06/08/2025
Sixteen years ago yesterday, my husband and I were given some of the toughest news we'd ever had to deal with. While Brooklynn was still on a ventilator after having her first open heart surgery at 2 months old, a geneticists came in to tell us she has Smith-Magenis syndrome. We were told not to expect much. She will have "learning disabilities" which was later clarified to "Mental retardation", may not walk, may not talk, and will have some very strange behaviors (such as sticking things in her nose and ears). Beyond that, she didn't have much to share because at that time there were only 500 others in the world with this syndrome. Scott and I broke. Google brought about even more horrifying details about extreme behaviors and medical problems. At that point, we decided we were not going to accept this grim future for our daughter. We would work and support her with everything we had. We also quickly realized most of life's stresses over mundane things were no longer worth our efforts. All our efforts were going to our family.
Today, Brooklynn not only walks and talks, but she reads, can ride a trike, and has one of the most endearing personalities of anyone I've met. She has endured countless surgeries and medical procedures. She is a warrior and our hero.
If anyone can take anything away from her story, I want it to be perseverance and hope. A disability is not the end of the world. It's the opening of a new world. 😘
