A painful reminder

>> Monday, April 12, 2010

I took Bug to school this morning after a week of having him home with me. I noticed the flag was flying half mast. I wondered why and thought I would look when I got home.

Bug wasn't so sure how he felt about going back to school. I had to tug a little but once he got to the classroom door he was happy to go in. I left him quickly, trying not to disturb the reading that was going on and on our way out, I saw a poster on the glass near the office. Kim, the principle, was there along with another woman. I was reading about Rett Syndrome and didn't notice the pictures next to it.

I was reading about how Rett is almost ALWAYS seen in girls, and that it is the ONLY KNOWN cause of Autism in females. It didn't occur to me that it was posted for any other reason except we are in a Special Needs School and it's just one of the things that is always around. But, there WAS a different reason.

Kim saw me and turned, I said: "Sorry to look over your shoulder, don't mind me".

She said: "Oh, that's OK. Yep, we lost one of our students this weekend".


That was my heart hitting the floor.


Followed by my stomach.

We exchanged a few self serving: She is in a better place. Etc. All the while, I was holding back my need to weep.

Right before I left, and get ready for this because it will make any woman I know cry, Kim said:

"Yep, her name means caterpillar in French. And now she is a butterfly."

I expressed my condolences, I think, and took Tay to the car. Got in the car, turned the ignition and cried all the way home.

I know it happens and there is little we can do about it. Children are born, sometimes, fated to die young. It sucks. It is how it is. I imagine that as much as we can prepare for it, the pain itself, is unimaginable. I KNOW that Bug has a slightly higher chance than other kids to just suddenly have a seizure and die. I know this, and I accept it as much as I can, but I also fight it. I make sure he has his medication but still...nothing can stop it really.

This little butterfly, I ache for her parents, for her mother especially. I can't think about what happened, I can't do it. It just hurts too much to think about. I have seen, what I thought was death, in Bug's eyes too many times and the thought that one day...well I can't think about it can I? I can not paralyze myself like that. I am so sorry she is gone from their lives. Nothing more to say really.


Holly April 12, 2010 at 3:44 PM  

Oh Nette! You made me CRY!! My first thought due to the title of the post and half mast flag was 9/11. That was how I originally found out about 9/11. We had just moved to CA and I took Ben to school and was sitting in the office waiting. Flag was half mast, everybody looked frantic and depressed... We were still sitting there when they announced it over the intercom... THUD! I was CLUELESS... We were in a small apartment with none of our luxuries of home... Our home was supposed to have been finished 2 weeks earlier but wasn't. Our stuff was stuck in the moving company storage until our house was done. I went and bought a little TV & boom box so we could have a CLUE what was going on in the WORLD!

I'm so sorry that this is something you always have in the back of your mind due to possibilities of Bug's condition. You are such a GREAT mom and BUG is SO LUCKY!!

I also cry KNOWING that Vincent is on borrowed time. He IS different from other babies, but he is SO SWEET. I remember when they didn't think he'd make it as long as his sister. She was 16 months. He will be 2 in MAY! He seems to be doing good... but then, Whitney seemed to be doing good when we saw her a month before, too. *sniff*

There is something in the sweet spirit of these special needs children that really creates a bond with anyone that gives enough of a chance to really know them! Those that don't give it a chance are doing themselves a real disservice. They will never know that kind of unconditional love.

(((HUGS))) for YOU & your BUG!! I'll keep you in my prayers! ;D

Nett April 12, 2010 at 5:45 PM  

Awww, Holly! It's so wrong that these sweet kids have to have such a hard time of it. And it weighs even more on the parents. All we can do is sit and watch, hold hands and give kisses whenever they let us. I just ache so much today. I smile for a bit and then I let my mind go back to this family...

9/11 - wow huh? We were in CA too and a friend in Boston called us at 6am..she said...OMG, turn on on the TV...America has been attacked. My world was spinning then and I was sure we, as a whole, would never be the same but like usual, we have forgotten what it was like to be the next Generation to face aggression in this form. I wonder if we rose to the occasion?

Thanks for the love and be sure give Vincent and big 'ol hug from me...so glad to see he won that contest! And the pictures are beautiful (of course).

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