My first husband died at age 37. He was diagnosed with terminal cancer, and lived just four months. Our daughters were five and seven years old.

I have written, many times, about my own grief journey, and moving forward through my loss.

Seventeen years ago, my younger daughter gave birth to her first child, a baby girl. I was relieved to hear my son-in-law’s voice on the phone, “Our baby is here.” Her stepfather and I had driven 200 hundred while my daughter was in labor. We arrived too late to visit the hospital, and waited until morning to see our new granddaughter.

The next morning when we walked into the hospital room, our daughter was crying. I asked my son-in-law, “Is everything okay?” He nodded. My husband and I sat down next to our daughter’s bed.

It was not okay.

“Our baby has Down syndrome,” my daughter smiled weakly through her tears.

Her stepfather reached over to hug her. I patted her arm, and felt a disconnect throughout my body and my soul. I was broken. This can’t be.

“Mom, go down to the nursery, and meet our baby.” Her husband went with me. I didn’t want to go. Scared of what I was about to face.

My son-in-law quietly thanked me for not crying in front of my daughter. I couldn’t cry. No tears. Maybe, I was stuck in the new-found grief.

I looked at this sweet baby, and experienced both profound sadness and joy. Fearful of what her future and ours would be like.

Later, I would cry uncontrollably, many, many times. For some reason, never in front of our daughter. Was I protecting her? Or me? She confided to a friend, “My mom hasn’t cried.” Her friend who had been with me several times in those first few hours, assured her, “Believe me, your mom has cried. Don’t worry!”

Later in the day, I held my granddaughter and whispered in her ear, “ I loved you before you were born.” She promptly burped!

Back at home, I raged at God, through my sobs, “My daughter lost her dad when she was only five, and now she has to deal with a disabled child. How can this be?”

Over the next several weeks, I sought help to deal with my grief, and visited with an acquaintance who had an adult daughter with Down syndrome. Hopeless. I needed something.

In the meantime, my husband searched for scientific research to learn more about our new reality. His way of coping with the situation.

Returning to my daughter’s home, a few weeks later, I was overwhelmed with all of the resources they had already found for their daughter. They channeled their grief into “getting things done.” My counselor suggested that I was helping them carry their grief.

I looked at this beautiful, sweet baby, with blond hair, big blue eyes, and worried for her future.

How can I help?

I remember once in those early weeks, my daughter, with tears running down her cheeks, shared with me, “Mom, she won’t go to my alma mater, but that is okay. We’ll find the best education we can for her.”

Through the years, they have worked tirelessly for their daughter, to obtain the school resources that are her legal right. Often, an uphill battle. Lots of important educational help fell through the cracks. Frustrating for all of us.

As a result of the struggle, my daughter eventually completed certification to become an advocate for children with disabilities. Locally, she is sought after by parents who know of her advocacy, and need assistance navigating their journey. She is frequently quoted in the newspaper, and has spoken to the media numerous times. She is her daughter’s biggest advocate. Persistent. Gracious.

Meanwhile, I heartbreakingly rejoice at each milestone my granddaughter achieves. Early on, she rolled over ahead of “typical” children! My daughter filmed this feat for any skeptics among her family and friends. I watched her walk into school, wearing a backpack, announcing, “Mom, I’ll go by myself.”

She’s determined. When I have a cellphone issue, she often can fix it for me. She has also taught her grandfather and me to use self checkout at the grocery store. Who knew!

Her brother, two years younger, is taking driving lessons. (She will never drive.) She is his biggest fan. He is so gentle. Teases her. She loves it.

Nowadays, I continue to live with the sadness, but realize how much this young lady has taught me.

Not every thing has to be accomplished on the first try. She persists. I have acquired a good dose of patience! She has instilled it in me.

She loves dogs, and they are attracted to her. Once a dog owner commented, “Dogs sense goodness.” She calls her own dog, “My sister.” A love fest!

As she approaches her 17th birthday, she is gaining a bit more independence. She has cat and dog feeding jobs, when neighbors are out of town. She loves having money in her big red purse. The purse belonged to her great grandmother.

Yes, my dream for her has been altered.

She has the tools and the potential to create her own dreams. For that, I am grateful.

 

Rosanne Trost is a retired oncology research nurse. She resides in Houston, Texas. After retirement she developed a passion for creative writing. Her work has appeared in a variety of print and online publications, including Chicken Soup for the Soul, Commuter Lit, Months To Years, and RavensPerch.