tag:blogger.com,1999:blog-2600278351249979209.post2094244376906798735..comments2023-06-22T04:20:49.280-07:00Comments on happy being trevy: so much to loveDanielle http://www.blogger.com/profile/04484341169494632974noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-2600278351249979209.post-54242507505503186202009-09-24T11:03:42.305-07:002009-09-24T11:03:42.305-07:00So, I read this post several days ago, but with my...So, I read this post several days ago, but with my heavy load here, I'm just getting to comment. I kept making a mental note to get back here.<br /><br />I'm not going to focus on the upcoming surgery. I know you're terrified, but I cannot fully appreciate that or give you any wise advice.<br /><br />I so wanted to tell you how beautiful this post was though. Jaw-dropping beautiful. Regardless of your fears or anxiety. It was almost like I was truly seeing into Trevor, yet never having met him. My heart exploded with a new love for your family.<br /><br />Seeing him through your eyes. And these very articulated emotions. One of the most special posts I've read.<br /><br />Love and hugs...<br /><br />HolliHollihttps://www.blogger.com/profile/00535016211470087504noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-40824501682038178072009-09-14T12:18:31.811-07:002009-09-14T12:18:31.811-07:00Danielle,
I can feel your anxiety...we felt the sa...Danielle,<br />I can feel your anxiety...we felt the same way beforehand. Even after the surgery, we were asking ourselves...did we do the right thing? The child we brought home was not our child....but things did get better and he came back to us. He will always be your Trevy and he won't lose the sweetness and the beautiful eyes. It might hide for a little while, but it will return. I remember seeing our Trevor smile for the first time after surgery...it was over a week after and he was watching Angels in the Outfield..it made him laugh. It felt so good. <br /><br />We're with you on this journey...holding your hand from far away. Knowing that you and Jonathan, like all parents, have climbed mountains to help your child. <br /><br />Hugs,<br />SheilaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-90748950240947770532009-09-14T07:37:07.858-07:002009-09-14T07:37:07.858-07:00hugs sweets! i'm always here 2 listen if u ne...hugs sweets! i'm always here 2 listen if u need it...a lil better than anti-anxiety meds, eh? ;0)<br /><br />xoxoxox,<br />sharonMama Skateshttps://www.blogger.com/profile/10759832371415292719noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-65954164107343642952009-09-14T05:55:58.567-07:002009-09-14T05:55:58.567-07:00Trust yourself. You are doing the right thing beca...Trust yourself. You are doing the right thing because you are facing this head on and fighting for Trevy.<br /><br />And yes, I'm on wellbutrin. There is nothing wrong with meds to help you too.JSmith5780https://www.blogger.com/profile/16954759123115546248noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-28511659004162558812009-09-13T21:21:02.279-07:002009-09-13T21:21:02.279-07:00I think in all my "surgery is not the magic w...I think in all my "surgery is not the magic wand" posts I may have forgotten to mention something. Yes, we still live with seizures and yes we live with crazy nutty behaviors right now BUT we got our little girl back. Before the surgery we had glimpses into her. Little moments where she would look at me and my soul would light up. Little cuddles here and there. The girl who came home from the hospital with me didn't even want to cuddle but two weeks on she was all about affection. I see more of Emma in five minutes now than I did in a day before surgery. Thank you for your post because I was a bit down today and you reminded me how far we have come. I hope your journey is even better. No more seizures please! <br /><br />My baby who spent most of her time moaning during IS looked me in the eye last week, clenched her hand in and out as if to wave and said "ba ba" to me as I said bye bye on my way to work. She just about melted my heart away. That is our success story - small improvements where there was once no progress. All the best. You will get through this.Sineadnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-12555119192571461272009-09-13T20:02:19.153-07:002009-09-13T20:02:19.153-07:00Like Ken said...No Editor's Note needed. Beca...Like Ken said...No Editor's Note needed. Because I wish I knew what I know now before Sophie went into surgery. I had no idea I would be dealing with these issues. It is like a roller coaster. The few days after surgery, she was gone. Her eyes were blank. But she slowly came back. Those were some deep, dark days. I talked about those on my blog. Then life was pure bliss for a few weeks after surgery...once we got home. Life felt perfect. She was seizure-free. We were home. She was slowly gaining her strength back. She was saying a lot of new words. Her eyes had a new sparkle to them. She was sweet and snuggly. Then the behavioral issues hit hard. I was lost. I didn't know how to deal. But you also have to take into consideration that I have a one year old and a newborn. I couldn't focus on Sophie like I needed to. Then school started and I felt some pressure lifted off of me. And I have to say, I feel like this weekend is ANOTHER TURNING POINT in this journey. She seemed a bit calmer. A bit more manageable. A bit more connected. It was just Sophie and I cuddled up in bed and we had a moment (you just inspired me to blog about it because this comment is already way too long). To sum this all up...Sophie is still Sophie. She is just Sophie times 100...and that includes the good and no so good behaviors.<br /><br />Your feelings are so VERY NORMAL for what is going on in your life. Anxiety is high. The days leading up to surgery, I felt like my entire life was crumbling around me. I know I e-mailed you a few times during all of that and that was still only the tip of the iceberg. Because, for me, it was so hard to put into words the emotions I was feeling. The thoughts that ran through my mind scared me.<br /><br />I love you. I am here for you. Anything you need, just let me know. I wish so bad that I could fly to see you. To sit down with you. To tell you all of this in person. I wish you could meet Sophie in person. To see how sweet and adorable she still is despite everything else that is going on. Because she gives the biggest, tightest hugs and it would just melt your heart.Sophie's Story by Elainehttps://www.blogger.com/profile/00415731740298071423noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-3959665516334769692009-09-13T18:57:56.900-07:002009-09-13T18:57:56.900-07:00Hey, girl...
I can't even BEGIN to know how y...Hey, girl...<br /><br />I can't even BEGIN to know how you are feeling just about now...I can only IMAGINE...And even then, I am sure I wouldn't get it right...<br /><br />As I read tonight, I felt like COLBY was getting ready for surgery....I can FEEL your anxiety...As much as an outsider can, of course......<br /><br />You know what hit me? You have helped Bennett's daddy SO much over these last months....Giving him wonderful and encouraging words...Now HE can help YOU! I LOVE that....Isn't life just remarkable?<br /><br />Check into the meds...Nothing wrong w/a low dose to get you through...I've been on something for some years now....It just helps even things out a bit....And you deserve to feel as best you can....<br /><br />I always pray for your precious family...<br /><br />CyndiColbyhttps://www.blogger.com/profile/05100340319951092104noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-29851679327667433742009-09-13T18:07:01.849-07:002009-09-13T18:07:01.849-07:00I wish I could add some words of wisdom here, but ...I wish I could add some words of wisdom here, but I have so little to offer. I agree with the above comment. Trevy has been beautiful since the moment he was conceived. He might change, but that will never change. You are always going to love him as much as you do in this very moment. No matter what happens. I am praying for that to get you through whatever you come up against. I can only imagine how scary this is for you. You have every reason to be afraid and it seems like you are handling everything appropriatly, and still it may be a bit easier for you to keep things together if you do consider some anti anxiety medicine. You could probably scrape by without...but you shouldn't have to. Maybe it doesn't have to be quite this hard...I don't know, but it's worth a try. I know they have helped me out quite a bit. I take klonopin, which is kinda weird : ) But it helps a lot!<br />Take care sweetie,<br /><br />KarenKC's Warrior Mamahttps://www.blogger.com/profile/08500787582576519710noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-43214666088129377532009-09-13T15:44:59.373-07:002009-09-13T15:44:59.373-07:00"What if the hated seizures are what makes hi..."What if the hated seizures are what makes him so beautiful?"<br /><br />Okay, if I could completely bash that thought, I would. Relative to Dr. C Rockstar, I know squat about the brain. Relative to 99% of the remainder of the population, I know a lot more. <br /><br />Here's the thing, neurons connect in ways that are so complicated, there's always a risk that some of the beautiful neurons are connected to the monster. But it is NOT the monster neurons that make him beautiful. <br /><br />Now to you, you and Trev are attached to my daily prayer list. If your health is in real jeopardy - harmful anxiety - J will help you determine whether it's that or just loopy you - I hope you will reach out for help - to IRL professionals. <br /><br />One of my current lessons in life is the letting-go of ownership of our children - teens. With each passing day I more firmly believe, they have only been on loan to us - to do the best we can. <br /><br />From far away here, you seem to be doing the best you can. Pretty good. Who are you trying to please?<br />BarbaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-37881084844704717242009-09-13T15:41:58.681-07:002009-09-13T15:41:58.681-07:00Danielle,
I could feel the heavyness in your heart...Danielle,<br />I could feel the heavyness in your heart and all the worry and angst you are feeling. <br /><br />In some ways, I wish I knew what you were goig through, so I could help guide you through it, but I have not been there and my journey still wouldn't be Just like yours. But know that I will be along side you as you go through all of this, and send prayers and hugs to you all.<br /><br />I'm thinking some sort of anxiety meds will help a bunch. They will probably help keep all of those "what if" thoughts out of your mind, so you can focus on the now...the moments with the smiles and giggles. <br /><br />Biggest hugs coming your way :)<br />JodyMJStumphttps://www.blogger.com/profile/05506100079795141155noreply@blogger.comtag:blogger.com,1999:blog-2600278351249979209.post-76062589713304324692009-09-13T14:40:45.228-07:002009-09-13T14:40:45.228-07:00No Editor's Note needed. These are difficult t...No Editor's Note needed. These are difficult times, and there is no magic date waiting after surgery where you go 'AHA! This is what we were after!' At least, that has been the experience I have had and witnessed through the other blogs.<br /><br />So yeah, it might get harder before it gets easier. We seem to have traded a seizure free boy for one full of anger and rage and pain and frustration, peppered in with moments where I THINK it is the same child I used to have.<br /><br />But I keep telling myself it will pass, telling myself that there are no seizures. That's part of the journey, part of the beauty AND the tragedy of the surgery. It is just one step on a longer journey, one we have all been on for so long, and some of us longer than others.<br /><br />You'll get through, you have to. But meds? Yeah...look into it. You WILL NOT REGRET THAT. I wish I had about two weeks prior. Try some Cymbalta or something, that is a great, low side effect anti-anxiety med that doesn't have the addictive effects as Xanax. But get on it soon, takes a week or so to start making a difference.blogzillyhttps://www.blogger.com/profile/08268388544631653375noreply@blogger.com