When I first meet people, they will often ask whether I have children.
“Yes, I have two boys.”
“How old are they?”
“Six and nine.”
“Those are fun ages.”
I usually reply that our 6-year-old, Jeremy, has a rare neurological disease that makes him developmentally more at a 3- to 6-month level, but he is pure love and joy. If I instead smile and nod that these are, indeed, fun ages, the conversation usually turns to questions about what the boys like to do together.
Jeremy has a hypo-myelinating leukodystrophy, meaning he has no myelin in his brain. Myelin is like the insulation on an electrical wire that allows signals to be sent smoothly from the brain to the rest of the body. Without it, Jeremy is not able to sit up, walk or talk, and he has a feeding tube. There are many other things he cannot do, but none of this provides insight into who he really is.
What does Jeremy do?
The answer to the question is that he gives and receives love more freely than anyone I know.
When Jeremy was entering kindergarten, I had to complete a four-page developmental questionnaire. Except for the first couple of questions (Does your child show hunger? Yes. Does your child flinch at loud noises? Yes.), the answer to every other question was no.
Does your child love? That question was not on the list, but the answer is an emphatic yes for Jeremy. And this is precisely what Jesus calls us to do. “My command to you is to love one another” (Jn 15:17).
Jeremy’s developmental strength is relationship. Interacting with people brings him great joy; he loves being sung to, hearing stories and receiving kisses and hugs. Some may consider these small things, but he rejoices in them. He is always ready to offer a huge smile, laugh or squeal of delight, no matter how hard his day has been. He is filled with joy at the voices of those he loves (Jn 3:29) and he reminds us to be joyful (Phil 4:4).
Contributing to his joy, Jeremy lives in and appreciates each moment. His medical condition involves a lot of suffering, but regardless of the pain he experienced earlier in the day, when we sing or even hum one of Jeremy’s favorite songs, his face lights up and he is fully present in and thankful for that moment. His entire face radiates the sentiment expressed in Mark 9:5, “It is wonderful for us to be here.” The light in his eyes and blissful smile on his face are Jeremy’s way of “overflowing with thanksgiving” (Col 2:7). Each one of these moments is a gift, and he appreciates them all.
Jeremy’s joy, in turn, brings us joy. As Proverbs 15:30 says, “A kindly glance gives joy to the heart, good news lends strength to the bones.” He is working for the kingdom of God in his own way and brings great comfort to all who know him (Col 4:11).
Like the friends who brought the paralyzed man to Jesus by lowering his bed through the roof (Lk 5:18-20), Jeremy also brings us closer to Christ. By the grace of God, Jeremy’s life has shown us the importance of uniting our sufferings with Christ’s and asking the Lord to redeem them (Col 1:24). Jeremy shows us how to suffer well. He experiences the suffering but does not give it the last word. Joy always follows.
Jeremy never worries and always trusts in the love of those who care for him. He lives Matthew 6:34 daily: “Do not worry about tomorrow: tomorrow will take care of itself. Each day has enough trouble of its own.” His trust in our love points us to trust in the love of God: “If you, then, evil as you are, know how to give your children what is good, how much more will your Father in heaven give good things to those who ask him!” (Mt 7:11).
Finally, Jeremy encourages us on the path of uprightness. “The upright shows the way to a friend” (Prov 12:26). Jeremy lives a holy and saintly life, blameless, unsullied and at peace (2 Pt 3:11-14). Each day, he displays the fruits of the Spirit, especially love, joy, peace, patience, kindness, goodness, trustfulness and gentleness (Gal 5:22-23).
Sadly, though, some question whether a life like Jeremy’s is worth living. Not only does Jeremy’s life have inherent value and dignity from God (cf. Gn 1:26-27, Ps 139:13-14), but, as you can see, he is also living out the Word of God each day (e.g., Rom 13:8) and changing lives. The works of God are being revealed in him (Jn 9:3)!
Let us pray for the grace to live with more joy, presence, gratitude, trust and purity of heart, and may the Lord grant us the grace to bring each other closer to Christ and to suffer well. “I bless you, Father, Lord of heaven and of earth, for … revealing [these things] to little children.” (Mt 11:25).
Adrienne Weaver and her family are parishioners of St. John the Evangelist in Severna Park.
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