There Is So Much I Don’t Know


I ran into a momma the other day that I hadn’t seen in years.

She knew us before.

She had absolutely no idea what our life looks these days, had no idea about my son’s diagnosis or any of the realities associated with it – she had no idea at all.

She told a sweet story about my son, I smiled and thanked her for always being so kind, and it was genuinely good to see her.

But when I left and headed home, back to my son and back to our new normal, I could feel waves of grief starting to wash over me. I pushed them back, determined not to cry in front of my son, determined to get dinner made as planned, determined to shake off the sinking feeling.

I made it to bed time.

As soon as my youngest was in the bath and jabbering to my husband about Minecraft, I rushed into my bedroom and locked the door as the tears started to flow.

I was so, so sad. The truth is, I miss the little boy my friend described. I miss that he used to be so much more capable, not only socially but also physically. I miss not worrying so much about his future. I miss not worrying so much about his present. But mostly, I miss the little boy who sometimes seems to have just slipped away from me.

I went into the bathroom to wash my face, pray and try to get myself together. For the first time in a long time, I just couldn’t do it. I couldn’t stop the sobs welling up from a place in my heart that carries a dull ache mixed with hope in it all the time. I was completely overtaken and undone.

I curled up into a ball on the floor and just let the pain come. I realized, there on the cold floor, that when the sorrow comes now, it is also always mixed with something else – acceptance.  When the hurt is so deep I feel like I can’t breathe, it is also always met with a renewed gratitude – “At least now we know, now we can help, now he can just be the way he is meant to be.”

My son is headed to the hospital this week for testing. I am not sure what we will find. I am not sure if I will be told I am overreacting and too protective (because we know that happens, even when something is really wrong), or if I will be told he has a life-altering condition that will further complicate how he lives and how we function (his doctors have already said we are headed for this, but somehow, it feels slippery – without the actual diagnosis, on paper, I just can’t fully bring myself to go there).

photo19 There is so much I don’t know.

But what I do know is this – one day, long after this appointment has come and gone, I may look back on this time frame and miss it (just like the longing I felt lying on the bathroom floor the other night). Because although the waiting and the wondering is tough, sometimes not knowing is easier. Not knowing means you can keep holding the picture in your head about how you want it to be. Not knowing means you can still imagine all the other possible causes, the easier ones, the ones that won’t potentially cut my child’s life short. You can create an endless stream of medical interventions.

There is so much I don’t know.

But what I do know is this – God has this child, lovingly in the palm of his hand. I have seen it, felt it, witnessed it, and experienced it over and over again. Whatever is next for my son will not change that. If anything, whatever is next will bring more and more glimpses of radical grace and crazy love. I know this – all the way down to my toes, I know this.

There is so much I don’t know.

But what I do know is this – my son is amazing. He is wicked smart and so funny. He is affectionate and caring. Nothing the doctors will say, nothing that is prescribed for treatment, nothing that is written down in the chart will change my son’s ability to make his brother laugh, or make my husband smile, or make my heart burst with affection for him.

And this knowing matters more than any diagnosis. This knowing makes up the fabric of our everyday, and gives me the strength to take the next step, and the next, and the next.

This knowing means I can fill out the endless paperwork tonight and not worry about the amount our insurance will or will not cover.

This knowing means I can go lie down with my son right now and listen, really listen to all things salt water aquarium. It means I will smile and genuinely enjoy the time with him.

This knowing means we will be fine this week – no matter what, we will do this and we will do this well.

This knowing is what makes me his momma.

This post originally appeared on Not the Former Things.

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