Jill has one child and lives in Elyria.

How are you and your family dealing with the COVID-19 pandemic?

My husband works from home now and we don't go out nearly as much as we used to. We spend a lot of family time watching movies at home.

What do you do to relax?

Watch terrible reality TV shows.

What benefits has Connecting for Kids brought to you and your family?

We have met other families with challenges like ours through CFK.

Which have been your favorite Connecting for Kids resources?

The CFK Complex Needs Facebook group.

If I could go back in time and talk to myself the day we got the diagnosis I would say...

It's all going to be alright. Your child will do her very best because YOU will do your best.

What I worry about most…

When my daughter will no longer be here. Her life expectancy isn't long and the thought of being without her takes my breath away.

The hardest thing for me to learn was...

To have patience. I still struggle with this. I have to be the nurse, the driver, the therapist, the research team, etc. All while waiting on others to do their job, especially the insurance companies!

Do you have any recommended resources such as blogs, websites, or books that we can share?

Check out A very SPECIAL NEEDS Christmas on Facebook. It is filled with amazing ideas.

Is there anything else about your journey that you would like to share with other parents?

We always remind ourselves to "Just keep swimming.”