For the first time in a long time, I feel like there is nothing else to say. But I know better than that. I feel like I have said what I need to say, Rewinding to the past and filling in the wholes, Forwarding to the future to explain what could be, and pressing Play to let you see the day to day. The meetings with doctors force you to do the same- Rewind and tell the past, Press Play and assess where we are now, and Fast Forward to the possibilities of the future. Over and over, you continue to reel yourself back to the present, the only place that is safe.
Rewind, Fast-Forward, Play.
When I stay focused on feeding, diapers, blocks, blanket, singing, medicine, none of it seems so overwhelming. I walk around this big-ish city navigating trains, crosswalks, shuttles. This isn’t so hard, being the mom of a very special child. Ms. Independent. Ms. Self Sufficient...
And then it hits me… I have a mom here to help me every second.
I press Pause. I have a job. I am in school. I have a baby.
As busy and heavy as this week and a half has been, it has had laser focus. No emails from work, no calls from Medicaid disability, no group projects for school. It has presented tough answers but there has been nothing to let my mind escape the truth. I have been forced to have all the feels, I have let it soak beyond the surface and have had the luxury of my mom as a safety net. A safety net to catch me when I need to check out and stare into space for 15 minutes and let the rogue tear squeeze its way out. I Fast-Forward a few years and watch myself pick Luke’s huge body out of the tub. My wheelchair accessible van totes the family around to therapy and appointments.
“Oh, you shouldn’t think like that. You should have faith it will all be ok,” you may be thinking.
Well it will be ok, we will be ok no matter how it ends. The reason we will be ok is not because all our problems are gone, but because we face them without fear. To do this, to not be afraid, I am going to tell you that I HAVE to 'go there' every once in a while. I have to entertain all the possibilities. I have to Fast-Forward a little.
This is not a Lifetime TV Show. The ending isn’t that predictable. There may be a few more twists and turns than that. I have to prepare myself for all options. I only do it for a second or two. So don’t worry. I don’t go too far, I don’t watch too much. I don’t go to the credits, I am not a masochist.
I hate doing it but I know it is an emotional exercise that has to be done. (For the record, I am not a fan of any type of exercise- physical or emotional) I am relieved to have had these moments to process, not just to Fast-Forward, but Pause as well. I know I have to do it now because when the wheels of that tiny excuse for a plane hit the ground tomorrow, it is right back to the main picture show. Weddings, wisdom teeth, Medicaid meetings. And Sam. Oh Sammy…
(Don’t even talk to me about this kid right now. I am not even going to try to capture who Sam really is yet. First of all because I haven’t seen him in 8 days so I will be full fetal position in this Radiology waiting room within two sentences. These poor parents are scared enough right now, they don't need to try to figure out what is wrong with me. But the other reason is because he is such an interesting human. I am actually nervous to try to put who he is into words. If Luke is my baby boy. Then Sam is my main man. So… that conversation is over for a while. I’m in public trying to hold it together people.)
So Luke is back in imaging now. We had a great day yesterday meeting the neurologist. Dr. Coorg, and filling her in with Luke’s story. No real news yesterday except for something that hit mom kinda hard, so I thought maybe I should clarify.
IF we find where these seizures are coming from and IF we remove the problematic tuber and IF Luke’s seizures stop, that doesn’t mean they are gone for good. As a matter of fact, they expect the seizures to return. It reminds me of a desperate conversation I had with my first principal, Terri Boutin. I explained to her that my class would be perfect when my most challenging student would make everyone's life easier and move schools. She was the problem, not my inexperience and immature behavior management skills. She just nodded her head and smiled and with all the wisdom and kindness and patience in the world, explained to me that when one moves there is another one just waiting to pop up in their place. There is always one waiting for their turn to have the spotlight. Oh that child haunts my dreams. But she wasn’t lying. She left and within weeks, I had another one that was the problem. It was them, not me… wrong.
But it's the same with tubers.
We may remove this tuber on Luke’s right parietal lobe and he may be seizure free for a year. But they could very well return. We are buying as much time as we can to let Luke's brain develop and rest. However, it is a possibility that another tuber will pop up as the problem child in Luke’s brain.
He has more tubers in his brain. They are taking pictures of them right now. He has abnormal activity in ALL parts of his brain. The potential of another tuber becoming active is… likely/ expected/ probable? This is where it is important to play the movie out a little bit. We have to absorb a few potential endings. If I don’t then what do I do when it happens? I can’t be so shocked I freeze. I have to know that this isn’t a Choose Your Own Adventure book. We can only help so much. He will still have TS. He will still have tubers.
What do we do then? This is where I let the doctors tell me that we will NOT be out of options and that we will “cross that bridge when we get to it”. That is doctor talk for, “Simmer down sister...Quit getting ahead of yourself. One surgery at a time, crazy.”
So that is where I am. I am pretty sure I said I have nothing else to say, but that is always a lie.
This movie that I am in is surreal. Sometimes I see the trailers to other movies and have a little 'Goldilocks Syndrome'. Their movie is too cheesy. Their movie is too dark. Their movie looks juuuuust right. But I never have the time of energy to watch the whole movie and lose interest soon enough. I have my own to try to keep up with. There are ups and, as of late, a lot of challenges. But, if anyone should win an award, it is the casting director. Even the toughest stories are worth watching if the characters make you fall in love with them. I have seen some Oscar worthy performances.
We all have a movie that we are living. We all have plot twists. We all have characters come in and out of our lives. But that makes the movie worth watching. So here is some fluff to pad the heaviness of the past few posts. Here is the other 80% of the Houston episode. No more Fast-Forwarding to the what-ifs. No more Rewinding and reliving shoulda, woulda, coulda.
Time to come back to center and press play.
Mother of two amazing little boys, one who just happens to be a TS warrior.