The Little Engine that COULD...

I read him my favorite book yesterday, I think that he liked it.
Chug...chug...chug...puff...puff...puff...ding dong ding song...
The little train rumbled over the tracks, she was a happy little train.

I rub his little back, as I turn the page, he seems very concerned about the plight of this happy blue train. Nobody wants to help her, and she just wants to get to the other side of the mountain to deliver her gifts to everyone on the other side. No one thinks that it is possible for her to perform such a task. I can certainly say that I see Braeden's life in this story. Like so many others, a doctor that I had never met took my hand, as he tried to tactifully bring up the fact that there were "other" options. "You are too far along to terminate the pregnancy here, he said, but there are a few states where it is still legal. Can you imagine?
I spoke with another mom whose son was diagnosed with HLHS when Braeden was about 15 months old. He wasn't walking yet, or talking much, or doing all of the things that your average 15 month old was doing, but his smile, and determination became my most constant reminder to never give up. Life is worth fighting for...how often I allow myself to forget. I sent this new heart mom his picture, and I shared with her our story, and the story of oour other heart buddies that were doing well. She emailed me a few weeks later to thank me, and also to let me know that she had terminated the pregnancy. Her words left their mark on me,"We decided we want a healthy child".

I had a hard time with her choice of words.

Sometimes I find myself sad...perhaps I have no right.
My child is here, while others are not. I desire normalcy...and find fear in uncertainty...

I can imagine watching shiny perfect trains going back and fourth up and down the steep mountain.(Forgive my analogy here)
As the mother's sit chatting happily,and sipping their hot tea...I watch my child struggling to make it up the first incline, that the others seem to do with little effort.
I am watching, my feet ready to go help him should he fall, or give him a gentle nudge should he recquire one.
I listen...but in a way, I am not, and could not ever be a member of their club. I know that they did nothing wrong, nothing to deserve my complacency, but we have little in common.
"Look Marjorie, said the youngest of the mothers. ""Do you see how my Johnny goes up and down the mountain with such ease, he is strong and mighty like his father". "Oh and so he Ameila, said Marjorie. "Why my Aron has three blue ribbons for his speed". They gaze my way with a mixture of pity and kindness, as I wach my little one just making it up to the second incline. "You shouldn't worry so, one of them says to me,"Everyone does things at their own pace". I smile and mouth the words,"thank you". Their kindness is there, and yet a part of me feels like I will never belong.
If you do not live in the shadow of death, you cannot comprehend it. I could share countless stories about friends, as well as family who do not understand where I am coming from. The uncertainty of your child's life hanging over you...the wondering how quickly things can change...the gradual acceptance that it is all in God's hands. It is a dance...changing from one moment to the next. A blessing to be sure...but there are days when it does not feel that way, especially the days when a fellow heart family loses their child. Part of you went with that child, not only in grief for their loss, but in hope for your own.

I think I can...I think I can...said the little train.
Chug..chug...chug...
Puff...pufff...puff...

I should consider myself blessed, to be a witness to such a miracle.
Nothing that he does comes easily.
Everything is harder for him, and as a mother...
Well, sometimes it hurts.
I am not always sure if it is him that I hurt for, or it is my hopes gone astray...
I wonder what it would be like to be that person, who thinks that nothing bad can happen ...just once more.
That we live in a world where prayer can change the outcome of every sick child...
That there are always happy endings...
I listen attentively as friends tell me how badly they want their child to place first on the track team, or make head cheerleader and I think...
I hope that we have more time...a multitude of more time.
Is it wrong that they are proud of their children's wonderful accomplishments?

Absolutely not!

I am the one who has changed. I cannot help it. I revert from a little jealousy to alot of gratitude. One day at a time.(Forgive me Lord, I guess I am only human afterall)

The sounds of the other mothers talking is drowned out, as I watch my child drift slowly downward...
He had reached the top!
And as he comes back down...huffing...I thought I could, I thought I could, I thought I could...

I will be here waiting...because I always knew this day would come.

CO 1:27 but God has chosen the foolish things of the world to confound the wise, and God has chosen the weak things of the world to shame the things which are strong.