I have officially turned into an antisocial hermit! Despite my flaws in responding to texts, calls and emails from friends and family, I have become a pro at running on 3-4 hours of sleep per night, juggling a full-time job, managing appointments and services AND (trying) to keep it all together, (which is hard for any parent, let alone a parent of a special needs child.)
The fall always begins the downward spiral into my winter hibernation mode, which is the hardest season for me. I have an extremely difficult time with the constant darkness, not only because I am blind at night, but I hate the cold, snow and any temperatures below 68 degrees. Fortunately, I was able to survive last winter by relying a LOT on Derek, since he wasn’t working full-time hours. Derek finally got his license and a full-time job! This is his first official salary job that he’s had since we first met, which is a HUGE deal for our family! Though it’s less hours he will be at home, I am so happy that he’s finally found a job that he is passionate about and that he doesn’t dread going to every day.
This past Sunday, our pastor at church delivered a sermon that was especially applicable to our family’s situation. The sermon discussed faith- where it comes from, how it is a personalized experience for each person and how one finds it on their own (or sometimes with help). I’ve never been much of a “religious” person per say, partly because it felt too ritualistic for me, but also because I never fully felt like I was comfortable expressing my beliefs.
Faith isn’t easy to find and it certainly isn’t easy to maintain, especially when life throws trying times at you. In the beginning of our diagnosis search, I had a lot faith. Faith in believing that we would find out what is wrong with G and that we would get the help he needs. Even today, 700 days later searching for answers and enduring no sleep, getting hit, kicked, bit, grabbed and head banged, we still find a way to maintain our faith. It would be a huge lie if I said that there aren’t times where I am so angry at God and myself because I don’t have a “normal” son. I used to pray for the day that we found the right combination of meds for him, hoping I could have a stereotypical “mama’s boy” someday. Yet, our situation continues to get more difficult as Greyson continues to grow and get stronger, and his aggression and temper continue to increase. He is transitioning between seizure meds again, which has proven to be our most difficult struggle at this time, but the sliver of hope that we will find something that works, is what keeps us going. I try to see positives in every single situation possible, but more recently, I’ve been losing that momentum. 3 years of little-to-no sleep, my own medical issues, juggling work and managing a list of weekly appointments, has begun to catch up to me. I attempt to put on a happy face and appear that I have everything under control, but in reality, I am a mess on the inside. The extreme stress of it all is ruining my overall health, my relationships with almost everyone I interact with and has me in a constant state of exhaustion.
700 days of this journey. Even typing it feels overwhelming. I’ve managed to forget my guiding force behind our journey: there are families going through far worse than we are.
I need that reminder tattooed on my forehead or something. We have so much to be grateful for and the sermon from Sunday reminded me of that. We have our difficulties, but our child is physically healthy (for the most part), has happy moments and is the sweetest little boy around. We also have a brilliant daughter who is on her way to become the first doctor in the Smith/Martin/Zanowski/Redcay family line. We also have a dog that literally drives us insane and ensures daily abuse from Greyson, but he continues to adore G and puts up with his aggression to keep him safe. So many blessings we have! We know the hard times are testing, but a daily reminder of the positives, is what will keep our faith, and our fight alive.