It's been a bit rough these past few weeks. We haven't sent many pictures to update Jasons Journey on Facebook because really we figure no one wants to see or hear about all of the yucky stuff. But that being said it's part of the journey and I have chosen to share it because as I've thought about how to write this it's helped me. It's helped me to keep in perspective that life is hard on ALL of us and maybe by sharing this someone might not feel quite as alone as I have felt this past month or so.
First off Jasons health is pretty stable right now. Every couple of days or so he gains a pound and that new weight is something we've never seen. But along with this new blessing of increased health has come some new and different challenges I could have never for seen coming.
When Jason first found out about his cancer he fought everything! After his surgery and before chemo and radiation started all he wanted was to be back in school with his friends. I knew he wasnt physically well enough to be there but his will was so strong that I'd send him. It usually went that he'd be there until about lunch time and he'd end up asleep on the couch in his class room or so tired that his teacher would call and ask me to come get him. I'd usually find him in the office at school talking to the office ladies. His balance, coordination and speech had all been affected to one degree or another and regular activities were very exhausting for him. His routine at school continued on and off until the nausea got the better of him and he couldn't go to school anymore. During chemo and radiation he lost control of his bowels for a time and after one perticular bad outing at cub scouts he started withdrawing from public outings. But the desire to get better and be part of his age group and friends was always very strong. As things improved after treatment his body had been through so much that most days it felt like he and I would push that body until it couldn't do any more. After high school graduation he talked of moving out and moving on. Even though we could all see that there were new challenges popping up all around him. His body and mind were fighting against each other and it was only a matter of time before someone would have to give in.
This past year with his health and mental issues, it's felt like we finally saw who gave in. It's been a set back in my opinion seeing his body out weigh his physical desires. Watching him waffle around the 80 lb mark and what poor nutrition has done to him both physically and mentally has been heart breaking to say the least.
But I am just his mother. I have no medical training whatsoever and most if not all of the ups and downs he's had health wise have been new to me. Many times I've been at a loss to know how to help him. I have fought with many a doctor over the years. I'm not the best communicator and there have been many times this short coming has, I felt hindered Jason. It's hard trying to advocate for someone especially when you don't really know how they are feeling. For instance I could see that he wasn't eating, but I didn't know and I had no idea that he was in pain. I had been told that your taste for food changes after radiation, but how much it did for Jason and how it affected him and wanting to eat, I had no clue.
I had a doctor once tell me when Jason was in 8th grade that " sometimes people are just broken, & we can't fix them". This statement has frustrated me to no end. I am not a quitter but when he said that in front of Jason I worried how that would translate in his head.
Jason is NOT a quitter, but he is facing some hard and difficult realities. He's finally building up the physical endurance to be able to do more. But he's also fighting his mind and the toll that all he's been through has put on him. He has extreme anxiety and depression. Some days he feels mentally like he can fly, and then there are the hard days where no amount of pushing or encouraging can help. He is in the depths of despair and feels trapped. He worries like all of us about his future. He gets caught up in the years of being told he's broken and "un" fixable and the self doubt. He gets angry and mad at his family for "moving on". Remember his siblings were all so much younger when we started this journey. He's been dealing with hard things for such a long time. I feel for him for I feel like Jason and I have always had a good relationship. I know the dreams and wishes that he feels have slipped away. But I also know how much he's overcome. For every "you can't" he's countered with, " really, watch me".
He was the boy who wasn't suppose to regain his speech, his ability to walk, tying his shoes, riding a bike or swimming, he was never to be able to do those things. But he never gave up, he never quits.
I'm grateful for people and places that our family has been able to turn to, to try and find peace and healing. I know there are many rocky days ahead but I'm still hopeful. I hope my son will be able to find that inner strength and desire again.
I hope he will be able to see what I do...but like most of us...durning the struggle we tend to lose sight.....that's where we are right now as a family. The hills seem high, and we aren't sure what's on the other side. We are tired, we are weary, we are longing for peace.
I have on my fridge this saying:
It's hard right now when the one bad day has turned in to many bad days. It's hard to not want to quit. In our family lately the stress of so many rough days are taking it's toll. But that's for a different post. I just hope that there are still people out there praying with me and for me to do the right things. That they'll keep praying for Jason. Keep praying that through all of the muddy waters he's going through that he'll find his way. That he won't ever quit and that maybe given some distance and time he will be able to look back on all of this as just a bad day.
