Thursday, August 4, 2011

The Things That Keep Me Awake At Night!

The other night I spent a few hours catching up on my reading...reading my favorite blogs that is. I then decided to finish my new favorite book "Heaven Is For Real".

This book is a must read and as I finished the book I found myself thinking about what I had just read. It was late and I needed to get some sleep.

I settled in but I just couldn't turn my brain off...a common problem in my world. The blogs and the book took me into a thought process that just kept building. First I was thinking about heaven and how the little boy in the book described it. Then I began to think about children with special needs in heaven and that's when I hit on what was keeping me from sleeping.

I have often read on blogs and have also heard people say to comfort grieving parents that now their child is free of cancer or is running and playing in heaven when the child that has passed had cerebral palsy or muscular dystrophy and was in a wheel chair. It is not uncommon to hear people say that an adult no longer deals with Alzheimers or the blind can see and the deaf can hear when they reach heaven.

Hmmmm...this got me thinking (Yep the opposite of sleeping). Will Sam have Down syndrome when he is in heaven???

I found myself struggling with that concept. I in no way believe that Sam is his Down syndrome but in all honesty...Sam's facial features, his personality, his demeanor, some of the things I so desperately love about this little boy are in fact related to his diagnosis. This is the Sam I know and love.

I remember when he was born and I looked into that little face and thought "he doesn't look like he has Down syndrome." And then I opened my first of many books on Down syndrome and each and every time I saw Sam's face staring back at me. His tiny little nose, his beautiful oval eyes, the space between his big toe and his other toes, the way he snuggled into my body and was never rigid or stiff, his short little neck and the delicate curve of his ears. Through my tears I began to love this little boy. I didn't know or understand how Down syndrome was going to affect him...I didn't know or understand how he was going to affect me.

As Sam grew our knowledge grew. We learned about the heart, the respiratory system, the brain, the digestive tract, oral motor, hearing, bones, and we began to meet more doctors and see more areas of Children's Hospital than I could have ever imagined. And yet, in my my heart...Sam was still just Sam.

Over the years I have never wanted Sam to struggle, to be in pain, to feel different...and yet all of those things are part of the human experience.

Wait...maybe that's the answer to my question. Human experience versus heavenly experience.

Sam will be Sam in heaven...the difference will be everything else. Sam will no longer be viewed as a person with Down syndrome or any of the other labels he has collected here on earth...he will simply be viewed as of God's children. I like to think that in heaven there is no need to label...all services are provided, all needs are met, everyone is worthy and loved. There is no need to identify, name, and categorize the differences.

I took a deep breath...I said a short prayer. I again thanked God for Sam...just plain Sam!!!

As I put Sam to bed tonight and we said our prayers I couldn't help but smile as he said these two lines in reverse order. "Now I lay me down to sleep, I pray the Lord my soul to take (instead of keep). If I should die before I wake, I pray the Lord my soul to keep, keep, keep (instead of take).

I then remembered when Ben was younger and at this point in the prayer he would say, "If I should die before I wake...wake me up."

The difference between Ben wanting to stay here on earth and Sam wanting the Lord to keep him near in heaven was not lost on me. I'm convinced he knows more than all of us. Good Night everyone!!

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