Keeping It Real: Soren and Rindi, Part Three

Keeping It Real: Soren and Rindi, Part Three

By Rindi and Soren

We recently connected with Rindi and her son, Soren, and asked them to share their personal experiences with cerebral palsy. The final part of Rindi’s story is below. You can check out the first part of her story and also check out Soren’s story.

What supports are most crucial to you as a caregiver?
If you are lucky enough, and I feel we have been, family support. Their unconditional support and love are powerful. A close second would be the relationships we have built with Soren’s providers, his therapists, doctors, and teachers who have been an incredible well of experience and knowledge. Being in the systems, they have been able to provide insight and guidance to help us achieve for Soren what we may not have otherwise.

What do you want parents of babies, kids, and teens with CP to know?
It is okay to feel everything you are feeling. You are not alone. I want to acknowledge the seemingly impossible task of caring for and raising a child in a world that is not built with them in mind, nor for parents and families to successfully navigate. Know you are trailblazers and make this world better for their children and for the families that will come after.

What do you wish you’d known before Soren received a CP diagnosis?
I’m not sure if knowing any specific things beforehand would help. This has been a journey of learning by doing: seeing what works, what doesn’t and finding ways to be flexible. Like with many experiences in life, you can’t really know what it’s like until you go through it and we’re still learning every day as he continues to grow into adulthood and his needs and opportunities change.

Is there anything else you’d like people to know?
Don’t give up. Ask questions and get second opinions. Know the decisions you are making for your child are made with love, intention, and are the best choices for your child at that time. Find your community.