Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group horrible horrible day

My stepson Reggie passed away this morning. They are not sure what happened yet, but they think it was a massive seizure. He was severely austistic, and had heart problems as well as a seizure disorder. They are taking his body to KU in Lawrence KS for an autopsy.
He lived in assisted living in Kansas, and the boys and I had planned on a trip this summer to visit him. Now am trying to find a way to get down there now. This is just so unreal right now. No body can seem to get a hold of his mother. I feel awful about not having gotten down there to visit him sooner. That woman hadnt bothered to go see him in over fifteen years. And she only lives a few hundred miles away from him. She flew fifteen hundred miles five times in four years to visit her other son in prison, but couldnt bother to go see Reggie.
When I married Reggies dad, even though Reggie was a teenager at the time it was like having an instant toddler. He was so full of life and tested me as most kids do test a new stepmom. But I loved every minute of it. Knowing that his own mother basically threw him away, made him even more special to me. I regret at times not bringing him up here to Washington when we moved back here. But he was so happy there. He had friends and a job and semi independent living. I had bought him a t shirt once that had a big smiley face with the saying Dont Worry Be Happy on it. We would have to hide it from him once in awhile so I could wash it and he would wear something else. I finally had to go buy two more of them. I keep picturing him in that shirt and how happy he was when I gave it to him. How just a simple silly shirt brought him joy. But that was Reggie, he found joy in so many things. He was non verbal, except if you asked him what he wanted to eat he always said Pancakes Please. And he would say his name as Waddie. He couldnt say Reggie.
The boys are doing ok today. I think they are in shock right now. Both have kind of hibernated to their rooms.

Rest in Peace Waddie. I will always love you. And someday I will see you again.

Dear Pam

I am so, so sorry to hear of Reggie's death. He couldn't have been very old and obviously it was unexpected which makes it all so much worse. Please know I am thinking of you and the boys.

Please don't feel guilty that you haven't seen him in a while, your life has not been easy for the last couple of years. He knew you loved him that's all that really matters.

I hope you manage to find a way to get there to say goodbye.

Pam,

My deepest sympathies go out to you and your family.

You know I am around if you want to chat.

I am still having a hard time with the loss of my brother.

Take care.
Cara

I'm so sorry to hear your news about Reggie, especially since I now work teaching teenagers with autism in NYC, and some have serious health issues....from what I've learned, over 30% of people with autism can have a type of epilepsy.

I'm glad he was happy where he lived, and liked pancakes. Most people, even severely autistic, know more that we think, and Reggie obviously loved you.

Hang in there, my thoughts are with you and your family-
Peace
Linc

Pam,

Sorry to hear about your stepson, having adopted and raising my oldest I know there can be a great relationship developed. Keeping you and the family in my thoughts and prays,

Brent

Aw Pam, I am so very sorry for the terrible shock and tremendous loss you are suffering.

my love to you
mig

Pam you and your family will be in our prayers.
Bradford

Pam,
I am so so sorry about your stepsons passing. This is so terrible. I am at a loss for words...please know that you and your loved ones are in my heart and in my prayers...much luv from buggie...

Dear Pam,

I'm so very sorry for your loss, and understand what sort of conflicted feelings living so far away from someone you've loved and lost can bring. Please please be kind to yourself during this time, and that means not beating yourself up with should haves and could haves. You made loving and caring decisions for Reggie. I have a friend whose sister is autistic, and I know the support and self-worth that Karen gets from her assisted living programs gives her so much more than her family could ever give her on their own. And! you were planning to go down this summer. You know in your heart you would have moved that trip forward if you had any inkling this was coming.

Unfortunately there are just not enough premonitions in this world.

Hang in there Pam. I hope you're able to get there, but if not, things will work out OK as well. I lost my grandmother over a year ago now, and I didn't go home for the funeral for so many reasons. It really tore me up inside, but in the end I realised she wasn't actually *there* anymore, and I could tell her I loved her and missed her from here just as well as I could being in Winnipeg.

My love goes out to you and your boys. I hope Reggie's somewhere nice, wearing his favourite shirt, eating pancakes and saying all the things he couldn't say when he lived on this earth.

Biggest hugs,
Jeanna

Aww Pam, I'm so sorry for your loss. You're in our thoughts and prayers.