be still and know: even when it looks bad.
The last few weeks have been so strange for me.
It’s like I’ve entered a twilight zone. I’m not sure if I’ve grown or given up somedays. I’m torn between resting and feeling the urge to do something, say something, pray something.
But I’m learning to be still. Abba God is speaking this over me again and again.
Photo courtesy of Apple Blossom Families
Florence has been hitting some road blocks as of late. She’s struggling with acid reflux/gagging/dry heaving/occasional vomiting. We have put her on medication for acid reflux, something that saddens me because she never had these issues before her GJ feeding tube was inserted. But my hands are tied. So we give it to her, hoping it helps. No wondrous turnaround as of yet. We have also switched her formula to see if that helps, and so far it’s only made her more gassy and the ingredients have made me nauseous. Her “real food” formula was much easier for me to accept. We may have to switch again, multiple times. It’s always a juggling act. Do we remove this and add this, mix this or double this?
She is unable to play with her toys like she used to. Now, her little fingers just wrap around the edge of a toy that’s hanging in front of her. She shakes it gently, stares at it. I know she is willing it to do something spectacular, but she can’t. We put her hands around foam toys, bring them to her face, smile and cheer when she holds it for a moment. I feel a rush of joy when I see her bring a finger to her mouth. She must be teething, mustering all her strength to bring some relief to her gums, or to just play. She loves Elmo desperately. I indulge her, and often. We also lay outside, watching the clouds. We place ants on her tummy, catch a bee in a jar, let her hear the buzz and see the frantic yellow and black. Her feet touch grass, I wrap her hands wrap around a baby doll. Sometimes we spend an hour in the bath, floating, feeling somewhat weightless. And somedays, I am just so tired of trying, and we cuddle on the couch, I smell her curls, growing faster by the day, and we watch the screen sideways, giddy with joy when we hear Elmo’s theme song. La la- la la, la la- la la. Her tummy bobs up and down, every part of her is smiling.
Florence has also been having a hard time swallowing her saliva in a more upright position. She can’t seem to tolerate being in the Tumbleform chair for long. In the standing frame, often I need to suction her now. The other day, I took her for a walk in her Uppa Baby Vista Stroller, as reclined as it could go (which is still somewhat upright) and she choked. She choked on her own spit in the grocery store. Bubbles erupted from her lips, cheeks went reddish-purple, eyes watered. I opened the fridge door and put back the cream I came to buy, slowly, and then I went into action and raced out the back door of the store, yelling “excuse me, it’s an emergency!”. Men were unloading boxes and there were stacks of red crates. I looked around frantically for somewhere to lay her down. Should I put her in a crate? I tried to move. I yanked her out of the stroller, her limp body hanging over my shoulder. I’m sure the men thought she had fainted. One asked if she needed water. She can’t even drink water, I thought.
“She has a condition” I whispered, “it will be okay, I just…”
“Maybe try the grass?”
I had not even seen the grass, dirty as it was with litter and bird feathers. I threw her little blanket down, all wrapped up in itself and laid her down on her side, patting her chest, breathing with her, whispering words to calm her. She was probably so scared. I just want to be home, I just want to be home, I just want to click my ruby reds together and be home. It is safe there.
After a few moments I put her back in the stroller and began walking home, trying to feel as normal as possible. We were almost home, maybe two blocks away and she began to sputter again. Halfway up the huge hill, I pulled her from the stroller again, threw down the blanket on the brown leaves, felt my whole being cry out “this is not normal.” I made a noise, like a wounded animal, and felt myself on the edge of hysterics. But I took a breath. Be still. She is scared too, be still for her. I think I sang a song. And then we were running home, sweat pouring down my body, heart pounding until it hurt. But we were home, and I lay her on the sheepskin and collapsed my shaking body on the carpet. We didn’t move for hours.
This is not normal. But be still.
I see her weakening, I see the bad in this. I know her little body probably cannot handle a big cold. I know we could very well be in the hospital again, with cold and flu season just around the corner. Oh, the whimsical summer, how fast it passed us by. It is the safe season, and it’s nearly over. But I don’t dig my claws in and will it to pause. There is a season for everything, and this season is changing.
It feels impossible somedays, to hold onto hope with more and more being stripped away. Oh how I raged against the machine of SMA in the early months. Oh how I fought, and how anxiety wrapped it’s web around my heart. Fear made me sick and tired. I hold onto hope now, not control, knowing that God is in charge and yet none of this is okay. Surely He will come to us like the rain. Surely goodness and mercy will follow us all of the days of our lives. Surely this is not His will, although it is happening. Guess what, tragedy can be made beautiful by the Lord, but He is not the author of tragedy (thanks Bill Johnson). I am sitting here now, palms wide open, old fears of colds and death, no longer haunting me. And in all honesty, I wonder: have I given up? Is that what it feel like right before a storm? Is this what it feels like before a breakthrough? Where are we going, God? This is so far from my control, and as her mama, this is so heavy and the waves seem so large. I can’t seem to protect her from this life, this life of colds and flus, of taking breaths and swallowing. She is just so very fragile.
Am I learning to let go? Yes. To let go of her? Yes. Am I learning also, that nothing is impossible? Yes. I’m learning that I need the prayers of the saints more than ever. I’m learning that each day with her is precious beyond words and valuable and yet I do not anticipate death. I think this makes living impossible. And so we go forth, into the wilderness. I am a pilgrim, singing songs of freedom and hope in the desert place. This, this is not normal either. Eyes fixed on Jesus. Heart still and at rest. Sometimes I think, “you need to do something! you need to worry and pound the earth and cry and panic!” My mind tells me I’m doing something wrong. I must fret.
But my spirit knows, the patterns of this world do not create a beautiful portrait of His faithfulness and goodness. My spirit knows, not to give up.
We must set our minds on things above. And ask, again and again, that God would renew our minds, that we would drink of and understand His peace, understand that it’s a covenant and it cannot be broken.