Two years ago, I posted this picture on my Facebook page. It’s an excerpt from Matthew 17:20. “If you have faith as small as a mustard seed, nothing will be impossible for you”. I posted this as I clung to hope for an impending miscarriage. The whole verse is: “Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there,’ and it will move. Nothing will be impossible for you.” In that moment of my life, I thought I could will a miracle and until the miscarriage was over, I held on to hope.

Now, here I am, at His mercy trying to will a cure for Jackson. My friend, Rebecca Smith, introduced me to a song by Hillary Scott – Thy Will Be Done. It’s a beautiful song that was written when Mrs. Scott suffered the loss of her pregnancy.

As a Christian, I wish that I had unwavering faith ALL of the time but I don’t. I’m flawed and human, and I probably challenge God way more than I should. I get angry with Him, sometimes I even give Him the silent treatment, I feel resentful, unheard, ignored, and I want to be in control.  There are moments when quite frankly, I’m pissed. I know, I know, you aren’t supposed to be mad at God and if you are, you probably shouldn’t say it out loud or admit to it. I know He hears me. He knows me, better than anyone. He knows my broken heart. He knows I’m scared for Jackson, for the impact of things on my daughter, for my marriage, to lose the roof over our heads. He knows how fiercely and deeply I love my children, so why them?  I may never know the answers but when I’m starting to feel lost again, I hear those words replay in my head – THY WILL BE DONE. Then I have to remind myself – He is God and I am not. It’s one of those things that, of course, I know but it’s hard to accept that I’m not in control. I don’t get to call the shots in my story, in Jackson’s, or for anyone else. I’ve been given this life and I have to try my best to be a good steward of it. I can pout, stomp, and shout all I want. It’s doesn’t change anything. When I’m done with my tantrum, it’s still there – Thy Will Be Done.

There are some days, here and there, that I can’t see past the struggles. I suspect all parents of chronically ill children have those days. I have my fair share of moments in which I dwell. When people ask “How are you?” – you rarely tell them the truth. You put on the brave face and smile so they don’t see how broken you feel.  I think the mustard seed text speaks to those moments. Not the moments when life is going perfectly and my faith is the size of a football field. It’s my low days, when my faith is shaken and diminished, overtaken by self-pity, that it may truly be as small as a mustard seed, that I need to be reminded as long as I don’t give up, nothing is impossible. It’s easy to dwell when everything seems so unfair and you’re surrounded by unanswered prayers. Those days and moments are typically the exceptions rather than the rule but they are a real part of this journey. Not every day is a walk in the park, smelling roses, and chasing butterflies.

There are nights when I am so tired. I hear Jackson cry or his CGM alarm goes off. I jump out of bed like a well oiled machine. I have one eye open, navigating by memory to his crib. Trying to check his sugar in the dark. Half of the time not getting enough blood on the test strip, getting an error on the glucometer, then having to start all over again, all while trying to be a stealth ninja and not wake him. Those nights are my “normal”  But, when it’s time to rise and shine and start our day, I drag my tired feet, walking into his room to pick him up, and out of no where, like a lightening flash sometimes, God’s grace SMACKS me across the face and I see it. I see the grace in my son’s eyes, in his hugs, his resilience, the precious moments spent laughing and tickling him,  the excitement he gets when he catches my attention from across the room, when he smiles at a nurse after she’s been holding him down to put in another IV line, when he makes a stranger smile just by looking at them. I see the grace.

Jackson has taught me so much about life. His struggles teach lessons to everyone around him. He may not change the entire world, but little by little, this kid changes the world around him. I can almost promise you that my disagreements with God are probably not over. We have a long road ahead of us. The only thing that is a certainty, is God is in control and is driving this ship. On my worse days, when my faith is so little it can hardly be seen, I’ll continue to believe that all things are possible and I will remind myself of the beautiful grace He’s given me, which I fall short of deserving so often.