Special Needs Parenting

Etched Upon My Heart Forever {Diagnosis Spotlight: Down Syndrome}

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This is day 12 of 31 Days of Supporting the Special Needs Family. To view the story behind this series and the series contents, please visit the landing page. Today, Marie is guest posting for us, sharing her story as the mom of an adult son who has Down Syndrome.

Etched Upon My Heart Forever {A Mother's Perspective of Down Syndrome} -

I never dreamed this short essay would be so difficult to write. With each attempt, the tears flowed more than the words as yet another blank page stared back at me. The completion deadline has come and gone. Sigh. I tell myself to push through and wonder why it’s so hard.

I realize the tears are expressing this momma’s life journey that began 27 years ago. The pain, the joy, the blessings, and the grace are all wrapped tightly in heart-felt ways that words can’t fully express.

How do I explain the gut-wrenching fear of the unknown upon hearing my newborn son, Michael, had Down Syndrome?

Or the sheer exhilaration of him achieving a developmental milestone while not giving a hoot that the time it took far exceeded the pediatric “normal” range on that little bell-curve chart in the office?

Or when I thought I had it “all together” until some kid at the pool asked my oldest son why his brother’s face was so weird looking. Ugh. Back to square one.

Or the pain as Michael landed in a crumpled heap on the couch after school one day groaning, “My brain hurts!” after taking (and failing) another semester exam. The anguish as we both cried as I tried to encourage him that in heaven it won’t hurt his brain to think.

My journey is in shades of dark, cloudy colors for much of the early years. There were lessons that exposed my selfish desires and motives, impatience, and anger with God. Today, I can tell you it’s a journey I wouldn’t trade because there were also amazing lessons of mercy, grace and love although I honestly didn’t always see that or believe it to be true.

Years ago, when Michael was still fairly young, I read Psalm 139 for the first time. This truth hit me right between the eyes:

Michael was knit in my womb by God Himself. He was not a mistake or overlooked by God while He was busy knitting “perfect” children. There was not a Michael Model A and a Michael Model B. He was and is Michael. Period. This is God’s plan for our life. Michael is His. That one truth forever changed how I viewed Michael. Instead of wondering how he would have looked or acted if he hadn’t been born with Down Syndrome, I now saw past the diagnosis to my son. The diagnosis moved from primary to secondary in my thinking. That watershed moment seems so long ago, and yet it is deeply etched upon my heart forever.

As the years have marched on and life has unfolded, those types of watershed moments have become less frequent. We’ve settled into a daily rhythm. The whirlwind season filled with occupational, physical, and speech therapists, IEP’s, and 6am bus pick-ups have run their course. We intentionally live at a slower pace now, savoring relationships, enjoying Special Olympics sports, circling words in Word Search Puzzles, and even taking a good nap.

Etched Upon My Heart Forever {Diagnosis Spotlight: Down Syndrome}

The experts say that as adults with Down Syndrome age they become more resistant to changes in routine. That has become more noticeable with Michael with each passing year. The routine is comfortable, like a warm snuggle blanket, so we adapt life to make it less stressful. I know Michael likes 3 scrambled eggs with cheese every morning, a nap at 3pm and that he’ll have his clothes for Sunday laid out on the spare bed six days in advance with daily reminders of my need to iron them. We roll with it. That’s our season of life right now. God’s grace has been evident especially in the ordinary and mundane routines of life and there are plenty of hugs, smiles, and unconditional love from Michael that show us the love of Christ each and every day.

I do think about the upcoming years. I try not to let my thoughts get carried away and become gripped with fear. I’m learning to depend more on God, but I fail many times as we all do. I find great comfort in the words from this old hymn:

“’Tis grace hath brought me safe thus far and grace will lead me home.”


Marie has been married to her sweetheart for nearly 30 years, is the Momma of four precious adult children, and grandma (Gigi) of two adorable little people. She enjoys reading, cooking, gardening, and conversing about any topic, especially her faith in Christ.

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