Dave, I love you but you must agree- today's date has to be about the most depressing date ever.
Our first real alone time in months was spent mostly at an autism conference. We listened to three different lectures about occupational therapy, emotion awareness and structuring playdates for autistic children. We also walked through the vendor area and talked with some people about horse therapy, PT/OT/ST and an upcoming lecture on "Getting insurance companies to pay for therapy." Dave picked out a couple toys for Max at the "Autism Store" while I picked out some books. Exciting, right?
After the first lecture and romantic stroll through the vendor fair, we headed out for a lunch break. Romantic topics of conversation: autism therapy, insurance company, dead child. When the so-so food had been eaten, we were off to the next destination... the cemetery.
Although it was beautiful there- the thick fog turned all the trees into a fuzzy white- I wouldn't exactly call it an intimate stroll through the park. The snow was up to our knees and it was more than slightly chilly. We spent some time at Peanut's gravesite before trudging back to the car. By now we were wet and my ears and head hurt from the damp, cold air.
As we headed out of the cemetery, I noticed the headstone of a little girl named Nadia had been cleared off and birthday balloons left for her. My mom and I had seen this headstone earlier this year and as messed up as it sounds, I couldn't believe how beautiful it was. By the time Dave and I were out there together, it had snowed too much for me to show him. So when I noticed that it had been cleared, I hollered at Dave in excitement to stop the car so we could get out and see it. How screw up is this? My big moment of excitement on a date was seeing a headstone?!
Nadia was only about 5 years old when she passed and her parents bought an incredible headstone to memorialize her. Three pictures of her, including one of her running on the beach, are laser etched into the bronze. It's not like some pictures you see on headstones- that don't necessarily even look like the person they are supposed to. But it looks like an actual picture on the stone. This is what I want for Ellie. I want people to walk by her headstone and know that this is Ellie's spot. And see how beautifully radiant she was. I won't however, go into how much I dread putting a permanent marker at Ellie's spot...
After the cemetery we stopped at the gas station for dessert (gum and a Skor bar) before heading back for the last two lectures. We spent another two hours learning how every single experience of Max's life will likely have to be orchestrated by us in order to achieve "expected" and "functional" behaviors and reactions. We learned everything must be prepared for and intentional and executed with completely psychotic precision and control. Now, I'm not saying I bought into all of it, or that it all even applies to Max. And yes I know that we must pick and choose what works for Max and for us. But right now, HOLY SHIT! there is a lot to know and sift through.
I thought I was ahead of the game by taking two Tylenol this morning before we left in anticipation of the headache that was surely going to appear. Two Tylenol is not enough for a date like this.
I want to know how my life turned into this?? When did my life turn into a date being an autism lecture and trip to the cemetery to visit our daughter's body? Seriously, the worst date ever.
Remembering February 5, 2010About this exact time last year, Max was sound asleep in his crib and I was sitting on the couch watching TV with Dave and Ellie. Ellie was cuddled up with Daddy and just starting to find her blankie with her fingers.
Now, it's just Dave and I on the couch... sigh...