Someone recently asked us during an Instagram Q&A:
It wasn't a difficult question to answer.
But it was a sad question to receive.
Because beneath it is an assumption about the value of life. It suggests that disability has taken something from us that we deserved, and that the life we have now is somehow worth less than the one we imagined.
Yes, our life looks vastly different from the one we pictured.
Due to Oliver's ReNU syndrome, our days are filled with medications, therapies, specialist appointments, medical equipment, feeding concerns, seizures, and questions about the future that no one can answer. There are things we once assumed our family would experience that will never happen in the ways we expected.
Is our day-to-day life harder? Yes.
Do our hearts ache? Yes.
Do we wish certain things were different? Of course.
There is a difference between grieving the life you imagined and believing your child took that life away from you.
Grief is real. We have felt it deeply. We have mourned over Ollie’s diagnoses, the challenges he faces, and the things he will never experience. We will not pretend disability is easy or try to turn every painful part of it into a lesson.
Ollie is not the reason our life went wrong.
To believe he stole the future we were supposed to have would place a burden on him that was never his to carry. It would also suggest that his disability makes his life, and ours, less valuable.
Our faith tells us something entirely different.
Scripture says that every person is made in the image of God (Genesis 1:27). That includes our son. His value was not determined by an ultrasound, a genetic test, a developmental assessment, or a list of milestones he may never reach.
God saw Ollie before we did. Psalm 139 says that God formed him, saw his unformed body, and knew every one of his days before a single one came to be.
Ollie’s life is not an accident. It is not a lesser version of someone else’s life. And it is not valuable because of what he may one day accomplish.
It has purpose because God does not create people without purpose. Ephesians 2:10 calls us God’s workmanship, created for the good works He has prepared for us. Ollie may live out that purpose differently than the world expects, but different does not mean absent.
God entrusted us with the responsibility of being his parents. Our role is not to mourn him as the thief of another life. It is to love him, care for him, advocate for him, and take seriously the life God has placed in our hands.
That does not eliminate the exhaustion. It does not answer every painful question. It does not mean we never grieve.
It simply means grief does not get to decide what our son’s life is worth.
So no, our future was not stolen from us.
A different life was created.
It is more complicated than the one we imagined. It asks more of us than we knew we could give. It contains real sorrow, but it also contains a depth of love, joy, and purpose we could not have anticipated.