be still and know: even when it looks bad.

August 24, 2013, Michaela Evanow, 14 Comments

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.

2013appleblossomfamilies077Photo 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?”

Angel.

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.

romans 12:12

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.

Isaiah 54:10

Isaiah 54:10.

14 Comments

  • Reply Cathy August 27, 2013 at 9:44 AM

    Hi Michaela,

    You don’t know me, I came across your blog through a friend who asked for prayer for you. I’ve been reading your blog and praying for you the last several months. Your faith inspires me incredibly; the hope and peace you share is so beyond what is humanly possible, it makes Jesus seem so much more real to me. As a new mother myself I cry for you. As a fellow believer, I cry out to God for you. Thank you for sharing from your heart. I will keep praying for you.

    • Reply Michaela. August 30, 2013 at 10:14 AM

      Cathy,
      Thanks for taking the time to comment and share your heart, it truly means a lot to me, as do your prayers (more than anything).
      xo

  • Reply Sarah Fairbrass August 25, 2013 at 4:19 PM

    Michaela; I had a hard time reading this post through the tears. My prayers are with you for continued strength (although I don’t know how any Mama could be stronger than you) You and Flo are such an inspiration in love and trust. I adore that she has bonded so with Elmo. He was Chelsea’s favorite too and we had the one that giggled…made all of us laugh often. Sending love and hugs to you all.

    • Reply Michaela. August 25, 2013 at 10:52 PM

      Thanks Sarah. I don’t feel very strong all the time, but if I do it’s grace, and it’s Jesus. My strength died a long time ago.

  • Reply CarrieAnne August 25, 2013 at 10:40 AM

    We are lifting you up in prayer and loving you all from afar. I pray you feel held today.

  • Reply sharon August 25, 2013 at 8:49 AM

    Thanks for sharing…I have a daughter who just before the age of 2 contracted viral encephalitis, causing brain damage…she is gtube fed and also has issues dealing with saliva…I have lived those moments of fear often….Praying for you and your sweet baby….So thankful we serve a God who hears, and that we can trust our little girls to Him, knowing He loves then even more than we ever could. Blessings as you seek to be still and find rest and peace in Him alone.

    • Reply Michaela. August 25, 2013 at 10:50 PM

      Wow, thanks for sharing this. What a journey you are on too.

  • Reply becca August 24, 2013 at 3:45 PM

    this is so beautiful and so painful to read as well, and this is your life and I can’t imagine anyone living with with more intention and conciousness and orientation towards God. I love that Florence loves Elmo and I wish I could see her with ants on her tummy in the grass. We are praying for protection over you guys with cold and flu season coming and just so much grace in the everyday. Love you so.

    • Reply Michaela. August 25, 2013 at 10:50 PM

      I wish you could see her too! Love you and look forward to your words. No pressure 😉

  • Reply Sue August 24, 2013 at 1:42 PM

    Michaela, I would never give up. That’s not what I meant at all- sorry if I didn’t make myself clear. No I don’t think it’s God’s will for you but I try very hard to accept what happens in this life, knowing that God is with me always and loves me, as he does all of us. I think you are doing amazing under very very difficult circumstances. You may not feel that way but an outsider can see it.
    More love to you and Flo!! 🙂

    • Reply Michaela. August 24, 2013 at 2:06 PM

      Thanks again 🙂 I have a lot of people speaking Into my life because it’s out there in the open. Some project things I don’t agree with or say confusing things, and I just feel the need to clarify sometimes. I appreciate you writing me and clarifying too! Oh, the internet.
      Thank you for writing back.

  • Reply Michaela. August 24, 2013 at 1:38 PM

    Thanks Sue. God’s will is so good towards us, and His will is to restore and heal. None of this is His will for us, which is why we press on and keep walking. It’s a mystery.

  • Reply Sue August 24, 2013 at 1:32 PM

    Hi Michaela, I’ve learned that God’s Will and mine are very often not the same but I have to trust and accept.
    Another beautiful entry from you. Still lighting candles.
    Sue

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