Saturday, December 29, 2007

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.


15 Comments:

Blogger Steph said...

I have nothing but a big digital hug and the reminder that God works in mysterious ways. I know it's hard but God has a plan for him even if we don't know what it is yet. =]

8:16 PM  
Blogger butterflygirl said...

Oh Gina...Happy Birthday to Luke. You are a great mom doing everything you can...keep it up honey. Know that God does not give us more than we can handle. ((hugs))

9:33 PM  
Blogger Suzanne said...

Gina, this post has really touched me. It was so well written, straight from your heart! Happy Birthday to Luke, and praise God that you & Rob have made it through five trying years. Praise God that Luke has words and a beautiful smile, and eyes, and such a sweet spirit! Hugs to you & your precious family. I'll say a special prayer for you now.

10:57 PM  
Blogger h&b said...

Oh Gina !

I can barely see the screen through the tears.

Happy Birthday to Luke, and to you - because it's your birthday too.

I think you are remarkable.

12:29 AM  
Blogger chksngr said...

Happy Birthday to YOU, Mommy...it was on this day that you became a new person...and whatever happens with Luke, YOU were never meant to be the same...In these five years, did you ever believe you would have the capacity in your heart for what has transpired in the 5 years since Luke was placed into your arms? Did you ever believe you had the capacity to love this much, persist through this much, fight for the best for your little boy, drive to a goal that is yours, but is also Lukes?

Don't stop believing, Gina...dont' ever stop believing...because through Luke, God has awakened something in you that He will use for His Glory.

And can I say...I've never met you...but I think that maybe part of this purpose is to be the strength and wisdom and perspective and love that I personally need...you remind me almost every post to stop, appreciate today, life in the joy that I have, celebrate the little things, settle into the peace that is Jesus Christ...and Gina, could you have given me these things if you had no Luke? Could you have reached across all that separates you and me and touched MY heart if not for precious Luke?

Happy Birthday, my friend - with this tiny life placed into your hands and entrusted to you by God Himself, you were born anew...

Celebrate for yourself...make yourself feel good as a parent...because whether or not Luke outwardly displays that he knows what this is, or Disnyland or anything else, it is written in Heaven...and someday you two will meet in perfection there...both of you healed and both of you rejoicing for the unconditional love you were able to provide for him here on earth.

Love you girl!

11:58 AM  
Blogger Jada's Gigi said...

Oh Gina...my heart cries for you and with you. Hold fast to His Word that He has spoken to your heart...He chose you among all women to be Luke's mommy and as one writer has said..changed you forever that day and through this suffering ... made you who you were meant to be. God is so good...even when we don't "get it" at all...
You are such a blessing, nothing but encouraging and filled with God's light. He is able to keep that which you have committed unto Him, against that day....Happy birthday to you both.

9:15 PM  
Blogger Margo said...

You're an amazing mother and person. Sweet Luke is indeed blessed beyond measure. God has an awesome plan for Luke. He knit him together in your womb with a purpose in mind - for you, for him and for every person that has been blessed enough to cross your path. Happy birthday Luke.

11:24 AM  
Blogger Bek said...

wow, gina. thanks for sharing your story. this was really brave and courageous of you.

i know with you that God is causing all things to work together for good.

i am blessed by your hope-filled college fund. i'm searching for words but not coming up with very many. all things are possible. thank you for holding onto hope, gina.

1:07 PM  
Blogger Donna said...

Happy Birthday to Luke!
And happy 5 years being a mommy.

I agree with everything everyone has said, God has plans for Luke. He gave Luke to you and Rob because he knew you would do everything in your power to see him succeed, even it is isn't in the world's definition of succeed.
I have a cousin with Down Syndrome, and from seeing what his family goes through, I know it isn't easy.

I believe we will see miracles (LOTS) in coming years and I pray that you will see one in Luke.

I love your "real" heart, you don't try to sugar coat it. Your transparency is beautiful.

HUGS to you and your family.

7:34 AM  
Blogger Pia said...

happy birthday, luke. i was so touched with your story. luke is so special. he's a child of God. (((HUGS)))

12:10 AM  
Blogger T-Bone said...

Gina:

God could not have provided Luke with a better Mommy. You continue to fill me with awe.

Love you, honey.

BoLacy*

*must remain "anonymous", don't you know.

12:20 PM  
Blogger Melissa H said...

Something made me surf back to you today, Gina. Your blog was the confirmation that I needed, back in November of '05, to search much more deeply. It is because of you, dear sister in Christ, that I discovered that the differences in my beautiful boy had a name: Autism. Luke WILL continue to prosper because the Lord has great plans for him. Always remember to hold onto Jeremiah 29:11, too.

Hugs.

2:42 PM  
Blogger Em said...

What a beautiful and heart rending post. I can empathise with so much of what you write.

with great love,

emxx

11:20 PM  
Blogger Em said...

ps willow and he are almost the same age. she was born on november 16, 2002.

11:20 PM  
Anonymous Anonymous said...

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10:19 AM  

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