Shiloh and Sara were first introduced via a wonderful social media based national children’s stroke and hemiplegia organization and then became fast friends in person. We realized that in each other we had found another scared and determined mama, just minutes up the road. We quickly came to realize that both of us had the same exact feelings; As common as pediatric stroke is, particularly in a major metropolitan area, access to resources in the Kansas City region proved extremely difficult to navigate, despite having backgrounds in healthcare and childhood development. Meaning, we KNEW how and where to find resources and it was STILL not easy, particularly when you are trying to care for a child that is requiring a bit more attention than the typical child. We had to call in favors, hound, and scrap.
We wondered, “What is the parent with zero developmental or medical background supposed to do? Where do they turn?” Our quest to help other stroke parents and children has been a constant labor of love. When we went to find resources in Kansas City we discovered that there were so many wonderful options, but many were a bit difficult to find. Further complicating the situation, utilizing insurance and finding contact information could prove difficult.
We still have difficulty with timely care appointments, but that is due to lack of specialist resources, not complete unavailability. Something had to be done to give parents in the Midwest hope for their children and make their paths slightly easier to navigate than ours have been. We both operate on the idea of, “If not us then who, and if not now then when.” It has been wonderful to meet other people walking a similar path to our own and know that we can all help ease each other’s burdens and frustrations. All while loving our children and watching them achieve things that many times their exam findings were indicative that they would be unable to do.
Stroke survivors are not defined by their diagnosis, and can prove to do unbelievable things if they have a timely diagnosis, fast access to care and are surrounded by people who love them and want them to succeed. We are determined to be those people, for both our own children and for others. We are beyond grateful for all of you who have taken interest in our foundation, and loved both our children and children you’ve never met like your own through volunteering, support and donations. Thank you from the bottom of our hearts.
– Sara and Shiloh