tag:blogger.com,1999:blog-10665946.post8314349331141814506..comments2023-08-12T09:50:06.698-05:00Comments on Unique But Not Alone...life with the Alpha Girls: More Courage Through SharingJenhttp://www.blogger.com/profile/12860934723471342394noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-10665946.post-66682928002879502772008-05-26T22:06:00.000-05:002008-05-26T22:06:00.000-05:00Hello, I have finally made it over to visit and ge...Hello, I have finally made it over to visit and get acquainted. Thank you so much for sharing the heart of a wonderful Mother. It is so familure what you speak of with the sensory stuff. ?Both of my children have sensory integration challenges. It drove me to tears more than once how folks just don't get it.It is frustrating when cup after cup gets spilled and floors are mopped time after time while we console the wounded ego, and do our best to keep good humor.Donettahttps://www.blogger.com/profile/13530145585581721795noreply@blogger.comtag:blogger.com,1999:blog-10665946.post-33060094085113884992008-05-26T12:52:00.000-05:002008-05-26T12:52:00.000-05:00You put all the right words to the feelings we hav...You put all the right words to the feelings we have as parents to preemies. It always hacks me off when a Dr. refers to my son as a "former-preemie". He will always bare the consequences of being born at 25 weeks and all that brought along with it, and as such will always be a Preemie. Even though there are not many physical scars, and the CP is so mild, you have to know what you are looking for, he will always wear unseen scars, including SPD. <BR/><BR/>I wish the media and the docs would tell families to expect these things, instead of patting themselves on the back and touting each discharge as a success. Even as the daughter of a NICU nurse, I was wholly unprepared for the challenges and diagnosis to continue long after NICU. (We are just starting down the road of SPD, and we may be facing epilepsy, as well.) I thought, whew, no brain bleed, no significant illness, aside from a biological heart defect that won't affect him until he is an old man and I am no longer around to help him, and his heart surgery. Just the usual preemie issues. <BR/><BR/>Anyway, all that to say: Thank you, well done!<BR/><BR/>MichelleAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10665946.post-42344418071833168622008-05-25T09:31:00.000-05:002008-05-25T09:31:00.000-05:00Eloquent as always Jen. This post brought tears t...Eloquent as always Jen. This post brought tears to my eyes. Your girls are so beautiful.~Denise~https://www.blogger.com/profile/01586221664679114198noreply@blogger.comtag:blogger.com,1999:blog-10665946.post-15036816643350762372008-05-24T23:28:00.000-05:002008-05-24T23:28:00.000-05:00Thanks for your kind words regarding my post and a...Thanks for your kind words regarding my post and also for enlightening me regarding the issues that prematurity causes. I have a friend who just brought her baby home this past week from the NICU. He was born at 24 weeks. I wondered what lasting effects there would be.Shannon @ Gabi's Worldhttps://www.blogger.com/profile/06489515190295297209noreply@blogger.comtag:blogger.com,1999:blog-10665946.post-51630707983325413022008-05-24T20:44:00.000-05:002008-05-24T20:44:00.000-05:00Very eloquent, Jen, and I too appreciate what you ...Very eloquent, Jen, and I too appreciate what you do to dispel the myths about preemies. My boys both have the sensory issues as well; I was just nodding my head as I read your post, especially the part about how Grace crashes into people, and jumps up right into your chin. Andrew's done that more times than I care to remember. Ouch is right!Lowcountry Momhttps://www.blogger.com/profile/03620087946824229917noreply@blogger.comtag:blogger.com,1999:blog-10665946.post-38014424704574881132008-05-24T07:41:00.000-05:002008-05-24T07:41:00.000-05:00I have always felt that I understood the struggles...I have always felt that I understood the struggles that Grace and Meghan are going through. I remember trying to convince you that Grace was taller than the other 4 year olds, but you had a hard time accepting it :). Now as a mommy of a preemie, I understand the struggles that you go through. I am lucky because Hailey is gaining weight, but uninformed people believe that means she is alright and just small. If that were only the case, right?<BR/>Thank you for always being my strength and my voice of reason. Love ya!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10665946.post-13821141757545050492008-05-23T22:48:00.000-05:002008-05-23T22:48:00.000-05:00This was a truly amazing post, Jen. I struggle wi...This was a truly amazing post, Jen. I struggle with some similar issues with Jacqui -- It can be really challenging and frustrating to help people understand that there is a medical issue with your child when they appear healthy to all other appearances. <BR/><BR/>I've learned to never make assumptions that I know what is going on with anyone -- there are just too many variables and it's so unfair to just stick people in boxes with labels just because it's convenient. You did such an amazing job of explaining the challenges facing preemies and I am once again in awe of what a wonderful advocate you are for your lovely girls. Much applause!<BR/><BR/>Michelle @ In The Life Of A ChildAnonymousnoreply@blogger.com