I want to know how this is going to go…

Despite what I know to be true, despite everything I tell other people when they are getting ahead of themselves, despite how I say one of the greatest gifts of Down syndrome is learning to live in the moment – this thought still crosses my mind some times.

I know I can’t know. That there are a million and one scenarios that are possible. That if I’m really honest, my typical son’s future is as uncertain as my daughter’s. That the unknown is actually quite fun when you get the hang of it. And that frankly, I know that that’s life. But I still have those moments where I wish I had a crystal ball to be able to see what she’s going to be like when she grows up.

Maybe I just want some reassurance that everything is going to be okay? I want to know that in the end all these conversations about school placement and worries about speech and sleepless nights over cognitive development and all of these Am I doing enough? moments were all worth it. I want to know that it wasn’t all for naught, that in the end it all mattered.

But you know what? No one can know what results their decisions in life will yield. Will Frankie have a better future or be more successful based on any of these decisions I’m making for her now? It’s hard to imagine anything I am doing will have such an impact, and that’s why this parenting thing is so difficult. But you do what you can with your best intentions and the information you have. You close your eyes and take a deep breath and step on the gas.

I’m not a religious person but Down syndrome has taught me about faith. It’s not a religion or spiritual faith. It’s not a belief that a higher being is going to make everything okay. It’s a faith in love. It’s being content that no matter who your child turns out to be, he or she is YOUR child, the same child that you love now and will love then. It’s the knowledge that when he or she falls short of milestones, the love will take over. But it’s not a “That’s okay, I still love you anyway” thing. It’s not an overcompensating love. It’s an all encompassing love.

And that makes me realize that I do, in fact, know exactly how this is going to go…