Epilepsy Blog Relay: Handwritten note launches one family into the world of special needs

I had been searching through my son’s medical files and there it was, a slip of paper measuring 3 inches by 4 inches with handwritten names, phone numbers and tips on what I should ask for when calling the numbers listed. The piece of paper noted to ask about, “PT/OT/Speech for children diagnosed with special needs, ask about vision, braces and orthotics.”

This story is part of the Epilepsy Blog Relay™.

At first I was surprised that I found this slip of paper out of the boxes and boxes of accumulated paperwork after all this time. I then laughed a little because in today’s world this important slip of paper would never be just scratched and handed to me in the casual way I received it. What gets me the most though is how at the time of receiving this note I had no idea what was to come.  When that paper was handed to me back then, that was a defining moment in my life.  That moment in my life would start me in a direction where I would be challenged and changed in ways I never saw coming.

The real moment my life was turned upside down was the day after my son Andrew was born. After a very long labor, I finally got to meet him. He was two weeks early, beaten up from his entrance into the world with a bruised and swollen face, but to me he was just perfect.  I was a first time mom more than ready to get to know her newborn son. I was just starting to embrace that role when our nurses noticed Andrew had turned blue. He was rushed off to the NICU for what would be a fourteen day stay. A fourteen day stay to only be told Andrew’s brain “had bleeding in multiple areas, and to take him home”. At discharge from the NICU the doctor suggested we return in four months for a follow up clinic to the hospital to check on Andrew’s development.

It was at that follow up clinic the doctor suggested with this casual note that I should call to find services for Andrew as he was already showing signs of a delay in his development. This handwritten paper full of jotted down notes was all the direction I received to get the help I needed for my son.  At this point, I wasn’t at all aware of the extent of what Andrew would be facing as he grew.  This simple note was my actual first leap into the intimidating world of raising a child who came into this world with a damaged brain.

With the doctor’s direction, and my persistence with the phone calls, the note did lead to Andrew receiving services in all areas. Our home would soon become a revolving door for a host of therapists that would work their hardest to guide Andrew’s development. We would visit regularly with doctors from a variety of specialties and hospitals who would ultimately diagnose Andrew with Cerebral Palsy, Cortical Visual Impairment, and two rare forms of epilepsy – Infantile Spasms and Lennox Gastaut Syndrome. Through each and every devastating diagnosis Andrew would remain a sweet, courageous, strong and resilient fighter.

Now, with these diagnoses on top of being Andrew’s mom, I was a therapist, a pharmacist, a researcher, a dietitian, an advocate, a teacher, a far cry from my prior life of administrative work in an office. It hits me seeing this note how different life was back then.   23 years ago I was newly married, living in my first home, eagerly expecting my first child and ready to take on the world.  I wanted to be that mom who arranged kids play dates, and fun kid themed outings, and to soak in all the miracles that a baby easily achieves without even a second thought.   How very different our lives would wind up being.

Now, so many years later Andrew lives with multiple disabilities.  He cannot walk, or talk, see very well, and daily seizures take their toll.  Andrew and his 22 years of growing and living with these disabilities have made a great impact on me, and on my entire family.  I’ll be the first to admit, Andrew’s disabilities can be near impossible to come to terms with.  When he is accepted for the person he is despite all that he struggles through,  I have found the overwhelming joy that there is in being a mom, despite the complete change in direction our lives took.

It would have been nice to have seen these comforting words back then on that 3×4 inch piece of paper as we were facing such a different direction.

Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.