When I had my other children, I didn’t have visions of any of them getting married, going to college, or becoming president. They were babies in my arms, reaching toddlers, defiant preschoolers, and never the visualization of the person they would become in the future.

It was immediately different when Josh was born. He was born early on a Sunday morning and most of that day was spent trying to get him away from whomever came to whisk him off for the testing of the moment. Monday was different. That was the day I started seeing the future and I cried because it was scary to me.

When I was in high school I did volunteer work at a summer day camp for children with special needs. I would go with my friend, Ellen, who was much more serious about it because she planned to become a Special Education Teacher. I went because it seemed like a good thing to do. Little did I know those days would come back in a flood of tears in a hospital bed in Ohio in 2002.

Yes, Monday night WAS different. I kept seeing two of the young men from my group at that summer camp who had Down syndrome - Jerry and Paul. I could see Jerry flapping his hands and hugging people. I could hear Paul saying his favorite food was “skekie” (spaghetti). Paul was thinner than Jerry and had darker hair but they both had crew cuts. My mind tapped into a file in my memory and retrieved it in pristine condition. The two young men that had been a source of smiles when I was a kid now scared me. The crystal ball was activated.

That was and continues to be the hardest part (for me) of having a child with Down syndrome. It was also the first time I really understood what it meant to take it “one day at a time.” I had to learn to live in the moment with Josh as much as I did with my other children.

And yet, there has to be a balance between living today and preparing for tomorrow for Josh. We’re in the process now of setting up a Special Needs Trust to help care for him financially in the future. Then there are articles like this reminding me that I need to nurture my other children so they will want to participate in Josh’s future.

If only the crystal ball was clearer.