And everything in between. That is me on a daily basis. My emotions are all over the place. It is hard to deal with. It is hard for me to separate my mood from Sophie. We are so intertwined. So much of what she is feeling at the moment dictates what I am feeling at the moment.
Lately, the extreme lows is what constitutes my day. With a little mix of extreme highs and everything in between. Because Sophie has been doing some amazing things. But we are still dealing with a lot of behavioral issues. And you just never know what you are going to get at any SECOND of the day. And it consumes me. It sucks all the energy out of me. It leaves me in a place that I hate being in. Because I want to focus on the positive. The fact that she remains seizure-free. I don't want to take that for granted. Not for one second. Not ever. And I don't want to take for granted the huge developmental gains she is making. But it is hard to concentrate on it when these behavioral issues literally smack you right in the face.
Though, I have to say, it seems we are at another upswing. Things seem to be getting better. We had a great day on Halloween. The best day I think we have had since Sophie was diagnosed when she was 6 months old. But the last time I thought that we were on an upswing, we ended up crashing again. So, I guess you can say, I am optimistically cautious. Because it is a lot for the heart to deal with. To go from one extreme to the next on a daily basis
**I have written so many posts in the last couple of weeks. Or at least attempted to. But I have never had the guts to click "publish post". And I am having second thoughts now. I am not sure why. I really haven't said much. I am getting myself worked up over nothing. So here goes.
Lately, the extreme lows is what constitutes my day. With a little mix of extreme highs and everything in between. Because Sophie has been doing some amazing things. But we are still dealing with a lot of behavioral issues. And you just never know what you are going to get at any SECOND of the day. And it consumes me. It sucks all the energy out of me. It leaves me in a place that I hate being in. Because I want to focus on the positive. The fact that she remains seizure-free. I don't want to take that for granted. Not for one second. Not ever. And I don't want to take for granted the huge developmental gains she is making. But it is hard to concentrate on it when these behavioral issues literally smack you right in the face.
Though, I have to say, it seems we are at another upswing. Things seem to be getting better. We had a great day on Halloween. The best day I think we have had since Sophie was diagnosed when she was 6 months old. But the last time I thought that we were on an upswing, we ended up crashing again. So, I guess you can say, I am optimistically cautious. Because it is a lot for the heart to deal with. To go from one extreme to the next on a daily basis
**I have written so many posts in the last couple of weeks. Or at least attempted to. But I have never had the guts to click "publish post". And I am having second thoughts now. I am not sure why. I really haven't said much. I am getting myself worked up over nothing. So here goes.
11 comments:
I do that. Write posts that I don't publish. Some negative. Most negative, and roads I just don't want to go down again and again.
But I'm glad you hit 'Publish', cause it lets me know that you're struggling, and could use some knowledge of the fact that you are not alone.
Highs and lows define our lives in general ANYWAY, and when we have circumstances like many of us do? It's that much more difficult to navigate the very intense waves of our emotional waters.
May you have more ups than downs this week.
How's that for optimism? :P
I heard what a great time Sophie had trick or treating. Seems like Halloween just might be her favorite holiday. Hope everyone finds the path that's needed to deal with Sophie's emotional highs and lows.
Love,
Barb
I definitely want to blog about the things I feel and the fear we still have, but I just don't...it's like I go blank and can't put things together.
So yeah, you are totally not alone on that front. I know it's best to get it out, but then I always worry about so many that may come down on us for feeling the way we do, and then it is one more thing added to the many emotions.
Thank you for continuing to share both the ups and downs. The downs stink so much, but the ups are always so great and so high :) Praying for more of those,
Hugs and Prayers,
Jody
Life is good in our house this week. Life was bad in our house last week. So bad that I looked forward to going away on a business trip. But now we are on an upswing. Dropped another 25mg of Topomax two days ago and the lights came on. I got high fives on demand for the first time ever tonight. That's pretty huge. Getting anything on demand is pretty huge. I guess how all this works is my good week balances out someone elses bad week. Now if I could only figure out why she is screaming like a hyena and refusing to sleep I'd be having the perfect week. Ha - I've been hopping around on crutches for three days and I still consider it a good week. Must be the drugs.
I think at one time or another, we all write posts that we don't publish. I find it to be therapeutic to write it all out and not necessarily publish it. That way, your thoughts and feelings are down on "paper", but are there for only your eyes.
You do what you have to do Elaine. No one will fault you for that. I know the stress of having a infant in the house, and on top of that you have Sophie's behavior issues...it can't be easy and I won't insult you by saying I know what you are going through because I don't. Just know that if you ever want an ear to complain to, I'm here, as well as so many other friends. I'm sure any of us are willing to let you vent at any time. That's what friends are for right!?
Go take a nice long hot bath and relax with a steamy romance novel....hahaha
Hi! Been thinking about you lately. Heard Sophie was a witch for Halloween - so was Sara! You're kiddos are so lucky to have you as their mommy!! And you are SO in tune with Sophie that I know you will figure out what is going to work best for her to make her happy :) We are thinking of coming to St. Louis in January. Will let you know so we can have a visit. It will be fun to watch Julia & Elsa together!
Laura
I also have several unpublished ramblings....They are also unfinished.....I seem to write less and less and then when I do, I am not happy with what I crank out....So...Join the club!
Since I haven't had to deal w/behavior issues with Colby, I can't say I know how you feel...I DO have a handful of friends who have, though (one friend was attacked by her child while driving and had to get stitches in her head! Of course, he wasn't recovering from b. surgery. She has always had to deal with that.)
We will just continue to hope and pray that these issues will work themselves out for Sophie and the behaviors will become less and less evident...I imagine there is still an AWFUL lot going on in her brain, even after 4-5 mos. post surgery! And we ALL know how grateful you are that she is seizure-free!
Guess you feel as though you have traded in one "fixation" (seizures) for a NEW one (behavior)....But girl, you are doing an AMAZING job caring for your family AND coping with "the new"....So just keep doing what you are doing and give yourself total permission to feel whatever you feel...
I truly believe things will improve....
Cyndi
I also have several unpublished ramblings....They are also unfinished.....I seem to write less and less and then when I do, I am not happy with what I crank out....So...Join the club!
Since I haven't had to deal w/behavior issues with Colby, I can't say I know how you feel...I DO have a handful of friends who have, though (one friend was attacked by her child while driving and had to get stitches in her head! Of course, he wasn't recovering from b. surgery. She has always had to deal with that.)
We will just continue to hope and pray that these issues will work themselves out for Sophie and the behaviors will become less and less evident...I imagine there is still an AWFUL lot going on in her brain, even after 4-5 mos. post surgery! And we ALL know how grateful you are that she is seizure-free!
Guess you feel as though you have traded in one "fixation" (seizures) for a NEW one (behavior)....But girl, you are doing an AMAZING job caring for your family AND coping with "the new"....So just keep doing what you are doing and give yourself total permission to feel whatever you feel...
I truly believe things will improve....
Cyndi
I love you, hon. Have been thinking about this post all day. But of course...sit down to write you something profound and now Trev's crying! Ugh. I totally need a nanny!
But like everyone said...you are not alone. We are here cheering with you...crying with you...supporting you...loving you...praying for you...and all that other jazz that my brain can't filter out because he's crying! lol
xoxoxo
...danielle
So sorry you have these lows to deal with. I'm glad you got it out though...it's important to do so. I wish I had some answers or something better to say...big hugs to you! Here's hoping it gets better soon.
Hoping the upswings start lasting longer than the downswings, til you no longer know what a downswing was.
Have you sought out a developmental pediatrician or a neuropsych yet? They may be able to guide you to the "help" Sophie needs.
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