Friday, November 16, 2012

Puzzling #3 ~ The long, hard post....

Looking back, back to the beginning of our marriage, I clearly remember looking at Tom in absolute wonder and joy, and couldn't wait to begin our journey. To diaper babies, chase toddlers, read silly stories and pray as a family with this amazing man. His love for life and joyous heart spoke to mine and indeed, speaks to me today.... 

But in any great love story, there is doubt and fear and impatience all wrapped up into it too, isn't there? For as much as we wanted those babies, they were a while in coming.... And in that waiting time, I felt my personality shift into fear mode, with a side of envy and desperate want. This wasn't who I wanted to be. For goodness sake, I wanted the hard stuff.... Here we are, Lord. Do with us what You will... (and can you please hurry?)

And yes, in God's time, six years later, we were indeed gifted with Joseph. Our Joe. A tiny bundle of energy who brought more joy to our lives than we could begin to fathom....our world was never ever going to be the same and we couldn't have been happier. And we are still happy, but a new reality is shaping.... and we are being shaped by it.

When Joe was two, and in pre-school, I couldn't wait to go to his "Mother's Tea".  This. THIS is what I had longed for all of those years. To play and enjoy all of those wonderful mommy events. As I came down the hall and heard the joyful shouts coming from the room, it warmed my heart. But when I looked in, I saw a group of boys build a tower and then send it crashing with a truck, while over in the other corner, there were boys and girls playing house. Where was Joe? Surely, he must be in the bathroom?

And then I saw him. 

He was sitting in front of the bookcase with a book on his lap and completely entranced. My stomach dropped as I waited for him to notice me. Eventually, he looked up and with a little smile said, "Oh hi, mommy. Be right there." (Mind you, he had a speech delay, so this is what I knew he said but it didn't sound quite like this.)  Even as I type this, there is a lump in my throat. I hate to say it, but mother's intuition is a blessing and a curse. I had a background in Psychology, had worked as an Early Intervention Specialist, and was a teacher. I *knew* that this was not a typical reaction from a 2 year old. For most children, social play is typical. And while I was glad that he liked heart has never really been the same. It's true that he has always been a little puzzle....

I have to tell you that this has been a rough week. After many years of never really having all of the answers, and knowing that he has ADHD and anxiety but that that really didn't answer it all.... 

we learned that Joe has Asperger's. 

That he is on the spectrum of autistic disorders. (And the crazy part? When the DSM-V comes out? Asperger's won't really exist. It is all going to fall under the umbrella of Autism Spectrum Disorder, or ASD. How's THAT for confusing? This disorder is so incredibly strange because it doesn't look the same in any two people. It is why it is so tough to diagnose.) 

And here is where my fear ramps up again. I imagine some people reading this, nodding their heads saying, "See. I knew it." or "How did they not know this?" I feel judged and shamed and scared to death.

When in reality, do you really think....
that I didn't know that he wasn't socially mature? 
that we buried our heads in the sand? 

Do you really know how hard this has been and continues to be?

How it breaks my heart to watch him attempt to make friends or play sports, and stop after awhile because it is just too hard? 

Do you know that when you are enjoying a houseful of people this Thanksgiving, that I will have to carefully watch and see if Joe gets too overwhelmed? Even with family? Make apologies and have him apologize?

Gosh. And family. Talk about the swirl of emotions there! As the oldest grandchild, the oldest cousin, we have to watch as the younger ones wonder why he sometimes walks away from them. More overwhelming feelings of guilt.

Disclosing this so publicly is tough, but if Tom and I have been anything, it's honest. We have to admit that this is hard for two social butterflies to understand. We crave conversation and togetherness and emotional connection. On the surface, this label that is now placed on our child screams avoidance and social isolation and disconnect.

But this label? This doesn't even begin to capture all of the wonder and spirit and character of my child. No label can begin to encompass the divine grace and goodness that is wrapped up in flesh.

Here is what I do know:

Joe's Baptism pillow, handmade by my sweet cousin, Julie Burchell Cowan

For this child I prayed. We prayed. Joe is who he is, and we are here to love him. 
No. Matter. What. 
We will continue to love and pray and fight for and nurture and help him however we can. Even if it means that we are taken out of our comfort zone. Even if we have to slow down and  allow him to grow at his own pace. Even if it is horribly messy and we make mistakes and we fall down a thousand times over. Even if....

No. We didn't pray for a perfect child. 
Yet somehow, we got the perfect child. For us.

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