When you start a family, you aren’t just expecting, you have expectations. We had this vision of how life was going to be. My daughter was going to love horses. She would ride at the Devon Horse Show in the short stirrup division. We would travel to Maui, visit friends and explore the island. We were going to live on a farm, have a garden and grow our family.
Well, life doesn’t always go as planned. Most everything I dreamed did come true, but not in all the ways I thought they would.
We had just moved back from CA to NJ. Jessie said her first words at 18 months “this is good”. Every time I took my first bite of pizza I would say this. She probably only heard this phrase spoken 15 times in her short life. She wasn’t walking but was cruising along furniture. Finally, at 22 months, she took 10 full steps before falling. Even though we could see her challenges, we were convinced she was pretty smart.
When Jess was 2 1/2 we had an appointment with a developmental neurologist. He gave us the diagnosis, idiopathic Cerebral Palsy, which means cause unknown and CP is just a general catch-all diagnosis. He advised us to “just have another baby and be happy with that one”. My internal response was “we will just have to prove you wrong!”. For years I listened to the doctors and teachers and relied on their expertise, but at the same time, I questioned everything they said.
Turns out this developmental neurologist was right that Jessie was going to have a difficult path, but he was wrong about many things. It took us another ten and a half years before we would finally get the true diagnosis. We learned that Jess was born with Angelman Syndrome. We were that one in every 25,000 to get this diagnosis. Unfortunately, we had many other medical issues ahead of us.