1. EVERYTHING IS GOING TO BE OK

We remember so clearly those first days following Ren’s Down syndrome diagnosis - the fear, the sense of loss, and the overwhelming weight of the unknown. Those emotions are the journey each parent has to travel when life does not go as planned for a child, but what we wish we had known was that it was going to be ok. It is true, that your life will be forever changed, and your future may not look as you had hoped or expected, but one day it will be ok and you may even find yourself infinitely grateful that things didn’t go as planned. We're not saying it won't be hard, that there won't be sleepless nights and tears, but what journey as a parent is without those challenges? If only we could have known the breathtakingly, beautiful journey we were about to embark on.

2. WE ARE GOING TO BE SO PROUD

A study published in the American Journal of Medical Genetics found that 99% of parents said they loved their child with Down syndrome, and 97% were proud of them. Additionally, 79% felt their outlook on life was more positive because of their child. These numbers don’t lie - you will think your kid is the most amazing kid ever. Having Down syndrome isn’t going to define their lives or yours. As your child, they will be a perfect little human who will drive you crazy, tug at your heartstrings, and become the absolute center of your world. We often joke, “What’s up with the small percentage of parents who don’t feel this way?” and always come back to the fact that some people can’t understand how lucky they are. The reality is, that your child with or without Down syndrome will bring an immense amount of joy, pride, and positivity into your life.

3. OUR FAMILY IS GOING TO BE BETTER BECAUSE OF IT

According to research from the Journal of Intellectual Disability Research, families of children with Down syndrome often experience strong family cohesion. Many families report that having a child with Down syndrome brings them closer together and strengthens their relationships.

4. HAVING A SIBLING WITH DOWN SYNDROME IS AMAZING

A survey conducted by Brian Skotko, a medical geneticist at Massachusetts General Hospital, found that 94% of siblings of children with Down syndrome reported feeling proud of their sibling, and 88% felt they were better people because of their sibling with Down syndrome.

5. WE WILL LIVE A BETTER LIFE

The Global Down Syndrome Foundation cites that many families report their child with Down syndrome brings joy, humor, and perspective to their lives, enhancing their overall family dynamic and happiness.

6. WE WILL NEED SOME HELP BUT THERE ARE SO MANY RESOURCES

Families with a child with Down syndrome often find strong support networks through local and national Down syndrome associations. These networks provide resources, advocacy, and a sense of community, contributing positively to the family's overall happiness and resilience .

7. OUR LIFE IS GOING TO BE DIFFERENT… IN A GOOD WAY

A study in the Journal of Intellectual Disability Research found that while parents of children with Down syndrome may experience higher levels of stress, they also report a higher sense of purpose and fulfillment in their parenting role compared to parents of typically developing children.

8. OUR MARRIAGE WILL BE STRONGER

Contrary to common misconceptions, research has shown that having a child with Down syndrome does not negatively impact marital satisfaction. In fact, many couples report that the experience strengthens their relationship and enhances their teamwork and communication skills.

9. DOWN SYNDROME WILL NOT DEFINE YOUR CHILD’S LIFE

When you have a child with Down syndrome, well-meaning people will tell you what your child "may never" accomplish, thinking they are preparing you for future challenges. However, nobody would tell the parent of a neurotypical child all the things their child might never do. The truth is, no one can predict what any child will like, dislike, excel in, or struggle with and it is no different if your child has Down syndrome. Don't let anyone define the limits of your child's potential or your journey together. There is an infinite world of possibilities out there and we have found the secret is to embrace life, have fun, and discover the possibilities together.

10. WE WOULDN’T CHANGE A THING

Maybe not today or tomorrow, but one day you will look at your child and not see a disability. Instead, you will see an incredible human being living a beautiful life. You'll see someone who makes you laugh and cry, someone with strong likes and dislikes, opinions, and beliefs. In that moment, you will realize you wouldn't change a thing. For us, it was impossible to know in those early days that one day we would be sailing around the world, inspired by how incredible Ren would become. We couldn't foresee how Ren would help us view life differently, making us kinder human beings, or how just the thought of our son would bring smiles to the faces of those who know him.

SOURCES

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Having a son or daughter with Down syndrome: Perspectives from mothers and fathers. American Journal of Medical Genetics Part A.

Cuskelly, M., & Gunn, P. (2006). Adjustment of children who have a sibling with Down syndrome: Perspectives of mothers, fathers, and children. Journal of Intellectual Disability Research.

Skotko, B. G., Levine, S. P., & Goldstein, R. (2011). Sibling experiences: Growing up with a brother or sister with Down syndrome. American Journal of Medical Genetics Part A.

Pit-ten Cate, I. M., & Loots, G. M. (2000). Experiences of siblings of children with developmental disabilities: Sibling autonomy and parental influence. Child: Care, Health and Development.

Hodapp, R. M., Ly, T. M., Fidler, D. J., & Ricci, L. A. (2001). The effects of the child with Down syndrome on maternal stress. Journal of Developmental and Behavioral Pediatrics.

Global Down Syndrome Foundation. (2021). Family Impact and Support.

National Down Syndrome Society. (2021). Support for Parents and Families.

Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: Parental stress and involvement in childcare. Journal of Applied Research in Intellectual Disabilities.

Van Riper, M. (2007). Families of children with Down syndrome: Responding to “a change in plans” with resilience. Journal of Pediatric Nursing.