We welcomed in the pediatrician on-call the morning after Finn was born to learn that the Port Wine stains we had been informed about the day before, due to their extent and location {particularly over the forehead and eye}, indicated the possibility of a neurological disorder entitled Sturge-Weber Syndrome; if there were “stains” on the brain, or high pressure on his eyes, he could be at risk for seizures and sight loss by the age of one. That very day, Finn would need to be transported to Seattle for an MRI and given extra blood tests to be sure his clotting and cell counts were normal. As the doc left the room, having kept it together until then, Marshall and I looked at each other and just wept.
Our baby… our colorful, strong, alert, brand new-to-the-world baby was not ok.
We began to pray… for healing, and for strength to handle whatever news might come. And I had this sense that we needed to invite others to pray with us.
And so when my dear friend of over 20 years, a faithful and strong mom of four, entered the room minutes later to visit our new little bundle, she found us weepy and clearly not in the state you’d hope for a sweet newborn visit. She immediately sat next to me, scooped up our beautiful little one and listened as I relayed through tears all that we had just learned. My final words I was barely able to whisper were, “He’s not normal.”
Upon hearing those words, she put her hand to her heart and said softly, “You know what the Lord has been teaching me most recently, Em? That there is no normal.”
There is no normal.
A parents heart is to want the best, the most healthy and “normal” life for our kids, right?”Normal” means trouble-free, right? “Normal” means ease and happiness. We want to spare them from harm and injury, from isolation and fear and sadness and all those things that have hurt and yet have ironically shaped our own life and character, most often for good.
We can all acknowledge that each of us has a story. It might emerge on day one of our life, like our sweet little Finn, or it might not be visible until year 2 or year 20. But each of us will have an unavoidable story of trial, of challenge, of overcoming.
in 1 Peter, scripture tells us “Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.” I wrote a bit about this in Battleship, but the reality is, we should not be surprised when we find ourselves under attack in some way… when the world seems to deal us a hand that is not invited, that is too difficult, that seems sure to lose.
There is no guarantee… no “perfect” child. Even coloring and a strong heart does not preclude the discovery months or years later of disorders, seizures, physical challenges, learning delays, behavioral issues, social struggles … I think of my own three boys coming before Finn who I had no fear for in the days immediately following their birth, but how each of them have their own challenges to overcome, with their own journeys still unfolding.
It is why we never did genetic testing, because to us, the child the Lord gave us would be the child He chose. And we would be given the grace to cross whatever bridge we came to with that child the day we came to it, and not a day sooner. I can attest that some of the more wonderful families I know are comprised of a treasured individual that falls in the category of special needs. Special indeed. For those families have been gifted with a most incredible sense of compassion, protection, patience, love and grace to walk a journey that is not “normal”, but sacred.
But who says that any of our families are “normal”? The world lies when it says that “normal” is even a goal. When it says that “normal” equals happy. When it says that “normal” equals lack of struggle, which equals blessed. Lies.
“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him.” James 1:2-8
“Friends, when life gets really difficult, don’t jump to the conclusion that God isn’t on the job. Instead, be glad that you are in the very thick of what Christ experienced. This is a spiritual refining process, with glory just around the corner.” 1 Peter 4:12-13
Is that not good news for all of us!? Do I not want to be mature and complete!? Do I not want my kids to have deep and honorable character?! Do I not want to be led by truth rather than deceived and defeated by lies?
There is only one place where truth can be found — Jesus. His words, his life, his suffering, his death, his resurrection, his love, his grace, his ability to identify with us in our suffering, his promise that he will give rest to the weary, that he will renew strength in the weak, that he will grant peace that makes no sense, that he will provide joy in trials, and that this world is not our home — this is truth!
The words from my friend and her prayers over us before she left were a gift from God, balm to my soul, a reminder that I was momentarily believing a lie that would not serve me or my family well. It is just one of the many ways God would show up over the coming hours and days to remind me that he was with me, with us. That this story was His story, and that He had my heart under close watch. When our hearts are attuned to His, he does not let us wander long into lies, but rescues us again and again to be restored to truth.
Here’s to our new normal, whatever that is.
Be encouraged, we have a good Father, and he knows. I encourage you to listen to this today…
Amen sister
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Amazing. We love you so much. Your words have helped me to be at peace with uncertain things in my own life. You are such a blessing to us. Baby Finn is a cutie pie, and he is mighty in his way of building faith and love in all those around him.
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