tag:blogger.com,1999:blog-401303964563152307.post1961659389370604369..comments2024-03-28T21:36:55.157-04:00Comments on Love That Max : I shouldn't have asked thatEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-401303964563152307.post-61160814330032779742014-02-28T21:46:59.930-05:002014-02-28T21:46:59.930-05:00I so appreciate this perspective and think it will...I so appreciate this perspective and think it will help me and my husband over the next few months. I'm 34 weeks along, and my doctors recently told us our IUGR baby shows signs of a heart problem and maybe T21. I've been getting worked up after asking questions that have no answers yet (how will this tiny baby tolerate heart surgery, etc). While I'm starting to read up on how to best take care of him/her, this post made me feel like it's okay not to obsess over the unknown. Thank you!Meredithnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-59987673543226168702014-02-26T18:09:56.980-05:002014-02-26T18:09:56.980-05:00I feel a little bit of what you are thinking about...I feel a little bit of what you are thinking about, from a different angle. When I was I think 30 years old or so, I was visiting my Dad for a few days. He had recently moved, so there were boxes to be unpacked, one or two of which contained old files and records. I was helping him sort them out, and I found a folder that contained a complete evaluation done on me when I was 13 years old. I think it was done then because we had moved to a different state and got hooked up with a new teaching hospital, and they must have decided it was a good time for a full re-evaluation. Anyway, I read the whole damned thing. It was hard right then to read some of it. A few things were kind of nice to read, but it was so clinical and bloodless. Plus, I did find out a handful of things I'd not known before. Nothing shattering, but it did bother me for awhile thinking I was a full-on adult and still didn't know all there was to know ... that other people knew. Personally, though, I would rather know all the details. I can compartmentalize as needed, and not dwell on them day to day. But at some point I want to know all that can be known and then decide what to do with it. All that technical jargon doesn't feel like me at first, but in fact it IS me, it's part of me. It doesn't "define" me, but it isn't separate from me, either. Believe it or not, some of it even helps explain me, shed light on aspects of myself that might otherwise be a perplexing mystery. I guess I'm being devils advocate here and saying that evaluations aren't easy to process, but they aren't insulting and they don't have to undermine how you feel about someone. Unless you develop an unhealthy obsession with them ... like focusing all the time on certain metrics ... tests and evaluations can be useful, in carefully calibrated doses.apulranghttps://www.blogger.com/profile/16133974049950425863noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62838934030390169332014-02-26T18:00:17.295-05:002014-02-26T18:00:17.295-05:00So good to read another person's take. I ask e...So good to read another person's take. I ask enough questions and the surgeons will answer them with details (not to that point with neurology yet, think I 'm to the point where I can tell them to stop!, stop saying there's a chance of growing out of seizures, would prefer they just admit they don't know and the chances are slim). Knowing oneself and the differences between info that helps and info that weighs one down (or misleads) is part of why I read this and a few other blogs. <br />Love the group therapy.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-70306975876582968122014-02-25T22:49:36.851-05:002014-02-25T22:49:36.851-05:00I so understand this post. When we got Simeon'...I so understand this post. When we got Simeon's speech evaluation back I was devastated. It really didn't tell me anything I didn't know, but seeing it written down on a piece of paper always gets me torn up inside. It almost makes me feel the way I felt when I was pregnant and we knew my son would be born with spina bifida. It all just looked so bad on paper, ya know? Our pediatrician used to require us to fill out a developmental questionnaire at every well check. It was so painful just marking the "no" box for page after page. I finally wrote an "addendum" with some questions I could say "yes" to to cheer myself up. I turned it in along with their evaluation. They never made me do one again. :) I posted a photo of it here: http://www.whatdoyoudodear.com/2013/02/addendum-for-simeon.html Mary Evelynhttps://www.blogger.com/profile/03391350462599128358noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-41736079860223544232014-02-25T21:37:33.414-05:002014-02-25T21:37:33.414-05:00I understand completely - there are a lot of thing...I understand completely - there are a lot of things I wish I had not asked. It is not a denial thing - it is a survival thing. Julie Steinberghttps://www.blogger.com/profile/05749608879067906559noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-64142184172119322672014-02-25T19:30:52.679-05:002014-02-25T19:30:52.679-05:00I am in that place right now of questioning and co...I am in that place right now of questioning and comparing my son to his peers. To reading all the evaluations and feeling my heart sink. We don't know yet what is wrong. But my son Noah is a delight and so many people who know him also adore him. So even though he isn't where he should be developmentally, he is where he should be in his charming ways. I'm praying the genetic test we will do may provide a diagnosis so I can stop wondering about Noah and focus on appreciating him. Cleftmomhttps://www.blogger.com/profile/06939814686167316590noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-16153921741604691492014-02-25T17:34:20.201-05:002014-02-25T17:34:20.201-05:00Ellen....
"What I see is a sunny kid making p...Ellen....<br />"What I see is a sunny kid making progress as best as he can, a kid who's defied the doomsaying doctors. Cerebral palsy is just one part of who Max is; it doesn't define him.". I needed to read those words right now!! ;)<br />Well!! I am off to work on a fictional children's story!! ;-D<br />--Raelyn <br /><br />Mary Louhttps://www.blogger.com/profile/01005199691237610718noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-5246074549704312732014-02-25T16:02:38.970-05:002014-02-25T16:02:38.970-05:00Burying the answers to question we never should ha...Burying the answers to question we never should have asked is a hard thing to do! Of course I don't want my child to be defined by her disabilities. I have a hard time not doing that myself sometimes! I have been told by some that by accepting Bethany's disabilities I am preventing her from being healed. Apparently I should ignore all her issues so as not to stop God from making her all better! Being the mom of a special needs kid is definitely not always easy!Sylviahttp://faithfulmomof9.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-33472582556523295012014-02-25T14:12:48.830-05:002014-02-25T14:12:48.830-05:00Yes, I totally identify with this. I have trouble ...Yes, I totally identify with this. I have trouble not googling the hypotheses that the doctors throw around (we have no diagnosis for my daughter), then freak out at what I read. It's a negative cycle but the temptation to know, to understand, is so strong. The latest hypothesis is leukodystrophy, which I'm struggling with as I thought we had ruled out a degenerative condition. It's such a roller coaster. (I don't like roller coasters, figurative or real)Lynnhttps://www.blogger.com/profile/16900068779426713043noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-78470835349601670302014-02-25T12:42:52.264-05:002014-02-25T12:42:52.264-05:00This is so true...Thanks for this...but somehow, a...This is so true...Thanks for this...but somehow, at least for me, my constant want to give my son everything he needs to heal and excel always raise those types of questions. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-2383857461355876512014-02-25T09:37:03.963-05:002014-02-25T09:37:03.963-05:00Hi Ellen -- I think that when we go around in circ...Hi Ellen -- I think that when we go around in circles asking why about things related to our kids part of it is a control thing. If we could only pin down exactly "why" something happened, it gives us a sense of control. It's hard to accept that many things are just random and that we will never have a definitive answer (in the same way I will never really know "why" the sky is blue). xoBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-61989275173519761622014-02-25T09:32:31.843-05:002014-02-25T09:32:31.843-05:00Thanks for sharing this, it is EXACTLY what I need...Thanks for sharing this, it is EXACTLY what I needed to hear!Ellahttps://www.blogger.com/profile/10125388842104331100noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37492835260772400492014-02-25T07:41:37.063-05:002014-02-25T07:41:37.063-05:00Like you said Ellen CP is just a part of Max it do...Like you said Ellen CP is just a part of Max it does not define him try to continue seeing Max the person not his eyes, his arms or his feet.Nishahttp://nisha360.com/noreply@blogger.com