day 16. Someone or something you definitely could live without.

Well, I bet you think I'm going to say 'autism', don't you. But no, I'm not. If I remove autism from my life, I will also be removing at least one person I'd rather not exist without. So as much challenge as autism brings to my life, my heart, and my sleep schedule, I wouldn't kick it to the curb. 

I could, however, live without some of the more painful and exhausting parts of Ruby's autistic challenges. Our lives would be much more restful and productive if sleep were more predictable. I could go into the deep and dirty, dark and ugly about how challenging sleep is in our house, but... let's just say I see the wee hours of the night/morning more often than I'd like. It's better than it was a year ago, but still difficult. 

If Ruby could communicate, just a wee bit more, it sure would make our lives easier. As evidenced by last night's 2 hour screaming/crying/raging fit over painful ear. It took a full 3 hours for us to figure out what hurt, get her to take some homeopathic meds and finally fall back to sleep. Seriously, heart wrenching for the parents. Ruby has such interest in playing with her peers, interacting with those around her, but communication make it so challenging. If I could unlock that just a little bit more...

So yeah, there are things I could live with out. I could live without the 3 hours of raging fits she had due to pain and frustration. I could do without hearing my girl cry "all done all done all done, i'm ok i'm ok i'm ok" when she is clearly NOT ok. I could do without being awake from 3-5:30 am on any given day. 

But, hey, it could be worse, right? 

Comments

[kim]

Oh Momma. That last paragraph tore my heart out. You are such an amazing mother. I know you struggle with the challenges of autism, and I wouldn't expect you not to. But I love how you see the beauty in it, and how you know it makes your Ruby the magic that she is. But it also makes you the magic that you are, and I hope you see that too.

xoxo

[Roccie]

"All done" over and over breaks my heart too. Trying to help her find her words and watching her struggle. Just take a momma's heart out with a rusty spoon.

Thanks for sharing all this. I hope I can say the right things and support you the way you deserve to be supported.

[Roccie]

Uh... I got a little clumsy on the other site. I was looking for the area to send a personal note before submitting the request. Give you the chance to opt out.

I fear I may have over stepped my bounds... but I think I see you out in the real world??

Oh geeze, I just violated all that is holy in the blog world. Forgive me. I just want me some more Ruby pictures!

;)

I think you will laugh. If you dont, just ignore it and we will act like it never happened. That is why my comment is here, not on your new post!

[korin]

FYI, I post my blog on FB, I'm out. which is why i don't post IF specifics on my blog :)