Been Awhile

It has been a REALLY long time since I have even bothered opening up my blog. To say life has been insane would be an understatement. Turns out TSC never takes a vacation and as the kids get older the trials are magnified. Thankfully, Ry is still mild and her seizures remain controlled with medication. In just 3 short weeks she will be promoted from the 6th grade and officially be a junior higher.  Jake is a 3rd grader in a 4-6 mild to severe SDC class (because of his size). Behavior remains difficult and everyday is a balancing act of seeing his sweet, lovable personality, and flipping the switch that causes him to flip out uncontrollably with no possible reasoning skills to bring him back. Luke is averaging 5-10 seizures a day, which remains the most controlled his seizures have been since he was 3 months old. Now that he is physically doing better, behavior has begun to interfere is his day-to-day functioning. Being on so many seizure medications, it is difficult to add something else for behavior. Next week we will begin the Modified Atkins, in hope that it will help control some of the seizures and allow us to wean him off some of his seizure medications.

We never know what the day will bring or what obstacles we will have to overcome. We also never know what milestone one of the kids will reach or  the what small accomplishment we will be able to rejoice in. TSC is a constant rollercoaster of feeling complete defeat and knowing that you are undefeatable. There are no words that can adequately describe what those of us that live with TSC daily go through.

This is the video I made to fundraise for the TSC walk, and is a short version of our story.

 

So, I am going to once again begin my blogging, if for no other reason than expressing this unfathomable thing called life.  I have always loved to write and as the TSC community is continuously revealing their strength and support to me, I thought, why not document our day-to-day trials and victories again. I am hoping that this will be therapeutic for me as well as remind me that there will be good and there will be bad days. The key is stepping back and seeing how God brings you through the days you feel you can take no more, learn from the errors and see how with each turn in the road we become stronger, have more of a voice and can make a greater impact in our kids' lives, those around us and the TSC community as a whole.