Last night you couldn't sleep. Tomorrow is your baby's first day of school. How are they going to act? Are they going to listen? Are they just bad for us? Will they try to sit on their teacher's lap? What if they are mean or don't make friends or are just terrible humans? What if I made them that way? Your mind is racing with tears rolling down your face. The chalkboard is downstairs for their picture "First Day of ___ grade".
In their room not far down the hall, they are thinking I hope my teacher is pretty. I wonder what I am having for lunch? What time is recess?
Kids are dumb.
You are borderline hyperventilating as you race to get them ready. You pray in the 3 hour car rider line that they will feel God with them today. You start peppering uplifting sayings that you saw on a Kardashians Instagram last night. "She slept with wolves without fear, for the wolves knew a lion was among them." You go on to say, "Remember that today babe when you are eating snack. You are the lion baby, you get it?" Ya, me neither. Start through the checklist...Shoes tied, You have your lunch box, Nana is going to pick you up this afternoon. Remember, BoogerButt is only a term of endearment used for your sister, don't call a new friend that today.
The door opens (you are anticipating the ending to Full House, "Couldn't have done it without you Danny Tanner") and they are gone.
They are fearless. We, on the other hand, have been jaded by life and problems. We know who "those girls" are in school and we don't want them messing with our daughters. Even worse, we don't want our daughters to BE those girls.
But they float above it. The storm may slow them down temporarily but their resilience seems abnormal. The door opens and they run through, leaving us in the dust.
Sometimes I feel so unlike other parents, but strangely enough, today I felt some parallels. Sure, my worry is different. Luke will not be starting school this fall due to his blood count and seizures, but nonetheless, I get it. You and I both stand at the door packing, making lists, making calls, buying crap they 'need', and staring at them and crying. We are doing the same things. We are thinking the same things. How can I protect you? Can I trust your brain/ heart/ soul to these other people that really don't breathe for you? Why can't you just stay my baby forever? I AM IN AWE OF YOU.
So the door that our family stands at "today" is not the car rider line to get to the first day of Kindergarten, but the line to do data collection at Texas Children's Hospital. But just like you, I stand at the door crying and so proud of my baby and probably just like your child, Luke stands at the door laughing, farting, and fearless ready to run through.
September 28- we will travel to Houston later in the day. We are on the fence about flying or driving. I have given both sides a LOT of thought and will let you know what we decide. Also, we have a few generous options about where we will stay. Don't know accommodations yet since we just got the call today.
September 29- October 2 Check in to the Epilepsy Monitoring Unit (EMU) for a 3 day EEG. This is what you see when you see kids with the electrodes on their heads wrapped up like a mummy. An EEG captures electrical activity in the brain. Epileptologist can look at an EEG and tell when a seizure is coming, when it is happening, or where they are coming from. Full disclosure, I 100% feel that I can read an EEG to the point that they turned off the computer screen in our room because I became borderline obsessed with reading them and was probably offending everyone around. by trying to tell them what was going on. But I was pretty good at it so I really think it was jealousy. Discharge is planned for October 2, but depending on the amount of seizures we collect, we may be able to leave early. Unfortunately, I think they may get what they need pretty quickly at the rate he has been going.
October 3-4 We have appointments in clinic. We are actually going to meet with Dr. Wiener and Dr. Koorg. Dr. Koorg will be our "Houston Dr. Franz". He won't change meds or anything, but he will oversee us on both of our stays. Dr. Wiener, as you know if you watched the video, is the man. He is the neurosurgeon. This man might as well be Prince (Rest in Peace). He is a gosh darn rock star in the world of epilepsy and is in the Rock and Roll Hall of Fame when it comes to TSC. And we get to meet them! (That exclamation mark is a true expression of how I feel. I know they are lame in general, but I need you to know how pumped I am to meet these men who have dedicated their life to such a rare illness)
Oct. 5 Luke will have his imagining. When I spoke with Marissa, the nurse who does the scheduling and intake for possible surgery candidates, she explained to me that they want as much information that they can pointing them to the area that is causing the seizures. In kids with TSC we are hoping this data points us to a tuber. Ok, so let me be real/ negative/ pessimistic/ ye of little faith-ish right now. There is a possibility that we do all this work and the seizures are coming from multiple spots or a scary/ dangerous to operate area of the brain. Then we may not be able to operate. (Prayer clarification: The traveling goes well and the seizures are coming from ONE area that is safe-ish to remove.) So we will have an MRI which will show us a lot but specifically where these stupid *CUSS WORD* tubers are in his brain. The next thing is amazing. It is called a functional MRI. The doctor who is doing this on Luke is pioneering this technology in the world. So they are going to take the MRI and they will lay zones on the image to show you which parts of the brain are in charge of what. Well wait a minute, my teacher friends may be thinking to themselves, I went to a Professional Development on the function of the brain and behavior, so I can skip over this part because the frontal lobe is in charge of impulsivity. I know the rest, too, but i don't want to be a show off... Well wait a little second before you drop the mic. Kids with TSC have brains that don't really care what is in your text book. The tubers are in the way of many pathways so the connections have to reroute and as we all know from our own rerouting experiences with Maps, the destination isn't always correct once we get all turned around. What that very sloppy analogy means is that because the tubers are in the way, the brain functions differently. Also, some of you may remember, Luke had a pretty significant chunk (this word seems insensitive, but what else do you say?) of his brain resected when he was 5 weeks old. So because of the plasticity of the brain at such a young age, the brain rewired itself to compensate for the missing parts. The younger you are the more resilient. This would be a great place to stop since I have come full circle with the resilience comment, but sorry, not done yet. He will also get a CT scan to check for calcium in the tubers and a MEG scan which measures magnetic activity and a PET scan. He will be sedated for all of this but the CT scan because that "literally takes 10 seconds". But he will be out for an hour and then will head back to the lodging that we decide upon.
October 6- Come home.
The door is open. I shed my tears. I am anxious and scared, but also prepared and so proud of my little warrior. I am ready to walk through. When I start to feel too scared to take the first step, I think about the hell he has gone through, always with a smile on his face. His strength and resilience keeps me in awe and motivated to walk through that door holding his hand, ready for the next adventure and ready to find him some relief.
Mother of two amazing little boys, one who just happens to be a TS warrior.