JACOB BY SOULA MILONAS
Jacob has fought for survival from the moment he entered this world. Born extremely premature and weighing only one and a half pounds, he was very vulnerable and frail. At only 12 days old, tiny beautiful Jacob contracted meningitis making him fight even harder to stay alive.
Just a few days shy of being one month old, Jacob was taken to the operating room and Dr. Aronyk inserted a shunt to help relieve the pressure from the CSF fluid filling in his brain. Little did we know this was only the beginning of our long medical roller coaster ride. After six months in hospital Jacob was ready to finally go home. He lasted four days at home and ended up with an infection that spiraled into eight more months in the hospital and many more surgeries.
Jacob’s battle continues to this day. He has cerebral palsy, svc (blood clot syndrome), seizures, stomach cysts, irregular heart rate, and blood pressure issues and is on multiple medications. Jacob has had 92 operations and over 300 procedures/scans in his short 13 years. He has been on life support and we have come close to losing him many times.
Although the journey has been hard, sad, and scary, it has also been amazing, beautiful and life-changing. Jacob’s strength and fight for life is unreal. I thank the Stollery Children’s Hospital, pediatric intensive care, the neurosurgical team (Wendy, Dr. Mehta, Dr. Pugh and Dr. Aronyk), unit 4D staff and everyone else who holds the hospital together. My Jacob is still here and I am so grateful!
God only knows how much longer I will have with this amazing little hero, and I take in each second of everyday and hold on to every smile, laugh and memory as tight as I can. Even though it’s been so hard, I feel so lucky to be his mom and be part of his journey along with all the amazing family and friends that are right here every step of the way.
Every day we wake up we have a choice: we can be angry, frustrated and unhappy or we can live like Jacob and be happy and grateful, taking on whatever life throws our way. We make every smile count and share love, hope and strength with all those around us! Jacob is a true superhero, he is my world and he has taught me more than I could ever teach him. I’m the luckiest mom in the world to call him my son!