Shining Stars

I have been writing an update in my head for weeks now. I thought it was going to be full of medical and developmental news about the babies and maybe a few other family updates. That was my plan. Until yesterday.

Now I am compelled to tell you about the musical my family experienced yesterday. We attended Les Miserables for the third time. The first two were Broadway tours, and they were good. Very good. We all fell in love with the story and the music and have been Les Mis junkies for years. But this time was different. This time we fell in love with the actors (and actresses). And the combination…music, story, acting…defied words.

No, the show was not on Broadway, and the tickets did not cost a hundred bucks a pop. But I guarantee that nobody who attended any of the expensive shows on Broadway yesterday was more moved than those of us who sat mesmerized for three hours in the theater at the Kempsville Rec Center in Virginia Beach watching Les Miserables the School Edition with All Abilities.

My friend Dianna Swenson and some very special young men birthed the idea of this show, which partnered young actors and actresses with various disabilities with “shadows,” local actors and actresses who put their own talents in the background to allow these young people to shine. And shine they did. In every way. Young adults set aside labels like Down syndrome and cerebral palsy and became Valjean, Javert, Eponine, Enjolras, and the Thernardiers. They delivered their lines, sang their songs, and brought the house down.

For me, the tears began in Scene 1 and flowed freely throughout the show. Holding Lydia on my lap only intensified the emotions of the day, especially when she began singing along with “Empty Tables, Empty Chairs” and blurted out “Cosette” when Marius sang, “I don’t even know your name.” Wow.

And I knew my friend Dianna was fighting back her own tears on stage with her son Collin, who played the Bishop. Without Collin, the entire production would never have happened. Collin suffered a birth injury that left him unable to do anything that society considers essential to a “productive” life…things like eating by mouth, walking, talking, and even swallowing. But on that stage yesterday, Collin showed the world what his friends already know. His life is as productive and meaningful as anyone’s and more so than many. This ten-year-old boy who wasn’t expected to live through the night is a walking miracle whose life has been like the tiny stone thrown into a calm lake. The ripples go on and on until they touch the entire surface.

And his mom. His mom is like any mom. She loves her children fiercely, struggles sometimes, and lives a life many would consider impossibly hard. But she is not like most in her response. She doesn’t survive her challenges; she embraces them, finds joy in them, and turns them inside out. This idea for Les Mis with All Abilities grew into the quality production we witnessed yesterday because Dianna chose to trust God with every detail and every step of the journey. I know because I witnessed it for the past year as this event unfolded. The results were epic because she relied on an epic God, and He provided.

So how does this relate to baby updates? In several ways. Since my last post, Tess has had the Visual Evoked Potential (VEP) test as well as a surgery to align her eyes. The bottom line is that we still don’t know what she sees. Maybe a lot, maybe a little, maybe nothing. Time will tell. Meanwhile, she is receiving vision therapy, and we are reading about CVI (Cortical Visual Impairment), preparing for the possibility of blindness, and holding out hope that her vision is just delayed. Whatever her journey turns out to be, God will provide what she needs, and good will come from it.

And our “bonus baby,” Titus, continues to meet milestone after milestone, with no obvious effects of his brain bleed, but we got the news last month that he had not escaped the need for a cerebral shunt as we had thought. I had been calling that “our little miracle,” and my first reaction was to be mad or to blame myself for not being grateful or prayerful enough to “maintain the miracle.”

But at yesterday’s show, I was reminded that the miracle is life in whatever form that comes. Shunt or no shunt. Sight or no sight. It really doesn’t matter. Because God can use all of it. All of us. Every. Single. One. To make a difference. To touch lives. To reveal Him. To glorify Him. And ultimately, that is what matters most.

So pray for our boy this coming Friday when he gets his shunt. We hope the surgery goes smoothly, the shunt functions well, the hospital stay is short, and the impact on his life is minimal. But mostly we pray that God uses it for good in Titus’s life somehow. And that just like the cast of Les Mis yesterday, he and Tess and Lydia, and all of the rest of us too, will not let our disabilities stop us from using our talents, pursuing our dreams, and SHINING like STARS.

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