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.