Unconditional

So, Jon will save something on TV about dementia and he knows that sometimes I can handle watching it and other times I feel like I’m living it enough that I don’t want to hear anything about it. I thought I could handle this one on CBS 60 Minutes about Frontotemporal Dementia. But boy if I had a punching bag I can guarantee it may just be pulverized to bits right now. I’ve written more than once about circling through all the stages of grief over and over and right now I can’t lie when I say I’m so angry.

And this is why…

"FTD (Frontotemporal Dementia) attacks people at the very soul of their humanity."

"This is profound as anything that can happen to a human being. It robs us of our very essence, our humanity, who we are."

Almost 3 years since Dad was formally diagnosed with FTD. He was 64 at the time but hindsight tells us things were going on before that. I had conversations with Dad more than once - but one time using that exact word, essence. In the moment I wanted so badly for him to feel loved, to know that I couldn't possibly love him any less because of this damn disease. I told him that this disease has not stolen the essence of who he is, it has not stolen the good person I love.

And yet, this is where I have cursed God and want so badly to punch a wall because I have come to learn and understand that this disease in particular HAS stolen his understanding and belief that he is a good and kind and caring soul. I have had to try to wrap my brain around the fact that he is not the father I know and there is nothing I can do to help him believe and understand and remember his good and kind and caring soul. I mean, why would God do that??!? I have told Jon more than once lately what scares me the most is Dad leaving this world not having the capacity to remember how truly and deeply loved he is. That.Absolutely.Breaks.My.Heart.

And it makes me so angry. I mean, I know I can’t play God and that ultimately Dad will be whole and in the presence of a love that not even I or anyone here can give him. But right now, I just want and need to be mad that even in all my trying, it can’t be me. And it makes me so angry because it’s stolen the opportunity for him to be the Grandpa he was designed to be for 5 little girls. And it makes me so angry because of how his career, and the call as Pastor he was made to live out, was stolen away from him. It makes me angry because my Mom no longer has a husband and in many ways caregiving for him has also stolen her from me.  And it makes me so angry because it has stolen my Dad from my siblings and me. I miss sending him an email or being able to call him when I need some advice or his gentle reassurance to stop trying so hard and just be. And I’m angry that I speak of him in past tense when he is still here.

When I became a Mom I thought I had learned all I was ever going to learn about unconditional love. What a fool to think I was done learning that (and I know they will continue to teach me about it). However, if there is some way to see some sort of good in this (and trust me when right now I say that through gritted teeth), it is the unconditional love and grace I have learned in walking this journey.

Because when I think I can’t get any angrier with God, when all the odds are against us with this disease, when I’m frustrated that I can’t be with Dad every day, when there are so many days of my own self-doubt… Man, He heaps more love and grace unto me than I can comprehend. He loves me more fiercely even when I’m so mad at Him and I don’t want anything to do with Him anymore. He forgives me when I curse Him. He forgives me when I yell at my kids or get frustrated with Jon for no reason other than deep down I’m sad and mad and scared. He reminds me that “When I pass through the waters, He will be with me.” (Isaiah 43:2)

And because of that love, I will love my Dad more fiercely tomorrow than I do today and every day thereafter whether or not he remembers/believes/understands.