Four Years Later.

4 years ago
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Because this day is so important to us.

(Cross posted from Christian's Journey.)

I'm sitting at the table with Christian by my side like we've done every day this summer. I drink my coffee and he drinks his water and a little bit of breakfast smoothie. He grunts at me when he's ready for more. He likes his food. And I like my coffee.

This morning with Momma's coffee and our chocolate banana smoothie, chosen by Christian with a "clear yes," is so normal and average. So beautifully normal and average.

This morning is a little different, though. Four years ago today Christian survived. Our little eleven month old boy left our house and this world and sent back a new boy in his place. I look back on that time and wonder how I even survived it. He was full of tubes and scars. He didn't even seem to know who I was. In fact, I remember thinking that exact thought - He doesn't even know who I am.

But over the years the hard became a little less hard and even passed as easy. The sad subsided and the joy arose. Now I don't cry for what we have lost, what Christian has lost. I cry for all we have gained. I cry for that scared, pregnant mom spending the night in a frigid hospital wishing and praying to wake up from a nightmare. I wish I could tell her it will be okay. He will know you again. He will smile again. Just hold on tight.

He is such a gift. I can't even begin to articulate my feelings about this. There is a clarity that comes with living on gifted time. It's almost like a secret to life that is so excruciatingly beautiful but you don't get to experience it without feeling immense pain and heartache. It's a trade off.

If I could talk to the me four years ago I would tell her to hold her baby. Really hold him for the baby that he is. I remember reading advice about parenting children with special needs and one thing that always stuck out was the advice to enjoy my child. At the time I thought - Enjoy my child?! Enjoy what?! His constant crying? His laying there doing nothing? How do I enjoy this?!


Now I look back at these pictures of his babyhood and just look at him. I want to hold that little baby with his purple trache speaking valve right now!

Over the last four years Christian wasn't the only one who had to learn new things.

I had to learn, too. I had to learn that his "doing things" would look very different than any other child, ever. And I needed to learn how to recognize that, rejoice in it, and speak his language so I could celebrate him for the boy that he is. I would have told the me four years ago not to get hung up on fixing him, but to focus on making him happy. I would have told the me four years ago but the me four years ago wouldn't have listened then. I wanted to fix him.

But I learned. He learned to breath and to sleep and to make sounds. I learned to accept him for the perfect baby that he is.

I learned to trust my instincts and that he is still my son and I am still his mother. I don't need permission to give him Teddy Grahams in his blend. I don't need permission to rough house with him. No medical professional has ever said anything to me about my choice but other parents have questioned me. Did someone tell you this was alright? How did you know you could give that to him? Because I'm his mother. And I say it's okay.

I learned that my son isn't forever a medical patient and he certainly isn't a medical patient in this house. He's a kid. His medical stuff is just the way he is parented. I give Lola Cheerios with honey for breakfast. I give Christian a blend through his tube. It's parenting, not a medical procedure. He doesn't need a doctor or a nurse for that. Same parenting, different look.

Christian has been our greatest teacher. When we went through the hardest parts, with his non-stop crying for hours, I would wonder to God - Why did you spare him? To torture him? Will he ever be happy?

I think I know why Christian made it. He teaches us every day. He teaches us about this big, great love that's painful and stunning all at once. He teaches us patience and acceptance and he humbles us. He teaches us forgiveness. He teaches us strength and the will to not only survive but to thrive. He teaches us to appreciate everything and take nothing for granted. Even a little half smile.

He teaches about choosing happiness. He teaches us about not feeling sorry for ourselves. He teaches us perseverance. Because if Christian can be content in living his life every day the way it is, certainly I can, too.

I love that boy for everything he is. I don't think about the future as much as I probably should. But I think about now and what we're doing today. Finally registering him for kindergarten. His fifth birthday coming up. I'm focusing on now.

Christian is still showing us miracles all the time. Just when we think he's done, he throws us another one.

But my greatest joy four years later? Christian likes dinosaurs and Thomas. He likes chocolate peanut butter smoothies. He knows his family. He knows his Momma.

And, I finally believe that Christian is happy.


Mom to Gabe (14), Christian (4), and Lola (3)

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