Put 10 Neuro Docs In a Room & What Do You Get?

I can think of a lot of funny answers to that question, but I'm so ridiculously exhausted from barely sleeping all week that I can't even muster the energy to plop them out, but feel free to add any you can think of in the comments. Maybe I'll give a "prize" to the best one?

Yes, I know I'm stalling.

You have no idea how long it has taken for me to put this post together. I told my text list it would be Friday night. Started working on it Saturday night. (oops!) 

Worked a little bit on it.

Searched the Internet.

Uploaded pictures.

Pinned on pinterest (yes, I'm addicted).

Changed the background.

Typed a little bit.

Checked out Facebook.

Read other blogs.

Researched surgeries.

Found blogs of other kids that have had surgery.

Got inspired and typed some more.

Said screw it & went to bed...very late.

Anyway, my attention span stinks on a good day. The past week and a half, it has been extraordinarily bad. My sleep has been awful. Constantly thinking about what was going to come from the conference. Trying to send telepathic messages to C-Monkey's Dr. Neuro & Dr. Neurosurgeon. Trying to make them believe in my boy. Trying to lead their hearts to see the love we have for him. Our desire to rescue him.

Praying for them to have compassion for a little boy that loves his toys, loves to give hugs, loves to swing, loves to dance in his car seat in Mommy's car when we are listening to hip hop, loves doughnuts, and loves his Mommy & Daddy. For them to have the compassion to see the boy that we (& so many others) love with all of our heart, & not just see him as an image of a brain on the screen.

Prayed for them to have compassion for us...his parents. The parents that have given so much. Sacrificed so much. Grieving so much for "what should have been". Heartbroken that our only child will be 6 years old in April, and we've never heard him speak a word. Don't know what his little voice sounds like. Constantly guessing at what he needs, wants, feels. Angered when we hear parents at the store scream at their kids to "shut up!" Wondering why we've been given this hand at life.

Yet, at the same time thankful for the amazing people that have come into our because of 

C-monkey. I spent Thursday evening with some of those people. Some AMAZING Mommy friends. That night especially, I was so thankful to have them. So thankful that I have friends that get this journey. That don't think I'm an awful Mom when I say, "This really sucks". Friends that see past the "I'm fine" junk that I'm so good at pushing out because sometimes it is just easier than letting the real emotions out.

I had talked to Dr. Neuro on Thursday. Trying to really emphasize to him how desperate we were. How scared we are that he is going to get worse. I made my last Mommy plea to him to help us. Hoping it would carry through to the next day, into that room of 10. He told me they would be meeting at 8am, but it would probably be 11:30 before he could call me. At 8am on Friday as the team was assembling, I was putting C-monkey on the bus to school. Tears in my eyes as I hoped that the team that was deciding our future, would know that I would give my life for that boy.

The morning stretched on. I tried to do things to relax. I surfed the Internet while I drank my coffee. I played with Rudy. I watched TV. I tried to meditate (that was a hopeless cause). I tried to take a nap. I paid bills (not for relaxation, but b/c it needed to be done). I cleaned out my purse. I jumped out of my skin every time a phone rang or beeped. 11:30 rolled around...nothing. More time passed. I decided to give him until 12:30 before I would call (I'm nice like that..lol). 12:35 rolled around and I was dialing. Luckily his secretary likes me. She told me he had just walked in from meetings, but she would see if he could talk. She told me he would call me back in 10 minutes. Holy crap, the ANXIETY!

Dr. Neuro called, and said they had reviewed all of the studies and discussed the best course for C-monkey.

Based on all of the data that was presented, their decision was:

.

.

.

V

a corpus callosotomy

For a visual of the surgery click here.

Don't worry, it's not an actual surgery. I wouldn't do that to you. It's just a drawing.

I was relieved that it was something. Part of me was slightly disappointed though. I do not think this, at the end of the day is the "cure", but I understand why they made the decision that they did. I appreciate them wanting to be sure, and not haphazardly removing parts of his brain without 100% proof. The biggest hiccup in all of C-monkey's tests is the EEG. That booger will not cooperate. While everything is presenting right sided, the EEG isn't predominantly right sided. He has widespread seizure activity. They cannot say with any certainty that the laughing seizures are originating there. Their hope is by disconnecting the hemispheres, that we can at some point lateralize the seizures (hopefully to the right where the abnormality is). IF they do, then we can discuss further surgery.



We'll do anything we can to hear that sweet laugh again.

 My emotions have been all over the place since that call. Relief that we have a plan. Anxiety over it all coming together & scheduling our lives around it. Fear over making this decision. (How does one make this kind of HUGE decision & feel okay with it?) Sadness over it coming to this, and knowing that C-monkey has to go through it without us really being able to explain to him what is coming. Hope that this gives him a shot at a better life. The things that I do know: he has 2 parents that will be with him EVERY step of the way trying to make it better, and that people all over the country are praying for him. Dr. Neuro said he would start working on getting us in with Dr. Neurosurgeon for a pre-op appointment where we will discuss all of the nitty gritty details, and we will formally decide if this is the step we will take. If so, we will schedule a date for surgery. He made it sound like this could all happen fairly quickly, which could be good and bad. We will try to keep everyone in the loop as it all comes together.

Until that time, we just ask that you keep all of us in your prayers, happy thoughts, and send positive vibes & energy for peace for J & I & for C-monkey to realize that we are doing this to help him even though he might not understand.

As with everything, we are in this journey together...

^"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 

Where have we been?

C~monkey then

It's been almost 2 years of a blogging break. The break lasted longer than I had intended.

Why did I stop blogging? I liked doing it for the most part. It was a great way to keep track of what all we had been through. To keep up with all of C~monkey's journey, because my overstressed Mommy brain doesn't have much memory.

It was cathartic...at times.

I liked the fellowship of meeting other families that were going through the same seizure hell that we were dealing with. I felt like they "got it".

Towards the end, it was just one more thing to do.

I had gone back to work. I was busy. Too busy for blogging I thought. Facebook was so much easier. If you weren't on FB...sorry about your luck.

I had concerns over privacy since our previous blog (that I hope to edit at some point & post along with this one) had our names smeared all over it. I felt like people knew too much.

I felt like I wasn't really being authentic. I felt like I had to put on this happy show of what our family was like everyday like it was all rainbows, unicorns, and daisies. I felt like if I said anything negative about being the Mom of a child with Special needs, that people thought I was a horrible person. Granted some of this *might* be true, but more than likely it was all my imagination. Blogging became more stressful because I felt the need to censor my words. Writing has always been the place that I felt I was truly able to communicate freely. If I have something serious to discuss, I would always prefer to write a letter instead of talking it out. My thoughts just feel more "free" that way. Is anyone else like that? So, when I began feeling stifled in my writing the cathartic feeling was gone. I've ALWAYS been a people pleaser, and let me tell you...being a Mom of a kid with SN and being a people pleaser is like standing in a lake of gasoline while holding sticks of dynamite...an explosion waiting to happen. So, I figured if all I'm being is a disappointment (once again, probably 98% imagined) then what is the point? I forgot the point in all of this was to put our story out there, to help other families in this journey, for me to have an outlet for my emotions...good & bad.

All of these are good enough excuses right? Well, since we are being honest, they might account for 30% of why I quit. So what is the other 70%???

I was angry, depressed, and pissed off at the world. A few months before I quit blogging, we took what was supposed to be our "miracle trip to Detroit". Where I thought an amazing Dr. Neuro (he is amazing, don't get me wrong!) was going to come into the room with his magic wand and CURE my kid of seizures that had stolen every dream & every hope that we ever held for our only child, and filled it with nightmares, stress, and tears. Yep, I know, I was setting myself up for HUGE disappointment. We left Detroit sad and downtrodden. Our miracle wasn't found in Motown. I felt absolutely sick (& it wasn't the disgusting Opa cheese we had in Greek town either). I felt like I had let C~monkey down. I felt like I had let everyone that had given us money, cheered for us, prayed for us, etc. down. I was angry that we never seemed to catch a break. I was angry that seizures had come into our house one evening, and robbed us. Robbed C-monkey. And there wasn't one damn thing I could do about it. I was selfish. I couldn't help but feel jealous of anyone that was achieving seizure freedom or even seizure vacations for their kids. I felt like an absolute failure of a mother. So, I had to get away from it all. Get away from drowning myself in the seizure world. Looking back now, this is where I began to slip down hill, faster and faster. I was losing my child, but I was losing myself too. It has been a long 2 years. One that I really wouldn't wish on my worst enemy. I look forward to reconnecting with other families. I look forward to having this outlet again...uncensored. I look forward to sharing the really cool things that C-monkey is doing. I also look forward to having this as a central spot that everyone that loves him can check in, instead of a FB post AND emailing people that aren't on FB, because that is a major pain in the butt! LOL! Next post we'll talk a little more about how C~monkey is doing today.

C~monkey now