Sunday, October 11, 2015

Down Syndrome Awareness Month - A Letter to myself

October is Down Syndrome Awareness Month and through the month I will share various things relating to Down Syndrome. If I were to write a letter to myself as a new mom, I think this is the letter I would write. Eleven years of parenting a child with Down Syndrome gives me a different perspective.

Dear Mom or Mom-to-be of a Down Syndrome child,

Congratulations! You are have or are having a baby which is a wonderful gift from God. You have an extra blessing in the 21st chromosome. It does mean that your dreams for your child will be adjusted. Love and enjoy your blessing of a child.

First of all, get through the physical issues. It might be heart, feeding, or stomach or even a combination.  Once the physical things are corrected or treated you will be able to move on. Then you can begin therapy. Keep cuddling and enjoying your baby. Read books aloud, lots of books.

Life will be different with a Down Syndrome baby, you will be thinking about therapies, researching options and different approaches. Know what you can get locally through the hospital or schools. Begin to build a good relationship with a doctor who will partner with you for the best for your child.

There are so many things to consider -- neurodevelopmental program, nutrition, supplements, educational opportunities. Talk to other parents when you are ready, learn, ask questions, listen. Find the resources, read the reports, research the programs, you are the best advocate for your child. Some find support groups helpful. Others find them depressing. Some jump into the Buddy Walk and others never do. Find what works for you along each season of life and just like the seasons it can change.

Don't live with regrets. Don't regret that you didn't research and find essential oils earlier. Don't regret that you didn't continue the neurodevelopmental program longer.

At the beginning there is so much unknown. How smart will my child be? When will my child sit up? When will my child walk? What will the first words be? Those are true for both a baby with Down Syndrome and any other baby.

Down Syndrome opens you to a new world. You make connections and friends because of it. You meet people who have children, sisters or brothers, nieces or nephews, grandchildren with Down Syndrome. You have an opportunity to show God's love to the world through your child.

As you begin the journey with so many unknowns remember what Corrie ten Boom said, "Never be afraid to trust an unknown future to a known God."

Celebrate each milestone, enjoy each day knowing that this is the child God placed in your life. You will learn so much about yourself and God through this child. Record the milestones, reflect on God's goodness, life in God's strength.


a mom with 11 years of experience
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  1. I have a niece who has Down Syndrome. I totally agree with you that DS children are a wonderful gift from God. Partially because of my DS niece, my mom accepted Jesus Christ! Also because of her, our family relationship is getting closer and closer.

    1. Thank you for sharing that -- it is great to hear how God is using DS in your own family to bring you closer to himself.



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