Today is purple day.
It felt very unsignificant to only mark the day by wearing a purple cardigan. I would have liked to go to some convention, participate in some fundraiser or whatevs. Maybe some year when we start having days that are NOT filled with seizures I might have time for something extra like that. Mmmm, that sounds nice.
Epilepsy has changed and dictated so much in our family, even as hard as I have tried to not allow it.
Just like any trial, there is no way to understand what it's like until you've been there. Little (and big) parts of our day are affected in ways I wouldn't have known. For example:
Because of uncontrolled epilepsy, Dawson sleeps with Kevin and I. Here I can monitor the seizures; how many he is having, how long he goes without breathing etc. This greatly affects the quality of my sleep- which in turn affects everything else. I sleep much better with him right next to me than hearing him in the next room. He sleeps better and relaxes after the seizures if I'm near vs. waking up scared, freaking out and having to be rocked back to sleep.
Dawson's bed time / naps are majorly harder because of epilepsy. With Halle and Drew I would put them to bed and let them cry themselves to sleep. I know it can be hard for any parent to hear your kid crying for you and be able to not give in. However you can do it because you know they are safe. The prob is he isn't safe. First of all, I have to take off his helmet because the strap chokes him when he's sleeping. Also, Dawson has more seizures when he is tired. So when I have let him "cry it out" I hear him crying, followed by him getting out of his bed and then....THUD. The crying silences. I know he is seizing and can't breathe. I wonder where he has fallen, what his head has hit? When he comes too he is hysterical, and after a few minutes of more screaming...another THUD. Etc. The best alternative I have found is to lay down with him until he's passed out and through the first round of seizures. As a busy mom, this is just hard to keep up with. Not only does it take up a huge amount of time, but it slows me down and makes me tired. I don't have time for tired. What is super duper frustrating is even after doing all of that, a seizure can wake him up at any time. If I'm not close enough to help him fall back to sleep, he's up and needy/cranky.
Epilepsy takes me away from Halle and Drew. Yes, this is true whenever you have a baby. This is more. The time of night where I need to get Dawson asleep, I would like to be tucking in/spending one on one time with my other kids reading stories or just chatting. I still do, but Daws has to be with us and he is very demanding of full attention at bedtime. With all the extra appointments and needs, I can't do so many of the mom things I want to. Plus I am tired and drained, which unfortunately affects the quantity/quality of the time I do give them. Daws is a major home-body and has a hard time in most public places. Today for example, Halle and Drew asked me (like they ask every week) to come in and watch them in tumbling. The last 15 minutes I went in and (once again) Dawson fell apart the moment we walked in the door. Trying to hit me with his helmet, kicking, screaming, biting himself ...the whole bit. I could only do a few minutes of this while trying to give H&D a thumbs up sign before taking him back to the car. It makes me sad I can't just sit and really focus 100% on my other kids + 95% of the time. This could be regular two-year-old stuff, but when you add that regular stuff + demands of the epilepsy= very little extra.
There are sososo many other parts of every day epilepsy affects. I could go on and on. I will stop there and just wear my purple cardigan.
Happy purple day.