tag:blogger.com,1999:blog-7070899434981664008.post3560798823014451549..comments2023-04-13T01:50:26.059-07:00Comments on Live Art.fully: Guilt and the Chronically Ill ParentJenniferhttp://www.blogger.com/profile/07810736265869305528noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-7070899434981664008.post-55354578935820074802014-05-19T04:41:31.420-07:002014-05-19T04:41:31.420-07:00My child has proved to me that kids cope very well...My child has proved to me that kids cope very well with their parents' weaknesses. Be they temperamental or physical. They cope. But we inevitably feel the guilt. My personal solution is to fill time as much as I can with what I can do with my son or not. And I'm lucky my son is quite happy to be an only child because another kid is not a valid option.Nolwennnoreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-81757745123292247892011-09-18T00:44:40.739-07:002011-09-18T00:44:40.739-07:00I just found your blog today while cruising around...I just found your blog today while cruising around reading about Sara. This parenting with a chronic illness is tough sometimes. I wonder if I could do it more gracefully, more lovingly. My heart breaks every time that I tell my sweet kids that mommy doesn't feel good today. Will they have the "mormal" childhood that I wish for them. Your posts were such an encouragement to me today- had a hard today with the pain and fatigue of fibromyalgia. Thank you for sharing.Kristen Knoreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-77947223545049464052011-08-13T23:56:38.311-07:002011-08-13T23:56:38.311-07:00This is my hardest topic as well. I've been dx...This is my hardest topic as well. I've been dx since 2001 but was full blown for 5+ yrs before and symptoms started in about 1st grade. I flared in 2005 a few weeks before my daughter was born. We adopted so no pregnancy related and not stress as we didn't even know about her when the flare started. I've never gotten in controlled and also have one new mountain as soon as I finish the last. I struggle with my daughter not really knowing "me". But I realized she was listening when she recited all of my accomplishments prior to disability. She use to say I "stayed home to clean" when she went to school since I couldn't care for her. I thought finally she realizes I am more on the inside. I too believe love is most important. I personally believe they need lots of knowledge vs pretending it is fine. It is hard enough being a parent let alone with chronic pain and disease. It is full time job caring for ourselves. Thank you for putting it out there and helping others to understand. ;)Camillenoreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-11515799388856945832011-08-05T15:19:31.180-07:002011-08-05T15:19:31.180-07:00Jennifer,
Just found your blog and I'm so gl...Jennifer, <br /><br />Just found your blog and I'm so glad I did. I was diagnosed with AS in June, have 2 daughters (3 1/2 and 11 months) and have been trying to navigate through this season and find a "new normal". I look forward to reading your blog and getting to know you more.<br /><br />Gentle hugs, <br />Kim <br /><br />thriveoutloud.blogspot.comThrive Out Loudhttps://www.blogger.com/profile/04246025529924628470noreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-25396443469464925922011-07-15T05:52:22.150-07:002011-07-15T05:52:22.150-07:00It's nice to know that I am not alone with par...It's nice to know that I am not alone with parenting while having a chronic illness. Sometimes i feel like i don't do enough for my kids. I do know they are learning life lessons that they couldn't learn otherwise. They also know how much they are deeply loved!<br /><br />motheringfromdaytoday.blogspot.comTanyahttps://www.blogger.com/profile/09609281870635297761noreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-80340955576714183892011-06-30T00:29:25.099-07:002011-06-30T00:29:25.099-07:00I hear you loud and clear. I love your heart and ...I hear you loud and clear. I love your heart and how you choose to be transparent. It ministers to so many of us. Thank you.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-84194918396350089452011-06-23T22:02:47.157-07:002011-06-23T22:02:47.157-07:00You write so beautifully and explain things so wel...You write so beautifully and explain things so well! I am in awe of how you can concentrate years of pain, fear, and medical interventions into an artful sentence. <br /><br />Since the moment my water broke, my experience of parenting has been a vicious struggle to adjust my expectations to the reality we actually face. Perhaps I had some of that in my life before, but it was certainly never to this degree. The latest round is leaving me gasping and raw so that I identify strongly with that aspect of this post. I have to continue to breathe and remind myself that love may cover a multitude of error, and the most important thing is for my child to have no doubt that he is unconditionally loved. But you say it better! <br /><br />Love you, WendyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-12432862020966935772011-06-23T07:31:42.470-07:002011-06-23T07:31:42.470-07:00brilliant post, look forward to reading some morebrilliant post, look forward to reading some moreAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-10888123755692846632011-06-22T22:04:31.151-07:002011-06-22T22:04:31.151-07:00Oh Kei, my friend, you humble me. I so desire to b...Oh Kei, my friend, you humble me. I so desire to be a truly good mom and a Godly parent, and so often I fail. Thank you for the encouragement!Jenniferhttps://www.blogger.com/profile/07810736265869305528noreply@blogger.comtag:blogger.com,1999:blog-7070899434981664008.post-46866187926412060352011-06-22T21:44:58.776-07:002011-06-22T21:44:58.776-07:00And yet, despite the troubles you face, you are tw...And yet, despite the troubles you face, you are twice the mom others could ever hope to be. I often look up to you and find myself thinking of you when I am exasperated as a parent. You are such an example of what a Godly parent is.Keihttps://www.blogger.com/profile/01698540716114669358noreply@blogger.com