What you fear most.

When you sat in that hospital bed or in your house, when they told you your child had Down syndrome what did you fear most??
People staring?
Behavior problems ?
People judging you and comparing your child to their own ?
Strained relationships between siblings, your partner?
Feeling trapped, burdened by your own child?
Well those were some of the things I feared .........

Yesterday my fears were realized.
It was the worst day for years, I felt completely crushed by Down syndrome, yesterday I hated it.

What started out as a great idea to attend the local Story-time at the library ended with me screeching through gritted teeth "we are going home" and me literally pushing Cy to walk faster across the library floor while I carried a a wiggling growling Owen out on my hip.

Yesterday I collapsed to my kitchen floor and sobbed- my poor 5 year old Cy had to console me and all I wanted to say to him is "I am so sorry.....so sorry your brother has Down syndrome " so sorry you didn't get to stay and do the craft at the library because I can't control him"..... I am just so sorry"
But I didn't say "sorry" to him I just wept and told him thank you for being gentle and caring. I made an early lunch dumped it on the table for them and went and went and hid in my room, in my bed. I rang my husband, told him how I just can't do this anymore, I told him I am weak, I felt completely drained.

Storytime was so horrible, Owen was so horrible, he wouldn't listen, he was disruptive, he made a real fuss and I didn't manage very well, I was snappy and embarrassed and cringing and jealous of all those perfect children (especially the ones under the age of 2 who sat like little angels).

Yesterday, I hated Down syndrome.

I felt like Owens behavior was all "its" fault. Oh I could blame the storyteller a little (who was quite disorganized and ditzy) but really it all came down to Owen........and me.

Today, I am bruised, reflective, sad and I feel ashamed for the way I marched poor Cy out of the library and for slamming the car door when I put the boys in (so loudly it frightened an old woman walking past!) and for the way I roughly hauled Owen out of the car when we got home. I feel embarrassed for looking like the crazed, flipped-her-wig-mother-of-the-growling/screaming-kid-with-Ds and the crying older brother who just wanted to stay for craft and for the uncomfortable looks and the looks of pity from them people at the library. I am sorry for putting my sweet boys in that situation. They totally deserve better from me.

I don't have anything amazing or insightful or healing to say about yesterday, it's was a bleak day in my parenting, it sucked..... big fail.

Today I get to try again, at being the parent I want to be. It is a tough gig, I know that. Sometimes I want to have that picture perfect family or at least, you know, the family that can take disability on ~lying down...the family that can suck it up and get on with life. But sometimes.... sometimes it is just fucking hard. Sometimes I just want to crawl away.

Today I don't hate Down syndrome but yesterday I did.