Regarding Luke

It was five years ago today that my golden boy was placed in my arms for the first time. The world around me suddenly faded and all that I could see was this perfect bundle of loveliness. His perfectly round head together with his pink body was the most glorious sight I had ever laid my eyes on.

I felt part of something so much bigger than myself for the first time. I had become part of a miracle; part of a special plan. I had become Mommy. I had been given the one thing I had needed most all my life, a purpose unlike any other. I was instantly grown-up, unlike I had become when I held my first job or even gotten married. This was real life. This was finally where I was meant to be.

We had recently moved to California, lived in a tiny apartment and knew no one, but I was the happiest I had ever been. My little love went with me everywhere. Could life be sweeter than I had it with my precious son?

Although our days were full of beach trips and park plays, when Luke turned one it was time to get him involved more socially with peers. I looked to the local Mom's Club.

The first few times we enjoyed ourselves. It was challenging for Luke to sit still during circle time but I thought that was pretty typical of his age (although most of the other kids were engrossed in the songs and fingerplays).

About the fourth week, a riding train and track was pulled out for all the children. All the boys clamored for their turn. I noticed that Luke was strangely unaware. Did he not know what a train was? I made a mental note, "Point out more trains, mama. He's a little boy. I guess 13 month-olds already have an understanding of what a train is. That's one I'll have to clue him in to more."

Each little boy was whooping and laughing and making toot-toot train noises. Then it was Luke's turn. I helped him on the seat and the train made it's way around the track. As it did, Luke began to look up and make a long "Ahhhhhh....." sound. He continued looking up and making this sound the entire 3 minute ride, oblivious to anyone or thing around him.

"That's kind of odd." I thought to myself. But half smiled at my beautiful little boy and his quirk. Then I turned and looked at the faces of a few of the mothers gathered around. Each and every mom was looking straight at Luke. The looks on their faces is something I will never forget. I don't know if I could call it horror or disgust or some eerie combination of the two. But one thing I new instantly was that there was something terrifyingly wrong with my little boy.
As I pulled him off the train I knew I wouldn't be able to stay for the rest of the session. I put on a fake smile and rushed out and home as quickly as I could. I called my mom and told her what happened. As I did, my mind begin to flood with all the things Luke wasn't yet doing and that maybe he should be. He wasn't close to walking and seemingly had little desire. He wouldn't touch anything soft or wet with his hands; no picking up food with his fingers. He wouldn't point at anything and he had no words.

Mom listened intently and then tentatively asked, "Have you thought of autism?" Autism. Didn't I see a special on autism when I was about 15? This child that I saw had sat down to the piano at three, couldn't talk but could play classical music. Wasn't that something like what autism was? I cried, "Mom, I couldn't do that." I had no understanding of this concept whatsoever. Wasn't that something that happened to parents who were saints? Those sacrificial mom-types like my second cousin Jenny who took care of her handicapped son until he was 50? How would I ever be able to do anything like that? These kinds of things didn't happen to us, to our family. These kinds of things happened to other people.

I immediately called Luke's pediatrician who hadn't noticed a thing. He recommended a specialist. During this time I would watch Luke sleep and I would stand by his crib in the dark and sob. It was as if a heavy, thick nightmarishly surreal web was being woven around me as I stood there. I couldn't run. I couldn't wake up. All I could do was stand there and take in the possibility that something frightful was happening or had happened the one most precious thing in the world to me.

But Rob wasn't on the same page with me at that point. He was in denial. So when the specialist determined Luke had global delays in every area it was strangely reassuring to me. This meant we were getting somewhere. That we could agree on what was wrong, get to the bottom of it and make it right again.

The diagnosis didn't come for five more months but even when it did, Rob still didn't accept that it could be true. I bought and checked out every book available on autism, on ABA, on sensory integration disorder. I knew I would fix this. I knew I would do everything within my power. If other children had been recovered, Luke would be among them.

I decided on the best placement, we researched funding and Luke began to receive services through the regional center within the month. Whatever they did, I was going to do the same. I was going to learn. This was going to be a rough patch but we would come out the other side with a "sigh" and a normal life.

When Luke was 20-months old Robert picked up a book I had checked out of the library, read the symptoms that described Luke perfectly and wept.

The months passed. And then the years. At four Luke still had no words. This past year Luke has gained some language. He has begun imitating what he hears. But he still doesn't know what a train is. He doesn't know what baseball or Disneyland or birthday mean.

And today, as my little boy turned five, I woke up as if some heavy weight was pressing in on me. I was completely unprepared. I've felt the agony many times throughout these years but it hit me this morning like a jagged-sharp blade through my heart. There is more than a chance now that he won't make it. He won't go to a typical kindergarten which was my goal. He won't ever play in little league and he may have to be cared for for the rest of his life.

The searing pain I feel when I see other little boys playing ball with their dads or eating out with their moms or the children's choir at church, may never go away. Will the rage, the disappointment, the dread fade? Will happy moments always be tainted? Those are questions, in all honesty, I can't now answer.

Now I can watch him sleep.
And I can kiss his cheek.
And he's here with me.
And his body is healthy.
And I can hear him giggle.

And despite the fact that I feel that I don't know how to give Luke what he needs adequately anymore (and that is a dreadful thing for a mom to feel) I know that there are millions in this world much worse off than me. Sometimes this lessens my own pain. Sometimes it doesn't.

In the meantime, his birthdays will be tough. There will be no cake, presents or decorations. Any of those things would only be for us; to make us feel better as parents, because he wouldn't know they were there. At least, not right now.

And birthdays will be mainly spent trying to ward off the tears. Maybe I'm finally getting some closure and perhaps will be able to more appropriately grieve. And for the first time I'm in a place where I can lend a truly empathetic shoulder to those in my position (something I never had the strength for before).

For now I cling, white knuckled, to Romans 8:18 and 2 Corinthians 4:17: "The sufferings of this present time are not worthy to be compared to the glory which shall be revealed in us." "Our light affliction, which is for a moment, is working for us a far more exceeding and eternal weight of glory."

And I continue to search for my normal in the surreal, in the bizarre darkness of autism. There will be good days and there will even be wonderful days. But Rob says he will die with a broken heart and to a certain extent I think he's right that we might. But I have a hope beyond all this world can offer. Someday I will walk hand in hand with Luke. He'll tell me all about what he felt, what he thought, what he is about. That day might be 80 years from now but I know it will be. And all I have to do is work hard, hope for the best with every deposit into his college fund, and wait.