from the heart: how letting go allows me to truly live.
After all this trauma, in the past year, and the past three months specifically, I’ve learned a few things about myself.
We’ve been in the hospital twice in three months, once for five days, and the most recent trip was seven weeks.
When we were being admitted to the ER, I thought: This is it. She’s dying. This is how it happens in the movies. The bright, white lights, the ringing in the ears, the inability to cry or even move. I knelt down beside her bed, out of the way, and felt myself go into a deep sleep. I actually startled myself awake in the midst of it all, nearly falling over on the floor.
What am I doing?! I was shocked at myself, at my body’s way of protecting itself. Just shut down. Just go to sleep. And then they took us into another room and mentioned intubation. We shrugged it off, how absurd, she’s just scared, she’s afraid of you people, just let me hold her and nurse her, and….
Ok, no intubation yet, we will try Bipap and oxygen. I slowly sipped my orange juice that some kind nurse gave me, afraid that I would vomit or faint on the floor.
Some time later, they told us they were going to intubate her. We just nodded.
I didn’t cry, but I can’t quite remember. I just held my stomach, which was cramping and churning, and focused on breathing. My chest felt so heavy, and each breath was a reminder of how hard it must be for Florence to catch her breath.
Rewind a few weeks:
I’m on the kitchen floor. It’s a stormy day outside, nearly raining and gray. My fists keep pounding the chipped white linoleum. If I could arch my back in anger I would, I think, although I forget what that feels like since I had titanium rods screwed up and down my spine 11 years ago. I slap the floor with my palm, feel the tingling. I see an ant, and a strand of hair and dust bunnies under the kitchen table. I pound harder and swear. I swear at God, even though I know I shouldn’t. I yell at Him. I tell Him awful things, things that aren’t true about His nature, but I tell Him anyway. I say: I cannot go on, I cannot take any more. And I hear nothing. I get angrier at this. I cry until my voice is hoarse and then the wind dies down. I sit up, shoulders hunched over.
It’s not supposed to be this way…it’s not supposed to be this way. And then I cry again. This time I fall into His arms, and let Him hold me. It’s not supposed to be like this…My grief doesn’t escalate, and I feel Him near. There’s no trace of anger or judgement towards me.
And yet I don’t feel much of anything at all. I don’t feel a warm wave wash over me, or even indescribable peace. I just am. On the kitchen floor. I just am…thankful, that the grief is subsiding. Thankful that my ranting is done. Thankful that my heart feels empty of anything. The fan blows the dust bunnies towards me, and I feel like I should wash the floor soon. I make some tea, and wait for Florence to wake from her nap.
This is the day for me. This is all I accomplished.
Fast forward, back to the ER. Just when I thought the shit couldn’t fly any further or hit that fan any harder, it did. Life is like this sometimes. Even though I confessed that I could not go on. I did.
And there was fruit. My ranting is done. I haven’t cried too much or yelled like I did in the past. I haven’t been angry at God. I feel as though I’m finally growing up, eating spiritual meat instead of milk.
And this is what I’m learning:
I am in love with Him. And when I confess that in my weak moments, when I say, “Jesus, I just love you,” instead of “I hate you,” or “Why are you doing this to me?”, I feel relief. And I actually mean it. I love Him like I love my husband. Finally, I feel relief. He is in this, but He’s not controlling it. He’s not tossing us into the pit of the Emergency Room and saying: I’m doing this for your own good. He’s not abandoning us to our fears and walking away. He’s not giving Florence a cold that she can’t handle. But He will use it all, even though in the moment I can’t see it. And He will grieve with us, and one day, He will restore us.
He will turn our mourning into dancing. He will redeem us. He will help us. He will carry us through the grief, and carry us through the joy.
If Florence dies, if she perishes, we will not. God will shelter us. These are not just words for me. This is a (painful) truth that I have learned. No one wants to think about their baby dying. No one wants to imagine it. But I have. I have looked at death and said: You will not destroy us.
And I have looked at her life and said: He parted the Red Sea. He heals the blind, and makes the crooked straight. Her life, although it’s not full of scraped knees and finger foods and first steps—her life has meaning. And whether she can move a muscle or not, she has life. She has a spirit and a soul. And whether I see her run here on this earth, or in the wheat fields of heaven, my hope is in the Lord.
I have looked at the statistics, and said: You will not own us anymore. You see, the statistics for Florence and for our chances of having another child with SMA, they owned me. They drove my emotions. And yes, they still sometimes do.
But, this is my story, this is my song: I will praise my King, no matter what. Not because I have to, but because He gives me life, and He sustains me, and I want to. I won’t give up. Not on Florence, and not on the Lord, since He has not given up on us, and I know He never will.
He will make the wrong things right.
This is His promise to us.