Retrospective: The Wish For a Time Machine
I am loving reading these entries again. This is why you blog!
Sunday, December 23, 2012
A Happy Holiday and Wishes for the New Year
I am having a wonderful long weekend with family and it is making me wish for an unreasonable gift from Santa: time travel. I want to go back to the day of the diagnosis and tell myself that Christmas would still be Christmas and my little girl was found on that day- not lost. I would say the new normal is so much brighter than the forced normal I was pushing for all those months. I would try to reassure that scared mom that whether this diagnosis is correct or incorrect has no bearing on the journey forward. I would tell her that the medical professionals offer few answers so embrace your mommy instincts. I would share that there are more tears ahead and more days of questioning. But I would be sure to add that with the diet switch little Bubu would become even sweeter and funnier. I could tell myself on that day a long list of wonderful things Sofie has done since the diagnosis. Instead, if Santa granted my wish, I would share one thing that "Diagnosis Mommy" would feel the full weight of-two days before Christmas I asked Sofie to point to the Elmo on my PJs and without hesitation she pointed to Elmo. I picture Diagnosis Mommy having a hard time believing that was possible-especially because it was one of HER far fetched wishes for Santa.
Knowing the road ahead would be wonderful, I wish ANOTHER future me would visit me tonight and tell me about how Sofie is doing six months from now. Is she speaking? Does she know how to play like the other kids her age? But life doesn't work like that (no hard feelings Santa). Sometimes my head could explode with all of the different scenarios that could play out from a single action. I have to stop myself and keep myself HERE. And to be honest "here" is pretty spectacular. I have my health, the health of those I love, a roof over my head, and much more. And yes, I have a daughter that has been diagnosed with Autism. A beautiful daughter that is perfect and has been labeled with a disorder that doctors know so little about that they can't agree on the diagnosis. One silly stupid label- autism. The word is such an oversimplification. So many different stories are tucked away in that word-and yet doctors feel comfortable using it to label so many kids. Maybe Sofie has Autism but that one word fails in so many ways. It amazes me that doctors don't have more specific labels for the disorder. They simply talk about "mild" and "severe."If it is truly a spectrum, why only two choices? I find myself thinking less and less about the word "autism" these days. My head is filled with the everyday, love for my family, therapy appointments and wishes for the day I am just sick of hearing Sofie jabber on about this or that. I would love that. I like to fantasize about her talking but I don't do it for too long. Because not so long ago, I was fantasizing about Sofie pointing, making eye contact, babbling and that is no longer a dream- it's reality. In many ways I guess you could say I'm living the dream. :)
Santa, you don't need to get me that time machine but a talking baby would be nice. But no pressure, Sofie is doing just fine. And I am deliriously happy to say that my little family unit is better than it has been in a long time. Sure the road ahead is going to be filled with big ups and downs but I feel like we can handle it. I'm not sure I will feel like that tomorrow. But two months ago I would never have imagined writing that.
I guess I got my Christmas wish early. Happy Holidays and thank you to everyone who has been in our corner.