The Middle

It just takes some time
Little girl, you're in the middle of the ride
Everything, everything will be just fine
Everything, everything will be alright, alright
Jimmy Eat World

Sometimes it is hard to forget that you are in the middle of the ride. Occasionally, you want to yell at the operator and tell Him that you want to get off-because you are ready to pass out. The daring twists and turns and constant ups and downs are making your head feel more than a little funny, and you just want your feet on solid ground for a little bit before jumping back on. Alas, there is no break from this reality.

This week has been full of soaring heights, loop de loops and daring drops. The ride has been wild.

*Multiple seizures-3 GTCs, lots of smaller ones
*Deciding to come off of the diet completely
*A trip outside
*Time with family
*Deciding to go back on the diet because of increased seizure activity
*Re-entry of major behavior issues. New favorite-breaking things to get attention
*My sweet psuedo-niece was born without complications
*Three doctors visits (one that took 6 hours)
*Made appointments with Medicaid waiver workers
*Chocolate cake
*Got our tickets to Miami
*Reality setting in that we are going to have to switch/add meds
*Changed all of the school evals
*Being told that Cole's insides are rebelling so he had to go on an even stricter diet than keto in order to heal (this has been fun)
*Cole saying some of his funniest stuff yet
*The heavy duty pulse oximeter coming
*I survived downtown DC's roundabouts, by myself!
*Me getting to look forward to a short and sweet trip home for my birthday/family wedding
*Having to collect "samples" from Cole...he is never cooperative. Now we have to try again on Monday
*Cole having blood sugars as low as 55 (I applaud people who have children with Diabetes)
*Invasion of ants throughout the entire house
*My first birthday present arrived (FIESTAWARE! Thanks, C)
*Doing so much laundry from the blood sugar issues that I am ready to have Cole live in a plastic suit and sleep on a cot
*My realization that this sedentary lifestyle of mine has made my endurance practically nothing when it comes to physical exercise
*The purchase of a used treadmill. This is going to be a huge step for the girl who has a serious phobia of working out-too many bad experiences i.e. seizures
*Both parents got out (separately) for a few precious hours to do fun stuff like basketball and cooking club
*Cole vacillating between post ictal and Mexican jumping bean

This is just a mixed bag from the week. A bunch of other stuff happened, good and bad. The thing to remember is that we are in the middle of the ride. Sometimes, I need to just take a step back and remind myself that it is not going to be like this forever. There are some of our friends who are going through a much rougher time than us. My advice to them is this, "Hang in there! You have someone on your side!" It helps to know that you are not alone, even when you feel truly alone, and to think of the good things. I am enjoying the hilarious things Cole says. It makes me grateful that we took the chance of only keeping him on one anti-convulsant so he could develop language, instead of focusing on controlling all of his seizures. I don't want to lose this version of him. Example: I was plucking my eyebrows and he came up to me with a concerned look on his face, repeatedly asking me, "Why you picking your head?" He seemed genuinely worried. I just bust up laughing. He has never been too keen on grooming anyway ;)

Just like the song says- Everything, everything will be just fine. Everything, everything will be alright, alright.