Thursday, June 12, 2008


In Daniel's "welcome page" we say that we basically invite you along for the journey of Daniel's life, and the ups and downs. Times throughout the day I think of things and mentally note, "That is something I should blog about. Or I wonder if other people think or feel this way." I'm not real good at words or writing things. I basically write what comes to mind, there is no organization to it, its generally a bunch of ramblings. I write it, the computer along with blogger does the "draft auto save", I save it in draft, re-read it sometimes and then publish the post. Generally Lonnie comes and read its later and amends it, changes the words around to sound the right way, and fixes my errors. These errors are usually because I only have a few minutes to type up what I want people to see (Daniel's progress, doctor reports, test results etc.), and I type how I think, instead of how it should be in proper English!
In Daniel's welcome page we say, "we hope you find this site informative and helpful on dealing with the issues (diagnosis) emotionally and physically of a child who has special needs." And I think so far I've done a pretty good job on what Daniel has to go though. But I really haven't touched base on what having a "special needs" child does to a family.
So in the next few weeks you'll see some posts about how the crap that Daniel has affects a family, other peoples lives that Daniel is involved with, and its not always a pretty picture. People might read this and think "Wow she's a bitch", but I want people to understand that this crap is hard, it is hard on the child, and it is hard on the family. And the words that a doctor says to you in a small white room, will change you. It will change who you were, and you will migrate into a person you never knew existed. (Oh and did I tell you...YOU DON'T HAVE A CHOICE...this is your life!) So if I am a b* be it. I am not going to change, this is me, as F*cked up as I may will get what I am thinking....if my feelings on issues make me a b*tch, well then I'm ok with that. Now I will say this repeatedly I am sure:

DISCLAIMER: I, in no means would take Daniel out of my life. He is my everything, and I love him more than I can express. I love waking up in the morning and seeing him smiling at me, I love cuddling with him. He is amazing, he has taught me things, he has made me feel things that I never expected to feel. And I pray to God that I never have to miss those feelings. I don't think I could exist without Daniel. So what I write about the "crap" is because I HATE, I LOATHE the issues that Daniel has. I do NOT hate Daniel, I do NOT loathe Daniel, I do NOT resent Daniel. But I do hate and wish he did not have to do the things he has to do.

And I will also the things that are published here are solely my opinion, they aren't necessarily fact, they are just what we as a family are going through, or what I have spoken or heard from other parents.


Jacolyn said...

It's your blog and it's cathartic so go for it. I'm really mad at God today...maybe I should blog about it.

Anonymous said...

I think it's an awesome idea. I have a special needs daughter (CP, IS, CVI, etc.) and it is hard. Most days it just sucks. I hate she has problems and wish I could fix them, but I cant. There are days I just don't want to go to therapy, I dont want to have to carry her everywhere, I dont want to have to exercise her arms and legs so they can loosen up so I can change her diaper, I dont want to have to feed her. I always do it and I dont think its as much ME being selfish, but I wish she could do it on her own. Having a special needs child will turn your world upside down..and I love hearing from familys that doesnt sugarcoat their life because its hard. period. Do I regret Emily? NOOO shes my angel and my best friend.