As he overcomes something he didn’t ask for or deserve, we keep teaching him about wholeness in Jesus.
- Our life is beautiful. It’s not perfect. But it’s beautiful. We haven’t forgotten who put this family together and who sustains us.
- Our hearts have been enlarged for families with children with any kind of sickness, disability or special needs. Wow, we had no idea until it happened to us. And really, you don’t know until you go through it as a parent yourself. We see things much differently than we did before. We see your family with admiration and utter respect.
- I watch my son fight every day against something that tries to take from him neurologically. He’s tenacious and bold and resilient and while I could have a neuro-typical son, and still pray for that, I’ll take this brave, devil fighting, curly haired conquerer any day! There’s so much more to know and experience about Obi than the diagnosis he’s been given.
- I encourage everyone to be very thoughtful and careful toward parents with kids with ASD, especially if you don’t know what it’s like to have a non-neurotypical child. Be careful with your opinions, your beliefs of the causes of ASD, who it happens to and who it doesn’t — ultimately, recognize that your understanding is limited. As parents we hear a lot of crazy stuff from well intentioned people. We are fighting for the truth behind ASD more than anyone. We cry a lot of silent tears for our kids. We’re not sure we want you to know our struggle. We hurt for our kids always. We work overtime to get them therapies, figure out how to finance support for their needs, implement new things at home, no rest days for their success. There’s nothing we did or didn’t do to cause a diagnosis for them, although we wonder and sometimes blame ourselves when we shouldn’t. In fact, some of us went above and beyond to make healthy choices for our kids to avoid the diagnosis our children devastatingly got anyway. There are no easy black or white answers. Let’s support each other as parents despite the hardships all of our children face.
- Two years ago God called us to move our lives to Seattle to plant a church. While we chose to be obedient, we didn’t pick the location, God did. Little did we know then that Obi would be given this diagnosis or that Seattle leads the nation in autism spectrum research, resources and support. We have had miraculous provision and Obi is getting some of the best therapies our nation has to offer. His teachers treat Obadiah with the utmost respect and care. We are deeply grateful. God knew. He knew back then, this needed to be our home.
- I’ve been pregnant the entire time this diagnosis has existed in our family. The day we found out about our baby girl, was the first tearless day I had in months. Grief and pregnancy have taken their toll but not overcome me. I’m not ready to engage in a lot of conversation about the diagnosis for many reasons but mostly because I’m focusing on Obi’s healing/development and getting ready for our new baby girl…coming in 12 days!
In the company I co-founded several years ago helping women rise above poverty in Cambodia, we coined this phrase: “distinct beauty comes from places once broken.” It’s here in our brokenness that I sense a truly distinct beauty rising from within our family as our God of unfailing love continues to write our story to impact the world with the reality and love of Jesus.
John 10:10 continues to be our promise.
Thank you for journeying with us and praying for Obi.
(While I realize that many people/parents/teachers/medical professionals have opinions, thoughts and experiences with ASD and may not agree with what I’ve shared, please remember, I’m speaking for my family only. Please feel free to comment but refrain from commenting anything negative or thoughts you don’t agree with. This a personal and vulnerable moment and not the time to discuss anything controversial).