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When I First Heard the Words 'Down Syndrome,' I Thought My Life Was Over

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To be perfectly honest, when I first heard the words “Down syndrome,” I thought my life was over. My son Kaleb was 2 days old when I was told his diagnosis. Sure, part of the issue could have been contributed to postpartum hormones coupled with the fact that we were talking about a very tiny 2-pound, 2-ounce baby born 12 weeks too soon. Those two words suddenly shifted the vision and plans I had for my life.

We were going to be that family, I thought to myself. I was going to have to be that mom — the mom whose whole life revolved around her kid, with no life of her own as she went from appointment, to therapy, and back again. So while I grieved over the loss of the baby and child I thought I was going to have, I grieved for a much different reason too. I grieved over the loss of my life. Or what I thought was the loss of my life.

Those who know me know I always have a plan, and I dream big. I always have half a dozen things on my plate. Some might say I have a hard time telling people no, but I would also tell you I have a passion for life. I had someone once tell me my theme song should be Terri Clark’s country song, “I Wanna Do It All.” I love life. I love people. I love to learn. I want to experience all life has to offer. I want to experience this world I believe the good Lord has given us.

So yes, one of my initial thoughts with his diagnosis was my life is over. Gone were all of those dreams. Was I even going to be able to have my career? Would I have time for my oldest son? Would I finish my doctorate? Would I still find enjoyment from my old hobbies? Would I still hang out with my current friends? These were all thoughts I had when I first received the diagnosis.

I am not a fan of the acronym YOLO (“you only live once”). I used to tease my husband, claiming he failed in his attempt to be trendy and hip when he would use #yolo in his tweets. While I’m not a fan of the now-overused term, I do like the sentiment.

I smile when I think back all of those months ago when I had these thoughts. I thought my life was over. Little did I know, my life and love was about to be doubled.

Kaleb smile

I love to experience life. Well, this little boy has shown me many life experiences I thought I’d never have — even ones I didn’t really want like extended NICU stay and two surgeries, including an open heart surgery.

I love to learn. He has taught me about feeding tubes, therapies, home oxygen, and other home medical equipment. However, he has shown me I’m stronger than I know. He has taught me differences are OK and our individual quirks are only part of the story. He has shown me it’s OK, and life goes on, and it’s a life worth having.

I said I love people. Well I have met so many people and heard their stories along the way. So many medical professionals as well as fellow travelers on this parenting path. People and stories that have made a lasting impression on my heart. They all have taught me something.

He has shown us how special the friends and family in our life are as most constantly want to share in our journey and learn right along with us.

Sure, I have my career and I am still pursing my doctorate, but I come from it equipped with a new perspective — one that has not diminished it but rather enhanced it. I may feel different, but I am still me.

Yes, I do find myself going to more appointments and therapy sessions, but we’ve adapted and it is time spent with Kaleb. It is time I use to celebrate every milestone no matter how small.  Setbacks, we have them, but that is life, and it is a fuller life with him a part of it.

I still enjoy all my old hobbies, plus a new one: Kaleb. 

kaleb in an orange shirt

I am in constant awe of him and all he has and continues to overcome. Even with all he’s dealt with, all you have to do is look at him to see the pure joy and spark of life in his eyes. I love to watch him get so excited his whole body shakes, throwing him off balance. He continues to teach me more about life than I ever could have imagined.

Nine months ago I thought my life was over. But it was just beginning. YOLO. You do only live once, and it is a life I am proud to call mine.

Originally published: July 22, 2016
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