Family Corner: Finding Joy in a Different Bloom

Published on in Trisomy 21 Update

Nate and Lily with their Family “Bloom where you’re planted.” The catchy saying often seen on inspirational posters has become my life’s mantra. As the mother of four children — two of whom have Down syndrome — I find myself uttering these words on a daily basis.

We all walk through our lives not fully knowing what the road ahead will bring. My husband and I were thrown a curve ball when our son Nate was born in 1996. His Down syndrome diagnosis was totally unexpected and we had very little knowledge of the developmental disorder. We were devastated, to say the least. But, even then, I could feel that a small seed had been planted in a garden called Down syndrome.

Fast forward seven years and we found ourselves once again with a diagnosis of Down syndrome — this time for our daughter Lily, who was born in 2003. As we shook our heads in disbelief, wondering how this happened again to our family, the seed that began seven years ago had become a small tree. And no matter how rocky the soil was, the possibility of a bloom existed.

Nate and Lily have succeeded in ways I never thought possible. Physical accomplishments that my older two children, Annie and Dylan, mastered with ease took Nate and Lily much longer. I learned to find joy in smaller achievements. I learned to embrace this new world and find ways to help Nate and Lily thrive.

In the past 22 years, my husband and I have joined Down syndrome support groups and become Special Olympics fans and coaches. We’ve spent numerous hours at doctor offices and hospitals and we have enough IEP reports to wallpaper the Taj Mahal! All of these represent areas where we had no prior knowledge and never thought we’d need to become educated about. But these were our kids. We were committed to doing all we could to help them. As we stretched our roots out deep into this soil, we found that we could grow and bloom.

Life with a child with special needs is not an easy path, and life with two can be doubly trying. Embracing this life and accepting its challenges has opened up a world filled with tremendous support, love and acceptance.

Therapists and teachers have become family friends. Strangers have warmed our hearts with words of encouragement and praise for our children’s accomplishments. It is these relationships and chance meetings that continually remind me how truly blessed my life is.

Contributed by: Carolyn Seagraves, Trisomy 21 Program parent


You Might Also Like

Trisomy 21 Parent Peer Program

This program offers social, emotional and informational support to parents, caregivers and siblings of individuals with Down syndrome.

Kate

The Power to Be Unstoppable

Born with Down syndrome, 18-year-old Kate is determined to reach her goals.

evan and his parents

Evan's Story

Born with Down syndrome, Evan has been treated at CHOP since he was a baby. His family shares how that care has made a difference in Evan’s life.