The Problem with a Crystal Ball

This weekend we attended a 22q family meeting at UC Davis' MIND Institute (MIND =  Medical Investigation of Neurodevelopmental Disorders) in Sacramento. All week I was nervous about going to this event. It was on the day that other cities were holding "22q at the Zoo" events, but this was the only event we heard about in our area and instead of doing a day at the zoo they called it "22q with the Zoo" and had the Sacramento Zoomobile come bring animals to the kids who were in the care of babysitters (UC Davis students volunteering) while the parents were in the meeting.

Calvin had a blast. Of course all the babysitters loved him and doted on him and went on and on about how awesome he is. #tellmesomethingidontknow ;) Henry was even a pretty good sport about hanging with the babysitters so that James and I didn't have to keep him with us. Calvin got some fancy face/body paint and got to see some reptiles from the Zoomobile. 

These pics were taken at a restaurant after the event. 

The meeting was kind of like a conference where different researchers and doctors gave short presentations on different aspects of development and care for kids/people with 22q. Feeding and eating... general medical needs and care... speech development and concerns... all the way to the really fun stuff like early signs and treatments of psychosis. Yiiiiiiikes. See why I was nervous? Who wants to sit in a meeting and hear about how your adorable two year old is at higher risk for developing schizophrenia??

Deep breath.

I didn't want to go. I felt like we had enough information to support Calvin right now. But James - being all science-y and knowledge-is-power-y wanted to be a pro-active parent and go hear the latest research. I do think it was the responsible thing for us to do. But being responsible is hard.

The last presentation was a panel discussion which included two young women with 22q who were there to share with us about their "transition to adulthood." One of the girls was an aspiring filmmaker who had worked with an inclusive film program at Davis (I think it was at Davis...) and she showed us a short film she had edited and produced. The other girl had a Master's degree in some area of child development (sorry, I don't remember the actual name of her field!) and she was currently a teacher. A 22q adult with a Master's degree is a pretty big deal. We were impressed. She was also married. 

It was encouraging to see these two women because it shows us that some people with Calvin's syndrome grow up to live "normal," healthy, and fulfilled lives. It took them a great deal of work and a great deal of navigating services to get the support they needed (for school/work/medical stuff), but they're all grown up and doing it on their own. 

The thing about having a kid with a diagnosis is that it's possible to make predictions and guesses about his future based on other people with the same diagnosis. Seeing those women was a little bit like looking into a crystal ball and seeing that college, graduate school, and marriage are all within the realm of possibility for Calvin. And that's a great thing to be able to hold on to - this vision of Calvin as an independent and successful adult. 

The problem is that the crystal ball also shows all the scary and worrisome possibilities. The research on the 22q population shows us lots of increased risks. Medical problems. Speech disorders. Learning disorders. Anxiety disorders. Psychosis. 

And I'm like noooo! Why did I look?! I didn't want to know those things! It's a burden to know those things. It's a burden James and I have to carry because it's our job to see them coming, catch the early signs, and get him help. A common theme from all the researchers and docs talking about all those possible disorders is that early interventions show the best results. Getting help as soon as possible is the best solution anyone's got at the moment. 

But I have to hold on to that vision of Calvin's possible happy future. How do I do that with the word schizophrenia haunting the back of my mind?? Then of course, there's also Henry and the crystal ball of possible outcomes for Dup15q!

Of course this "crystal ball" only shows possibilities. Only Calvin and Henry can show us what their outcomes will be. But I feel like these diagnoses have robbed us of the freedom to be fully optimistic about their future. We have to find a way to hope for the best, to believe in the best possibilities for them, while also working our asses off to mitigate the problems. And it's not just about looking to the future. Even if we put aside the crystal ball and focus on the present, it is still hard to balance caring for their needs and worrying about their struggles, with enjoying them and appreciating how wonderful they are. 

I remind myself that all parents have to do that. We all have to balance the effort of parenting with remembering to enjoy our kids. We all have to balance hope and worry for our kids' futures. From what I can tell, the difference for special needs parents is that crystal ball. Not every parent has doctors and researchers listing probable outcomes for their children. It's a blessing and a curse. And we're doing our best with it.