Thursday, June 26, 2008

It's late...

It's late and I really shouldn't be posting on my blog at this hour. I am too emotional. Emotions and tiredness do not mix well. I am depressed at the moment. I try to be strong but at this moment I am not. I can't sleep. It's 12:30am and a nurse will be at my house in about 7 1/2 hours to administer Sophie another injection. These shots are wearing on me and even more so on Sophie. The thought of her not being able to go to preschool makes me so sad. She has made so much progress there. But she has much more progress to be made. But she is making progress so I should be happy about that, right? I am happy. I am ecstatic about it. I am just tired of being happy about it...if that makes sense??? It is just that I wish it would all come naturally. That it is not so much work. Everything Sophie does is analyzed 100 times over. Sophie's current therapist count...15 (currently she is only working with 9 different therapist). Sophie's current doctor count...4 pediatric neurologist in 3 different states, 3 orthotist in 2 different states, 2 pediatricians, 1 developmental pediatrician, 1 ENT, 1 ophthalmologist and 1 hematologist.

Then there is the guilt factor. Guilt that I am not working hard enough. Guilt that I am not grateful enough. Guilt that I am sad. How can I be sad when Sophie is considered one of the "lucky" ones?!?! How can I be sad when I am fortunate to get such incredible care for Sophie?!?! Guilt that I am even talking about myself. Guilt that I am even writing this post.

I am grateful. I do realize the "what ifs". That is why I feel guilty for feeling the way I feel.

The only good thing about this post is that Sophie is still sleeping. She made it past the midnight hour. That is when she usually wakes up (somewhere between 12am and 1am). So maybe I can sleep with some peace now...maybe I can stop holding my breath.


Anonymous said...

Sorry to see you hit one of those "I need to go scream, cry,and beat the walls in the shower days." Wish there was something to say that would help, but I know there isn't. I'm sure there are days you feel like you just can't bear one more minute. I'm just glad that Sophie got strong parents that (after well deserved meltdowns) can pull it together and keep on keeping on. You've brought Sophie so far and we can all see she"s going to go sooo much further!!

You've got all our prayers and thoughts and anything else you need to help hold you up.

See you guys soon.



Reagan Leigh said...

I have those WHY moments a lot. I don't know why everything has to be so difficult for these babies? Why every last thing they do is such a struggle. Reagan is just now reaching for things...but she can't just reach out and grab something...she slowly moves her arm out and moves her little fingers around until finally she touches what it is that she's trying to get. It's such a strain! Just for her to reach her hand out and touch something! I don't know why she has to go through this! I'm just praying that we'll find something to treat these seizures and that she'll get some clarity in her little brain so that she can begin doing some of these "simple" things without so much effort!!

baby trevor's mommy said... I'm not in the word smith groove today. I know...because I've been sitting here trying to come up with the right words.

Sometimes I have this overwhelming compulsion to comfort...and I'm really not that great at it. :O)

I just want you to know...that you are an amazing mom. Just being courageous enough to share your journey...for other moms like me...that's HUGE! And brave!

I get sucker punched with the *guilties* too. Maybe it's a girl thing? Maybe it's just who we are. I don't know? Maybe it's just part of the growing process? I don't know...but I understand on an IS mom with one of the *lucky ones* level! :O) now I've seriously run out of wording ability! Maybe I just need some coffee...we tried Folders today. Yucko!



Anonymous said...


I'm so sorry to hear you're back on ACTH, but I have my fingers crossed for you that it helps Sophie's seizures even better this time.

It's wonderful to hear all of the things both Sophie & Elsa are doing -- they wouldn't be doing them without you! You're an amazing mom & you have certainly earned all the emotions you have, both good & bad. So, don't worry about feeling guilty & depressed sometimes, you've earned it. And you're amazing to me in your determination & optimism.

Leslie & Jordan

Erin said...

I wish somehow that I could make all of this go away. I pray for Sophie that her seizures will just STOP! and I pray for God to give you strength to continue to be the wonderful mom you are to your girls. Sophie has a heart of gold and a smile that makes you melt everytime. I love that girl so much and I am very lucky to have her in my life.