Foster has a very rare condition, caused by a genetic mutation to his SCN8A gene but the larger umbrella diagnosis is Epilepsy.
Raising Foster the last 3 years, has been one of the absolute best blessings of my life. He teaches us profound lessons on a daily basis. He radiates love and happiness more then anyone I’ve ever met; despite the hardships he faces in his life. He is the definition of pure innocence. He literally can do no wrong.
Our life is certainly not without chaos. At best, we still spend about three days a week at the children’s hospital, for regularly scheduled appointments and treatments. Foster is followed by the Neurology clinic, Endocrinology clinic, Nephrology and Urology clinics, Pulmonary clinic, Cardiology clinic, G.I. clinic, he see’s a Pediatrician, a Physiatrist and physio, occupational and speech and language therapists.
This little boy is such a perfect human in so many ways, he never compares himself or feels sorry for himself and his lack of mobility and movement, doesn’t stop him from feeling the joy of being included. I am constantly reminded of how much I have to learn from a little boy with no words to speak.
I want to show people the light that lives inside of Foster, the twinkle in his eye, the joy that radiates from him on his good days. Because I know most people don’t have the amazing opportunity that we have to experience a deep and intimate relationship with someone like Foster. I hope that our life can shed some hope to those new families out there just getting their diagnosis; that you can experience happy moments and grief at the same time. There is a cloud of anticipatory grief that comes with a life threatening diagnosis but we try our hardest not to live there. It’s possible to lead a really normal and happy life despite all of this. Because that’s really what I needed to see back then. I wanted to see what the future might hold for Foster and I wanted to see that it was going to be okay even if it wasn’t as I’d envisioned it to be.