tag:blogger.com,1999:blog-2600278351249979209.post3335343597123392296..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: acceptance is a fickle beastDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger17125tag:blogger.com,1999:blog-2600278351249979209.post-51151395642949857302009-06-05T19:46:23.486-07:002009-06-05T19:46:23.486-07:00Agreed, it is a tough balance sometimes. Having ho...Agreed, it is a tough balance sometimes. Having hope, but also accepting the reality of the situation. I try my best to take it in stride, but there are those days. Those days when Javi is flapping his brains out or having a megameltdown. Kaylee not being able to tell me at almost two years old that she wants milk.<br /><br />I think, I, for the most part try to just keep moving. Set attainable goals, move at their pace and just love them to pieces. The "when" has become irrelavant. When will Kay talk? When will Javi be fully potty trained? I know we'll get there someday, and so will lil' T-MAN ;)Shanna Grimeshttps://www.blogger.com/profile/01863808423565134938noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-58291642845138445892009-06-02T13:10:41.978-07:002009-06-02T13:10:41.978-07:00You are REALLY good, Baby Trevor's Mommy. For wha...You are REALLY good, Baby Trevor's Mommy. For whatever time acceptance embraces you, I am grateful. <br /><br />I cannot help but be my practical self. That is, I probably do the same when I am not in acceptance. I try to problem solve and move-on. <br /><br />Are these words hollow?<br />"Living with the emotions related to non-acceptance is equal to be emotionally disabled yourself. Your ability to care for your different child is impaired while you are angry, in denial, or bargaining for a cure from the medical maze or God."<br /><br />They are from a post I wrote a while back. <br /><br />The meeting place I would choose for 'giving-up' (aka doing nothing) and acceptance (could also be called doing nothing) is being open to what comes, responsive to what is offered, and not needing to know the future. <br /><br />I also prefer action over fighting. <br /><br />And I hope you find some meaning in UP. Take some tissues. Hugs, BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-79420256982407416892009-06-01T21:47:57.053-07:002009-06-01T21:47:57.053-07:00Oh I laughed and cried and happy danced along with...Oh I laughed and cried and happy danced along with you. I so love it when there is someone else out there who feels the exact same way I do.<br /><br />All I can say is, do those happy dances at each and every little thing, and enjoy Trevor. He is on his own schedule. (I know I say that but I also do what you do and compare.)He will do his stuff on Trevor time, and no one elses!!! :)Melaniehttps://www.blogger.com/profile/14976460220405392152noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-30821382108060725922009-06-01T18:22:50.918-07:002009-06-01T18:22:50.918-07:00You have me thinking...(As you always do!)...I gue...You have me thinking...(As you always do!)...I guess I am going to have to write about what I know (or DON'T know) about acceptance on Colby's blog...When I read all of you newbies' posts, I feel like I am reading our own lives' stories!!! <br /><br />I want to shout out "This was (or still is) ME!!! YOU are NORMAL! Which means I am NORMAL!!!" (Yay me!)<br /><br />All of you precious parents are doing, behaving, reacting JUST LIKE YOU ARE SUPPOSED TO!!! (I have to keep capitalizing for effect...SORRY!)<br /><br />Trevor is making wonderful progress...NOT at OUR pace, maybe, but it is HIS pace and is right for HIM....And he WILL keep going!!<br /><br />Love you!!<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-85640661754077636182009-06-01T15:25:59.227-07:002009-06-01T15:25:59.227-07:00Love and hugs! MomLove and hugs! MomAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-38948743375196851872009-06-01T15:19:26.346-07:002009-06-01T15:19:26.346-07:00Just keep breathing is right! I am glad that Trev...Just keep breathing is right! I am glad that Trevor is having some good days with the Topomax. <br /><br />You amaze me with ALL of the people you touch through the whole IS world. You have shared so much with me and what you have learned. That little man of yours is blessed to have you... <br /><br />Hugs!<br />KatieKatie Irelandnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-71393411060006100592009-06-01T12:49:56.371-07:002009-06-01T12:49:56.371-07:00I don't think any amount of communication can repl...I don't think any amount of communication can replace the longing to hear our babies' voices.<br /><br />It's horribly real. And totally valid. We had that dream before we even knew them. Before they were even diagnosed. <br /><br />Just like you, I'd love ANY type of communication. But to hear a true Mama. That will be a dream that won't stop 'til I hear it.<br /><br />AND...it sounds as if little Trevy is well on his way to the verbal world!!! Go Trev!!!Hollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-84644584791431995632009-06-01T12:12:33.250-07:002009-06-01T12:12:33.250-07:00Oh my. How I broke down when you compare Trevy to...Oh my. How I broke down when you compare Trevy to others. I have the hardest time just seeing my nephew who will be 1 in July. As much as I love seeing him, it's like a big glowing sign how much he excels at things that should be so easy for Emma. It can make family get-togethers difficult for me.<br /><br />Topamax has been what Emma's been on since 12/07, right after her IS diagnosis, among other things. So far, it's worked pretty well. Glad it's working so well for you!!!!Andihttp://wordpress.theparkside.net/emmasgracenoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-90547245539628279862009-06-01T11:13:03.434-07:002009-06-01T11:13:03.434-07:00I totally agree with Elaine.....like I could have ...I totally agree with Elaine.....like I could have written that post if I were a good writer. We are not all that far into this yet, but all I feel right now us that I know I will never be able to "give up" the fight, and does that mean I will never be able to enjoy her as she is? I feel like I know I enjoy our time together, but I will always be trying to figure out how to make her "better". And for who? Will she know?Anyway I need to move on now as I am bawling my eyes out while she sleeps off a cluster in my lap. <br /><br />Thanks for sharing so much of yourself.Lizhttp://maddiegorman.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-72294188759238474792009-06-01T10:51:13.039-07:002009-06-01T10:51:13.039-07:00You made me cry on so many levels. Your feelings ...You made me cry on so many levels. Your feelings are so real to me. As if I could have wrote that post (if I was half the writer you are). It is so hard not being able to verbally communicate with your child. To watch other children around you surpass your child. Our children aren't the only ones entitled to meltdowns. I have them. The feeling of helplessness, frustration and everything else. It's hard to deal with EVERY SINGLE DAY. Because it is hard to accept what is unknown.<br /><br />And then I cried when you wrote that Trevy said "awww duuuh". He put 2 words together!!! That is simply amazing!!! A huge milestone!!!Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-6538858126611737262009-06-01T10:07:54.069-07:002009-06-01T10:07:54.069-07:00Yeah for Trevy saying Awwww Duuuu. *doing a happy ...Yeah for Trevy saying Awwww Duuuu. *doing a happy dance with ya* This is great. I'm glad to hear that the Topomax is giving Trevy some relief and allowing things that were repressed from the seizures re-emerging. <br /><br />I'm sending {hugs} to ya D...it sounds like you could use a few of those today. *smile*Adestahttps://www.blogger.com/profile/08255048845212923176noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-12590430854550257072009-06-01T09:23:48.199-07:002009-06-01T09:23:48.199-07:00Had a super long response. Then thought about it, ...Had a super long response. Then thought about it, saved it, then deleted it. I'm wishy-washy today, because my anxiety is in overdrive.<br /><br />But it was a WOW blog today D, you done good.<br /><br />Word Verification: glarizeblogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-88529552473251032512009-06-01T08:51:09.574-07:002009-06-01T08:51:09.574-07:00I know where your at danille - I'm still there mys...I know where your at danille - I'm still there myself. It's hard when you have a 14 1/2 year old that still is undiagnosed and keeps the medical world totally stumped plus trying to figure out what's constantly going on with Aidan. What's the chance of having 2 kids that the medical world CAN'T figure out??? With those odds I probably should play the lottery more often :)Tara - Aidan's momnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-42068037963504108822009-06-01T08:46:31.350-07:002009-06-01T08:46:31.350-07:00makes total sense - hard balance, but u're doing i...makes total sense - hard balance, but u're doing it gracefully! i love reading ur thought - ur true feelings...hearing the truth when i come 2 ur blog, not just reading what u think we want 2 hear...keep it up girl - i hope finding a balance gets easier 4 u - i can't imagine how hard that is!<br /><br />xoxoxox,<br />sharonMama Skateshttps://www.blogger.com/profile/10759832371415292719noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-19653534749830341872009-06-01T08:03:44.951-07:002009-06-01T08:03:44.951-07:00You're entirely welcome :)You're entirely welcome :)JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-73088743024970104362009-06-01T07:46:46.879-07:002009-06-01T07:46:46.879-07:00I know..right? I should probably see a doctor abou...I know..right? I should probably see a doctor about this! *smile* But seriously Jen...I love you! You have been such a faithful friend...and support...and well of encouragement. Thanks...<br /><br />...danielleDanielle https://www.blogger.com/profile/04484341169494632974noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-39376722765356965802009-06-01T07:42:05.122-07:002009-06-01T07:42:05.122-07:00So where did the confident Mommy go who wrote Ken ...So where did the confident Mommy go who wrote Ken to tell him it gets "better"?? OK, so I am further than you both. Don't either of you give up. Look how many years Austin has fought. It's a darn slow climb, but he keeps climbing. Your boys will too!<br />hugsJSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.com