4 years and 2 days ago

If you have followed Sonya's Story long enough then you are aware that when I am in need of inspiration or unsure of what I want to write I will read back on previous blog posts.  I typically look back to the same month but different year to see what post I wrote exactly on that day.  So last night I  opened the archives of May 2015 and glanced at each post from the end of the month towards the front.  I saw the title Dear Sonya and since I couldn't remember what I wrote in that letter, I opened it, I read it, and since multitasking is my thing, I cried.  It is fascinating to me that 4 years and 2 days later those exact words would be the same words I would write to her in a letter today.  The pain is the same, the dreams and desires are the same, and the fears are the same. 

4 years and 2 days later the same is true about her doting siblings, except there is one none of us ever met and another one who competes to be her biggest fan.  We have continued to do our best to ensure her quality of life leads every decision we make.  While we have found our secret language with each other it does continue to be a daily struggle making sure we are really honoring everything she wants and not our assumptions.  I feel fairly confident that we are living up to exhausting all medical interventions to help make her life easier.  I wish we could say that we found a way to make the seizures stop, we haven't, however, we have done our absolute best to stick to our promise to not medicate her personality away. 4 years and 2 days later we are still filled with the same doubt, same questions, and same exact sorrow.

The letter is a reminder of all that we lost when we were told of the mutation on her CDKL5 gene.  It is the realization that the time on this journey continues to pass us by, but not much else has changed.  We still pray for the same exact outcomes that we did 4 years and 2 days ago, but the naivety is no longer present, the belief in hope not as strong, and each day is a fight from within to remind myself that we are doing our best, that we aren't failing her, and that "It is not going to be easy, it is going to be a tough road, some days will be a struggle, but WE ARE GOING TO MAKE IT."