"Hi Nanette... I'm sorry for your loss.... My son Niles died May 2009. We still miss him..... But I think everlasting life is the love you leave behind....and we really have a lot of love. My son was 14, with autism and a seizure issue. He would…"
OH GRACE I just found the rest of your email in my email...I am SUCH a dope..everything you said I get TOTALLY....yes Brandon is better off...if there really is a Heaven he HAS to be there...or NOBODY would ever get to go there...and I HAVE to believe there is a heaven or I will just self destruct...too many loved ones have gone on...to never see any of them again would be just TOO horrible to live with...We fought with everyone about everything for Brandon...so I know what you mean...so many cruelties were done to Brandon in school...but he always seemed to want to go there anyway...the KIDS seemed to be his allies by and large, although there are always those that called him names and mocked him...it was some of the ADULTS that treated him so badly...but that's to their discredit and I think he understood that somehow...he certainly saw us battling it out with them often enough...I don't regret that Brandon doesn't have to go through that anymore, and doesn't have to go to the dreaded hospital for any more chopping and poking and prodding...I just miss HIM so much...the smiles, the singing we would do back and forth to each other, his amazing chortles and guffaws and how he would sometimes grab your hand, or give you this flirty little look, and how he would bounce and shake his hands and move his feet to the music, and how in the dark of night he would call out in his sweet little boy voice which he never totally lost ...I ACHE for him
I am so sad for you ..I too lost my son recently..he just didn't wake up one morning..they said cardiac arrest, but he was only 22 ..he was severely physically disabled and had had seizures as an infant and toddler, but they had come under control ..but he had other health issues through the years..we at one time fostered a little girl with autism that I had met when I was teaching at a private school for autistic children...someday maybe we can share stories about our amazing children...so few people ever get to know our wonderful kids ..so few ever even TRY..but they have and always will be the absolute joy of my life...I spend days just staring and playing solitaire or sleeping or watching TV shows that are as mindless as possible...every once in awhile something happens to shock me back into my real world..a place I don't want to be..but I have another son who is also disabled, and I'm trying to focus on him now..more than ever he needs to feel secure and loved...I try to explain to him how my crying for his brother doesn't mean I'm not overjoyed that HE is still here with me...Bo, Brandon's older brother by adoption, is turning 29 this July, and has been grieving so deeply we are worried he will starve himself..but he has good days of eating amidst those where he refuses to eat more than a few bites, so maybe it will be ok. Sorry I am rambling....someday I would really like to hear about your son...I need someone to tell about my sons who would care..and understand their great worth...and a mom like you would know what I mean I believe....please take this hug from me and please can we be friends?
Grace, your foundation sounds like a wonderful tribute to your son. I too have started an organization in memory of my Silas ~ http://www.sysfund.org. We help young adults with cancer by funding meaningful gifts and integrative therapies. It does not make the pain of losing Sy go away, but it does help to know that I can pay my son's generosity forward. My thoughts are with you~ Lorraine
dearest grace, i dont know if we ever spoke before, but i think WE CAN BE REAL FRIENDS. i lost my daughter who had cerebral palsy, in april of 2008.
the pain - i know, i know, i know, i promise. jessy also had seizures. and there is something we have in common, not just having lost a child, but a child with special needs. there is such a different kind of attachment we have with these children, which i think no-one can appreciate.
"I can understand how that makes it even more difficult, having become a couple on that occasion.
I don't want to live without him, and I just don't feel that will ever change. So, it all seems so futile to go through this every day. "