When Joy Isn’t Winning; Learning to Rejoice in the Work God is Doing

I want to find joy in the journey. I want to share a joy filled life with my husband and children. I want a closer relationship with God. All of those things are truths about me. They have been for a long time. It is hard to find joy right now. I am sad and grief has filled my heart.

There is no other way to say it. My son is losing the ability to walk. It makes me sad. When his legs are hurting and aching at the end of the day, it makes me sad. When he wants to try to run and I have to tell him no because he might fall and he cries, it makes me sad. When he falls, it makes me sad. When I pick him up at the end of the day and he cries, it makes me sad.

I never wanted to let my child’s diagnosis change me, but it has. I’m not the same. This transition is very hard for me. Walking is not it. It, is that this transition, to me, marks the beginning of more hard transitions and I can’t stop thinking about where that will lead. No one diagnosed with the disease has survived. I am grieving for someone I haven’t lost yet. Some call it anticipatory grief and it is real.

Joy is not winning right now. Sometimes life is harder than it should be and I feel like I’m in one of those times.

I have said many times that I think of joy as a mathematical equation. That the sum of all the little joys, when added together, is bigger than Duchenne or whatever it is you are carrying. Right now, Duchenne feels bigger.

It feels like it is this huge boulder sitting on the end of a teeter totter. It’s huge and massive. I have all these little joys sitting on the other end, but they can’t lift the boulder. It also feels like someone, the enemy, the evil one is holding it down with a vice, a death grip. I keep piling the little joys, but the teeter totter won’t move. I was recently describing this to a group of women at a bible study for advent. One of the women said she could see it and she could see Jesus coming down to stand on the joy side. I think she is right and I have to wait for Jesus.

I’m no artist, but in my notes I attempted a drawing of my teeter totter.

To battle these hard feelings, I’ve leaned into the Lord. I took a break from social media. I am spending time each day in adoration, bible study, scripture, prayer and listening to podcasts. I recently listened to a podcast that talks about God putting you in a pause. There is a reason that God wants me where I am. There is a reason it is taking longer than I want it to. God has a reason for keeping me here.

I want to embrace that pause, or this storm. My blog is called weathered storms because I write about the changes that happen in my life from weathering storms, it winning them. My entire house has a rustic, vintage old farmhouse feel to it. When I find an old, weathered anything I fall in love with it. When God is finished with me I want o be in love with me and His process.

I keep wondering why this is happening over the holidays. Why do I feel this way during advent? Joy should be winning!

I am working through an advent study called ReJoice! Advent Meditation with Mary. During that study it was pointed out that Mary, especially in the beginning of her pregnancy, had no proof that she was pregnant. She had not been with man, she was not showing, nor was she experiencing symptoms, but she believed. She rejoiced in the work she knew God was doing, even when she couldn’t see it. Maybe I’m experiencing this now so that I can learn to be like Mary, so that I can learn to rejoice in the work God is doing, even when I can’t see it and don’t know what the work is.

I’m learning, thanks to another podcast, is that there is a fine line between falling into despair and experiencing grace and mercy. The joys, the little ones piling up on the high end of the teeter totter, they are my fine line. There are days I don’t look for that little joy to keep me from falling into despair. Now, that I have learned this new perspective, I hope to be better at it.

Duchenne is a big and hard thing, it is a big part of my life and joy is not going to erase that. Joy will fill be life with light and laughter and it will allow me to rejoice in the love I give and receive. There is more of all those things in my life than there is Duchenne.

I have never been one to accept or ask for help. An amazing thing about God is that He knows everything in my heart and despite all my shortcomings and sin, He loves me. I am His Beloved Daughter. He grants me the grace and mercy I need each day, even without my knowing what I need or when I need it. It is there even when I don’t look for it or see it, it is there. I want to rejoice in the work God is doing.

The last two weeks God has sent me an army of nurturers, all of whom have been women. It seems somehow perfect that during advent, it would be all mothers, all saying yes that would be my path back to Joy. I’m sure they had no idea how much grace and mercy they were delivering.

Last night as the evening rolled to an end and I sat holding my sleeping Mary, she’s been a sick little girl, I watch a burning candle. I noticed that the flickering of the flame was reflecting off a gold Christmas tree sitting next to it. The light was dancing in front of my eyes. I smiled. It has been a few weeks since I noticed something so small and felt it. I took a deep breath and felt weight lift off my shoulders knowing that I don’t have to count all the joys this advent season, I only need to rejoice in the work God is doing.

It is hard to see, but light is dancing on that gold Christmas tree.

Thank you for the hug in the grocery store Erin. Thank you for thrifting for vintage Christmas and thinking of me Carrie. Thank you for the message to keep going harder Mrs. R! Thank you for asking me to make a Christmas wreath Nicki and Heidi. Thank you to all the women at mothers group who have sat with me while I cried and let the Holy Spirit work through you. I am learning so much from you.

I know I am not the only mom out there grieving, I hope you know you are not alone and this comforts you in some way. It’s okay to feel the feelings your are feeling and it’s okay to talk about it.

I know there are moms that want to help others find their joy. I hope you realize it doesn’t take much, a little note or hug goes further than you can imagine.