October is Down Syndrome Awareness Month. It’s a time to spread awareness, to educate, and to celebrate the people who have Down syndrome, as well as their abilities and accomplishments.
Because I have a brother with Trisomy 21, I have been immersed in this celebration for the majority of my life. If you search the web, you’ll find all sorts of amazing individuals with Down syndrome: some are amazing athletes or models, some of them own and operate successful businesses, others are celebrating their acceptances to college. If you look hard enough you’ll find that there isn’t much these individuals can’t do. Max is no exception to this.
Max is smart, athletic, stubborn, lazy, enthusiastic and very funny. Beyond that, Max seems to have a natural inclination towards anything spiritual. I imagine this innate ability has a lot to do with his purity of heart and childlike innocence. For me, Max’s ability to connect with God so intimately is one of the most inspiring things about him. Since this capacity for the spiritual within individuals who have Down syndrome is not something I see discussed much, I thought I’d take this opportunity to share a few stories that highlight Max’s ability to live out his Catholic faith.
One night, at the end of a family wedding, our brother Ben was having a disagreement with his fiancée, Taylor. They were so frustrated with each other, they ended up riding home in separate cars. Max climbed into the same car as Taylor, and sat in the seat next to her with his arm around her shoulders. Upset, Taylor voiced her legitimate frustrations to the rest of us riding in the car. Max patted her shoulders, and spoke up unexpectedly. “Tay-lor…” He began, “Ben is ve-ry…in-con-sid-er-ate. But Je-sus, tells us, to for-give.” In that moment, all of us riding in the car were dumbfounded. Max (who was sixteen at the time) was acknowledging Taylor’s pain and frustration, while also encouraging her to live her life in a Christian way. He was the only one to encourage her to pursue a path of virtue… the rest of us had just been adding fuel to the fire.
Years ago, our sister Kelsey was going through a rough period of life. One particular morning, she woke up feeling very anxious and wasn’t sure she was going to be able to face her day. Almost immediately, her phone started to ring. Caller ID identified the call as coming from “Dad.” Due to the early hour of the morning, Kelsey scrambled to answer, fearing bad news. Instead, she heard Max’s voice saying he had a special message just for her. “Hi Kelsey. I just wan-ted to tell you dat God luves you and will pro-tect you. He won’t let, da de-vil hurt you.” Kelsey was overwhelmed with the timing of this occurrence. “Did Dad tell you to call me and say that?” she asked. “Nope!” Max assured her, “God did!” Kelsey refused to believe Max until my dad confirmed that Max had taken his phone without permission and without prompting. Grateful and encouraged, Kelsey was able to tackle the challenges of the day.
A few years back, we lost our Poppa to a brain tumor. Throughout the whole experience, Max never questioned what was going on. He understood. He still does. He misses Poppa and often cries at Mass, especially after Communion when “the veil” between heaven and earth is thinnest. Yet Max also knows that Poppa is not gone forever. Last week, my family went to visit the graves of our relatives. They went to Poppa’s grave first, and Max sat down next to his tombstone. While everyone else went to pay their respects to the great aunts and uncles, Max stayed at Poppa’s grave, talking to him the whole time, and was sad when it was time to leave. In addition, Max also seems to understand that Poppa still needs our prayers. Once, when Max didn’t want to do his chores, I attempted to explain how Jesus didn’t want to die on the cross. Jesus knew it was going to be hard and he didn’t want to do it. Despite this, Jesus did it anyway, for us. I told Max that the things we don’t want to do are like our own crosses, and when we do them anyway, good things can happen for other people. Max understood me immediately. He got up to do his chores and said (without any prompting), “I of-fer it up for Pop-pa.”
About six years ago I was putting aloe vera on Max because he had a bad sunburn. After I covered his face, he stretched his arms out in both directions, wincing as I rubbed them. Then he looked at me with a serious face and said, “Hey Grace… do you think that Jesus’ arms got sunburned while he was on the cross?” I stopped what I was doing and I looked him dead in the eyes, realizing that this little boy with Down syndrome was not only contemplating the mystery of the Crucifixion, but he was trying to unite his sufferings of the moment with his Savior. I was impressed, and humbled. Since Jesus hung on the cross during the hottest hours of the day, it seems plausible that he could have gotten a sunburn. Even if he didn’t, what Max helped me to remember is that Our Lord probably suffered in many more ways than we even know during the Passion. His sweet meditation opened my imagination and helped me to enter into the Crucifixion that much more.
When God sent Max to our family eighteen years ago, I only expected hardship and suffering. I never expected to learn much from him. I expected to compromise and sacrifice. Instead, I found a source of wisdom and joy. Through Max, God has given my entire family a front-row seat to witness an entire life lived out with child-like faith. His goodness has changed us all for the better. It’s true, what St. Paul says, God really does use the weak to lead the strong.
Grace is a life-long Catholic whose love for the faith has only grown throughout the years. She holds a degree in Theology and Catechetics from Franciscan University and has worked in a variety of ministry settings. Grace relates to the prophet Jeremiah when it comes to evangelization: “If I say, ‘I will not mention him, or speak anymore his name,’ there is in my heart…a burning fire shut up in my bones, and I am weary holding it in, and I cannot” (Jer 20:9). Grace loves naps, Netflix, good food, rich coffee, cheesy puns and bearded men (most specifically, Jesus and her husband). You can learn more about her here.
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