Stronger

This week has just been one of those, when it comes to Cole. He has needed rescue meds every day but Tuesday, with no apparent illness. This, has never happened. It is something that would have most likely sent a former version of myself into a depressed state. However, I have felt more empowered this week than hopeless.

I think things started to change about a month ago. After that first liberating experience of continuing to do what we had planned on, after a major seizure, we have been approaching things differently. I can only accredit this change in myself to time and support from other warriors. Now, occasionally I have just been stupid and tried to risk things that were SO not worth it. Case in point, I took Cole to the store for the first time in forever, it was a horrible experience. The only thing we really got out of it was groceries, and I could have sent Brian to get them on his way home. However, sometimes you just have to test your boundaries and see what is going to happen. Some days he can handle being in public, other days, not so much. Yet, doing something that is worth the risk is becoming easier to imagine.

In between things like our printer breaking for the second time, losing one of Cole's FL-41 lenses (and thankfully recovering it hours later), I have had plans. Like, real plans! For those of you who know me personally, you understand what this means to me. I'm a list maker; an organizer. Living for the last year and a half or so by the seat of my pants has not been easy. However, it has also taught me to have flexibility...and that the world won't end if I am 5 minutes late (well, maybe it won't). I planned on having some lovely ladies over to my home one night. Cole was having clusters, but he was in his father's capable hands. We planned on breaking out of the house once or twice while we had company in town. Cole had major seizures on both occasions, but we STAYED. This was a freakishly tough/great experience. I had my doubts if we would even leave the house after the week that Cole has had. He is still not eating well. I took him in for a blood draw on Thursday and they could only get half of a tube. He needed 6. They were closed on Fri, Mon is a holiday, so we have to try again on Tues. We need to see where all of his levels are before we can move forward with an action plan. I have been so confused. Do we go back on the full ketogenic diet? Do we up the depakote? Do we up the Keppra? Do we lower something? Do we? Do we? Do we? It has been mentally exhausting.

I am so grateful to Brian's brother, who is willing to put his pleasure vacation on the back burner. He didn't get to go to an amusement park, or museums, or many of the other attractions that one would come to our area to see. He wanted to spend as much time with his nephews as possible, taking into account Cole's restrictions. That is saying a lot for a single guy. Cole really misses him.He even watched Cole for 3 hours so that Brian and I could go to church together. It was wonderful! People were worried. They came up and asked if Cole was okay and wondered why we were together! :) Can't wait for those nursing hours to be put to good use! It was also nice that they noticed.

We went back and forth on what to do on Saturday since the week had been rough and Cole was still struggling on Friday night. We eventually settled on trying out a beach that is within an hour of our home. I brought every thing I could think of to make it easier. Note to self: purchase a beach umbrella, immediately. We were not there for even 20 minutes before the excitement, light and noise got to my boy. He had a full on tonic clonic in the sand, with his O2 dropping into the 60s. I sent Brian back to the car for the oxygen tank, low and behold we didn't have any tubing! It's a good thing that he popped back up into semi-normal range within a few minutes. The seizure took two rescue meds to stop, but we just decided that we were going to tough it out. Cole wanted to be up and going fairly quickly, but did not want anything to do with the sand or the water. So he just stumbled/wandered for a while with his dad tagging along to make sure he was okay. It probably helped that a family near us had their disabled daughter in the bay. Her pink wheelchair was parked right on the sand and they carried her in to the surf. She was definitely more disabled than Cole and was older too. Probably around 11 or 12. However, I could still see the joy in her face while the waves bobbed her body up and down as two of her loved ones carried her in the brackish water. Her squeals of delight made me smile and think, "If they can do it, so can I".I remember our friends from Australia recounting the story of their daughter having two major seizures on an airplane over the Pacific Ocean. I seriously thought they were crazy. Who would take a risk like that? I also remember talking to other parents about how they went hiking, swimming and even camping with their Dravet kids. I thought to myself, "It is going to take me a long time before I get there."

I am just proving to myself that I am stronger than I thought. Well, Cole is proving it to me too. After the meds wore off, he got in the water and played like any other three year old would. He was doing so well that we even went to a small museum afterwards. Risky? Most certainly. However, it was so good to just be together, doing something besides wanting to pull my hair out.Brian and his brothers are off at the National Memorial Day Concert on the lawn of the capitol and I am here at home with Cole. Tomorrow, there will probably also be some activities that Cole and I won't be able to attend; but this weekend, we have been more active than we have been in probably a year. It had some highs and some lows. I'm not ready to fly over the ocean, or even drive in the car for more than an hour. There is also no way that I am going to adventure somewhere that doesn't have a decent hospital close by. Yet, I think that we have proved to ourselves that Mini-Hulk is so resilient that he is stronger than we think. Maybe I am too.