Saying Goodbye

I have frontotemporal degeneration. My cognitive difficulties are not obvious to others yet although that is changing as I lose control over my emotions. I made the difficult decision to turn over my ministries to others. My counselor suggested I spend the time with Brittany while I still can. As hard as it is to give up such an important part of my life, it’s more important that I have time with my family while I’m still able to enjoy them. It’s important to me to be able to find replacements and equip them to be successful while I can do the work of assembling documents and making sure all my ministries continue. There are a lot of them. Some are significant like women’s ministries and children's ministries. Some are less so such as updating the website or sending cards to people who haven’t been coming to church. Each one is a part of me that I’m turning over to others and that breaks my heart.

I started to have second thoughts. Did I give up too soon? I don’t have my next assessment until August. Maybe it’s not as bad as I fear. But when I went to Brittany to discuss it with her, she cut me off to say, “Thank you”. Thank you for putting her first. That was enough for me to realize this is the right decision.

This is the first of many hard decisions that have to be made. When I look at the stages of this disorder, I’m at the last one before needing care. The average length of time between stages is 2-3 years. Average life expectancy IS 7-13 years. It’s hard to say what I’ll be like at each of the stages or when the clock started. I’m trying not to be morbid, but I also want to know what I’m dealing with. It’s not just giving things up. It’s about spending time with my children, my family, while I can still enjoy them.

I’m in the grieving process. I’m currently bouncing between anger and depression. I’m so angry at God. I’ve only been mentally stable for about 5 years. Years I’ve dedicated to serving Him. Now I’m looking at giving up everything I’ve worked so hard for. It seems cruel to be sidelined after working so hard. I know I will make peace with this new way of living but right now I’m so angry. I’m told God didn’t do this to me, but He also didn’t stop it.

So I’m saying “Goodbye”. Goodbye to myself, to my dreams, to my family. I’m not giving up. I’m taking control. I’m taking the time I have to spend with those I love the most. I’m assembling videos and pictures of friends and family to remind myself of the love they show me when my memories fade away. I’m scared. I think that’s to be expected. Right now, I’m finding it hard to trust God but I believe He understands and is patiently waiting for me to return to Him. This is a Goodbye but it’s not the end. My journey doesn’t end with this life, and He will be with me in the next. I feel like I’m dealing with all this alone, but I’m not. Not everyone understands how to help me but they’re trying so I acknowledge the attempts. I am loved. I am supported. That’s all that matters now.

Photo by Nik on Unsplash