Every sitcom has that episode that is needed to tell the story, but just isn't your favorite. I mean, you get why the writers put it in, but you won't view it again when you binge watch this winter. That'd be this blog I suppose. I gotta tell it, but if you are looking for it to come together in an inspirational greeting card ending, I ain'tcha girl this evening.
So, backstory... yes, things have changed enough in the past few days to have an actual backstory.
Luke started Vimpat, another seizure medication, this summer. He started to become wobbly and unbalanced before starting the Vimpat, around his birthday, but it has gotten progressively worse in the past few weeks. We have been racking our brains to decide if the Vimpat was causing the wobbliness or if it was the direction in which we were heading anyways due to the amount of seizures he was having and the area of his brain in which they were happening. That being said, we have seen no decrease in seizures since starting the Vimpat. His ''normal' seizures we see 3 to 7 times a day have not slowed down at all.
So with the combination of the possibility of increased balance issues and little to no seizure control, we decided to start to wean off the med and try yet another. That was two weeks ago.
Since then he has slowly started to develop these cluster types of jerky-twitchy- shocky (Sorry for using such technical language) seizure episodes and they have started to ramp up. At first, you could just notice a little eye twitch and a whine. That would maybe happen 3 times in 5 minutes. Next it changed to little shocks. Today, we saw at least 45 minutes of seizure activity. Now, I am not a mind reader. Luke was not hooked up to an EEG, but even after two large doses of Ativan, Luke was still agitated physically and mentally. We were very close to going to the hospital to get some rectal Diastat. (I know, I know, I emailed he clinic tonight to get a new script to have Diastat and Ativan at the house.. It has been so long since we needed something like that, they had expired) Honestly, we wouldn't have given him Diastat after two doses of Ativan anyways without being supervised. My plan A tonight, when the hospital became plan B, was give the second dose of Ativan and start asking in an affirmative tone (that is PC for 'yelling') "Give this child peace, Lord!" Ok, maybe I asked for peace for us all. At this point we had been dealing with some kind of awful for about three hours. Even Sam needed a little peace at that point. That may have been why it took a little longer, I did a bundle prayer for us all. Feel a little badly for raising my voice. I have been told Iam a little aggressive at times...
So Luke and Sam are peacefully sleeping and I am peacefully eating my emotions in a vat of popcorn.
No Danny Tanner ending tonight kiddos.
Spread some love and keep on dancing.
Cause some days, it is just weird to be positive.
Hospital twice in a week. Once for infusion and once for a check in with Franz.
We have had three nights in a row of inconsolable tears.
Seizures have gone from "normal" to full body electrocution to clusters of 10-15 jolts in a row.
He wants to get up, but he doesn't have the strength or balance.
He wants to suck his bottle but his motor skills can't find his mouth.
He wants to be held but not touched.
So, we went down on the Vimpat because it was messing with his balance. Is that the problem? We held the Afinitor for two days when we got his labs back last week because of his white count. Is that the problem? The infusion makes him run a fever and vomit and we have read about other side effects that go along with infusions such as migraines. Is that the problem? He was off the Afinitor for a month five weeks ago and it takes a long time to get out of body. Is that the problem? TSC is a moving target, always moving and changing. Is that the problem?
I know that this is just one (three) bad days in a row. I know Houston is just around the corner and we will have some more answers. I know Dr. Franz is the best TSC neurologist in the world. I know faith and fear cannot coexist. But some days it just feels weird or disrespectful to be in a good mood. It feels distasteful to laugh when there is this pain that you cannot save your child from. I will say, shopping the Dress and Dwell clothes boutique overstock sale last night did help. Getting away so you don't feel like an a-hole for smiling and getting excited about something trivial. Even if it was the sale of the century (seriously, everything was $10), is going shopping while your child is hurting irresponsible? I know the answer is no, but I also know that every parent knows this feeling. We all have this disgruntled person, either in real life or in our subconscious, that tells us somehow that what we are doing is not enough for our children. We aren't doing it right. We are selfish for going to dinner or work or school. We are reckless for spreading ourselves to thin to try to do it all.
Come on guys... we aren't.
We are the example to our kids of hard work and responsibility, but most of all we can show them that it isn't weird or rude to be happy when the wheels are falling off, it is freaking awesome. (And so are my new $10 velvet leggings.)
...and then there was the text I got that made this happen..
We were just hanging, watching Elmo, getting ready for bed. Sometimes at night I start to reflect on the day, the week, my life. I get into my checklist of things to do before bed and fall into my own head. 20-30 minutes will go by and I will realize I haven't said a word. It's not that I start feeling sorry for myself, but in these hours, my reality seems all the more "real". I zone out and fall in to my thoughts and the next thing I know, the kitchen is clean and jammers are on. Then comes that precious time when the checklist has one final component, snuggle. I force myself to stop and smell the boys hair. I try to stop, but it only takes seconds for my inner primate to appear and I am back to clipping nails and cleaning ears. Then my phone dings and I got this text below...
Watch to see the sweetest gut punch possible.
Ever been punched in the gut by a whole bunch of love? It is an awkward feeling. In this particular situation all the emotions were able to escape through my face, specifically my tear ducts. This text reminds me that my head is a dangerous place to hang out.
My heart knows the truth and I am not alone.
In afternoons when I haven't spoken in 2 hours because no words are there, you are there to shout his worth.
On days where I feel like I am dropping the ball, you all are there to pick it up for me.
In conversations when I forget to ask how your life is going, you don't assume selfishness, you share with me because you know I care.
When I felt like a blog would seem like a lame attempt at validation or attention, you reminded me that we can all grow from sharing our pain, love, and insecurities.
Opening up our life was not a decision taken lightly by me. Being vulnerable is not an emotion I'm down with. But the hope, support, and, strangely enough, community I have felt from this was unexpected. Letting people in allows the possibility to be understood, maybe not agreed with all the time, but understood. I've said it before and I will say it again, thank you so much for being part of our little Land of the Misfits. We don't have to have it all figured out. We will shout for the other when they are too scared to talk. And we will pick up that ball when our butterfingers can't hold on. And on those days you can't get out of your head, we will give you a gut punch of love.
A Very Special Thank You to Teshea and Alex Barbee: great friends and prayer warriors. This summer they visited MIX and recruited some more members of the team.
MIX is a summer camp for 6-8 graders put on by CIY (Christ in Youth), Students are encouraged to be Kingdom Workers in Gods Kingdom and use their own gifts to spread the word of Jesus. They focused on "SPEAK TRUTH AND LOVE" at all times. There were 1,000 kids there being pumped up by scripture, song, fun games, small groups and spending quality time together.
Dear Molly and Claire,
You won't remember tonight forever, but I will.
It was Wednesday. We ate spaghetti. You played with socks for a half an hour. Claire, tonight Luke gave you a gift of his Superman raincoat with a cape and a pair of Incredible Hulk socks. Molly, tonight will go done in history as your first babysitting job or the time you got timeout for getting in Sam's crib. But I will remember it as something different. I will remember the gift you gave me.
Tonight you let Luke play. You chased him and he giggled. You left the room and he went to look for you. You tickled him and he looked you in the eyes, smiling, to tell you more. You threw the ball and he went to retrieve it for you. Luke played with you. Luke played with kids, tonight, for the first time ever. Tonight was nothing special because you eat spaghetti with friends and play dress up with friends and chase and giggle with friends all the time, but, you see, we don't. You not only gave me the gift of being with people I love on a Wednesday night, but you let me see that my child may be ok without me. I've convinced myself that he needed me or Steve or his grandparents to do anything, but you showed me that there are little hearts floating around this big ole world that will protect him one day when I have to let go a little.
Tonight you gave me a gift to show me that he saw you and felt you and connected with you. He has never wanted to interact with kids before. Really, he's never even noticed them, but tonight he was ready. You were ready, too. Your parents have been sharing Luke's story with you for the past three years. They prayed with you for "Baby Luke". They let you see their tears. They have been honest with you in times it would have been easier just to protect you from this reality. But they knew. They knew they were preparing you for a day like today when you would be ready, not only wanting to play, but wanting to learn. You asked questions that may have been scary to ask, but you want to know because you love us because you knew this was more than a play date.
Luke has an amazing family who loves him very much, but tonight you just became Luke's first friends. I am so proud of you girls and am so grateful he has two mini-members of his team to be his protectors, but more importantly, his playmates.
Mother of two amazing little boys, one who just happens to be a TS warrior.