Calm Amongst the Chaos

Johnny Rockets, a luau birthday party, church. All places we attended a few weekends ago. All places Lily had seizures. Big nasty seizures.
It was in the mid 70’s that weekend, it was lightly overcast and Arizona was showing us spring in true perfection. We wanted to be outside, we wanted to enjoy the time as a family. And we did. But always in the background is the looming seizure monster. He is always there just to take away our smiles, to bring us that sense of reality when all we want is to be, dare I say ..normal.
I have said since Lily was an itty bitty that I’d take it all, the wheelchair, the delays, they everything, but the seizures… Oh how I despise the seizures.
She is a zombie. She takes 4 heavy duty meds, all high doses and she is a zombie. Then she has seizures still on top of it all and she sleeps and drools. It isn’t fair. I am not OK with it, yet I have to be because nothing seems to change. Nothing ever changes. Med changes will help for a short period of time, but the monster always comes back and he just comes back harder and harder. He has no care in the world where we are. He thinks “Oh they are having a nice family outing, let’s stop that.”
We are desperate to stop this monster and willing to do whatever we have to do to stop him in his tracks.
Lately we have been trying to catch a seizure on video for her next Dr apt and we keep missing them from the start so while out at lunch Lily started her pre big seizure (small seizure of jerks- that is my medical terminology of course) and Andrew started filming, not knowing for sure if she was going to go into a big one or not and then boom, seizure.. while ordering our lunch.
I hesitate to show this video for many reasons firstly, I really only like showing the pretty side of Lily. The smiles, the calm gazes, the 1 out of 80 photos that looks its best. We have always felt Lily has enough going on, the last thing we need is people staring at her for looking “weird” or whatever so her internet face is a picture perfect one. And I am not ashamed at all to say that. I will show you any ugly angle of myself any day, but not her.
Secondly, the internet is full of offensive jerks who hide behind anonymity and find happiness in others great sadness, we have felt true evil from strangers via You Tube comment on a sweet video of Lily taking steps with her therapist. Therefore a video of her seizing is welcoming these evil people to come back into our world and that scares me and thirdly, this video in particular, we are ordering our lunch. While our daughter is seizing. That seems pretty awful. Except for this is our 11th year of dealing with daily seizures and it is a reality of our every day life.
So I guess I feel like after sharing all the reasons why I didn’t want to post this video, I will share the reason why we want to share the video.
This is our life. This is the life of many other families. This is the ugly side of a very ugly disorder. This is our reality. And when we hold fundraisers or ask people to vote for IFCR or say a prayer for a friend with CDKL5 that is suffering, this is why. This disorder robs us daily. Daily of family outings, any type of normality, Lily won’t ever be able to ever succeed in any therapies or any life skills if this reality continues.
We need something to give. Something to change. We need more Doctors on board with CBD trials and lawmakers to understand that there are some real healing agents in medical marijuana and although we have yet to get our hands on what Lily needs, we will continue to look into this more. Or try harder to find what needs to be done to help calm seizures in Lily and kids like Lily.
So this is the video of our sweet Lily having a lunch out with her family and having the seizure monster ruin it. And seriously, ignore the talking. We truly are ordering lunch. And there is super loud Johnny Rockets jukebox going on. And a very bubbly waitress.
It’s our life.
Life in all it’s messy, complicated, life like stuff we deal with.

*Updating due to the amount of people not able to see the video, I did post this to Youtube I tried to set the settings as private as possible, if I feel this was not a good idea I will remove*