Redefine

nor·mal/ˈnôrməl/
Adjective: Conforming to a standard; usual, typical, or expected.
Noun: The usual, average, or typical state or condition.

The only constant in our life is change. If you are a follower of this here blog, this is not news to you. We are constantly redefining ourselves and creating a "new normal". What is expected or usual one day...is thrown out the window the next.

Take the last 36 hours as an example.

Cole had a great day on Sunday, he stayed home from church and seemed to be turning the corner with his illness. He had been expressing desire to eat, which is huge for him. This kid has been apathetic about food from the time he was an infant. It has always been a chore to feed him. This is really the first time he has asked for specific things and wanted large amounts, consistently throughout the day. So, we were excited to welcome guests for dinner. There was family in town visiting other relatives and they all came over for a meal. Cole was thrilled to see his grandparents and cousins...too thrilled.

Our somewhat normal day turned into another normal day. Cole had a 20 minute seizure that took two rescue meds to stop. His sats were at 50% (remember 100 is normal) by the time I got the pulse ox on him. I hate it when he turns blue. UGH! This all happened right as everyone had sat down to dinner and we were starting to eat. We encouraged people to continue eating, but the silence was quite funny. No one really knows what to do in a situation like this, even if you are family and have seen it before. So, as we were attending to our seizing boy and Brian was yelling at me to get the meds, people were slowly bringing their forks to their mouth and trying to quiet my nephews. Cole stayed blind for about 45 minutes post ictal, allowing Brian to finally get some food. We made awkward jokes about arranging half-time entertainment and went about cleaning things up. He snuggled with grandpa for about 20 minutes, his vision came back and he popped up, ready to play like nothing had ever happened. He is so resilient. So, he went downstairs, played for a while and everyone left a few hours later; just like any other normal visit. Who are we kidding? We don't have normal visits! Case in point, our last visitors had to take care of themselves and leave without a farewell since we were all at the hospital.

Cole then stayed up ALL night long on a Versed high and soiled two sets of sheets on two beds. By the end of the night, I just didn't even care anymore. I was out of linens and couldn't stay up for the washing machine. All three of us were in my bed, with a towel covering the wet spot. Brian took to snoring as Cole and I just tossed and turned. Oh, how I wish I had his special powers of falling asleep instantly! Daddy went to work and Cole wanted to be up and watching television even though it was 6 am. He was demanding all of my attention and having meltdowns left and right, the early morning hours just passed in a blur of screaming and Caillou. We had a doctors appointment first thing, so when it was time, I got him ready, tried to look alive and got him loaded in the car. Oh, did I mention my car was out of gas and we were late? ;) He did surprisingly well at the doctors office, playing nice on the floor. Who cares?! There was no screaming, no running out and escaping into the hall during the exam, stealing the doctors equipment, trying to play on the computer and other things we deal with when making an office visit. I was cool with him playing on the floor! I guess the sleep deprivation was slowing him down. I had to try and convince our new neurologist that I know what I'm doing and that I don't need his approval to make decisions. The hour long appointment was draining for me, but Cole was acting like he was just fine and dandy.

I decided to take a shot and meet up with our relatives, who were going to Mt Vernon. Why not live dangerously? He had already had a major seizure the day before and we have not had back-to-back tonic clonics without illness for a really long time. The day was beautiful and I was feeling lucky. 86 degrees with a slight breeze. Cole had a great time! He did so much better than expected. He has not been outside, during the day, doing an activity since JULY of last year.I was a little nervous, to say the least. Add to that, we have been off of the diet for a week now and he really has not been outside, where the drop seizures have made their last appearance. No drops. Hallelujah! He even focused on the animals for a short period of time. He asked the cow, "Excuse me? Can you moo please?" It wasn't cooperating and acting like he thought a cow should. So funny! During lunch, he had fruit, cheese and water. All keto-friendly, but in no regulated portions. Then he decided he wanted a hamburger. What? This kid has never liked meat. He has real issues with texture. What he actually wanted was the bun. So, he took half of the top of a hamburger bun and ate it like it was candy. His first bread/gluten in well over a year. I had to restrain myself from jumping on him and prying open his jaws. I just watched him with the continuous thought of, "You can't do that! Don't eat that!" running through my head. He was fine. He was getting tired and had walked a lot, so I took him home. He slept for three hours. I fell into bed too, not even caring that I still had the previously mentioned wet spot on my sheets. Right as soon as I really fell asleep, the phone rang. It was Medicaid! She mentioned my groggy voice and asked, "Is this a bad time?" I reassured her that this phone call was important to me. I didn't want to be put at the bottom of the stack again. So, I slapped my face and cleared my throat and went through the screening phone call. Couldn't sleep after that ;) It really does seem like we will be getting services! HOORAY! Could a new normal include nurses and respite? I can't wait to find out. The relatives came back for dinner. We had a great time and there was no half-time show or circus acts. Just kind of a normal, family get-together. I took my kid outside! He ate regular food, from a food court! We had a great day. However, I knew that it was not going to be the new average, or expected. I took yesterday as a gift.Cole slept through the night and then this morning started having clusters. I noticed too, the first real eye flutter that he has ever had where his eyes rapidly opened and closed. Add another type of myoclonic to the list. I put the pulse ox on him and he was at 75. The jerking progressed, so we started our day with two more rescue meds. He also has a lot of mucous in his stool. G tube has stopped bleeding, but the chunks of skin coming off still worry me. Back to being a detective. He is now napping off his Diastat, still in his pajamas at 3 pm and I am trying to muster the energy to wash my hair. Totally normal-for today.

We are constantly redefining what normal will be for the day, minute, hour, evening, etc. Today is a seizurey, sleeping-off-the-fun kind of a day. Who knows what tomorrow's definition will be?