Autism spewage. I think that says it all. I'm sick of everyone, myself included sugar coating Autism.
This is a personal blog about my son's Autism
and how it effects our everyday life and functioning. This is where I get to spew.
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Monday, October 1, 2012
Happiness by proxy
that DAN doc consult left me feeling
something like this.
Sadly, I was wrong about Jonathan's last chelation. On our last phone consult with our DAN practitioner I got the news he STILL has lead in his body per his last set of labs. I called my husband the day of the consult and desperately tried to hold back the tears while I was driving. I was consumed by grief, sadness over our future lost happy weekends, gone to chelation and the money, expense and aggravation spent to get there. One reason I love DH is his never ending optimism when it comes to J. He said to me, in a voice as calm as a still lake, "well that means he can improve more, so we'll do it". At that moment my tears dried and I calmed, shook by his insight. He was right, more chelation meant more room for J to improve. So I tucked my tail between my legs and accepted the fact that we have more chelation for J to complete.
Yesterday was our third chelation back on schedule. While most families are dressing in their Sunday best to go to church, we were packing the cooler with snacks, grabbing books and DVDs, and sending the kids to the bathroom for one last bathroom run. All hail Autism recovery, our sole religion. We got on the road late but since we've driven the route so many times we made excellent time. J took his IV like a champ and we were in and out in a flash. This process is getting easier on him too, thank god for that.
After chelation yesterday we went to the beach. The beach we visited is about an hour south of where we live. We would never normally take the time to drive there. We just happened to be in the area for J's chelation. It was a stunningly beautiful day. The beach has a marble mix of white and black sand, crystal clear aquamarine water and had a sky that exemplified the color "sky" blue. We swam, splashed, frolicked, hunted for shells and sharks teeth and had an effervescent time.
Oh gluten, you dirty, dirty gluten!
As we drove home feeling sun weary but soul sated this thought burbled up to my conscious thinking. I'm beginning to enjoy J's chelation and IVIG. Don't worry, its not "the enjoy like putting Pine-sol in my kids oatmeal, kind of enjoyment", its more like, that is our only family time and we are making the best of it, kind of enjoyment. I think unknowingly we've begun to make the most out of those days. I've come to relish the "after" time. I enjoy the side trips to the beach. I enjoy the snuggles, movies, and chocolate cafeteria cake (which I would never make at home, contaminate my cookware with Gluten, please) during IVIG. I enjoy the ride to and from our IV destinations, it gives hubby and I time to talk. I enjoy talking to the nurses who know us, and appreciate our situation. I used to gnash my teeth with worry the night before an IV for J (don't get me wrong I still HATE it) but as time goes on it gets easier on him and easier on us as a family.
Now I think (think being the operative word here) that we have less than one year left of chelation. I don't know how long he will have IVIG. This time around I've decided to take as it comes. I'm deliberately taking my eye off the finish line to focus on the people and scenery around me and I plan to relish them both.