I have just only found out about my brother 4 days ago and I already have no desire to eat . I can barely sleep . I cry all the time and had a panic attack 2 days ago . All I think about is how my little brother is suffering . I couldn’t even shop for groceries last night with out feeling just so horribly sad and anxious . I hope this passes soon and my brother gets better .
My son was diagnosed four years ago. At first my husband, daughter and I were shell shocked, scrambling to just make any sense of it. I cried for days and days - tears would well up at the most inopportune times. I would walk around at work, eyes brimming with tears hoping no one would notice. I withdrew into my shell, found it hard to even force a smile. I found the best place for me to cry was in the shower, all alone and the water would wash away my tears as quickly as they appeared. Went through the motions of working and living. My only focus was/is my son, trying to understand this horrible disease and doing everything in my power to help him. My coping mechanisms have become better with time, but I still unexpectedly cry at the drop of a hat, the underlying sadness in my heart will never go away.
Right before Christmas, my husband and I watched a new group to us called Pentatonix on You Tube sing Little Drummer Boy. We were both taken aback how the tall singer in the group (Scott) looks so much like our son, same build, style of dress, down to the same orange hat my son loves to wear. Hubby and I both broke down and cried watching the video.
I cry and Grieve everyday, I feel like God took my only child from me…
There is a new and different wave hitting me. Not being the caregiver. All that work has paid off, all the effort has made a difference. My big brother grows stronger and more directly involved with his healing process everyday.
I love it. I’m proud of him and I’m in awe of the person emerging from this maze of SZ. I treasure the days I’ve been lucky to share with him. I am grateful for these good days that out number the bad. I am in shock for finally reaching this point that just seemed like a vague goal mentioned in books written by other people. Remission. What a gift.
It’s everything we worked for and it looks like it’s here for a while. I sort of feel like King Theodon in Lord of the Rings when Ghandalf said, “Rise from this curse, Rise and breathe the free air” 
But on a selfish note, and please forgive me… I don’t know how not to do what I’ve always done. I am being deactivated from active duty and put on stand down and stand by. I don’t know what to do. The lifeguard is always on duty.
I’m thinking I’m going into Post rescue response. We lifeguards have the back office freak out after the serious rescue. The victim has been rescued, the EMT’s have reported back with a thumbs up and the final reports have been filed, then… then it’s time to fall apart. I think that’s what is happening to me. I guess even positive change takes adjustment.
Thank you for letting me post.
Better meds, more research, improved therapies, better education, better prognosis, new laws, new PACT teams, more supportive attitudes from schools and other institutions, more knowledge, more sharing, more ideas, more tolerance, more hope, more love and more healing.
Remission is possible. I know it can come to us all…
Just because you don’t have a pool or ocean in front of you, doesn’t make you any less a fellow lifeguard.
May you all be off duty someday soon.