About Us
Kourageous Karter Foundation
Our Mission
To make life better for medically complex kids and the people who love them.
Our Motto
Kourage: Strength in the face of grief or pain.
By definition courage means "strength in the face of grief or pain." Karter's life and our story is the epitome of this word, as we live with grief and gratitude every day. We hope to use this page to inform, educate, connect, and support people on all aspects of what life is like raising him.
Disclaimers….
While we’ve learned a great deal through our experiences, we are not licensed medical doctors or attorneys. Although we have a PhD in being parents to a child with a severe brain injury, nothing on this site should take the place of your own medical team’s advice. Likewise, if you have specific questions about disability law, contact an attorney.
We are also only 5 years into this journey. We certainly have a LOT to learn and a ways to go! By no means do we “know it all.” Everyday teaches us something new. We plan to update, edit, and add to our website along the way. We HAVE, however, learned a TON that we wish we would’ve known from the start. If we can help other parents learn from our experiences, then we have served our purpose.
Our site exists simply as a platform for quick resources, connection, and support. Please keep that in mind!
Karter's Story
Karter was born on 6/26/16 via emergency C section after I, his mother Tiffany, experienced a spontaneous fetal maternal hemorrhage. Other than decreased fetal movement that day, there were no signs or symptoms that he was in distress. As a result of this rare type of bleed, Karter suffered a massive Hypoxic (lack of oxygen) Ischemic (loss of blood) Encephalopathy (affecting the brain) injury. This is otherwise known as an HIE injury.
After 4 days in the NICU, the team of doctors gave us no other choice but to remove life support. They explained his brain injury was too severe to have any quality of life. We were told he would never be able to suck, swallow, breathe, see, hear, walk, or talk on his own. It was beyond devastating. On July 1, 2016 we removed life support, and we braced ourselves to say goodbye forever. To everyone's surprise Karter survived 2 days in the NICU after life support was removed, so they sent us home on hospice. It was an excruciatingly painful and agonizing time.
Karter continued to fight for his life during the next weeks, and thanks to our decision to readmit him to the hospital, his life was saved. The first year of his life was a giant roller coaster, not knowing if Karter would live to see his first birthday.
Not only did Karter survive, but he is thriving and progressing at his own rate. Of course his injury has left him with several challenges. He has been officially diagnosed with spastic quadriplegia cerebral palsy, microcephaly (secondary to the HIE injury), has a g-tube, is considered non-mobile/non-verbal and has seizures. While he is globally delayed in every sense of the word, these labels do not define him. He has the sweetest, silliest personality and most infectious smile! And, most importantly, he brings us joy, gratitude, and perspective of what’s important.
See his caringbridge link for the full story of the first year:
The "Why" Behind our Foundation
Paying It Forward
When Karter was on hospice, our small-town Iowa communities rallied around us and hosted fundraisers for our family. Because of the uncertainty of his prognosis, I took a leave of absence from my career, leaving us down to one income. At that time, we had no medical assistance or resources, so the fundraisers saved us that first year. Besides the tremendous financial contributions, the fact that so many gathered together in support of our family during our most difficult time was humbling, moving, and something that left a GREAT impact. We will never forget how that made us feel. We knew someday we wanted to pay it forward and give back. Truly, we feel responsible and called to do our part to make things better for families like ours. We want to use our skills, resources, and passion for helping others to make a difference.
What We’re About
Encouragement and Connection
Karter’s birth injury and subsequent diagnoses left us with shattered hearts, mountains of fear, and insurmountable doubt about how we would “do” this life. From the moment he was born it felt as though we were hit by a giant F5 tornado, with no resources to clean up our disaster. How could we ever recover? What does this mean for our child’s life? Our family’s future? At times it seemed the grief clouds would never clear.
But we are here to tell you, with time, the storm does subside. The rain lets up. Real sunshine will appear again. And, although the weather will always be unpredictable, you CAN navigate it. Albeit difficult, you WILL figure this out. And if you’re on our site, I can promise you that we are here to help in any way we can along the way. You are NOT alone. We see you. We are WITH you.
