Thursday, September 10, 2009

Bear with me...

I am trying HARD to sort through my thoughts and feelings. Life is not as bliss as I thought it would be post-op. So many emotions. So many issues. So many things that I wish not to talk about because there is too much guilt wrapped up into it. But I am not being honest with myself. It is what it is and I am trying to push the guilt aside. Because I have to. For Sophie. I have to deal with these issues and stop pretending they are temporary. Because it has been more than 3 months post-op.

She remains seizure-free. Again, I never know how to write that. When I type it and see it written before me...it looks like a simple statement. But it is so much more than that.

Before Sophie's subtotal hemispherectomy, these were my thoughts... If we could just stop the seizures and focus just on development, life would be great. We just have to get through this surgery successfully. Everything here on out will be manageable. WRONG.

And that is where the guilt lies. Because if I were to complain about her post-op issues, it would seem like I do not appreciate the fact that she is seizure-free. But I do. More than ever. So for this post, I am going to try hard to put the guilt aside and be honest. Because these things need to be said. I'm scared, though. I'm scared these words will someday haunt me. Because if her seizures were to ever return, these things I am about to write about will be trivial.

Deep breath, here I go...

Sophie is out of control. Everything I do with her feels like a monumental task. Every...little...thing. I try so hard to be patient with her. Because I realize there is a lot going on in her brain right now that she is unable to comprehend. That I am unable to comprehend.

Her behavioral issues are such that we added 12 hours of ABA therapy to preschool. That is why she goes a full day. Her pediatrician talked to me about the possibility of needing to put her on an ADHD drug in the future. Dr. Chugani suggested maybe putting her on a behavioral med called Risperdal. None of which any of us are ready to do at this moment...just something to think about. I will discuss all of this in length with Dr. Chugani at her follow up visit in 3 months.

The magnitude of her behavioral issues are hard to explain. Each little act may not seem significant. But it is the fact that it is one act after another after another.

I am so glad that she was in preschool for almost a full year prior to surgery. Because her teachers and therapists know what she was capable of before surgery. They are a great support system for me.

Now her behavioral issues are not to be confused with her development. Because she continues to make stride developmentally. The number of words she is able to say increases by the day. Her awareness of her surroundings continue to increase. Her sense of humor amazes me.

Please, please, please don't think I am not grateful for all that she has overcome in these last 3 months. I DO appreciate it. I AM grateful for it. And I am sorry to those who I may have offended for complaining about things that seem so trivial.

19 comments:

MJStump said...

Elaine,

Your post brings tears down my face. Don't ever feel guilty for your feelings, and how difficult things have been. I couldn't imagine the road would ever be completely smooth after something as big as brain surgery. You are right, so much stuff is going on in Sophie's little brain and she is adjusting, and you are adjusting just as well.

We never know what to expect after anything that happens (big or small), and learning how to deal with the unexpected isn't always easy.

Our Kylie has been not herself lately (upset at everything, lot of fussing and screaming), and I have no idea if it is more teeth, or me not handling things well, or if it's something else (something I am scared of...whatever may be going on in her brain..what if our fight isn't completely over yet).

Please don't feel bad to put your feelings out there..that is so big and so Very hard to do. I wish I could, but we already get criticism and comments from some, so I just keep it inside.

Always thinking of you guys, and praying for you. Try to stay strong and know its okay to feel..they are your feelings and no one can take that from you.

Lots of hugs,
Jody

Anonymous said...

I'm sure this is a real struggle. Not just for you but also for Sophie. Like you say it's only three months since the surgery; only three months since she has been barraged with siezures. She is probably bombarded with so much of the world that she never comprehended before.Maybe never even noticed. Having so many siezures she was probably frequently in a postictal fog. I imagine now there is a lot less thumb sucking and hair spinning and more expressions of independence like anger and stubborness and that "I'm going to test my parents to the limit" stage!!

It would be so easy to just say "give it time." Platitudes are so handy for those of us not in the trenches with this 24/7. Just know we're praying for all of you: praying the good moments outweigh the worrisome ones. Pray for your patience to continue and pray that Sophie's comprehension and development continue to improve which can only help her coping and behavior.

Love,
Barb

Heather said...

Everyone knows you and everyone knows you are grateful.Let go of the guilt the best you can because there is NOTHING to feel guilty about.You are and continue to be an absolutely wonderful mom.Funny this post comes today as I spent the morning in tears myself,not for Zoey but for Joe.We are about to begin that very same drug,with great reservation.At least on my part.Please feel free to get a hold of me if you need to or want to and please don't be so hard on yourself.I cannot imagine anyone coming down on you and if they did,how completely and utterly sad and mean spirited.Chin up Elaine and forward facing.You will find your way through this one too.

blogzilly said...

Yeah I don't see any reasons whatsoever for you to feel guilty about continuing to write about your journey with Sophie or your entire family.

I mean, you gotta have some perspective on it sure, but Life is Life, and you have to write about your battles today, not necessarily how they relate to your battles yesterday or your battles tomorrow.

I mean...what if you had a serious marital problem, or your car was totalled but you were all safe, or you lost a ton of money in the stock market?

Does your obligation to be appreciative of Sophie's seizure-freedom then forbid you from venting about some other problem, some other aspect of your life that is not as serious as that was?

No way, at least not in my opinion. I do understand totally why you would want to, publicly and in your own mind, remind yourself of how great it is to have seizure freedom, but my take is that seizure freedom is only ONE PART of a GREATER OVERALL JOURNEY, just as seizures were a part of that journey, the dangers of surgery was a part of that journey, a word lost is a part of that journey, a word gained is a part of that journey, and yes, neuro-psychological changes in behavior are a part of that journey.

Anyway, that's just my take. But I consider what Sophie is experiencing to be interwoven with what has assaulted her for these years, this is just another aspect of it, seizures or no seizures. And like before, you'll fight, you'll study, you'll do what you have to do.

You'll ENDURE, because that's what you do.

Katie said...

Oh, dearest. Don't feel guilty about being truthful & honest! This is all part of Sophie's journey, and needs to be documented, processed, and shared to the extent that you're willing.

I'm thinking of you guys. ((HUGS))

kelley&brandon said...

I have followed your blog for several months now and have always been 'meaning' to comment but have never had time to sit down and actually do it! My daughter Camilla was diagnosed with IS on April 3rd, 2006 at 6mo and though I don't remember how I found your blog I'm glad I did. I have appreciated the honesty of your thoughts, feelings, fears, disappointment and excitment as I too struggle with many of the same emotions over big and little things in our life. Guilt too is a part of our life and when it catches me off guard I always say to myself 'this is normal too, I'm only human'. For some reason this helps me to deal with those emotions and then keep going. I don't know if this phrase will help you or not but remember guilt is normal and you are only human - don't beat yourself up about feeling those very real and very normal emotions. I continue to pray for Sophie and your family and wish you all the best. I have a blog for Camilla if you want to check it out - it's camillabettsmith.blogspot.com

Sinead Aylward said...

I'm sorry about the ongoing stress. I thought recovery would be difficult but I too did not expect behavioral issues. Mostly I am glad that the spasms are gone but sad that we now have seizures on the other side. Mostly I look at my little treasure with wonder and awe. But occasionally I look at her and wonder what the F*** is going on in her head and why is she chewing on everything like a monster possessed by a darker power. Occasionally I am very frightened by what I see. But mostly I see growth and less seizures and hope for the future. I share this so you know you are not alone. Emma had surgery on April 30th and things are not perfect. They're just a whole lot better than the alternative. So I am grateful and scared at the same time. No one judges you for your words. Everyone understands that they come from a place of love for Sophie and wanting the very best for her just like all of us want the best for our children.

Anonymous said...

I don't know you and you don't know me. I just happened on your blog because of a link. I've followed your story on and off for a while, and I feel for you. There is no doubt after what I've read that you love your daughter and want to help her and so you are. Hang in there and keep on working to get her the help you need. And don't feel guilty - none of this is your fault. You're just doing the best you can with what you have been dealt. Also make sure that you are taking care of yourself (I know easier said than done) and make sure you're getting plenty of rest. Hang in there and trust God - He'll see you through.

JSmith5780 said...

Austin has always had behavioral/emotional issues. Sometimes I think this is harder to deal with than his seizures were. So don't feel guilty at all.

Before you jump to the big gun ADD/ADHD drugs (which is about as fun as AEDs, trust me) have you considered just working from a vitamin/supplement angle? For instance, we briefly were using Omega 3. Others commented on the benefits (it "evened" him out, calmed him), but as we started working with ADD meds I dropped it. We used Coromega. It was orange flavored and Austin loved it. There are many brands and many other supplments that may help.

Just a different thought for you to consider.

Melanie said...

Listen I don't know much and I don't claim too, but NEVER EVER should you have to apologize for that post.

I can imagine that prior to the surgery you were thinking, ok get us through the surgery and all will be well. But now you have to think, ok this little girl just had part of her brain removed, things are getting rewired, moved around all that stuff. I can only imagine that it is frustrating and difficult. Just hang in there and I am sure things will settle down and get better. She is probably still healing in there.

I know my words don't offer much but heres a big hug for you and for Sophie!

Jonathan said...

Okay two thoughts right off the bat.

1) we are SO guilty kindred sisters! Seriously. We just need to get together...have a cocktail...and detox all that guilt we let beat our hearts to smithereens!

2) This is all the stuff I want to know pre-surgery...but hate knowing pre-surgery!

But for what it's worth, hon. I think candy-coating reality is doing a disservice to families like mine. I think if you're gonna share...than share the truth. For your sake...and ours. That way we're not blind-sided.

And since we're on the subject...would you mind sharing with me (even in email) what kind of behavioural issues we're talking about? No pressure...we're still several weeks out. :)

...danielle

baby trevor's mommy said...

Oh grrrrrrrrrr...I hate when I forget to log in!

...danielle

Anonymous said...

Hi Elaine,

I'll give you the "old" mommy perspective now:) We totally felt the same way you did, we'd go in for this intense surgery, get rid of the nasty seizures and voila, development comes and all is good. How wrong we were. It took a while but we figured out that once a special needs child, always a special needs child. You will always have some sort of challenge that you are dealing with for Sophie. I'm not trying to scare you, but like Ken said, it's the journey you have been given and you will weather it the best way you can.

You are lucky to have a group here to vent to, talk with, etc. And to have good teachers for Sophie is key. Everyone knows how grateful you are for her seizures to be gone...and we know how you treasure every little bit of development. But we also understand the frustrations and hardships of dealing with kids with special needs. I can't say it will get better, but each challenge will pass and next thing you know a new one will pop up. But with support, love, patience, and yes, wine helps too, you will get through each day knowing you did your best.

Hugs,
Sheila

Lori said...

I don't think you are complaining or ungrateful. It is a hard road you are on-along with lots of others out here. you can look at your situation and say "It could be worse" but you also are living it day in and day out. Behavior issues take a toll just as much as medical issues.

We all have our own battles to fight and all of our kids have their own issues. But we all know what it is like to have a child who isn't the norm and will most likely never be. We learn to live with it. We make a new normal. And we live, laugh, CRY and love our kids. And it is nice to know that when you write your feelings in a blog for the world to see, you have support and understanding from all the wonderful parents out there reading and crying with you.

Hugs to you and Sophie

Sophie's Story by Elaine said...

To you all...Thank You, Thank You, Thank You for being so supportive. It gave me the warm and fuzzies and the courage to be more open in the future. I love you all and I don't know what I would do without you. I am feeling the love.

Jody...If you ever want someone to vent to, I am here for ya.

Barb...Your words of wisdom have been there for me since Day 1.

Heather...I definitely want to talk to you about that drug someday.

Ken...I LOVE how you put things in perspective.

Katie...I will be much more willing from here on out.

Kelly...I will definitely check in on your little Camilla.

Sinead...Did the chewing get better with the Iron (I think that is what is was) supplements?

Anonymous...Even though we don't know each other, thanks for reaching out to me.

Jen...Sophie have been on and off omegas throughout the years. I just stocked up on some so I'm giving it a try again. I definitely would love to find a natural alternative rather than meds.

Melanie...Your words offer SO MUCH!!!

Danielle...I will go into more detail soon. And just so you know, Dr. C said that he has seen this in only a few cases.

Shelia...I love getting the "old" mommy perspective on things.

Lori...We all are in this together. Hugs to you and Nora too.

Liz said...

Sweet Elaine.....there is nothing trivial about behavior. It is incredibly difficult to watch your child act out and not know how to help them or teach them better. I am so sorry y'all are dealing with this now after everything you've been through.

I understand the guilt. But you have to talk about the bad stuff. It is not good for you to hold it in, you have every right to lament the fact that things still aren't good for Sophie. Someday, when I feel safe saying that Maddie may have beat cancer, I sure as hell will still complain about the seizures or whatever other damage is left behind after all she has been through. Just because Sophie is seizure free and is developing well, you do not need to pretend (to us) everything is easy. These seizures and their treatments leave all kinds of damage in their wake. And we all need to know what to watch for and how you work on it and try to cope with it. Thanks for being open and honest. That is not cause for guilt.

Big hugs,
Liz

Adesta said...

I don't think you have offended anyone Elaine. These things are part of reality. I would actually have been shocked to learn that Sophie wasn't acting out in ways that she previously didn't.

With so many things going through her head that she wasn't able to do before and now she can....

I don't see why you need to feel guilty at all. You have done all that you were able to do for Sophie to get her to where she is today. Give her time, I'm sure she will return to the sweet little girl that she was before the surgery, just without all those nasty seizures. She has so much to relearn and to learn anew.

Keep your chin up sweetie.

Colby said...

Elaine...I SO want to just give you a hug!

As you know, Colby can't walk, talk, potty....And I would get SO frustrated about those things....Then at age 8 came the seizures....These OTHER issues became trivial....Now I find myself saying "If we could just get rid of the seizures, Colby would have it made!"

But I know in my heart that if that miracle ever DID occur and the seizures were gone, I would be begging God to heal his other issues!

What I am trying to say is that our children are OUR children, and we want them to have the happiest and healthiest life we can provide...And we can be SO very grateful for the progress...But as parents, we ALWAYS want them to get better and not suffer...

Thanks for being "real"....

Cyndi

Holli said...

This comment is extremely late...I haven't had internet access in over a week! But...better late than never, right?!!

No one in their right minds would ever assume you are not grateful for Sophie's seizure freedom. Although SF was one of the main goals, wasn't the ultimate goal a total package? I mean, the starting point being seizure freedom on to pave the way for developmental progress and ultimately a happy, healthy, well rounded Sophie? Yes, one goal has been achieved and the other is in progress...But, you have every right to be upset about the unexpected battles.

Any of us seeking the surgery option needs to know that it's not all smooth sailing just because the seizures are gone. It just further shows how complicated this disorder is and the different aspects it affects. We NEED to know this. Not only to prepare ourselves, but also because we care about you and Sophie and have grown so very attached to your journey.

I know that you are thankful without a doubt that Sophie is not having seizures. But, I also know that you don't want her to have ANY problems whether they are behavioral or not. Don't ever feel guilty for wanting it all for her.