Aedan turns this on at night when he is scared, he says it let’s him know Daddy is with him. And with it he feels safe.
I literally don’t have much energy to spare, physically or mentally. This fight against MetLife has really taken a toll and worn me down. No matter how hard I fight, without my disability payments I simply cannot survive this much longer. I think that realization really rocked me. I don’t allow myself to get or feel defeated this completely. In 6 years, this is the second time I had been that state. The first was a year ago – but for the same reasons. I’m simply not getting the help I need. I haven’t cried, not over the bad moments anyway. Nor have I allowed myself to get knocked down so bad that it breaks me or my will. That would only serve to cause a cascading effect.
But there are some things that are legitimately far out of my control. And being unable to afford medical attention, my treatment(s), medical supplies, utilities, food… it’s been almost 3 years now since my benefits have been paid to us.
I had a conversation with God. He reminded me that I wasn’t wearing my shirt. He told me to put it back on.
But that just made me feel worse at first. I didn’t need more fight, I have more than enough fight in me to share. That’s not the issue. I’m in an unfair fight and am powerless against this portion of my nightmare.
I’m not scared anymore – I’ve stared death in the face many times. And each time I gave it the finger – and got back up. But I guess I needed to feel safe.
I have alone time now, so I went into Aedans room and crawled into his bed. I turned the lights out and turned on this nightlight that I made for him. Usually when I see it on the wall, I feel strong. It reminds me of when I made it, what I was fighting against to get my hands/eyes/brain to work and reminds me I did it. Despite the struggles. Even if it did take me a week to do an hour or so of work, I was so proud that I did it.
Today, I sat in dark solitude. I turned this light on and I allowed myself to feel a little vulnerable for a moment, in terms of the fight I’ve been in for 6 years. And then it came.
I found myself sniffing his ‘blankie’ and staring at this light. The love and protective energy I built into this light rained down over me. And I felt what I imagine he does when looking at it. And it changed me.
I found myself standing tall, just like I did when I built this light. I found my ability to at least FEEL strong. And this light reminded me that I MUST survive this.
He doesn’t need a nightlight reminding him of his father. He needs me to be his father, and I can never give up.
So far I am still losing my battle. I am becoming weaker and weaker – my best days fewer and farther between and each best day is never as good as the last. My high water mark keeps getting lower and lower and my body continues to erode.
I’m alive. And as long as I’m alive, I can tell my family I love them. An ability I had not always had – there was a time I was too weak to even speak. I can smell his head now, I can hear his sweet voice say ‘I love you Dada’. I can see his eyes and feel his hands while he studies my face as we lay in bed at night. His hands reading my face like braille.
I don’t have much, but I still can have these moments. And as a dear friend just pointed out, he needs me. Even if I am wasting away.
This light has magic powers – it replaces hopelessness with hope. Defeat with strength. Fear with love. Its rays shine strength and will forever continue to remind me of who I am.
He feels safe during his nightmares because Daddy is always there, even if only through a light. So by the same measure, I too am made stronger by the man who made this light.
I love you all, and thank you for standing by me while I take a knee here.
I won’t let my Son down. I just need a miracle.
Your Brother in Fight,