Our Story
Our daughter Kathryn came into this world earlier than expected. At 32 weeks, she weighed just 3.5 pounds but was healthy and on track to come home once she grew a little bit. Then she contracted an infection that led to meningitis and our entire world came crashing down.
Kathryn spent three months in the NICU, and underwent two surgeries before she was stable enough to come home. The damage from the meningitis caused severe damage to her brain and our daughter was diagnosed with Cerebral Palsy. Her Neurologist said that she may never walk, talk, see or eat on her own. To us, all that mattered was that she was coming home.
Kristina Smith
Parent Caregiver Life Coach
When my daughter Kathryn was born, my life changed forever. I was suddenly in a medical world, learning about a diagnosis that I knew nothing about. I watched the doctors and nurses care for her and I realized that once we left the hospital, her father and I were on our own to keep her healthy and manage her extensive care. I was terrified.
My baby girl was so tiny and fragile, yet I had seen her strength as she overcame a deadly infection and fought her way back to us. I didn’t feel qualified to provide the care she needed, but I also knew that I didn’t have a choice, she needed me. I grieved the life I had always dreamed of for her, and came to accept that her life would be very different than I planned, and so would ours.
Through a lot of trial and error, we developed systems to help us keep track of her daily schedule, doctor and therapy appointments, prescriptions and medical supplies. We organized our home and labeled virtually everything to assist us and her nursing team to find what we needed when we needed it. For a while, everything felt under control.
Then, just weeks before her seventh birthday, Kathryn was diagnosed with a severe case of RSV and pneumonia. She was directly admitted to the PICU where she stayed for nearly four months. She was discharged on oxygen, with a ventilator and a tracheostomy. Our daughter’s medical needs changed completely, and we had to learn to care for her all over again.
Caring for Kathryn has been both challenging and fulfilling. It took me a long time to come to terms with the fact that I couldn’t change what happened to her in the past, and I can’t predict what the future may hold. However, I can focus on making the most of each day by advocating for her and supporting her through all the highs and lows. Witnessing her accomplishments fills me with an indescribable sense of joy, and I cherish the honor of being her mom. She is my heart and my inspiration.
What I offer to families is the opportunity to learn from a parent that has been through it. I will share life hacks that I have learned along the way and help to shorten the caregiver learning curve. I will provide the peer support that I needed but was unable to find during the early years. I will advocate for your family.
If you are a parent caregiver and are struggling with acceptance, overwhelm, or just need support from a parent that understands, I want to help you.