Tuesday, October 25, 2011


October is Down Syndrome Awareness Month.

I know.

I am not a typical advocate. I don't sport a "My Child Has More Chromosomes Than Yours" bumper sticker, and I still haven't done a Buddy Walk.

The other day I was having a Facebook conversation with two moms who both have children with Down syndrome. They have both been blogging this month about Down syndrome, and the topic of "ugly" came up.

(You can read Courtney's post about it here.)

How, in this journey, we have all been dealt a big pile of ugly. How, especially at the beginning, sometimes, the ugly seems to be all you can see.

At times it's debilitating. Simply overwhelming.

Anyone who knows me knows that I have struggled a lot with Benjamin's diagnosis.

He's three-and-a-half years old, and I am still not okay with it.

Don't get me wrong; I absolutely love my son. I wouldn't trade him for anything.

But I still hate the Down syndrome.

I hate the fact that he doesn't understand me when I talk to him.

I hate that he doesn't have any real words yet.

I hate that he has to drink Pediasure instead of milk and eat mostly pureed foods.

I hate that he will not have all the opportunities I want for all my sons.

That he will probably never get married. Or drive a car. Or truly be independent.

But in the fall and the winter, the thing that I hate the most is the fact that, for whatever reason, he gets sick.

A lot.

Usually pneumonia, but he can surprise me.

It comes on quickly and takes a long time to go away.

In those moments, in the middle of the night, when I'm holding him while he's crying, burning up with a fever, writhing in pain, I am Mama Bear.

Whispering to him how much I love him.

Singing "Baby Mine" to him.

Thanking God for how much Benjamin has enriched my life.

Made me a better mother. A better wife. A better person.

Last night was one of those nights.

I was up for hours with Benjamin while he was burning up, screaming in pain, and unable to tell me where it hurt.

I kept apologizing to him that I didn't know what was wrong with him. That I didn't know where it hurt. That I didn't know what to do to make it better.

Today at the doctor's office it was the same-old-same-old: CBC, blood culture, going next door for a chest x-ray.

It was like B and I were old friends in this comfortable place, doing ugly things but able to enjoy each others' company throughout it all.

We had each other.

All while sharing a bag of Baby Goldfish.

By the way, the flu test & strep test were both negative, but his white count was really high. So we did a shot of rocephin, a blood culture, and a chest x-ray. The blood culture results won't be ready until tomorrow. The x-ray was actually clear, but we're going back tomorrow morning for another CBC and another shot of rocephin.

If you don't know what all these terms and initials are, count yourself lucky; they're normal vocabulary for some of us.


JILL said...

I love how he has his hand on your face. Like he just needs to know you are there while he scans the room and figures things out. I am happy the x-rays were clear. Hopefully, he will be back to his happy self very soon.
Thank you for always being honest with us. I know it is easy to be positive online. To put a happy spin on even the ugly things. Your honesty and real emotions mean so much more to me.

The Wood Family said...


I was just thinking about you earlier today after one of your FB updates. I know this fall/winter season is exhausting for you especially as it is a season that brings sickness.

I said a prayer for you in earnest today! The Lord NEVER gives us more than we can handle. Ever. Even when we are tired and feeling hopeless.

Your life is a beautiful testimony! Keep on trucking friend!


Anonymous said...

I love you.

Branton Family said...

Love that you get it...I don't feel so alone. :)

Verna said...

You are such a special mother.
And someone once told me that God chose special mothers to send these children to, because he knew they would love them regardless and would be able to handle it. I am sure you have been a great example to others. I know you inspire me everytime I read your blog.
Keep up the good work, hang in there.