Today I am afraid.

No, not afraid, terrified. I am so worried that my stomach aches.

And I wish I had never heard of Down syndrome.

I long for the care-free days when a rash was probably a heat rash and a change in appetite was probably teething and crying was just crying.

Today nothing has really changed. It was just kind of a hard day. The Blessing was extra fussy. She didn’t eat much at all. She has a runny nose.

The other kids are all fussy, too. The other kids have runny noses and some of them are coughing. But I give them extra vitamin C and let them watch a movie and think nothing of it. It’s just a cold, I know, and they will be fine.

But The Blessing gets a runny nose and my mind says, “she could die from this!” Her appetite changes and my brain screams, “she’ll starve to death!” She gets a rash, and I think “Is it leukemia?”

Yesterday I was fine. Tomorrow I will pull it back together. But not today.

Today I am worn out. I am tired of balancing on the brink of terror, keeping my fears in check as I try to enjoy my daughters infancy. Today my face is red from crying and my chest hurts from the burden that I carry. Today I am sad for that child of mine. Today I am sad for myself. Just for today I am fully experiencing my helplessness, my inadequacy, and my fears.

I am not strong enough to bear it.

I am not smart enough to fix it.

I am not brave enough to face it.

Having a child with Down syndrome is an enormous blessing. She brings to our home so much richness, so much love. But today I wish she didn’t have Down syndrome. Today I wish she could be healthy and that I wouldn’t have to worry anymore.

So I guess this is what it is to be a special needs mom. To carry a conflict inside that cannot be defined or defended. To struggle through the tough days.

The days like today.


4 thoughts on “Today

  1. You said tomorrow you will pull it together, I know. You are an amazing woman with an awesome husband and delightful children. But, today your heart is breaking, and that touches mine – I heard you and feel with you. There is so much I don’t know about your daily life. Your sweet Blessing is beautiful and I fall into Heavenly Papa’s arms and pray. Let me know if there is anything I can do to help. I love you and your family, Deborah

  2. I can’t even imagine how that would feel and I wasn’t aware that children with Down Syndrome were so vulnerable.
    I am sending you some Love energy to get you and your little girl through this day.
    You are a blessing too, to your children and all the people in your life, including us. Keep your chin up. ❤

Leave a Reply

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

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

Google photo

You are commenting using your Google 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