Saturday, September 27, 2008

The Days in Which I Thought My World May ACTUALLY Fall Apart (or Part 4)

I walked out of our appointment for Dirty Job (who was then not quite 2) in a whole different place than when I walked in. It's bizarre how one sentence can turn your world upside down. I'm not sure how I drove after that. That's probably a good thing.

The reaction of those we shared with was, well, interesting. It varied from denial to I knew it to everything in between. Cpt Mom shared with me that Dirty Job was the same child he was December 18th. That was probably my most clung-to statement of that time period. I would stare at my sweet boy and will myself to remember that he was, in fact, our same little boy...the same fun-loving, sweet, playful guy.

One thing I almost immediately felt was guilt - and it was two-fold. First, I felt guilty for allowing Dirty Job to have the MMR shot. Questions flooded my mind - could I have CAUSED this? What kind of mother brings harm to her child? Woven within these personal accusations was an affirmation that the Lord sits on the throne, not me. Whatever part I did or did not have in all of this still was ultimately decided by God. As the story continues, I had to face these questions.

The second thing I felt guilty about was all the dreams I had for Dirty Job. As his mom, I had dreams of him playing football (side note: I was anti-my-boy-playing-football until I realized his hugeness) or baseball, going to all his games and cheering him on. I had dreams of him being a world changer, a defender of the defenseless, a protector of his older sister - and his own family. I had unconsciously assigned so many expectations to my little guy. And it felt horrible ~ who was I to dream things for him? Why did I think I had the authority to do such a thing? The very same day of Dirty Jobs diagnosis, we had a dinner date with some friends, a dinner date that we should have, you know, canceled. They were engaged, no kids, living on love. And we were just handed what felt like a death sentence. I expressed my remorse over my ridiculous dreams, and my husband's friend offered up words of compassion. He shared that he didn't think it was wrong to have dreams for our children. It's what parents do, because they love their children and want good things for them. It was such a moment of affirmation in the storm. I don't even know if at the time I really digested what he was saying, but it's a statement that has stuck with me over all this time.

We hosted Christmas with my family that year. The only year we've done it. A lot of that is a blur. Some of it I remember. My parents got Dirty Job a train table with the track and trains and 237 pieces. I remember staring at Dirty Job to see if he was playing appropriately with the train, or if he was just spinning the wheels and watching. He was playing with it appropriately and LOVING it. I remember looking for stimming - which in case you don't know what that is (I DIDN'T) is self-stimulating behavior ~ things such as hand flapping, head banging, clapping, waving your hand in front of your face, etc. The only thing our guy did was "dance a little jig" when he was excited. It didn't seem abnormal at all.

My parents thought the developmental pediatrician was a nutjob. My sister had already researched autism before the diagnosis (I was pretty pissed about that). My brother and sister in law made observations over the time they were here at Christmas, often saying he didn't demonstrate autistic behaviors outside of the lack of speech.

We didn't have Rainman on our hands. So how could he be autistic?

Christmas 2006 ~ 6 days after diagnosis.


Pollyanna said...

I think that all the things you feel about your child and his dx are totally normal. I'm just amazed at how well you can write it out. I have thoughts and feelings that I'm not too good at writing out.

Hugs to you as you take this journey in life.

CPT Mom said...

I am loving reading your story.

Keep telling your story, my friend.
It's just one more way, of many, that you and your boy can, unknowingly, bring blessings to others.

PS. Are our kids really growing up so fast??? Or is it just a figment of my imagination?

Holly said...

Don't stop dreaming big for your boy. He is amazing and capable of SO much. God's got major plans for that boy, for sure.

PS. The photo is precious. I can hardly believe he used to be that little!