Rhabdomyosarcoma Support Group

First of all let me say that I am deeply sorry for your loss. I pray that Benjamin's parents. family, and friends will find comfort and peace of mind in the midst of the grief and sadness that is surely consuming them.

There is not much you can say, unfortunately. If you've never lost a child, there is no way to express sincere empathy for your brother and sister-in-law. It has been said that there is no greater loss than the loss of your own child. At 22 years old, I lost my teenage brother to the disease. He and I were extremely close and in some ways, I was like second mother to him. My brother, mother and I experienced the course of his disease together so when my brother passed away, my mother and I looked to eachother for support. I suffered (and continue to grieve) from the loss but have tried to be strong for my mother during this difficult time. I know that, no matter how badly it hurts to lose my brother, my pain cannot compare my mother having to go on in life without her baby. I know my mother will never feel complete without him but, realizes that his absence is for the best. The only thing worse than losing someone you love is helplessly watching your loved one suffer.

It must have heartbreaking to watch Benjamin fight for his life. After the denial, anger, frustration and struggle to seek answers the ultimate question, "why my child?", Benjamin's parents will most likely feel a sense of relief. Knowing that their child has reached his eternal resting place and is no longer suffering from such a horrible illness should bring them tranquility.

You should not feel obgigated to say anything until the appropriate words come from your heart. Feed off of their emotions and offer support. The best thing that you can do is listen, The last thing you want to do is give advise that may be interpreted as telling them how to feel. If they are feeling angry and bitter, remind them that it is okay to feel that way and ecourage them to vent their frustartions. If they are enjoying fond memories and remembering how happy Benjamin made them, smile and share ther joy. I can tell you from personal experience that my parents and I were much more welcoming to support than advise immediately after our loss. You should offer your help in other areas so that they can focus on themselves and eachother now. Offer to help with funeral arrangements or caring for their other children if thery have any. I assume that they have many well-wishing friends and family members staying very close and trying to help right now. They may need some space or alone-time so you can help by reminding the rest of your family to respect their privacy and allow them to grieve as a couple. The hardest time for them is yet to come. When the funeral is over, the flowers/gifts/cards stop coming, and they begin to transition back into life before cancer is when they will need you most. That's when you should make it a point to check in frequently, ask them open-ended questions about their feelings, and remind them how much you care for them.

I hope this helps. Please let me know if you ever have any more questions. God bless.

I am writting to you 2 years later and i pray thaat your family has somewhat found a way to live with the void. I come to this website to share the spirit of my grand-daughter who also won over this disease just a month before you nephew. Her name is Ally. I say is because she will always live in our hearts and the countless stories about her which serves as an insporation to those whose lives she touched. There are no words that can be offered but support in silence is someties is the most valuable gift. This has been true in my case. I wa sthere when ally came into this world and at the age of 14 i watched the process as she prepared to leave us. I was blested to care for her in her final months and the profound things i baer witness to is nothing but a mystery. Not a parent I know would gladly give up him/her self to prevent the pain these children endure. But I've come to know that this ifor whatever reason is thiers to baer. Those who helped Jesus carry his cross were truly blested. As you hepl your brother so to shall you be blessed. Just continue to bethere this is going to be a long one. May the paeace which surpasses all understanding be with you and your family today on Ally's annerversery and forever. May the God of your understanding continue to bless you all. Aloha