What the future holds

The last couple of days Michael has been out of town for baseball and I’ve been home with the kids. Luckily, Bridget has been (mostly) in good spirits and we have had lots of time together as the summer is winding down. This “alone time” has also provided vast amounts of reflection. 

I feel like I’ve been denying the inevitable. It’s easy to say that my child will continue to regress...but to actually watch it...to notice that a plethora of words and phrases have now vanished...to observe her unsteady movements...it’s gut wrenching. To watch my son surpass my older daughter in most every facet of life....well there’s just no words to describe it. I got out a shape puzzle just today to see what would happen. Bridget was never able to do puzzles, in fact, she would rather chew on the pieces. Luke, however, immediately placed the star into the correct spot and my eyes promptly welled up with tears.

In preparation for school starting Bridget did a few hours of extended summer school (the bus picks her up and she spends time with her sped. teacher at school). The struggle to climb onto the bus was not something I was prepared for, she used to be able to climb the steps just fine. I was asked what my goals were for Bridget during that time. Seems like a typical question right? Well I honestly couldn’t think of any. My mind went blank. 

I ended up basically just asking for one-on-one time with her teacher, and to get used to being in the building again. I know she loves the bus as well as her teacher, so that is easy. However, I’m struck with what the future holds once again. The fact that the regression will only continue from here on out. How will her IEP goals change? What sort of regression will Bridget make this school year? Those questions were among many others churning in my head. 

I’ve always struggled with the unknown. I like to be prepared and organized. But this....Sanfilippo...it’s anything BUT that. {Anticipatory} Grief is one hell of a roller coaster ride. 

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