I am amazed that he finds so much to smile & laugh about as he lives through each seizure saturated day. And his days are saturated. But he fights his monster in silence. As many times his seizure war goes unnoticed by the world around him. While I fight the urge to rage. And scream...how can you not see that! While he...the suffering one...finds reasons to giggle. Sometimes even in the midst of the battle.
Of course...Bristel & Toby crack him up without trying. They run by...he laughs. They call his name...he laughs. Toby makes funny faces...he laughs. Bristel blows a raspberry...he's in stitches. There is no doubt...Toby & Bristel make his world complete.
He laughs at me too. We have our little giggle games we like to play. He loves peek-a-boo. Especially when I run and hide in another room...and pop out to surprise him. He loves when I tease him with his food. And throw soft toys at him. And tickle him. And run away...he adores the chase.
What if the hated seizures are what makes him so beautiful?
**********
In my saner moments...I think to myself that I should ask my doctor about anti-anxiety meds. Because clearly the stress is getting to me. Or that every parent that has walked this road had these thoughts.
Jonathan thinks I'm nuts. He reminds me how freaked out I was to use ACTH that first time. And with each subsequent medicine after. But how we had agreed that we would always do whatever options were available that offered Trevor the most hope. And he's right. But I remind him that he knew I was a loopy before he kissed the bride.
::smile::
But honestly? It just feels so heavy. So very heavy. And so freaking scary.
I have put SO much hope into this nightmare miracle. Like somehow this is the answer. The happy ending.
But in my bones I know this is really just the beginning. Trevy is very very young. And we have a looooong and still very uncertain road ahead of us.
That might actually be okay...if I could only know that it would be with him. The him I have today. The him that I have spent two and a half years falling head over heels in love with.
And sometimes I can't help thinking...
the trouble with so much to love...
is that it means...
there's so much to lose...
**********
**editor's note**
I'm feeling pensive today. And clearly over emotional. But I want to make sure there is no misunderstanding...
I am SO very thankful for the other families. The brain surgery veterns. Who have had the courage to gut wrenchingly honestly share their stories.
Because it gives me a compass. And some comfort. And some concern. But at least I know that I am not alone. We are not alone. Somehow that makes it a teensie bit easier.
Thank you to those who have reached out to me. It is truly a support. I know it may seem counter-intuitive...but even the sad & scary is helping to hold a very fragile heart (or perhaps head) together. Thank you for being a sounding board. A question fielder. Comment leaver. An email answerer. For giving of yourselves by following our journey. A deep heart felt thank you...
Comments
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.
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.
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.
I could feel the heavyness in your heart and all the worry and angst you are feeling.
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.
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.
Biggest hugs coming your way :)
Jody
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.
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.
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.
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.
From far away here, you seem to be doing the best you can. Pretty good. Who are you trying to please?
Barbara
Take care sweetie,
Karen
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...
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......
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?
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....
I always pray for your precious family...
Cyndi
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.
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.
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.
And yes, I'm on wellbutrin. There is nothing wrong with meds to help you too.
xoxoxox,
sharon
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.
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.
Hugs,
Sheila
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.
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.
Seeing him through your eyes. And these very articulated emotions. One of the most special posts I've read.
Love and hugs...
Holli