If I hear that one more time...

Ok people, thank you so much for the support in this last week and a half. I need to just say thank you so much for your tolerance and your love while I lost my head and tried to figure out life with a chunk of myself missing. I know I haven't been myself and I wish I could tell you that I'm back to normal. But I'm not. I was listening to one of my favorite songs yesterday and I just wasn't feeling it. In fact I didn't even relate to it anymore and it seriously was one of my favorite songs. No, it wasn't Dolly; I'm not THAT far gone. Anyway it got me to thinking about how I was different. Like it or not I am different. I think half of grieving is trying to accept the fact that you will never be the same and the sooner you figure out that you're different the better off you will be and the sooner you can figure other stuff out. It's like when someone you love dies you get shattered into a million pieces. Grieving is how you pick up the pieces and when you realize that you don't have all the pieces you realize that you are different and you have to figure out how to put all the pieces together and you don't know how you will turn out but you won't be the same.

Anyway, all that said I need to say something else. I know that people are trying to help when they say things like "Drew can be normal now" and "he's running with Jesus" and "he can finally talk and walk". Thank you for your kind intentions but I need to tell you the truth. You are not helping and in fact, your words hurt. It is only a small comfort knowing that he's in heaven. As time goes on I'm sure it will be a bigger comfort but you need to understand that a huge piece of me is dead. Drew was always there and I thought he would always be there. He helped to shape me into the person I am today and now he's gone. With the help of my wonderful husband I am just beginning to wrap my mind around the fact that life is going to go on but it is so hard to hear the phrases I mentioned.
Here's why:
Because the one thing in the world that Drew wanted was acceptance and just to love and be loved. He was happy! He was not tortured, he was not unhappy, he didn't mind who he was. I asked him, we talked. And before you dismiss me let me share something with you. Drew and I had an understanding, we communicated in a way. He was happy just the way he was and I saw his will to live a few times when he shouldn't have pulled through. Now, obviously Drew was ready to move on. He prepared me in ways that I didn't realize until after he was gone and he slipped away peacefully. People never did give that boy enough credit....
Anyway when people say things like "now he can be normal" it tells me that you still just don't get it. You still view him as the poor kid who was trapped inside a body that didn't work. Like I said, I appreciate the intention behind your remarks but to me it says that even in death Drew isn't getting acceptance for who he was. The beautiful thing in all of this that I am reminded of is that Drew didn't even care. He loved whoever he was with and lived in the moment. Sure, people hurt his feelings and I saw it in his eyes when he understood that he was being excluded but in the next breath he was just happy to be with you in that moment. He forgave so easily and whether you saw him yesterday or a year ago he was so happy just to see you and be with you. Does that sound like someone who was tortured and trapped in their body? Or... does it sound like someone who loved life and made the very best out of what he had?
Do you believe he really was in there? It's not really my problem if you don't because I know that he was and I know it's the truth. Did you know in the last year he showed marked improvement in his communication? He was able to continue going to developmental therapy because medicaid could prove that he had shown charted improvement. I'm so proud of that for him. So please realize before you speak (even with good will) that your remarks are not always comforting and in fact can be frustrating because I see that he still is not accepted for who he was the way he way. Yes, I know and believe that in heaven he is fully functional but I don't think it matters whether he has a heavenly body or an earthly body; he has and always will be a WHOLE, pure, beautiful, happy soul.

I heard from a counselor to take to heart people's intentions rather than their words and for your good intentions no matter who you are or what you have said I am truly grateful.

not just another kid

18 years ago I met the sweetest and arguably the purest person I would ever love.

We laughed and played through elementary school. We cruised through Jr. High and it was at that time partly inspired by him I decided that I should go into special ed as a  career. I was drawn to this amazing population and firmly tethered to them by my Drew.
If you didn't know him, when you first looked at Drew you would see a boy in a wheelchair who couldn't walk or talk. If you were meeting Drew for the very first time you might wonder if he understood you or how much of him was really there at all.

Drew pre-dates all of my other friends and has been a major part of my life.
He's not just another one of "my kids", when I told someone about Drew recently they said "this is the downfall of our profession, we lose kids". It's true; when you work with kids who have various abilities sometimes their bodies just get tired. I've lost kids before and yes it sucks. But that's not what Drew was to me. I respect other's point of view and I know we are all different.
He was MY Drew-bug, my forever boyfriend, my little brother from another mother, my friend. He held up his end of the friendship. That's what people don't always understand. I wasn't being kind to this disabled kid by calling him my friend. We communicated in our own way. We shared secrets and laughed. He showed approval and disapproval for my boyfriends and I helped him pick out his clothes. He grounded me and gave me perspective and I gave him a heck of a ride along the way. Even when I fell short he was still there patiently waiting with a smile. Drew deserved everything we could give him. He knew what was going on around him and he wanted to be a part of it.

I would like to think that Drew showed people to look below the surface. If you took the time to look him in the eyes and talk to him you could see his enthusiasm and engaging personality. He never complained and in the few times I ever saw Drew unhappy it was heart wrenching. He was patient and had a sense of humor. I didn't automatically know how to do things for him. I started learning in Jr high by learning to feed him and after high school I learned the rest of it. I made mistakes along the way and he was always there to laugh at me. (Of course there was the occasional angry snort if I accidentally twisted his arm getting him dressed or hit a sensitive spot while brushing his teeth.) Mostly though my mishaps were his entertainment.

I could talk about him forever because 18 years is a gift. I admit I took a lot for granted with Drew because he had always been there I assumed he would always be there. I hate it when people say things like "you're such a good person" and talk about how I'm the good one for taking care of him. It isn't true. I didn't do anything that a friend wouldn't do and if you think differently then maybe you need better friends. Yeah... that came out a little rough... but it's true from my point of view.
He wasn't any different than anyone else and I have never understood why anyone though he was.
He did things that everyone else does.

He supported me with a smile.

Now my wonderful friend is gone.

His poor body was tired and he can do so much more from heaven.

It is SO hard for me to think of a world with out Drew.

I'm told that writing this is going to help me to accept this nightmare.

Maybe it will...
More than that though I want people to know about Drew. I want you to understand that he wasn't just some mindless kid in a wheelchair and that he was a good and faithful friend to a lot of people.

His last act was a gift of life. Drew's family courageously decided to donate his organs and he was able to donate a number of things and give 4 or 5 other people a chance. I don't know about anyone else but I am somewhat comforted in knowing that this wonderful pure heart lives on in someone else.

There at least a thousand of things that I have learned from our Drewser and I'm still learning.

I have heard people say that his life was probably torture for him and that he went through everything so needlessly but I don't see it that way. He has met thousands of people and he touched everyone of them. Drew lit up the world with his laugh and everyone took away something different from knowing him. I can tell you first hand that he was awfully happy for someone who was supposedly so tortured. He loved his mom, he loved his brothers, he loved his teachers and caregivers, and he loved me unconditionally.

I am so blessed to have shared a love so amazing that it hurts this much to say goodbye.