tag:blogger.com,1999:blog-3457913521076392267.post3282052906341861834..comments2023-07-06T06:23:01.515-07:00Comments on Behind my smile: Behind my smilehttp://www.blogger.com/profile/06972581858393230715noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-3457913521076392267.post-78611462680091092292011-12-30T19:14:31.583-08:002011-12-30T19:14:31.583-08:00Veronica hugs to you. That was most undoubtedly a...Veronica hugs to you. That was most undoubtedly a very difficult moment. As difficult as it already is living with Duchenne, we (our sons) still have to face the insensitivety of others. I have never really discussed death with my two sons who are 14 and 18. I have decided if they should ask I would gently talk about Duchenne and the expected future. It is such a hard situation and NO PARENT SHOULD EVER HAVE TO PREPARE THEIR CHILD FOR IT.<br /><br /> I too had a family member -a great nephew ask them blatantly when will they die. The anguish that moment caused has never really left me. My sons both cried that day. <br /><br />Yes we need to be mothers and warriors who with hearts of gold and the strength to persevere through it all. Hugs.Behind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-24027992409677217762011-12-30T17:03:54.032-08:002011-12-30T17:03:54.032-08:00I too recently experienced a moment were I wished ...I too recently experienced a moment were I wished I was more courageous in my reaction or lack thereof. It was on Christmas eve when an insensitive distant relative on my new husband's side asked blatantly in front of my 10 year old and 15 whom also have Duchenne MD, "WHAT IS WRONG WITH THEM"? My mother in law tells her about their "terminal" condition and this young 20-something year old says "DOESN'T TERMINAL MEAN DYING?". I was floored with anxiety then anger...I haven't even talked to my 10 year old about his life expectancy! I didn't say a word! Not one! :( still haunts me. I think I should have taught this insensitive child the hurt her curiosity causes. Sigh, I have sworn that I will no longer keep quiet from now on. XoVeronicaLynArtistryhttps://www.blogger.com/profile/05608311605896045303noreply@blogger.com