Son Died of Unusual Circumstances

[sue2ndtimemom]

I feel weird posting here because of the circumstances surrounding my 9 yr old son's death. I need the relief of sharing it even though I'm afraid of negative feedback. My son David was 9 yrs old and all of his life we thought he had a severe form of Autism. He was found, in his autopsy, to have brain malformation which caused Autistic-like behaviors. He was non verbal, not potty trained and had no self care skills. He could look you in the eye and speak volumes though. He was so very sweet and cuddly and had a huge wealth of compassion . He had a lot of erratic behaviors and the last few years we couldn't take him out anywhere without him having a huge meltdown. He was very volatile and would brake things and put himself into unsafe situations. It required someone to be watching him at all times and was a definite "2 person" job. My husband and I adored our sweet David and his brother who is still with us. We loved to hang out with David and cuddle him and laugh with him. He loved the "Wiggles" (an Australian kids band) and would rock out every time we watched the videos or listened to the music. In 2009 my husband had a stroke and was in a nursing home for 16 months. He lost the use of his right side and is wheelchair bound. I had no one who could help me with David and I made tons of phone calls to see what help was available. Most of our relatives are out of state and my Father-in-Law is 81 yrs old and was unable to handle helping with him. After 5 weeks of trying to get help and being unable to get any, I called the Regional Center to help me place him in a group home till I could get some help. I was unable to care for him alone due to my many health issues, and the need for him to be watched every second of the day. I was also raising his older brother who didn't require non stop supervision. While my sweet son was in the 3rd group home (most group homes weren't equipped to handle someone with the extreme behavioral issues he had) his medications got changed around and he died of severe dehydration :,(. He was only in the 3rd group home for 6 weeks and lost almost 20 lbs!!! At the other group homes I would bring David home several weekends a month for 3 day weekends, but at this group home I wasn't allowed to see him for 5 weeks so he could acclimate to his new surroundings . I had him home for a visit a week and a half before he died, and I asked the Regional Center case worker if she didn't find it alarming that my son had lost so much weight during that 5 weeks. The lady who ran the group home said it was because they went hiking all the time, and the case worker was satisfied with that response. After reading the autopsy I found out that she had likely locked him in the room the night he passed away and he was unable to get any water. He had almost no food in his system. She was a vegan, and I would bet she tried to feed him that food and let him starve when he wouldn't eat it!!! I'm so mad and sad by all this!!! My poor baby's last night was hell and he was alone!! I play over and over and over, in my head, the memory of how sad he was to go to the group home and how heart breaking it was to all of us. My husband hadn't seen him in 6 months before he passed away because every time I took him to the nursing home to visit his Daddy he would flip out and scream on the floor . I am suffering from horrible insomnia and huge anger issues. I just hate that I couldn't save him. I miss him so bad my teeth ache. I have never met anyone who has gone through anything remotely similar to this so I feel very alone in this. My husband was able to come home and now sleeps on a hospital bed in the living room. He misses David horribly too!! I have a million memories of his smile, his tears, his laugh, his hugs and all the times we spent cuddling. Thank you for letting me share this.

[westleysmom]

Sue-I'm so sorry for your loss. You are a good Mom who has had many burdens, and now this burden of grief that you bear, and the guilt that most of us who have lost a child, at any age, under any circumstances, also feel. We couldn't save them, we are Moms and Dads, and we always love and protect our kids, and when things happen that are beyond our control, we feel guilty. My son Westley died in his sleep at friend's house January 13, 2010. He would have been 21 on the 19th. I still wonder what I did or didn't do that I should or shouldn't have that would have saved him. I have been posting here since summer 2010, and the Loss of Adult Child thread is the most active and there I have found such support and love and comfort in the company of those who know their version of the pain and grief and guilt that I have. We are all different, as our kids were all different, but if you feel like coming there, you will be welcomed with open arms, even though your son was not an adult. You will not get negative feedback, you did all you could do, and that is all any of us can do. I'm so sorry that his Daddy didn't get to see David for so long and glad that he is back home now, although I'm sure that he feels the same grief and has much to deal with, as you do too. The insomnia and anger sometimes visit my house as well, I think its true for most of us grieving parents. Please hold on to your beautiful memories of David's smiles and moments that you had together. Sometimes the memories at the end are all that I seem to focus on, but the sweet and good memories are what we have to keep in our hearts as Moms. My heart to you and I hope that you will come back and post more about your angel and your other son.

[Maddy6]

Sue,

I am so very sorry for the loss of your precious son David. My heart broke as I read your story and the pain you must feel. I lost my 22 you daughter in August of 2007. Next month she would be turning 27 and the pain of her loss is something I think I will never recover from. Those of us on this site fully understand the raw pain over the loss of a child. You are welcome here with no judgement, or negative feedback. We all have known insomnia and anger too, especially in the beginning. Others listen and understand here. I suffered in denial for a very long time. I could not even deal with the pain. Our family had gone through the tragedy of Hurricane Katrina and relocating etc. in the timeframe before her death. I had so much overwhelming tragedy I could not cope over her loss. It was not until January of this year that I found this site. People here have helped me to understand a lot about my grief. They made me realize that guilt was a normal part of it. We all do it, or have done it. They also made me realize that there was hope. And above all they listened and cared. I have come extremely far in this short time because of the caring souls on this site.

I encourage you to come back and talk to us. Tell us all about David. There is a gallery where you can post pictures also. We are so sorry for your hurt and pain. For the loss and ache you feel from missing David. We are here for you. When you click on "Loss of Child," there will be another thread titled "Loss of Adult Child," click on that and post there. It does not matter the age of the child and all are welcome. That is just the thread that everyone goes to and there are a multitude of others there who will help you and reach out. Please come back and let us know how you are doing. We care.

MADDY