tag:blogger.com,1999:blog-33281653.post6996837467773471148..comments2023-09-04T11:20:08.804-05:00Comments on Life with the 'Tars: DisclosureKylahttp://www.blogger.com/profile/03311014761113076785noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-33281653.post-36613110772915794182009-07-13T13:22:34.587-05:002009-07-13T13:22:34.587-05:00CMK: I remember the first time I writing "spe...CMK: I remember the first time I writing "special needs" in regards to KayTar. It felt like a total sucker punch...now I don't even give it a second thought, but it takes time, I think.<br /><br />That is exactly how I feel about the episodes. I know my anxiety isn't going to help, but I can't seem to step back from the edge when she is due for one of these things. It is nerve wracking. You hope it doesn't happen, but can't truly relax until it does. Ugh.Kylahttps://www.blogger.com/profile/03311014761113076785noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-73850036429400928922009-07-13T11:47:08.638-05:002009-07-13T11:47:08.638-05:00I haven't been able to say out loud yet that m...I haven't been able to say out loud yet that my DS is "special needs" He's only 15 months and not really ivolved in typical kid activities yet outside of PT. Most of the time, I think of him as a normal kid and don't give it much thought. Until I find myself explaining his neurological issues and "low tone" when good meaning folks ask if he's walking yet and he only barely tummy crawl. We're 2weeks overdue now for an episode and I find myself on edge and unable to relax, waiting for the dreaded attack that I hope never comes.<br />So here's to feeling normal even if it's only for a moment!Xinabean.blogspot.comhttps://www.blogger.com/profile/04564897709568816912noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-47852489655205831092009-07-11T23:57:17.750-05:002009-07-11T23:57:17.750-05:00You are right, it's not "normal" but...You are right, it's not "normal" but the fact that you don't always introduce her now with qualifiers just indicates how far she has come. It is my hope (and prayer) that she will continue to improve as radically. But our Kaytar will never be "normal" She is so exceptional. Everyone who meets her, in person, or virtually sees that. :)Ameliahttps://www.blogger.com/profile/04328858797758119050noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-15048381014955047912009-07-11T13:31:39.254-05:002009-07-11T13:31:39.254-05:00Gosh what a game of push and pull back. How stres...Gosh what a game of push and pull back. How stressful for you trying to know how much you can let go and what you can't. There is a bunch of stuff in Kaytar's little world that is not "normal" but WOW how far has she come?! Really, I am so impressed with her!Juliehttps://www.blogger.com/profile/02672442441423629410noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-74911239671241171612009-07-11T06:29:14.928-05:002009-07-11T06:29:14.928-05:00This may be silly, but is it possible she is aller...This may be silly, but is it possible she is allergic to sunlight? Or can't metabolize it?Unknownhttps://www.blogger.com/profile/11614167541581032209noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-66178836226774209242009-07-10T23:46:09.716-05:002009-07-10T23:46:09.716-05:00well if that's not emotionally exhausting!??!
...well if that's not emotionally exhausting!??!<br /><br />Ugh. I hear ya though...I forget sometimes that I am a "special needs" parent until I'm placed in a situation such as Kaytars swimm lessons and BAM...oh yeah. :(<br /><br />Hugs.shereehttps://www.blogger.com/profile/16904593196654715011noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-58378949437456564962009-07-10T17:34:43.670-05:002009-07-10T17:34:43.670-05:00If regular sunglasses still let in too much light ...If regular sunglasses still let in too much light for KayTar, have you asked her eye doctor about specially-made ones? They are available to... fight? photophobia. (My apologies if you knew that years ago!) <br /><br />In even more obvious suggestions, she might like starting a nice hat collection; I can't tolerate sunlight very well either, so I have a collection of baseball caps to wear whenever I'm outside during the day.Corinnhttps://www.blogger.com/profile/01200830011316788522noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-80641541556982677292009-07-10T16:50:29.855-05:002009-07-10T16:50:29.855-05:00Did I send you this?
http://www.pulsus.com/journa...Did I send you this? <br />http://www.pulsus.com/journals/abstract.jsp?sCurrPg=abstract&jnlKy=5&atlKy=8869&isuKy=860&isArt=t&fromfold=<br />I think Frank does a really nice job of explaining that not even the healthcare providers really 'get' how stressful and difficult it is to care for a complex child.moplanshttps://www.blogger.com/profile/16998309937928231527noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-85522015687625533472009-07-10T15:08:42.670-05:002009-07-10T15:08:42.670-05:00You are a fabulous mama, and I hope you all figure...You are a fabulous mama, and I hope you all figure out her mysteries very soon.tierdhttp://tierd.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-33281653.post-3814558280846308592009-07-10T13:30:57.796-05:002009-07-10T13:30:57.796-05:00"almost normal" is my favourite descript..."almost normal" is my favourite descriptor for Julia. <br />it pretty much sums up my life.<br /><br />Your description of the swimming lesson had me on edge, how stressful for you. I am so glad it didn't turn out to be an episode. Still, it underscores the constant vigilance that is just not required in 'normal' parenting.moplanshttps://www.blogger.com/profile/16998309937928231527noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-36427461373268062072009-07-10T11:04:55.587-05:002009-07-10T11:04:55.587-05:00You are an amazing person, Kyla, and an amazing mo...You are an amazing person, Kyla, and an amazing mother.mamatuliphttps://www.blogger.com/profile/02692442843330582571noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-46738526827267470082009-07-10T05:46:27.535-05:002009-07-10T05:46:27.535-05:00I don't blame you one bit for trying to normal...I don't blame you one bit for trying to normal. And as we all know, all normals are different anyway. As long as you've a finger on the pulse of her health, as you've so clearly had, keep aiming for normal because those easy moments in between are enough to feed the more difficult ones.<br /><br />It strikes me here though that even though you try for normal you are so ready in a moment to go to that other spot. You really are the best mother for Kaytar.Woman in a Windowhttps://www.blogger.com/profile/14747858840088922077noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-73510446774912363522009-07-09T23:55:41.382-05:002009-07-09T23:55:41.382-05:00she is one special little angel who is just so luc...she is one special little angel who is just so lucky to have you as a momflutterhttps://www.blogger.com/profile/11828689769747130419noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-10126846232489077762009-07-09T21:07:17.562-05:002009-07-09T21:07:17.562-05:00I've been sort of teary-eyed today. I'm n...I've been sort of teary-eyed today. I'm not sure why. This post pulled those tears right to the surface again. I'm so sorry that your normal isn't the normal so many of us experience. I'm sorry for KayTar that she is limited by the amount of LIGHT she can tolerate. How in the world is THAT fair??? <br /><br />I wish I could hide under the towel tent with KayTar and snuggle her close, take away the normal she knows and let her run and play in the field like other 4 year olds. ARGH. <br /><br />Now I'm going to get my box of tissues and have a good cry. And no, it's NOT my time of the month, thank you very much.nataliehttps://www.blogger.com/profile/10758393907259378213noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-15741790123073673612009-07-09T19:30:35.062-05:002009-07-09T19:30:35.062-05:00What becomes our "normal" lives can vary...What becomes our "normal" lives can vary SO much from another family's life, really.Beckhttps://www.blogger.com/profile/13953517447164263617noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-38068944044334664382009-07-09T14:28:19.626-05:002009-07-09T14:28:19.626-05:00Life feels normal to you sometimes because for you...Life feels normal to you sometimes because for you it IS. I think every family has their own "normal," which is really just whatever we adapt to. Its good that you think of her as a normal kid, and she's lucky to have such a great caring mom.The Tutugirlhttps://www.blogger.com/profile/13415256236507647235noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-24309730989168837892009-07-09T13:43:26.320-05:002009-07-09T13:43:26.320-05:00In so much of what you write about her she sounds ...In so much of what you write about her she sounds like an average kid too. It is a testament to you and Josh that she is thriving the way she is. Good for you for letting her start to set her own boundaries. Good luck with the upcoming testing.Beccahttps://www.blogger.com/profile/05156777853779141522noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-79477699121296783562009-07-09T13:40:12.400-05:002009-07-09T13:40:12.400-05:00she's an extraordinary child, with a lot of no...she's an extraordinary child, with a lot of normal in her. like bon said, she's lucky to have you.Magpiehttps://www.blogger.com/profile/15460136246441367993noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-4525010950482577122009-07-09T13:29:56.662-05:002009-07-09T13:29:56.662-05:00Yeah, I am constantly walking that disclosure line...Yeah, I am constantly walking that disclosure line - sometimes my hopes for normal work out just fine, other times they don't - but then the prelabelling has had both positive and negative outcomes as well. Hard to know how much to disclose, when, why... <br /><br />KayTar definitely seems simultaneously "normal" and "extraordinary" as I read about her adventures. She's terrific.Kariannahttps://www.blogger.com/profile/17134447321568305619noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-57429171224023385952009-07-09T13:26:57.038-05:002009-07-09T13:26:57.038-05:00This is something I can relate too. I will also te...This is something I can relate too. I will also tell you that deciding what to disclose and what not too does not get any easier. <br /><br />I still wrestle with that. My daughter just wants to be a normal college girl. Most days it is possible. Somedays it is not.<br /><br />Kaytar is very lucky that you are trying so hard to make her life as "normal" as possible.mommamiahttps://www.blogger.com/profile/12776580811028926584noreply@blogger.comtag:blogger.com,1999:blog-33281653.post-47630993289029958742009-07-09T12:44:19.453-05:002009-07-09T12:44:19.453-05:00you're right, your "normal" and the ...you're right, your "normal" and the rest of the world are not quite in sync, and you must walk such a hard balance with it. <br /><br />i know that even in my own head around O's very minor asthma issues there exist two conflicting dialogues of "oh i should be a responsible parent and make sure we have x and y and z lined up in case of blah blah blah" and "oh i should be a responsible parent and allow him to find his own limits and not be prelabelled and blah blah blah"...and the societal discourse around helicopter parenting makes me wary to overdo it but...bah. you can't win. and that's even standing firmly within the privileged range of "normal."<br /><br />all i really got is, i hear you and feel for you, and it's got to be a weight, the pressure to care for her just right without making it too much.<br /><br />i do know she's extraordinarily lucky to have you...and vice versa.Bonhttps://www.blogger.com/profile/14403701620708365171noreply@blogger.com