Blogging has been hit and miss for the last few months. Due that my readership is largely made of special needs moms and the random relative, I am sure that YOU understand...I am just not sure that I do!
I have been in a random state of flux for the last few weeks. For example, incredible joy at the good run we had with beating the tonic-clonic monster into submission and then flowing towards the depression of the harsh realization/reminder that Dravet is never going away. You really would think I would be used to this by now.
Even my attempt at humor with the OCD organization of my purse fell flat. I just can't seem to be witty lately.
The funk can't really be pinned onto a single event. It is just there. Bleh.
My drifting has led to sudden spurts of creativity, but nothing seems finished. I have a few posts in my blog attic (drafts) that are no where near publishing and that birthday present I was going to make for my sister just didn't even have the legs to get off of the ground.
However, it has also led to random bouts of cleaning out closets and cupboards, which is awesome, but at the most inopportune times. Like deciding to organize the pantry and my spice cupboard right before a birthday party. Who does that? No one is going to look inside and see if my jar of oregano is expired! I have thrown away bags and bags of broken toys, expired canned food and stained clothing. I can't really say that I am nesting, or spring cleaning. It just happens. My sanity is clearly questionable. Good thing I hang around a dog and a toddler :)
Speaking of birthday parties...Someday, maybe I will be cool enough to try and keep up with my friend, E. Right now, it is futile. Check out her daughter's mermaid party! I used to be the queen of theme parties, hosting and inviting over different friends and having a blast doing it. I admit, I am jealous of her creativity. That spark of mine is gone in this haze of cotton-filled numbness. Replaced with survival tactics.
Even the thought of undertaking a party is exhausting right now, especially when Cole could care less about them. SO-the party to celebrate Cole's four years on earth was extremely simple. The weekend before, we invited two families in the area who were in our class at 4 Paws For Ability and have siblings of Slugger's. We had a great time, even if it was nothing to photograph or blog/brag about. I will say this though, three golden retrievers in my living room, in a wrestling match, is quite a sight. We should have charged admission!
Any event has changed with our new perspective. Holidays are celebrated in minimal ways and there is way less pomp and circumstance than I am used to. On Cole's birthday I took the popcorn machine to his class and was the "cool mom" for five minutes while a group of eager pre-schoolers watched the miracle that is popping corn. That's it. Brian was out of town. Cole can't have cake. He did not even get the concept that the day was (supposed to be) about him. It can sometimes be depressing to the woman who thought she was going to have the coolest birthday parties ever for her kids. That Pintrest file, just sits there full of ideas that I am never really going to put to use in the near future.
However, someday I am going to have the fun parties again. Someday I will have the creative spark to write things that move other parents and make them smile. Someday I am going to deep clean my house on a schedule and not just when I feel like it is getting to the point of contamination possibilities. I still do the necessary stuff every Saturday, but things like washing walls-let's be honest, it just doesn't happen around here. Someday we will have friends. Maybe someday we can go on dinner dates and will read books that have nothing to do with genetics. We just keep telling ourselves that it won't be like this forever.
The other day, I had a "DONE DAY". You know, the one's where you are just done. Done with dealing with the nursing issues, done with insurance, done with trying to make ends meet and coming up far short even after trying to tighten every realm, and on and on. I was done with trying to figure out our next move with medication. Done with trying to be a detective and figure out if Cole was sick or just reaching his seizure threshold. I was done with money-we went without presents for Christmas, birthdays and our anniversary to help pay for Slugger. I was done with fighting for therapies. I have kept being turned down time and time again for Aquatic Physical Therapy, and when I finally got him a spot recently-I realized that I don't have the money to pay for it, even after all of the trying to make things minimal. I think that every mom has days where she is just "done". Whether they have a special needs child or not. Anyone can be "over" something or "done" with it.
I am done with a lot of stuff, but I am not done being a mom. I am not done fighting, I just want to take a hiatus. I'll snap back, just like I always do. I really don't have much choice there :) Am I the only one that has ever wished to vacate their life for just a few days? Probably not. A big portion is my attitude. Nothing is going to be simple, ever. I can not change that. I can change the way I think about it though and have some great examples to look to. I am not done being the primary caregiver for my child. I am lucky that I get to keep him at home. Some people do not have that option. I am not done with a lot of things. I can look at Cole and find strength when I did not think I had any left. He had an hour non-convulsive status seizure on Friday and stayed post-ictal for over 3 hours, continuing to have myoclonics and dropping O2 sats. Really, I had planned on taking an easy day since Brian had been out of town all week and I had been up all night for multiple nights, listening for any signs of seizure. Cole had to do his thing and make it interesting, thus ruining my plans for a relaxed couple of hours while he was at school. He is worth it though. I made it, and he made it too. Apparently, he is not done letting me know that he is the one who rules my life...and that is okay, because I am certain that I will never be "done" with him.