tag:blogger.com,1999:blog-7842566243402910997.post7054157198444913274..comments2023-10-26T04:53:40.534-04:00Comments on Journey of Hope: Hitting the marks...http://www.blogger.com/profile/09336709560525934659noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-7842566243402910997.post-24298536094927141742009-01-19T08:09:00.000-05:002009-01-19T08:09:00.000-05:00Hey, sorry this is an old post, but i'm new to the...Hey, sorry this is an old post, but i'm new to the cdls blog circuit.<BR/><BR/>Emma was diagnosed last week - she's two months old (or 1, gestationally, but I guess it doesn't really matter).<BR/><BR/>Thank you for putting words to the worry that acceptance will become complacency. We're right at the beginning of our journey but already we're worrying that we're not doing enough to encourage development even though we're trying to accept the fact that she will do things at her own pace and it's not a reflection on how often we've smiled at her that she hasn't smiled yet (for real, i mean ... the gassy faces are pretty cute, though!).<BR/><BR/>anyway, thanks for the blog, i'm sure i'll visit again soon!Beckyhttps://www.blogger.com/profile/08669191198304871320noreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-20089621409589628782008-10-27T22:07:00.000-04:002008-10-27T22:07:00.000-04:00Everyone who has already commented is right - our ...Everyone who has already commented is right - our kiddos will chart their own courses. I think you guys are doing a great job of helping her reach her full potential.<BR/>I never really paid much attention to milestone charts with my first three kids. I just expected the first two to do everything on schedule. With Ben, we were painted such a bleak picture at his birth that we had next to no expectations for him. Every little thing he accomplishes thrills the heck out of us.<BR/>Inexplicably, though, I find myself fretting over Nate and referring to those darned milestone charts. It just doesn't make sense.Karenhttps://www.blogger.com/profile/02171071631839440657noreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-66989313200685911742008-10-27T12:10:00.000-04:002008-10-27T12:10:00.000-04:00I'll post a big ol' ditto to my dear ol' Mom. I do...I'll post a big ol' ditto to my dear ol' Mom. I don't say it enough, but we're lucky to have found a corner of support here online from parents. It means a lot. Thanks. JoelAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-57783394336420975542008-10-27T10:16:00.000-04:002008-10-27T10:16:00.000-04:00Thanks to you, MoJo, and to all the special parent...Thanks to you, MoJo, and to all the special parents who post on this blog. <BR/><BR/>For me, who knew next to nothing about special needs -- and never expected or wanted to have to learn -- it has been humbling and wonderful to read your comments. You provide such great perspective and wisdom. I'm guessing it doesn't always feel that way, but you persist. I'm glad the world has you in it.<BR/><BR/>Hope's Maine Grandma, AnitaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-82051782117558257462008-10-23T21:50:00.000-04:002008-10-23T21:50:00.000-04:00Good for you guys! That is a huge step in itself....Good for you guys! That is a huge step in itself. I used to worry and fret that Joey wasn't doing all he was "supposed" to do in the time he was "supposed" to do it. I worried that he wasn't sitting or standing or talking or walking or whatever ~ until I learned to take it a day at a time and find the unexplainable joy in the things he can do. I have learned many, many things from Joey and all the CdLS families I have encountered and for that I will be eternally grateful. The day he walks on his own will my one of the best days of my life. And I can wait whether it be next month, next year, or the next decade. Enjoy Hope, as I know you do. She will do things in her own time and her own way, just as all of our other kiddos have forged their own paths.Rachellehttps://www.blogger.com/profile/05850150500492155306noreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-68380375974757443342008-10-22T20:40:00.000-04:002008-10-22T20:40:00.000-04:00Good for you for throwing out the milestone charts...Good for you for throwing out the milestone charts! When Jess was little, those things made me feel depressed, frustrated and panicky -like I was never doing enough for her.<BR/><BR/>Misty summed it up perfectly...our kids learn and grow at their own pace, on their own schedule.<BR/><BR/>Over the past 12 years I've found you get so much joy from even the smallest accomplishment. Each milestone met is all the sweeter knowing the effort and fight it took them to reach it. I know that there are some things that Jess may never do, and while that still makes me a little sad, it doesn't seem as important anymore. She is happy and that's what matters most :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-14788083816391895292008-10-22T13:39:00.000-04:002008-10-22T13:39:00.000-04:00I can't even remember what they age ranges for the...I can't even remember what they age ranges for the milestones are and I got rid of those books already lest they depress me. Babies younger than Blue have already far surpassed him and my other son was always ahead of the curve so I don't have anything good to measure by anyhow.<BR/><BR/> Sometimes I think that my expectations are too low. I don't know if this is a defense mechanism on my part or if one of the geneticists just "got through" to me early on not to expect to travel the typical path.<BR/><BR/>But Misty is right that we just help them as much as we can and they will plot their own chart. Even withing CdLS there doesn't seem to be a set timeline, and categorizing into "mild" and "severe" has no meaning for me.heidi @ ggiphttps://www.blogger.com/profile/05245994200237421760noreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-60122590550410830362008-10-22T10:45:00.000-04:002008-10-22T10:45:00.000-04:00we also have stopped looking at the 'typical' mile...we also have stopped looking at the 'typical' milestones for Mason and know that he is plotting his own little chart... I was praying that he would be sitting up by his first birthday..but now i am praying that he sits up by his SECOND birthday! <BR/><BR/>I think that we need to do that with out kids.. still work with them as much as possible, but know that they will pave their own path. I have even stopped comparing mason to the 'less affected' kiddos and all that they can do by the time they are one year. EVERY child learns at their own pace..and although they may be little turtles, slow and steady is the way for them :)... sorry about my confusing little ramble. :) <BR/><BR/>to sum up the novel that i just wrote.. I KNOW WHAT YOU'RE FEELING and have done the same thing here!Mistyhttps://www.blogger.com/profile/10001802750592065757noreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-9396490502097532562008-10-22T10:01:00.000-04:002008-10-22T10:01:00.000-04:00I know that was HARD to do and for some odd reason...I know that was HARD to do and for some odd reason, it actually gets easier as they get older. People still ask me where Liz fits on the average height scale at age 4. I have no idea - I assume she's not even in any range and it really doesn't matter to me.Lisahttps://www.blogger.com/profile/14749811962855031200noreply@blogger.comtag:blogger.com,1999:blog-7842566243402910997.post-74261832811343674152008-10-22T08:07:00.000-04:002008-10-22T08:07:00.000-04:00Getting rid of the chart is a milestone of sorts f...Getting rid of the chart is a milestone of sorts for you as well. Must have been kind of tough to do. <BR/><BR/>Miss you guys.bethhttps://www.blogger.com/profile/09178696706128697379noreply@blogger.com