Refined with Fire: Trials, Hope & Faith
I’ve been quiet lately. I sat in the Women’s Bible Study yesterday and didn’t say one word. In fact, I was the only one who didn’t speak as tears quietly filled my eyes. I want to shrink back at times and simply disappear.
We are studying 1 Peter and were talking about faith, hope and about trials, and how we, like gold, are refined with the fire. We talked about how Jesus is with us just like he was with Shadrach, Meshach, and Abednego as they stood in that fiery blaze. As I got into my car to drive over the hospital I heard a song come across the radio. I later found out it is called “Jesus” by Chris Tomlin who sings,
“Who walks on the waters
Who speaks to the sea
Who stands in the fire beside me
He roars like a lion
He bled as the lamb
He carries my healing in his hands
If you know me in real life and I’ve been stand-offish – it’s not you, it truly is me. This Summer has thrown us a lot of curve balls. I kind of feel like I’ve been in a storm system and each time one storm passes another one starts up. It is during these times that I kind of retreat. I have retreated from a lot – in some ways, I try to escape my feelings but in other ways, I must work through them.
As I write this, I’m curled up in a chair off in the corner of my son’s hospital room. He isn’t sick but he is in for a continuous EEG which includes a sleep study to watch for nocturnal seizures. This isn’t the first time Adam has had to be in the hospital. All of his stays have been relatively minor compared to what some children go through.
As he asks me to help him up so he can use the restroom, I watch as he walks stiffly to the in-room bathroom. I grab the many cords that are attached to his head so that that they don’t get knocked lose or trip over the longer cords attached to him.
Watching him walk, I remember suddenly him as a baby. I was 22 years old and he was the most perfect thing I had ever seen. Somehow I was blessed enough to have created this tiny being. Like a moment frozen in time, I remember my younger self holding him in my arms and counting his fingers and toes.
He stands at the sink to wash his hands and I see my reflection behind him in the mirror. As I catch this glimpse of myself I remember that even though I’ve been on this journey with him every second of the way from the moment he started losing milestones to the days of “behaviors” that made me question how any of us could make it through, that it was still me that someone how caused this – through faulty genetics. Genetics that literally nobody else in my family tree seems to struggle with.
I pause and remember the days. The good days and the bad all flee through time like a giant blur and suddenly we find ourselves here on this day. He is going to be fourteen in a few months. We are still trying to put pieces of this puzzle together.
In these thirteen years, we have tried desperately hard to treat him exactly like our other children who one by one made their appearance…the older three are all roughly two years apart with Adam being in the lead. We treated them the same for so long but suddenly his siblings are surpassing him in many, many ways. Parenting is hard enough – parenting through special needs can be brutal… always wondering what is next and never quite knowing what path we are on … never quite grasping what to expect or what the right parenting decision is going to be.
As the school year began I realized how different and how similar he is to other 8th graders who are interested in dating, thinking of careers, and counting the years left until they get to drive. Just when I start thinking he is still so much like a second or third grader and then he asks me when he will be able to drive, or tells me about a girl he calls “his girlfriend” my mind wanders into a sadness for him.
This feeling of sadness hasn’t swept over me since his pre-school years. I can’t compare him to other kids but sometimes it catches up to me. I wonder what he would have been like if whatever this is hadn’t taken hold of him all those years ago. Just when I think I have accepted where we are, I find myself doubting.
I try to hold back tears. I long for him to have answers and to have help not because of our shattered dreams but because of his. And because of the others – so many other children and families that do not know what has happened but their child has regressed, lost milestones, changed.
We need to fight and fight desperately hard. Nothing has changed. We’ve been fighting this whole way. His life’s journey has been one battle after the next whether it is fighting with doctors for answers, with the school district for correct placement, fighting through the therapy, combatting fears, battling against unwanted aggressions or other behaviors that rock our family and our son … we have never retreated quietly but we will wage war against whatever is stealing our child and replacing his joy with anguish. Through all this… faith grows. Through all this hope is never defeated. Through all these trials one thing remains… love.
Today, however, I see him for who he is now. He is still and always will be Adam. On his good days, he is a funny guy who likes to make jokes and is fiercely competitive in a multitude of games (including but not limited to Monopoly, Uno, and Ludo). I don’t look at him and see his disability. I look at him and see right through that to the person he has become. If you talk to him about something he is interested in he will engage you in conversation. If you offer him cheese pizza, he will be your best friend.
He lies back down in his hospital bed and I relax in my reclining chair. Suddenly the life within me leaps. I remember that in a few short months we will welcome another sweet boy into this family. A boy, we now know, might carry the same genetic abnormality that Adam has. And I am not afraid. I am determined to fight for answers and at the same time I am holding on to the hope I have in Christ.
I’ve recently been holding onto this verse.
For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. Colossians 1:16
We won’t know potentially for two years if he has the same disability and if he does how it will affect him. I know deep down that he has been formed by God in his hands for a specific purpose. Just because I don’t fully understand it yet, doesn’t mean his creator doesn’t.
Jeremiah 1:5 has been another verse I have clung to for the past few months:
Before I formed you in the womb I knew you,
and before you were born I consecrated you;
I appointed you a prophet to the nations. Jer. 1:5
And lastly, Ephesians 2:10 says:
For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them. Ephesians 2:10