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So hard to be the spouse or parent ,brother or sister etc to be the one<br />
that tries to keep living after their death. My husband died in July of<br />
2009 and my 37 year old Son in Nov 2009. Both were unexpected and no<br />
suffering which is good. However I did not get to say I love you and always<br />
will. I had always made sure that was the last words I said so I knew they<br />
knew. My daughter being so sick from the immune systems keeps it on my mind<br />
everyday it could be the last for either and love all that I can.<br />
Hugs<br />

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Replies to "So hard to be the spouse or parent ,brother or sister etc to be the one..."

I do know that stress plays a big part on your immune system because my husband go Wegeners the same year like 10 after my 13 year old son drown in the bathtub while taking a shower due to a seizure. They believe. I think he slipped and fell stepping out and in for a new bar of soap and hit his head hard enough to knock him inconcious face down. Most horrible day of our lives. I will never get over that<br />
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Dear mswanda,
Your story is similar to mine but no one can compare the sadness, loss and grieving one goes through when the love of their life has gone and their children as well. This grief coupled with losing one son to a hit and run driver (never apprehended,) and not six months since my Emmanuel passed, is the devastation I feel at the prospect of losing my youngest son who is the baby of my family of eight.
He has prepared his funeral and is giving his prized possessions to (so far) a rifle belonging to his late father. He is a stoic boy, the same as his father and he keeps his sorrows and fears closed inside his heart. I cannot hold him and grieve with him and give him my support. He would not want that of me. He has seen to it that his wife and two sons will be all right. He is a wonderful father to his two sons and they are a credit to being raised well.
I believe I wrote to you recently, not knowing your tragic story beforehand. The last I knew my son had had three biopsies all on his left shoulder blade near his neck. Since them he had gifted his brother with the gift that "almost knocked over" his brother. Evidently the biopsies just solidified his realization that he has a lethal disease.
Every story I have heard on our Forum about Wegeners and associated diseases do not give a happy forecast of what a victim may expect for life expectancy or the treatments that do so much damage to sustain life. My son will not want either one of those options.
I am now ninety years of age. I have seem my dear ones die since I was eight when my lovely mother died of heart disease. After that it was my beloved maternal grandmother "Marmie" who passed away and on up through my younger years the loss mounted. I have buried my first husband in 1990 and one son in 1996. In 2015 I buried my second beloved husband and learned of the seizure my son had, after which the doctors were stumped as to his condition till a few months ago when a new doctor went over every possibility for my son's illness. Then two months ago, the biopsies were performed.
The house here is empty but for the comfort it gives me being the home where my husband was born and where he passed so peacefully, as was his dear way through life. My other children are all grown and aging and have grand children now. I thought my youngest son would have a long and happy life. I do not care to go out into society to join others anymore. I have stenosis of the spine and fall if not careful so I depend on my computer and TV along with calls from dear ones.
I wonder what to expect as regards my boy's life and future expectations. Thank you for sharing and taking time to read this message. Bless you.