Just before my first child was born, I was driving down the road and thinking, I wonder what it would be like if my child were mentally disabled. Nah, that would never happen to me. That is like winning the “bad” lottery.
I immediately shelved that thought and said a little prayer like, “Lord, thanks that I don’t have to go through things like that.” All my life, I had seen the provision of God.
Two months later, my daughter, Kennady, was born with alobar holoprosencephaly and a prognosis of living six to twelve months.
An MRI revealed that her brain was so deformed that doctors were not sure what parts were there and what parts were missing. My wife and I were stunned.
I remember walking out into the hallway and leaning up against the wall. My head fell back; I squeezed my eyes shut. My father walked up to me and stood by my side.
After a moment, I collected my thoughts and said, “Two things really bother me. First, this is not Kennady’s fault; she had no option. She was just being herself and being born, yet this has happened to her!
“The second thing is that society will not value her as a normal person. They won’t see that her soul and spirit are just as real and as normal as theirs. Most people will not take the time to look beyond the abnormal outer shell and see the innocent girl underneath. They will see a severely deformed young girl and immediately, subconsciously devalue her. That is not fair for her.”
It only took a few days for that to start happening.
Who defines meaning?
I was visiting with Kennady by her crib in the NICU. At the foot of the bed was a clipboard of doctor notes. In the doctor’s hand, it read, “The parents understand that there is no chance of their daughter having a meaningful life.”
The bang of those words rang in my mind like a gavel strike.
Judgment passed over my daughter’s entire life with a short yet sweeping sentence. I was utterly crushed and, seconds later, angry.
I was furious.
The doctor was not trying to be cruel. However, his wording on the report vividly revealed our human condition. We judge each other’s meaning based on what we can produce or achieve.
My wife and I often wondered what our daughter would have to accomplish before the doctor would deem her “meaningful.”
- If she could walk, would she cross the threshold of meaning?
- If she were able to form words or write sentences, would she be meaningful?
- Would she have a high market value if she were able to go to college or get married?
For years, we were forced to explore where meaning comes from, who defines it, and how it is officially proclaimed.
We took her home from the hospital on January 5, 2002, with the words, “Take her home and enjoy her while you can.”
Well, we have been “enjoying” her for the last eighteen years!
Where do you find your joy?
Kennady has defeated all the doctors’ prognoses of life expectancy. However, she lives with profound special needs.
She is unable to walk or use her hands. She is nonverbal and unable to eat by mouth. She basically requires twenty-four-hour nursing care. We administer around ten to twelve medications every day. Kennady’s flexibility is getting much tighter, which makes moving, showering, and changing clothes a big challenge.
From the surface of her life, she seems quite broken.
At the same time, anyone who gets around Kennady can definitively say that she is meaningful. Deep down below the surface of her life, she is whole. That wholeness bursts forth with every smile and giggle. She lights up the room when she hears your voice (or when we turn on her favorite rap music).
Her joy does not rely on people’s approval. Kennady has never performed to earn our acceptance.
She rests in her identity.
“The way she is”
I always thought I would discover God’s power when he healed our daughter from her physical condition. It made sense that, if he healed her brain and she started acting like us, we would really see his awesome nature on display.
However, the opposite has been the case.
For years, I prayed for her to be healed. I prayed so much that I was exhausted. At one point, I clearly heard God speak to me, “I love Kennady the way she is. Regardless of what she is able to do.”
Once I heard this message, my perspective completely changed.
I realized that I had wanted her to change so much that I had not loved her for who she was. The truth was contagious.
If God loved her before she did anything, then he loved me before I did anything.
Her meaning in life was not predicated on her ability to perform. Instead, her meaning solely rested in what God said about her.
How to raise children with meaningful lives
We now have two more kids. They are normal teenage boys with no significant disabilities. The biggest risk we have is that they will start relying on their own abilities and listening to the world’s message. If so, they will drift from the Father’s clear and distinct words of meaning and value. They could become addicted to their own ways of acceptance and approval.
Our main role as parents is to keep pointing them back to the truth of Scripture. King David said it so well: “You made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous—how well I know it” (Psalm 139:13–14 NLT).
This process of pointing our kids (and ourselves) toward identity in Christ is not based in effort or work. It is the opposite.
Jesus said it clearly “Remain in me, and I will remain in you” (John 15:4).
We rest in it.
