Enduring Love

***I’ve held onto this post for well over a week, wondering if I should even share it. I read it out loud to my son the other day, so he could hear it in my voice. Sorry for the delay. Fear, sickness, and vacation got in the way! Thank you to all who read parts of our story and faithfully walk beside us.***

Yesterday I attended a beautiful Celebration of Life service for a 16 year old in our church and community. The last couple of weeks have been especially heavy. When tragedy strikes close to home, to a family that you know, you weep with them and hit the “pause” button as you, too, take stock of the things in life that truly matter. This family has demonstrated a deep faith during these days, one that has both encouraged and challenged those watching from the outside looking in.

As I sat in the service, sandwiched between my husband and my 16 year old son, I sang praises to our God, wept and laughed as the family remembered a son they love dearly, and I cried out to the Lord, begging Him to capture my son–heart, soul, and mind.

This part of my story I share with delicate strokes, because I fear there are parts that are not mine to share. But I’m so fully vested in the outcome, how can I not share? Anyone who has ever parented a teenager knows what a roller coaster it can be. Anyone who has ever parented a spirited soul knows the explosive dynamics of the relationship. And anyone who has ever parented a child who eventually pushes away the things you hold dear knows the agony of watching that child makes choices and decisions with a total disregard to the consequences, both now and for all eternity.

I’ve often heard it said that parenting is holding both joy and sorrow in one hand. So true.

Many people look at our family and see the way we care for our youngest son, who is completely dependent on us for his basic needs. They may not see the hundreds of little things done in a day or week, but they somehow know the sacrifices made in caring for him. But we also carry a heavy, silent burden, that often feels far more intense than caring for a child with disabilities. With Jonathan, by the time he arrived in the world, we knew life would be different. The sheer physicalness of his disability makes it obvious that he needs help. And it is, at times, exhausting–in ways we never imagined. But most people have no clue the emotional toll that continually strikes at the heart of our family, because we have fought for so long and so hard for the soul of our firstborn.

He does not make it easy.

He never has.

Most days, I feel worn by the day in and day out battle within the walls of our home. I always longed for our home to be a place of peace, for our family and all that visit. The reality is…it’s far from filled with peace. I know our home is not the only one. I’m certain countless other families have walked, are walking, and will walk a similar road. I also think most parents with children who fight and struggle just aren’t open and transparent about it. The fight festers beneath the surface, in silence. I am tired of being quiet, feeling alone in this fight.

I love this firstborn son of mine. I’ve told him thousands of times over. I have prayed for him. I remember caring for his physical needs and snuggling when he was just a tiny baby. I watched as he took in the wonder of the world around him and struggled to make sense of it. I’ve seen him bury his tender heart and flare with anger at the cruel unfairness of life. I’ve had a front row seat to the spiritual battle that wages for his soul. And I confess, I often feel defeated.

My firstborn has taught me more about the enduring love of our heavenly Father, when we least deserve it. He’s been a mirror that reflects my sin and my own ugliness. He has taught me that children are unique individuals fashioned by a master Creator, each with their own unique journey. He has taught me that there is no A + B = C in raising children. There are simply too many moving pieces and influences to think that any two children can be raised the same way and have similar outcomes. And he’s taught me that some children have a very winding road ahead of them, with bumps and potholes that we can’t smooth or clear. Their choices. Their decisions. Their consequences. Their search.

I feel like I’ve laid down a lot with him. I’ve surrendered much. Hopes. Dreams. Expectations. Control. I’m learning to see from a place beside him. To be attentive to what the Lord may be doing, when I can’t see the end from the beginning. It’s such an awkward season, though. He’s trying hard to free himself from the constraints of home, but still dependent on us to meet his needs living under our shelter and care. It makes for many tension-filled moments.

As I sit beside him at this Celebration of Life, I wonder what is running through his head. He has a constant flow of thoughts. He just rarely shares them. Many times, I know he’s tormented by fears and anxieties. How do you reach someone that doesn’t want help? How do you guide someone that refuses your instruction? I’ve been asking myself that question as long as I can remember. When he was about five years old, he decided he wanted to ride a bike. He wouldn’t let us near him. He’d struggle and try. He’d wait until we were gone and attempt it once again. One day, we came home and he was riding his bike.

“Look, I did it! All by myself!”

The story of his life. All. By. Himself.

I know that there will be difficult days ahead. Sometimes you desperately want them to learn from your mistakes and not take the hard road. Sometimes you weep because the one you love will have to forge his own path, walk through fire, and come out the other side on his own. I tell myself that God can use this personality for His Kingdom and glory. Tenacity. Persistence. Rebellion. Independence. But these can also be equally dangerous traits.

There is a tenderness buried beneath it all. It’s like he’s some sort of cuddly teddy bear masquerading as a ferocious grizzly bear. I remember another time, also around five years old. We were eating at a restaurant with an outdoor playground. All the kids were having a great time, running and playing and laughing.  We started looking for our oldest. He was at the far side of the playground, intently watching something just beyond the fence. As our eyes followed his gaze, we saw an adult walking down the street pushing a small child in a wheelchair. Not a single other child on the playground noticed what was happening on the other side of the fence. Our firstborn stood there, smiled, waved, and walked slowly down the entire length of the fence with this small child–the only thing that separated them was a chainlink fence. When he came to the end of the fence, he stood there and watched as the pair walked out of sight. Then he skipped happily back to his playing. Teddy bear. Time has taken away the teddy and left more grizzly.

I have no answers. I don’t know the right way forward. But I do hold to Jesus. I hug my son when he lets me. I convey that I’m as tenacious as he is, and I won’t stop loving him. I’m learning what long-suffering looks like. I’m terrible at it. I cry. I scream. I question. I pout.

I’ve asked myself a thousand times over what we could have done differently?! Guilt gnaws at me. But most days, on my good days, I find everything I need in the presence of the Lord. I hear the echoes of His voice every time I talk to my son. The Lord loves me far more than I can imagine. He is patient. He is slow to anger. He forgives. He disciplines. My understanding of these things is so much richer. And yet I still struggle to grasp it!

I know that I’m not the only parent out there who has walked this road. Countless others do every single day. I simply didn’t want this part of me to remain silent anymore. We don’t have many more days with him at home. And, truthfully, I’m thankful the journey has not been easy. I have more empathy. Places of pride have been torn down. I’m wholly dependent on my God. I have a feeling that’s right where He wants me to be. I long for the day my firstborn sees these things too.

For as long as I can remember, I’ve been praying a couple of very specific verses for our son. I remember when the Lord showed me one of them and imprinted it on my heart. He was three years old. I was sitting in the kitchen, the one with my favorite green cabinets, looking out the window into the garden area, praying and reading my Bible. I loved that spot!

“Epaphras, who is one of you, a servant of Christ Jesus, greets you, always struggling on your behalf in his prayers, that you may stand mature and fully assured in all the will of God.”

Colossians 4:12 ESV

This verse is tucked at the end of Colossians. In wrapping up his letter, Paul mentions Epaphras. The wording struck me. He always struggled on their behalf in prayer. Struggled. Wrestled. Fought. That they would stand mature and have full assurance in all the will of God. That’s my role. Battling for his soul, in prayer. Sometimes I get so weary of asking, that I want to quit. And there are seasons, if I’m being completely honest, when I do stop. But God is so gracious to draw me back to this verse and reminds me that though the way may be long, it is my privilege and right and duty to pray on his behalf. I will never stop fighting for him, no matter how hard he pushes back.