I’m Still Not There

and at this point, I’m pretty sure I won’t ever be.

A long time ago, I wrote how I didn’t care about Sam’s Down Syndrome diagnosis. I didn’t care then, and I don’t care now. Every story is different. I have read many stories about the devastating feelings upon receiving an initial Down Syndrome diagnosis. I can’t relate to those stories.

Let’s roll back five years. My baby is born, placed on my chest, starts coughing, and then not breathing. He’s immediately ripped from my arms and within an hour of his life, in an ambulance with my husband, going to another hospital. I don’t know what’s happening and don’t get see my baby or my husband until over twenty-four hours later. I wasn’t thinking about the possible Down Syndrome diagnosis then. I only wanted my baby to be alive. And this is only the first chapter in Sam’s lengthy novel.

If I’m being honest, those stories make me feel a little annoyed sometimes. I would give anything for a little boy with Down Syndrome who didn’t have a list of medical diagnoses longer than I thought could be possible.

If you’ve never read this poem, it’s a beautiful description of the process one goes through when they have a child with special needs.

Even as I spend yet another night in a hospital, I am happy to be in Holland. I was happy as soon as I landed there and realized I wouldn’t get to go to Italy. Yes, once in a while I wonder about Italy, but I can’t say I’m bummed about not being able to go there.

This is my story and no one else’s. It’s only my hope when someone gets the news their child will not be like most other children, they will realize quickly, although incredibly hard and exhausting, Holland is an a wonderful place to be.

To me this article applies to anyone who’s ever had a life changing event beyond their control. Or even anyone who makes plans and has expectations around those plans that don’t happen. Sometimes when we have too much to be thankful for, I think we can lose sight of the beauty around us. If you’re able to read this, my guess is, although it might be hard in the moment, you have something to be thankful for.

If you’re still sulking that you’ve landed in Holland, it’s my hope you won’t mourn over not going to Italy for too long. I’m NOT telling you Holland is easy. I’m only saying from experience, if you can focus on its beauty, and let go of the fact you won’t ever get to go to Italy, I think it will be easier to enjoy “the very special, the very lovely things… about Holland.”

4 thoughts on “I’m Still Not There

  1. Thank you Jamie. Your words are truly a light in the darkness and God has truly gifted you with Sam. Your family is a witness that God gives us what we need when we need it and not before. Our lives are truly a walk of faith in our Almighty God who is with us, around us, under us, above us and in us. May Easter and the resurrection of Jesus bring you each special Joy!
    Mona

    Liked by 2 people

  2. Jaime you have the gift of words! Your beautiful soul shines through. Thank you for sharing this post. Our family is always in my thoughts and prayers! Sam is strong and so is mom!!!

    Liked by 2 people

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s