The Fine Print
Ok... so I am a liar.
Not in a compulsive "that girl we all knew in high school, if you break up with me I am automatically pregnant" kind of way. But in more of a "I know that your husband is cheating on you, but I don't know if I should just mind my business because you may already really know but not want to talk about it" kind of way. Or like a "your ten year old son keeps dropping subtle questions about Santa, but you plan on squeezing out one more year of innocence if possible because I don't want my baby to grow up" kind of way.
If it wouldn't make things more complicated in a few weeks, I wouldn't even tell you this part of the story.
I would keep the lie to myself.
Like a protective parent dodging the questions of Santa, I was going to gamble the odds of omission and just keep the whole story from you. But, selfishly, I don't want to have to have this talk with you and crush your spirits so close to the holidays and while we are in the trenches of Houston.
Just a quick recap before we get to the part I left out..
We went to Houston for preop monitoring to get control of the seizures that have ran our lives for years.
Everything pointed to the tuber in the right parietal lobe.
Everything lined up.
Everything made sense.
And then we came home.
We were tired, and scared, and Luke was regressing by the day.
We made some big med changes.
Some things got better with the change in meds. Mostly, Luke could sit and stand and hold his head up. He started to laugh and smile and kiss and hug. We could see him again through the fog.
Some terrible things happened too with the med changes. Mostly, Luke no longer sleeps. Oh, I am sorry. I don't want to be dramatic. He has slept through the night 4 times since we have been back. And I don't mean "like" four times... I mean literally four full nights of sleep in 2 months. And it's not like he is up to get a drink of water and a hug. Dude is up for normally 3-6 hours at a time. There is not an under eye serum on the planet that fixes that.
And something seemingly indifferent happened too when we changed the meds. Luke's seizures shifted from his left side being more tense to his right side. The seizures still look the same for the most part, but they have shifted sides.
So here is the fine print buried in the footnotes...
The shift is not good news. It is confusing news. It is curious news. It is concerning news.
Why? Why does this complicate the plan? It seemed so clear and clean and simple. We had an answer. It was glaringly obvious, right?
Well. We did. And then this tiny shift happened and it adds an asterisks to the whole "clear and simple" plan.
The way your seizures look on the outside, communicates to doctors what is going on the inside of your brain. Seizures normally begin on one side and show outwardly on the opposite side. If you told a neurologist, that didn't know Luke, that he was seizing on his right side, they would say that the seizures were probably starting with a tuber that was on the left side of his brain..
There is the problem.
Luke's tuber. The one. The "clear" problem is on his right side.
The doctors in Houston feel it is most likely just some disruption with the med changes, but it could mean something has changed.
This is TSC we are talking about here. There are no rules with this disease. Things don't have to make sense. It's the Wild, Wild West. We leave nothing to assumption, especially before brain surgery.
So we will go down for another EEG reading a week before the surgery on Dec. 7 to confirm and affirm and hope and pray that the data that we collected a few weeks ago is still valid and that all the activity is still coming from the bad boy in the right parietal lobe. We hope he is still the culprit.
If the EEG shows us the seizures are still coming from the right parietal tuber (I feel like I need to name him) yet again, the plan is still on.
Decemeber 13- Tuber out. Monitor. Check-up. Home hopefully around Dec. 21.
If there is more going on, or something has changed from where his seizures are beginning, it is a completely different ballgame. I have like 15 scenarios that they gave me, but I am going to just stop there. One day at a time sister...
Even though I am an admitted liar, the last post is true.
The doctors are shocked and excited about the clear data they collected from Luke's study. They feel very certain that the EEG in December will support what we found a few weeks ago. They are very confident that no matter what we find in a few weeks, the tuber in the right parietal lobe needs to come out. They are making a list and checking it twice. No complaints here. Of all the times to be overly thorough, before your child's second brain surgery, is as good of time as any.
So you don't have to share the post like crazy. We can continue to be happy and excited and relieved there is 'finally an answer that is going to fix Luke', but we know there is more to it.
There is always more to it when it comes to this stupid disease. There is always more to it when it comes to life. We all have our lies, our fine print that we hide to protect those who are rooting for us. To give a break to those who are hungry for something positive and hopeful and good.
So don't tell them yet. We will just keep this to ourselves. Some lies are good for everyone. I can't wait to lie to Sam and bring a little magic into his life.
I can't wait for him to come down the stairs, his eyes like saucers and mouth hanging open. I can't wait to tell him that reindeer fly and elves make toys and Santa is watching... all those lies I have never got to tell Luke. I will show him the half eaten cookies. We will hang up our stockings. We will put carrots and oatmeal in the front yard on Christmas Eve.
I will smile and cry and try my hardest to soak every bit of beauty from these moments because I know they are fleeting. I will suck down my seventh cup of coffee and pretend like I haven't been up all night, anything I can do to protect the innocence as long as I can from the fine print of life.
Because some lies are worth it.
11/16/2016 07:05:10 am
No words are sufficient. I love you! ❤
11/16/2016 07:09:03 am
Love you Stephanie. You are an amazing momma, and woman. Luke is lucky to have you, and that cute little Sam. <3
11/16/2016 07:51:04 am
Big love to you all! <3
11/16/2016 08:25:10 am
You know sometimes lies are what holds us together when nothing else will. But then what do they say, the truth will out? Love you so much and those babies. Always praying, may he hold you all in the palm of his hand.
11/16/2016 01:07:58 pm
Oh Stephanie you are amazing and beautiful and a great Momma for those 2 wonderful boys. May you be blessed beyond measure. Always praying for all of your family. Please feel that 'hedge of protection' around you that God puts there.
11/16/2016 03:38:14 pm
Thank you for sharing. Continued prayers that the docs have located "the" culprit tuber. You are a beautiful, beautiful soul. Much love.
Mary Beth Hughes
11/16/2016 05:14:21 pm
God Bless you Stephanie and your boys. My prayers will continue to be with you all. You are amazing.
11/16/2016 06:54:08 pm
Stephaine u are such a strong mom for Luke and Sam. We love u and are sending lots of prayers and thoughts ur way. stay strong and I know things will work out the right way. Love u
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Mother of two amazing little boys, one who just happens to be a TS warrior.